Brain Injury Survivors: Narratives of Rehabilitation and Healing 9781685857806

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Brain Injury Survivors

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Disability in Society Ronald J. Berger, series editor

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Brain Injury Survivors Narratives of Rehabilitation and Healing Laura S. Lorenz

b o u l d e r l o n d o n

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Published in the United States of America in 2010 by Lynne Rienner Publishers, Inc. 1800 30th Street, Boulder, Colorado 80301 www.rienner.com and in the United Kingdom by Lynne Rienner Publishers, Inc. 3 Henrietta Street, Covent Garden, London WC2E 8LU © 2010 by Lynne Rienner Publishers, Inc. All rights reserved

Library of Congress Cataloging-in-Publication Data Lorenz, Laura S. Brain injury survivors : narratives of rehabilitation and healing / Laura S. Lorenz. p. ; cm. — (Disability in society) Includes bibliographical references and index. ISBN 978-1-58826-728-3 (hardcover : alk. paper) 1. Brain damage—Patients—Rehabilitation. I. Title. II. Series: Disability in society. [DNLM: 1. Brain Injuries—psychology. 2. Brain Injuries—psychology—personal narratives. 3. Brain Injuries—rehabilitation. 4. Disabled Persons—psychology. 5. Survivors—psychology. WL 354 L869b 2009] RC387.5.L67 2009 617.4'810443—dc22 2009044672 British Cataloguing in Publication Data A Cataloguing in Publication record for this book is available from the British Library.

Printed and bound in the United States of America The paper used in this publication meets the requirements of the American National Standard for Permanence of Paper for Printed Library Materials Z39.48-1992. 5 4 3 2 1

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To my brother, Robin, For lighting the way

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Contents

List of Tables and Figures Preface

ix xi

1

Introduction

1

2

Acquired Brain Injury: What It Is and Why We Should Care

13

3

Learning from Brain Injury

31

4

Living with Frustration and Confusion

55

5

Encompassing Darkness and Light

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6

Discovering a New Identity

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7

Conclusion: Implications for Healing, Policy, and Future Research

147 167 169 177 185 197 203

List of Acronyms Glossary Notes Bibliography Index About the Book

vii

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Tables and Figures

Tables 4.1 A Listing of Subject D’s Photograph Topics, by Camera 5.1 A Listing of Peggi’s Photograph Topics, by Camera 6.1 A Listing of Judy’s Photograph Topics, by Camera

60 87 121

Figures 1.1 Major Themes Depicted by Study Participants 2.1 Simplified Schematic of Treatment Flow for the Patient with TBI: Acute Care, Acute and Postacute Rehabilitation, and Lifetime 2.2 Star Quality: A Patient-Centered View 2.3 Predicting Organizational Behavior 2.4 Differentiated Subgoals 3.1 A Photovoice Path 7.1 Brain-Injured Self Dominates 7.2 New Self and Old Self Are in Dialogue 7.3 A Multiplicity of Selves Accept Each Other

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8

19 25 26 27 33 153 153 153

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Preface

My brother, Robin, suffered numerous concussions as a youth hockey player in the 1960s and 1970s. I hope that this book leads to greater appreciation by health-care providers, family members, friends, policymakers, and brain injury survivors of the many challenges that survivors may face after brain injury—even when the injury appears to be “mild”— and greater empathy for brain injury survivors’ efforts to heal. My study and book would have been impossible without the participation of brain injury survivors willing to share their photographs and lives with me. I am forever grateful to these participants. They have taught me a great deal about living with brain injury and about myself. Two brain injury survivors in particular have been instrumental in my learning and growth. Barbara Webster’s commitment to supporting the healing of brain injury survivors continues to amaze. Laura Foley nourished the seed of my study, worked side by side with Barbara and me to facilitate the photovoice project, and continues to be a good friend and neighbor. The following scholars provided invaluable encouragement and insights into the study that led to this book. I thank Jon Chilingerian for inspiring new use of theory and being willing to guide an unconventional topic and student; David Gil, for keeping me focused on my participants’ perspectives; Cathy Riessman, for opening a door to a world of analysis methods and their practitioners that seems limitless in its possibilities; and Domenic Screnci, for starting me on my researcher’s journey and encouraging me every step of the way. I am grateful to R. Richard Sanders, the senior speech pathologist who agreed to collaborate with me on the pilot study, helped guide the research protocol through the review board, and recruited amazing outpaxi

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tient participants. I appreciate the opportunities he provided to observe firsthand both rehabilitation services for brain injury and challenges endemic to delivering outpatient rehabilitation care under the US healthcare system. Three reviewers provided invaluable comments on the case study chapters as they progressed. Thank you, Dave Genest, Bettina Kolb, and Elliot Mishler, for honestly expressing your opinions and suggesting options. I must also thank the anonymous reviewer of the manuscript. Your insights and suggestions have been invaluable. Funding from several sources was essential to completing my studies and this book. An Ann Ralen Brown Fellowship supported two years of coursework. A Spencer Educational Foundation fellowship grant provided membership in a community of scholars and opportunities for critical reflection on participatory research. The Heller Alumni Fund helped with travel and grants. I thank the Brain Injury Association of Massachusetts for their continued support of the photovoice project and group. I am particularly grateful to the Agency for Healthcare Research in Quality for a doctoral training fellowship in health services research and policy analysis. This book would not exist without the support of my family. I thank my children, Garth and Olivia, for cheering me on whenever I find a new challenge. I thank my mother, Tasha Halpert, for encouraging me to pursue a PhD, and my father, John Lorenz, for continually encouraging the pursuit of excellence. I especially thank my beloved partner Russ (Doc) Dingley for his invaluable technical and emotional support during the research and writing of this book. —Laura S. Lorenz

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1 Introduction

I felt a cleavage in my mind As if my brain had split I tried to match it, seam by seam, But could not make them fit. The thought behind I strove to join Unto the thought before, But sequence raveled out of reach Like balls upon a floor. —Emily Dickinson (1830–1886)

This book is about lived experience with acquired brain injury (ABI), or any injury to the brain that occurs after birth and results in impairments in cognitive, physical, or emotional functioning. Causes of brain injury are many and include strokes, brain tumors, epilepsy, near drowning, traumatic brain injury (TBI), multiple sclerosis, and schizophrenia. In Crossing the Quality Chasm, the 2001 Institute of Medicine report on quality and health care, the authors call for more person-centered health care, or care that encompasses the patient’s experience of illness and health care and the outcomes for which the patient may hope or aim. Rehabilitation from brain injury, whatever the cause, can be complicated by unpredictability and uncertainty about a person’s potential for recovery of function (Gardner 1975). Providing person-centered care is particularly urgent for persons with brain injury. However, the majority of the published research on brain injury concentrates on measuring the injury’s impact on a person’s capacities, for example, memory, ability to function, communication skills, and ability 1

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to work. Frequently, research studies focus on proving the utility of instruments for measuring loss of function. Much research has concentrated on the technologies, providers, and costs related to providing services to TBI patients (NIH 1998). A critical gap in the scientific and research literature is the lack of knowledge about what it is like to live with brain injury.1 After one of the first interviews for this study, I had to drive through the city of Boston (Massachusetts) to get to my next destination. The most direct way involved traveling north through the city on Route 93. The “Big Dig” engineering project was well under way. Route 93’s elevated highway had been pulled down and new tunnels bored underneath, following the path of the old elevated structure. Some parts of the tunnel had recently closed due to falling ceiling tiles. Exits and entrances to the tunnel were under construction. Roads on either side of the main artery were being rerouted. The traffic came to a standstill just a few miles south of Boston. I exited the highway and began to work my way through South Boston, taking back roads I had learned years ago. At least I thought I had learned them. I turned on my audio recorder. I’m not quite sure where I am right this minute. I seem to have ended up in kind of a dead end. I may have to turn around. So, I wasn’t quite as smart as I thought [in going through South Boston]. That’s okay. So, I’ll turn around and go back another way. . . . And ended up, oh, gosh, I’m not sure where I ended up. Little Jack Horner Jokes and Magic. Foundry Street. Maybe I’ll be okay.

I reached Atlantic Avenue and crossed over the Route 93/Big Dig tunnel at street level. I turned the recorder back on. Well, I obviously wasn’t as smart as I thought I was on directions again. Now I’m in downtown Boston during lunch hour. I got a little turned around. Shoot, I may be heading back the way I came! But, not to worry, someday, someday, I’ll get where I want to go. That doesn’t look like it’s going to happen any too soon. Oh gosh. This isn’t working out too well. Guess I just have to be relaxed about being stuck in traffic. . . . [A little later] I think this is the third time I’ve been on this street, circling around . . . and it’s just unbelievable. It seems like I’m going in circle after circle, after circle. And it’s very, very frustrating! [Later] Here I am back again where there’s a stopped car, and a stopped truck. . . . [Still later] It’s hard to get from one place to another. . . . I don’t believe it, this is the fourth time I’ve ended up on State Street. I just, I can hardly believe it, that I got turned around here again. . . . This is very, very confusing.

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I circled around the one-way streets, blocked entrances and exits, and dead ends two, three, four times before finally finding an entrance ramp and taking the Big Dig tunnel to reach my destination. A trip that should have lasted five or ten minutes had taken over an hour. As I learned more about living with brain injury, my driving story— of circling around and around the same (formerly familiar) streets, of feeling quite certain that I knew what I was doing but failing again and again, of taking much longer to do something than I anticipated based on past experience—helped me to understand what it can feel like to live with brain injury, especially when the injury is new. With brain injury, the communication paths in the brain can be blocked, like the city highway and streets disrupted by the Big Dig. Brain damage can slow the usually automatic search for memories or words, ideas or directions. Instead, signals between and among different parts of the brain must take a circuitous route. The signals run into dead ends, one-way streets, and wrong turns. Thought and action get sidetracked and delayed. As one participant in this study said, living with brain injury is like “trying to run on ice without wearing a pair of skates. The faster you run, the more you get nowhere.”

Study Purposes The purposes of the study that has led to this book were to • Gain an understanding of brain injury survivors’ experiences living with their injury; • Use visual research methods to promote researcher-participant dialogue about the experience of living with brain injury; • Uncover new knowledge about personal, community, and healthpolicy issues related to brain injury; • Explore how the study’s methodology and data could inform clinical and research policy and practice and potentially be applied in therapeutic settings.

Background My study took place during a tremendous surge in interest in brain injury in the United States, due to military personnel returning from Afghanistan and Iraq with traumatic brain injury or a blow or shock to the head that

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disrupts brain function. TBI is a silent epidemic in the United States that affects at least 1.4 million people each year and incurs an annual cost of $48 billion to $56 billion (Langlois, Rutland-Brown, and Thomas 2004). An estimated 5.3 million people in the United States are currently living with disabilities resulting from TBI, and 80,000 to 90,000 individuals join their numbers every year (Langlois, Rutland-Brown, and Thomas 2005). Each year, the chief causes of TBI in the United States are falls (28 percent), vehicle crashes (20 percent), sports-related injuries (20 percent), and assault (11 percent) (Langlois, Rutland-Brown, and Thomas 2004; NCIPC 2005; Davies, Connolly, and Horan 2001). No matter what the cause, brain injury can have a devastating impact on the life and functioning of a survivor. Many brain injury survivors can likely relate to the personal consequences described by Jon Prosser (2007:191–192), a noted visual sociologist, after he had a stroke. Brain injury is traumatic physically, mentally and emotionally. I was scared, confused, psychologically damaged and in a state of shock. Emotionally and cognitively I was a wreck. Behaviorally and perceptually I was a changed person. I was angrier, more irritable, tired, impatient, illogical, selfish, and exhibited a reduced tolerance to stress.

Prosser (2007:195) notes that it took him two years to write the article that includes the quotation above. He writes, “I want my brain back but how will it know when I get there?”

Visuals and the Brain Neuroscientist Antonio Damasio (1994) theorizes that our thoughts are made up of visual images. He suggests that the brain stores information, retrieves it, reasons, and makes decisions using visual images. Our brain does not hold or store permanent pictures of our thoughts, memories, or words. Instead, our brain creates images that represent a thought, idea, word, or memory in “real time,” by pulling bits and pieces of information stored in various parts of the brain, at any given moment. Knowledge stored as images is vital to human reason and planning, and new knowledge results in changes in our mental images (Damasio 1994). Damasio’s theory appeared to suggest that participating in a research study that used visuals might help brain injury survivors communicate more easily. I decided to have my study participants “gather their thoughts” and depict their experiences and feelings in photographs.

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Photography has served as a powerful tool for illuminating human experience with health and illness. In her work with families to understand what it was like to live with childhood chronic illness, Hagedorn (1996) used photographs taken by family members to generate discussion during individual and family interviews. Her research suggests that placing cameras in the hands of brain injury participants likely would result in a different understanding of living with brain injury than would be gained through interviews without a visual component. Part of the difference in understanding might be explained by the power that participants hold as they create visuals and share them with researchers. Researchers at Children’s Hospital Boston, who asked adolescents to make videos of their lives with chronic illness, have found that giving video cameras to participants shifts the power differential between researcher and participant (Rich, Lamola, Gordon, and Chalfen 2000b). Participants become teachers as they show researchers what it is like to live with a long-term health condition. Communicating after brain injury can be a challenge if thinking and speech are slowed. Persons with brain injury may have mild to medium long-term cognitive difficulties even as they function and live as independent adults. Perhaps asking participants to take photographs and talk about them is more ethical or fair than traditional interview methods because participants have time to reflect on the research question and a way to remember what they wanted to say. In any case, the existing research literature suggests that using visual methods likely generates new research knowledge about what it is like to live with brain injury.2

Why Study Lived Experience with Brain Injury? Rehabilitation psychologists, neuropsychologists, and others have for many years advocated gaining an insider perspective on living with disability (Bruyere 1993). In his presidential address to the National Academy of Neuropsychology in 2000, George Prigatano acknowledges the importance of scientific study of problems with brain function and says that it is inadequate. He states that, “to be effective in their work, neuropsychologists must understand their patient’s experiences” (Prigatano 2000:77). Researchers at Children’s Hospital Boston argue that clinicians need to understand “how patients live with chronic health conditions in their daily . . . environments”—home, school, and work (Rich et al. 2000b:156). Another expression for “in-

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sider experience” with a chronic health condition is “lived experience” or an “understanding of the nature or meaning of our everyday experiences” (van Manen 2006:9). This book seeks to provide a glimpse into the nature and meaning of the everyday lives of people who have survived a brain injury and returned home to their families and communities.3

Research Methods Researching lived experience with brain injury requires personal contact with persons who have brain injury. Thus, qualitative research methods and lived experience go hand in hand. I employed two basic research approaches to gathering data for this study: photo-elicitation and photovoice. For the photo-elicitation component, thirteen brain injury survivors took photographs of their lives with brain injury and talked with me about their photos in a research interview (Harper 2002). Photovoice is a group process, in which participants discuss their photographs together and write captions for images they want to share with others (Wang, Burris, and Ping 1996).* For the photovoice component, I worked with members of a brain injury survivor support group, and two brain injury survivors facilitated the project with me. The data collected for my study are threefold. They include (1) field observation notes of the study’s photo-elicitation and photovoice components; (2) photos taken by participants; and (3) transcriptions of two types of conversations about the study photos: (a) when participants talked about their photographs in interviews with me, and (b) when photovoice participants discussed their photos with the cofacilitators and each other during photovoice project meetings.

*Photo-elicitation has been used in anthropology, sociology, and public health for decades (Collier 1957; Harper 2002; Frith and Harcourt 2007). With photo-elicitation, photographs used to generate discussion in the research interview can be taken by the researcher or research participant, or be archival images or images from newspapers, magazines, or even billboards, for example. The photo-elicitation interview is a dialogic exchange between researcher and participant. Photovoice has been used in public health and development contexts since the early 1990s (Wang and Burris 1997). With photovoice, all photographs are taken by research participants, who discuss their images together. Thus the dialogue that ensues from photovoice involves the sharing of multiple perspectives. My study benefited from the use of both approaches (see Glossary and Chapter 3 for further discussion of photovoice).

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Study Sample Eleven of the thirteen brain injury survivors who took photographs and spoke with me were between the ages of 40 and 60 years, and two were in their early 20s. Seven are women, and six are men. All participants received their brain injuries at least 1 year prior to recruitment; two were injured more than 25 years ago. Eleven have survived TBI, and two have survived brain tumors. One participant has a spinal cord injury in addition to TBI. Six participants were recruited through a rehabilitation hospital where they were accessing outpatient services, and five of them completed the study. The remaining eight participants were recruited through a brain injury survivor support group. Camera Use The thirteen study participants who completed the picture-taking assignment used a total of 25 disposable cameras to take 504 photographs, or about 20 images per camera. Three participants took just 15 or 16 photos. Three took more than 50 photos, and one took 70 photos. The average number of photos taken per participant was 39, and the median was 38. Most participants took their photos over a span of three to five weeks. Two participants took their photos in just one or two days. Three contributed personal snapshots to the study. Eleven participants used their cameras appropriately and purposefully. Three took a majority of “off-topic” photos with their study cameras. One used up two cameras while on a trip to Arizona with her sisters. Another filled two cameras with photographs of her home. A third took his photos on an outing with his grandfather and did not speak of any of them as relating to his brain injury. Out of 504 photos, only 10 appear to be mistakes.

Study Photos I have informally grouped participants’ study photos under 19 themes (including “mistakes”).4 The most photographed theme is challenges (69 photos), depicted by ten participants. Family and friends was another major theme (58 photos), portrayed by nine participants. Other major themes include nature (34 photos), captured by eight participants, and strategies (42 photos), addressed by seven participants. Eight participants took pictures of themselves (14 photos). Seven participants took photographs that were visual metaphors (56 photos),

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or photographed their homes (48 photos) or cars (19 photos). Six participants took photos of services and supports (26 photos), or achievements (26 photos), or took photos that appear to be mistakes (10 photos), for example, dark or blurry. Three participants photographed a job or family role (6 photos).5 Two participants photographed their pets (12 photos), or took photos with a spiritual theme (8 photos). Figure 1.1 shows the relative proportion of photos taken under the 10 most popular study themes: challenges (69), family and friends (58), miscellaneous metaphors (56), nature (48), strategies (42), services and supports (26), achievements (30), cars (19), self (14), and pets (12). These 10 categories represent more than 73 percent of all photos taken for the study. Not included in Figure 1.1 are the categories home and tourism (86 photos, or 17 percent of all study photos), as the vast majority (72 photos or 84 percent) of the photos in those 2 categories appear to be off topic. The remaining 7 categories of photos contain from 2 to 8 photos each. The summary of study visual data described above is useful for providing a general picture of how the participants used their cameras and

Figure 1.1 Major Themes Depicted by Study Participants 80 69

Number of photographs

70

58

60

56 48

50

42 40 30 30

26 19

20

14

12

10

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Note: The figure includes only the 374 photographs that were considered on topic and used in the study.

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to what purpose. The summary does not seem useful, however, for understanding what it is like to live with brain injury. To understand lived experience, I focused instead on the stories of three study participants, chosen as “case studies.” For each “case” I have selected a sampling of photographs and their accompanying interview excerpts to form a visual illness narrative, centered on a common theme (Bell 2002; Rich, Patashnick, and Chalfen 2002).

Analysis Methods My analytic approach is narrative analysis, a family of four methods: thematic analysis, structural analysis, dialogic/performance analysis, and visual analysis (Riessman 2007). I used thematic analysis in forming the visual illness narratives. I used structural analysis to examine closely what participants said about their photos. Dialogic analysis provided a rationale for reflecting on my impact on the interview data, and the impact of the data on me, in turn. My visual analysis approaches were threefold and involved (1) looking at image details (Becker 1986); (2) reflecting on how the photos were produced and how different audiences interpreted them (Rose 2007); and (3) considering the intersection—or lack of intersection—between the photographs and what people said about them (Riessman 2007; Akeret 2000). The three cases I selected for closer study represent a range of lived experiences with brain injury: one person was injured one year before participating in the study; the other two were injured four years and seventeen years ago, respectively. The sources of their injuries differ also: one received a “severe” TBI when he fell down his basement stairs, one received a “mild” TBI when a sign fell on her head, and the third survived a brain tumor that was surgically removed and treated with radiation therapy. For each person, the themes that emerge from their photographs and interviews appeared to me to represent something important about the experience of living with brain injury (Williams 1984).

The Chapters This introduction concludes with a brief overview of the book’s chapters. Chapter 2 introduces brain injury, and presents the incidence, prevalence, and costs related to TBI in the United States. The chapter briefly discusses the consequences of brain injury and current approaches to re-

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habilitation. It provides a review of qualitative research on brain injury, which shows the global nature of poor quality of care for brain injury survivors. And finally, the chapter presents two models—one for personcentered health care that illustrates the value of understanding quality from the patient’s perspective and highlights the importance of the patient-provider relationship. The other is an organizational behavior model that provides a useful lens for considering the organizational challenges to improving quality of care for brain injury survivors. Chapter 3 is a sequential account of what happened in this study (and why). I describe the study’s 11 phases, from “The Beginning” to “Writing Up the Results.” For each phase, I present some key methodological decision points—for example, what type of camera to use, how to equitably gain informed consent from people with cognitive impairments, and selection of the case studies. Insights from the methodological literature support my decisions and, in some cases, present alternative perspectives. Chapters 4, 5, and 6 are case studies of lived experience with brain injury and form the foundation of this book. Each chapter provides a survivor’s visual illness narrative, with several photographs and their accompanying interview text. In each case study chapter, a “self-reflective meditation” reveals my researcher lens (Van Maanen 1988:106) and shows how my personality, intellect, and experiences shaped the knowledge generated (Reinharz 2002). In Chapter 4, a participant who asked to be called “Subject D,” an ironic name he chose perhaps because of the isolation and alienation he feels in living with brain injury, shares the frustration and confusion that dominate his life since falling down his basement steps and suffering a severe TBI one year before he participated in the study. Subject D uses his photographs to show us the disorder that he feels daily in his life and his brain. A major source of his frustration and confusion relates to food: shopping for it, cooking it, tasting it, storing it, and cleaning up. Revealing my researcher’s lens, I describe how my life experiences shaped the knowledge generated in working with a survivor of severe TBI whose pessimism about his situation made me feel frustrated in turn—and the implications of my feelings for the patient-provider relationship for brain injury survivors. To close this chapter, Subject D responds to my analysis and provides an alternative perspective. In Chapter 5, Peggi unfolds the numerous dimensions of darkness and light in her life, which was disrupted by TBI when a sign from an airport bus fell on her head four years before we met. Peggi describes the dichotomy she feels as her “old self” and “new self” bump up against

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each other, for example, when she fails at tasks that used to be easy. Like almost 75 percent of the 1.5 million people in the United States each year whose head injuries are treated in emergency medical settings, Peggi’s injury was labeled “mild” (Langlois, Rutland-Brown, and Thomas 2004; NCIPC 2005). However, her resulting long-term cognitive, physical, and emotional challenges have been anything but mild (Lewine et al. 2007; Cajigal 2007). I share my feelings of elation and exhaustion in working with a survivor of mild TBI who appears “normal” but has hidden disabilities. To conclude the chapter, Peggi responds to my analysis and contributes a new photograph, to encourage brain injury survivors and their family members to resist the medical community and insurance payer perception that brain injury patients will peak in their recovery at six months. In Chapter 6, Judy shares several aspects of her identity as a brain injury survivor: the chef who was “lost” with her brain injury, a person with “brain injuries” taking numerous medications each day, and an avid gardener. At this point, 17 years after surgery and radiation for a slowgrowing brain tumor ended her career as an executive chef, Judy appears to see the potentially disparate elements of her life before and after brain injury as fitting into a larger context (Reker and Chamberlain 2000). Judy’s visual illness narrative describes her process of self-discovery after brain injury—a process that will inspire brain injury survivors, persons suffering from other chronic conditions, family members, and health and social service providers alike. In turn, I reflect on my concerns in being drawn to Judy as hero in her quest for healing, and how an immersion in universal plots from an impressionable age inevitably colored my view of Judy’s experience and my choice of a theme for her visual narrative. In responding to my analysis, Judy reveals the downsides of her injury and reflects on why they did not come out when she talked about her photographs. Chapter 7 pulls together the disparate narrative threads of the three brain injury survivor case studies and puts their lived experiences in perspective using several theoretical frameworks. I propose a theory of selves grounded in the participants’ three visual illness narratives and present simple visual models to illustrate my theory of selves. The chapter concludes with a discussion of the implications for healing, medical practice, health-care policy, and future research raised by the three case studies, my research methods, and my proposed theoretical framework.

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2 Acquired Brain Injury: What It Is and Why We Should Care Brain damage, as a consequence of stroke, tumor, or accident, may befall any individual at any moment. —Howard Gardner (1975:291) If we were to employ a single word to characterize the human brain in all stages of development it would be plasticity: the organ’s capacity to change. —Richard Restak (2001:xiii) Care delivery today is nourished by the notion that an injured brain has a meaningful capacity to recover. —D. N. Cope, N. H. Mayer, and L. Cervelli (2005:129)

A description of the landscape in which my study of lived experience with brain injury took place provides a starting point for this book. The landscape includes the surge of interest in the brain and brain injury over the past three decades, the size and scope of the problem of traumatic brain injury in the United States, brain injury symptoms, and the experiences of brain injury survivors worldwide. The landscape encompasses the rehabilitation approaches, health-care policies, and health-care systems with which health-care providers as well as patients and their families must wrestle. I place a call for person-centered care for brain injury survivors squarely in the center of this landscape by reviewing a model of quality from the patient’s perspective and reflecting on organizational pressures that can have a negative impact on quality of care. I suggest that we need to care about lived experience with brain injury in order to develop health-care policies and practices that support survivor healing. 13

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The Landscape: A Brief Description The last two decades have seen a surge in interest in the brain and brain injury in the United States, with advances in neuroscience, diagnosis and measurement of brain injury, rehabilitation services, and brain theory. Since the 1990 presidential proclamation announcing the “Decade of the Brain” (Library of Congress 1990), advances in neuroscience include (1) new brain imaging techniques that show brain activity as it happens, (2) new drugs to treat stroke and mood disorders, (3) stem cell research on growing new neurons in the brain, (4) advances in robotics engineering, and (5) the discovery that human brains can create new cells throughout the entire lifespan (LCmedia 2001; Restak 2001). The brain is the new frontier of scientific—and social—exploration, and new theories about how the brain works have the potential to “change the way we think about ourselves forever” (Ratey 2002:3). Brain theory from fields as diverse as psychology, anthropology, linguistics, philosophy, and neuroscience are coalescing (Ratey 2002). No longer can we equate the brain with a personal computer, which processes information by manipulating digits (Ratey 2002). The brain appears instead to work using analogies and metaphors and an approach to reason and decisionmaking that involves comparing concepts and looking “for similarities, differences, or relationships” among them (Ratey 2002:5). The brain is now seen as a dynamic, sensitive, and robust system with an incredible ability to adapt to changes in its environment (Ratey 2002). TBI has been called the “characteristic injury of the Iraq and Afghanistan conflicts” (Jones, Fear, and Wessely 2007:1641). Estimates of TBI among returning soldiers range from 20 percent (Shea 2006) to almost 40 percent (Stephens 2006). Most of these injuries are caused by improvised explosive devices. Eighty-five percent of these injuries are invisible to the naked eye and our current neuroimaging technology. Representatives from the Department of Defense and from Veterans Affairs, family members, and brain injury advocates argue over how to diagnose TBI in the field and in rehabilitation settings, over rates of incidence, and about ensuing disability among US troops. The current US controversy over invisible injuries of war echoes that of Great Britain during World War I, when a diagnosis of shell shock became problematic because “enduring symptoms could not be linked to the presence of an obvious organic lesion” (Jones et al. 2007:1641–1642).1 TBI began to be recognized as a public health problem in the United States in the 1980s, in great part due to the efforts of brain injury advo-

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cates (Gordon et al. 2006b). In 1979, three Massachusetts women whose teenaged children were brain injured in car accidents formed the National Head Injury Foundation, now called the Brain Injury Association of America (BIAA) (Gordon et al. 2006b). The BIAA has grown to include a national headquarters and 43 state affiliates that advocate for funding to further brain injury research and rehabilitation and provide information and support to brain injury survivors and their families—including injured US troops returning from Iraq and Afghanistan. Publication of new research journals devoted to brain injury was initiated in 1986 and 1987.2 Also in 1987, the National Institute on Disability and Rehabilitation Research founded the TBI Model System (TBIMS) program. TBIMS now supports research and best-practices systems of care for TBI patients through 17 US rehabilitation hospitals. BIAA advocacy efforts culminated in passage of the Traumatic Brain Injury Act of 1996, whose purpose was “to expand the efforts to identify methods of preventing TBI, expand biomedical research efforts to prevent or minimize the severity of dysfunction as a result of such an injury, and to improve the delivery and quality of services through state demonstration projects” (Public Law 104-166). Implementation of the act falls to three federal government entities: the Centers for Disease Control and Prevention (CDC), to reduce the incidence of TBI; the National Institutes of Health (NIH), to grant awards for research in TBI; and the Health Resources and Services Administration (HRSA), to carry out demonstration projects to improve access to services for survivors (US GAO 1998). A 2000 reauthorization of the act expanded research and services for children with TBI and allowed states to fund state TBI activities through in-kind (instead of dollar) matches. “By 2002, 18 states had created trust funds to provide services for people with TBI that supplemented direct healthcare” (Cope, Mayer, and Cervelli 2005:133). However, public investment in TBI research has been limited relative to conditions such as HIV/AIDS and breast cancer (Gordon et al. 2006b). Policies are complex and vary from state to state, community to community, and insurance provider to insurance provider. Their complexity is no match, however, for the complexity of the human brain. Policies related to brain injury rehabilitation have not kept pace with current brain science. For example, many health insurers do not take into account current understanding of the ability of the brain to adapt to deficits and injury capacity. Insurers continue to limit survivor access to rehabilitation services to the first three to six months after injury (if they cover them at all). Some health insurers limit service coverage to cognitive therapies only, and will not cover psychotherapy for brain injury sur-

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vivors (Pollack 2005). There is little recognition among health insurers “that TBI is frequently a lifetime disability with varying rehabilitation needs over that lifetime” (NIH 1998:14).

Traumatic Brain Injury (TBI) This study began as a study of lived experience with traumatic brain injury, an injury caused by blunt force, trauma, or shock to the head. TBI is estimated to affect at least 1.4 million people in the United States each year (Langlois, Rutland-Brown, and Thomas 2004), and may affect as many as 3 million people each year (Kraus and Chu 2005). Difficulties in determining rates of injury, injury severity, and postinjury disability stem from a range of inconsistencies—even in the definition of a brain injury. Terms such as “head injury,” “brain injury,” and “concussion” are used interchangeably in medicine, research, and policy (Jagoda et al. 2002). Inconsistencies in methods used to identify a brain injury, categorize its severity, and collect and categorize data cause further confusion (Kraus and Chu 2005). In emergency medical settings, TBIs are usually categorized as mild, moderate, or severe depending on patient functioning and ability to respond. Although injury severity is a factor in long-term recovery, a diagnosis of mild injury may not predict long-term functional outcome (Kraus and Chu 2005). An estimated 10 to 15 percent of people diagnosed with a mild TBI continue to have symptoms, such as problems with memory or focus, one year after injury (Kraus and Chu 2005; Gordon et al. 1998). Repeated concussions or mild TBIs can result in a swelling of the brain, leading to permanent brain damage and even death (CDC 2003).3 The chief causes of TBI in the United States each year are falls (28 percent), vehicle crashes (20 percent), sports-related injuries (20 percent), and assault (11 percent) (Langlois, Rutland-Brown, and Thomas 2004; NCIPC 2005; Davies, Connolly, and Horan 2001). Motor vehicle crashes are the most common source of severe TBI (Gordon et al. 2006b; Thurman et al. 1999).4 In the United States, the two age groups at greatest risk of TBI are persons aged 15–24 years and those aged 65 and older (Kraus and Chu 2005). The age groups most commonly treated for head trauma in emergency departments, however, are children under the age of 5 and elderly over the age of 85 (Gordon et al. 2006b). TBI affects people of all ages, races, and socioeconomic backgrounds, although rates of TBI are highest in families at the lowest in-

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come levels, and persons of minority background have a greater risk of injury (Kraus and Chu 2005). It has been reported that up to 87 percent of people in prison or jail have “a history of head injury, including TBI” (Langlois, Rutland-Brown, and Wald 2006:375), and brain injuries caused by violence may lead to more persistent symptoms and “greater levels of disability” (Gordon et al. 2006b:345). Of all types of injury, TBIs are among the most likely to cause death or permanent disability (Langlois et al. 2006). An estimated 5.3 million Americans, or 2 percent of the population, are living with a long-term disability after being hospitalized for TBI, and “the true number of persons living with TBI-related disability likely is much higher (Langlois, Rutland-Brown, and Wald 2006:376). Kraus and Chu (2005:25) suggest that approximately 98,000 persons “who sustain a brain injury each year will have neurological deficit or disability.” As these data on incidence, prevalence, and severity of TBI show, brain injury is an important and persistent public health problem in the United States and affects individuals and their families throughout our society. The data give us a sense of the big picture of TBI’s impacts and costs to society and provide a rationale for learning more—but they do not tell us about the experiences of survivors or their families.

Acquired Brain Injury (ABI): Definition, Symptoms, and Rehabilitation Because my research sample included two people injured by brain tumors, my study topic changed from “living with TBI” to “living with ABI.” The Australian researcher and brain injury survivor Mark Sherry provides a working definition of ABI: Acquired Brain Injury is injury to the brain which results in deterioration in cognitive, physical, emotional, or independent functioning. ABI can occur as a result of trauma, hypoxia, infection, tumor, substance abuse, degenerative neurological disease or stroke. These impairments to cognitive abilities or physical functioning may be either temporary or permanent and cause partial or total disability or psychosocial adjustment. (Canberra, Australia Commonwealth Department of Human Services and Health 1994, in Sherry 2006:24)5

The term “ABI” is not often used in medical settings, where a diagnosis of brain injury is usually more specific about the source of the injury—for example, epilepsy, multiple sclerosis, traumatic brain injury,

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dementia, or stroke (Sherry 2006). However, persons with all types of brain injury undergo neuropsychiatric assessment, whether they received their injury due to TBI, lack of oxygen to the brain, low blood sugar, exposure to toxins, drug abuse, electrical current, or coronary artery bypass surgery, to name a few (Arlinghaus, Shoaib, and Price 2005). Injuries from all these sources incur symptoms and deficits similar to those seen with TBI (Arlinghaus, Shoaib, and Price 2005). There are 650 brain-related disorders, and together they affect 50 million Americans per year and account for more long-term health costs and hospitalizations than almost all other diseases combined (Boyle 2001). All 650 disorders can lead to brain injury. Stroke, for example, affects 500,000 people in the United States each year, and approximately 3 million US residents are living with disabilities from stroke (Thomas and Pollio 2002). Throughout this book, I will use the term “brain injury” to represent any “acquired brain injury” for simplicity’s sake. Brain Injury Symptoms Brain injury, whatever the source, may lead to dramatic changes in a person’s ability to think and to control behavior and emotions (Arlinghaus, Shoaib, and Price 2005). Brain injury symptoms can be grouped into four broad domains: cognition, emotion, behavior, and physical symptoms. Cognitive symptoms can include problems with short-term memory, problem-solving, and focus. Emotional symptoms can include mood swings, depression, and irritability. Behavioral symptoms may include being more impulsive and losing the ability and will to start an activity and to stick with it. Physical symptoms can include fatigue, headaches, problems with vision, and difficulties with balance (Arlinghaus, Shoaib, and Price 2005). No one knows quite why the range of symptoms can vary so greatly from individual to individual. Preexisting personality and temperament and the type of injury and its severity are said to be factors (Arlinghaus, Shoaib, and Price 2005; Prigatano 1999). Rehabilitation from Brain Injury Rehabilitation from injury or illness of any kind is intended “to help individuals with a disability return to optimal effectiveness in daily living” (Burton 2000:301). In an ideal world, rehabilitation for brain injury is comprehensive and involves access to an array of services provided by a diverse range of health-care professionals (Cope and Reynolds 2005). Possible services include psychotherapy, cognitive rehabilitation, be-

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havioral treatment (Silver, McAllister, and Yudofsky 2005), occupational therapy, speech and language therapy, and physical therapy. Alternative therapies sought by survivors may include massage therapy, acupuncture, homeopathy, and chiropractic services. Peer support programs can also provide cognitive and emotional benefits and may improve longterm outcomes.6 Figure 2.1 provides a diagram showing the recommended treatment flow from acute care to lifetime care for the TBI patient with long-term impairments and rehabilitation needs (Cope and Reynolds 2005). The brain injury survivors who participated in my study all fall under the postacute rehabilitation and lifetime care columns shown in Figure 2.1. Six were accessing outpatient rehabilitation therapy when I spoke with them. Eight are members of a brain injury survivor support group sponsored by a BIAA affiliate and the Massachusetts Rehabilitation Commission. Rehabilitation from brain injury is complicated by uncertainty about a patient’s potential for recovery of function. Historically, survivors of brain injury were expected to have limited potential for recovery, particularly beyond six months postinjury (Thomas and Pollio 2002). However, acceptance of the “plasticity” of the central nervous system (including the brain) has replaced the old “hard-wired” model (Cope, Mayer, and Cervelli 2005). Brain recovery is now seen as dynamic, with Figure 2.1 Simplified Schematic of Treatment Flow for the Patient with TBI: Acute Care, Acute and Postacute Rehabilitation, and Lifetime Acute care

Acute rehabilitation

Acute inpatient rehabilitation

Postacute rehabilitation Residential treatment Day hospital

Medical/surgical

Lifetime care

Supported living programs

Vocational Subacute rehabilitation

Outpatient therapy

Neurobehavioral treatment

ABI community support groups

Special education programs

Source: Cope and Reynolds 2005:562. Reprinted with permission from Textbook of Traumatic Brain Injury (copyright 2004), American Psychiatric Publishing.

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the brain forming new cells that play a role in recovery of function (Cope, Mayer, and Cervelli 2005). Current recommendations encourage providing comprehensive rehabilitation services for one to three years to address cognitive, neurobehavioral, and physical needs (Cope, Mayer, and Cervelli 2005). A comprehensive system of care for brain injury now includes “therapy, training, and supported living” in the community “for extended periods of treatment or including the entire lifetime of the injured person” (Cope, Mayer, and Cervelli 2005:132). For brain injury survivors and their families, however, access to a comprehensive system of care is rare (Cope, Mayer, and Cervelli 2005). A 1998 US General Accounting Office (GAO) report on Medicaid programs for postacute services for TBI survivors in four states found that persons with TBI having invisible cognitive impairments and no apparent physical disabilities encounter challenges in obtaining state-supported services. The report states that “adults with TBI who walk, talk, and look ‘normal’ are refused services, even though they cannot maintain themselves in the community without help” (US GAO 1998:13). Findings from Colorado and Pennsylvania show that “most adults with TBI are unlikely to qualify for the broad-based waiver for elderly and physically disabled individuals” if they have cognitive impairments and do not have physical ones (US GAO 1998:6). Costs TBI incurs an annual cost in the United States of $48 billion to $56 billion (Langlois, Rutland-Brown, and Thomas 2004). The cost of acute care and rehabilitation for new TBI cases each year has been estimated at $9 billion to $10 billion, and the average lifetime cost of care for someone with severe TBI ranges from $600,000 to $1.9 million (NIH 1998), to as high as $4 million (Kraus and Chu 2005). The costs related to treating mild, moderate, and severe injuries are nearly the same, because mild injury “incurs other associated treatment costs and affects full-time employment” (Kraus and Chu 2005). Sources of funding for treatment and rehabilitation of persons with TBI may include workers’ compensation, automobile liability insurance, no-fault automobile insurance, health insurance, Medicare, and Medicaid (Cope and Reynolds 2005). Health insurance may pay for acute care and acute rehabilitation, with limits placed on “the number of hospital days, skilled nursing facility days, and therapy sessions” (Cope and Reynolds 2005:567). Insurance coverage frequently excludes postacute and lifetime care for TBI (Cope and Reynolds 2005).

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Many people remain undiagnosed or untreated after brain injury, and much of the cost to individuals, families, communities, and state and national government agencies is not included in the cost estimates above. It is estimated that “the gap between the numbers receiving long-term services and the estimated number of disabled adults with TBI remains wide” (US GAO 1998:15). Cost estimates do not include the economic burden to family and society due to “lost earnings, costs to social services systems, and the value of the time and foregone earnings of family members who care for persons with TBI” (NIH 1998:14).

Poor Quality of Care: A Global Issue for Brain Injury Survivors TBI is “an important global public health problem” (Langlois, RutlandBrown, and Wald 2006). Poor quality of care for brain injury survivors is a global public health problem also. Issues faced by brain injury survivors worldwide include lack of knowledge and negative attitudes by providers, challenges getting diagnosed, and time limits on rehabilitation services. In the United States, health-care system issues confronted by brain injury survivors include lack of coverage for postacute rehabilitation, poor coordination of care, and limited access to rehabilitation services for survivors of mild TBI. Much of the research on brain injury has concentrated on the technologies, providers, and costs related to providing services to TBI survivors (NIH 1998). Most studies have looked at the impact of brain injury on an individual’s life from a “mechanistic, functional perspective” (Thomas and Pollio 2002:173). Research that investigates brain injury survivor experiences using unstructured interviews has been lacking. However, qualitative research studies from four countries consistently identified problems with quality of care for brain injury survivors. The four countries are Australia, Great Britain, Sweden, and the United States. Their fields of discipline include nursing, occupational therapy, rehabilitation, psychology, and disability studies.7 In all four countries, brain injury survivors felt a lack of support from health providers for what they were going through. Living with TBI meant not being believed by medical professionals and not gaining access to needed care (Nochi 1998; Sample and Darragh 1998; Sherry 2006). Many survivors felt that providers did not feel empathy for them and presumed they were malingering or pretending they had symptoms that were not real (Chamberlain 2006). Insensitivity of health profes-

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sionals and lack of awareness among the general population prevented access to needed diagnosis and care, and created feelings of stigma and low self-esteem (Chamberlain 2006; Sherry 2006). Some survivors were misdiagnosed, while others were never diagnosed or were told that nothing was wrong (Sample and Darragh 1998). Getting a diagnosis of brain injury sometimes took several years, even when the survivor “repeatedly sought help for the same problem” (Jumisko, Lexell, and Soderberg 2005:46), and this experience was common (Nochi 1998; Sample and Darragh 1998; Chamberlain 2006; Sherry 2006). Some survivors started to think they were crazy, and some were told they had psychiatric problems (Sample and Darragh 1998). Survivors wanted to be treated with respect and listened to by healthcare professionals (Nochi 1998; Sample and Darragh 1998; Jumisko, Lexell, and Soderberg 2005; Chamberlain 2006; Sherry 2006). They felt powerless and disrespected (Sherry 2006). Lack of care coordination slowed access to rehabilitation services (Sample and Darragh 1998), and lack of qualified medical providers to treat brain injury was a challenge for some (Jumisko, Lexell, and Soderberg 2005). Survivors did not agree with health-care providers who espoused that (1) physical function is more important than social function and (2) recovery has an endpoint (Burton 2000). Survivors consistently faced lack of information about risk, diagnoses, symptoms, options for rehabilitation services, and health-care coverage (Sample and Darragh 1998; Secrest and Thomas 1999; Glover 2000; Sherry 2006). Some survivors received inaccurate information about insurance coverage or were turned down repeatedly for insurance coverage by a range of payers, from private insurance to auto insurance, Medicaid, and Medicare (Sample and Darragh 1998). Getting a hearing to argue for better coverage could take a year and a half. For some survivors, the only sources of reliable information were friends, family, and word of mouth (Sample and Darragh 1998). Some received an overload of information soon after their injury, when stress, denial, and unacknowledged impairments prevented them from retaining and acting on the information provided (Paterson, Kieloch, and Gmiterek 2001). The studies also suggested ways to improve quality of care for brain injury survivors. One study called for educating service providers about brain injury (Sample and Darragh 1998). Others recommended that professionals provide greater support and empathy, and do more listening to (1) “reduce feelings of being alone in suffering” (Jumisko, Lexell, and Soderberg 2005:49); (2) “assist patients to retell and interpret the story of his or her life” (Haggstrom, Axelsson, and Norberg 1994:335); and

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(3) “learn more about everyday values of persons with TBI” (Crisp 1994:20). One study challenged health-care providers to consider “the whole person in his or her context” outside the patient-provider setting (Thomas and Pollio 2002:165). It is important to remember that many persons with chronic health conditions face the quality-of-care challenges discussed here, particularly when their conditions are invisible to the naked or uneducated eye. As with all people struggling with chronic health conditions, poor quality of care for brain injury survivors often stems from lack of access to person-centered care.

A Consistent Threat: Lack of Person-Centered Care In Crossing the Quality Chasm, the Institute of Medicine (IOM) report on quality of health care, one of six areas the authors target for improvement is patient-centeredness: “the patient’s experience of illness and health care and the systems that work or fail to work to meet individual patients’ needs. . . . Person-centeredness encompasses qualities of compassion, empathy, and responsiveness to the needs, values, and expressed preferences of the individual patient” (2001:49). One aspect of person-centered care is the outcomes that a person may hope or aim for. “Personal outcomes are the expectations that people with disabilities have for their lives, including what they expect from the services and supports they receive” (National Center on Outcomes Research 1999). In primary care settings, person-centered care involves six components: (1) exploring the illness experience; (2) understanding “the whole person”; (3) finding common ground; (4) incorporating illness prevention and health promotion into the visit; (5) enhancing the patient-provider relationship; and (6) being realistic (Stewart et al. 2000:796). Person-centered planning places “the person with TBI at the center of planning” (Mount, Brown, and Hibbard 2003). This means asking the person, “What do you want to accomplish?” or “What are your goals, and how can we help you?” (Mount, Brown, and Hibbard 2003:1). Yet providers may focus on their empirical knowledge when they treat a patient and fail to consider the whole person who has come to them for treatment. Some physicians find it challenging to comprehend the home and community environments that inevitably influence how patients feel and their ability to adhere to recommended treatments (Rich et al. 2000b). Others find it difficult to “recognize the plights of their pa-

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tients” and “extend empathy toward those who suffer” (Charon 2001:1897). However, expressions of empathy for a patient’s illness experience can have a positive impact on health, for example, through the “social engagement of emotions” by the patient and a reduction of stress hormones (Adler 2002:883). Providing person-centered care may be particularly urgent for brain injury survivors, for whom each brain injury and each path for healing is different (Rankin 1998). Traditional models of rehabilitation care are based on “medical principles of cure” (Burton 2000:301) in which the goal of care is curing illness and restoring health. With chronic conditions, however, treatments are intended to improve quality of life and ability to function—not to cure. With a chronic condition like brain injury, medical principles of cure are no longer relevant. Quality of care from a brain injury survivor’s perspective may mean making progress in participating in activities that brought meaning to life before brain injury (Burton 2000), or finding new purpose in a life with brain injury (Nochi 1998; Glover 2000; Jumisko, Lexell, and Soderberg 2005; Sherry 2006). From an individual patient’s perspective, quality is not a simple concept. Jon Chilingerian (2004) suggests that quality of care from the patient’s perspective has five dimensions: technical outcomes, in terms of quality of life; decisionmaking efficiency, in terms of efficient routes to health; amenities and convenience; information and emotional support (relationships); and overall patient satisfaction. This five-pronged concept of quality from the patient’s perspective is illustrated in Figure 2.2. On a person-by-person basis, some of these five dimensions of quality—relationships, for example—may be improved through empathetic listening and considering the brain injury survivor’s life outside the medical setting. As noted earlier, lack of empathy and respect are problems faced by survivors worldwide. Improving relationships by improving the information shared—both by providers and patients—and providing emotional support would likely improve patient satisfaction with care, even in the face of a chronic condition for which there is no cure. Other quality dimensions, such as decisionmaking efficiency and amenities and convenience, are organizational and systemic issues with which physicians as well as patients may struggle. For example, visit limits of 15 minutes (or 45 instead of 60 minutes for a rehabilitation therapy visit) have been described by a physician as examples of “our dysfunctional health care system” (Berland 2007). Any action to improve quality of care for brain injury survivors needs to consider the environment in which rehabilitation care is offered. For brain injury, most rehabilitation care is provided through organiza-

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Acquired Brain Injury Figure 2.2 Star Quality: A Patient-Centered View

Patient satisfaction

Relationships: Information and emotional support

Amenities and convenience Star Quality

Decisionmaking efficiency

Patient outcomes related to quality of life

Source: Chilingerian 2004. Used with permission from Consumer Driven Health Care: Implications for Providers, Payers, and Policy-makers, edited by R. E. Herzlinger (San Francisco: Jossey-Bass, 2004).

tions. Let us consider, then, the organizational context for brain injury rehabilitation services.

Predicting Organizational Behavior James March and Herbert Simon (1993) created a model of organizational behavior that provides a useful framework for understanding what goes on inside organizations, including those that provide health care. The model, seen in Figure 2.3, predicts that the division of labor among organizational departments causes individuals and departments to consider only some of the information available to them as they establish goals and make decisions. In focusing their information, individuals and departments may stop communicating with each other and begin to establish differentiated (or splintered) subgoals, which focus their attention further. The amount of time available to consider information and make decisions brings further pressures. For our purposes, individuals could be clinicians, and organizational departments could be departments within a rehabilitation hospital. The March and Simon model shows us that time pressure (e.g., the 15-minute doctor visit) and splintered subgoals (e.g., addressing cognitive issues separately from emotional issues) cause individual clinicians and organizational departments to narrow

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Figure 2.3 Predicting Organizational Behavior

Division of labor

Communication within subgroups

Focus of information

Time pressure

Span of attention

Differentiation of subgoals

Persistence of subgoals

Focus of attention

Source: March and Simon (1993). Used with permission from Organizations by James G. March and Herbert A. Smith (Oxford: Blackwell, 1993).

their focus of attention. In other words, organizational pressures narrow the perceptions of both departments and clinicians about what they do and how they think about it. As a result, the focus of attention and the goals of the entire organization can become narrowed as well. The March and Simon model of organizational behavior, developed more than 50 years ago, is a good snapshot of what happens in healthcare organizations, where different specialties often occupy separate units and have distinct subgoals, which become their focus of attention. We could also use this model to consider rehabilitation from the perspective of the patient. As a person with brain injury accesses (or attempts to access!) rehabilitation therapies, he or she approaches a splintered landscape of services and providers who may or may not communicate with each other. Each therapist or service will likely focus on a specific type of outcome: physical functioning, ability to work, ability to communicate, or emotional and psychological well-being. All of these outcomes relate to an individual’s overall quality of life and ability to function (and thrive) day to day, but in the health-care system, each outcome is viewed and treated as a separate issue. The health-care organization’s focus of attention on individual therapies is not patient-centered care. A conversation among brain injury survivors during the group photovoice project illustrates the lack of patient-centered care for brain injury survivors as portrayed in the March and Simon focus-of-attention model. A participant had taken a photograph of her pillbox and was ex-

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plaining to the group members why she had taken the photograph. She described her challenges in trying to adhere to a regimen of pills prescribed by several medical specialists, whose recommended treatments required her to take a range of medications six different times throughout the day, every day. Her neurologist, for example, had prescribed a pill to provide relief from her severe headaches after brain injury. Another participant responded to her story: “He [neurologist] was treating your symptom [headaches], not you as a human being. Because as a human being you have all these other needs that are coming into play. Yeah. That happened to me, with almost every facet of my health care. They were looking at my leg, or my head, or my back. Everything was a piece. . . . Like you are the pieces as opposed to the whole” (2006 photovoice participant, Framingham TBI project). The US health-care system, with its silos of specialists and dizzying array of insurance coverage, codes, paperwork, and reimbursement policies, reinforces a narrow focus of attention—on different symptoms and therapies to address them—on the part of patients as well as providers. As described above, patients encounter challenges in being seen as a whole person, not just the body part or symptom that is the immediate focus of attention during any given office visit. The fragmented nature of the US health-care system can prevent brain injury survivors from (1) accessing the full range of services they need and (2) adhering to recommended treatments. The silos of care provided by the rehabilitation organization (as illustrated in Figure 2.4) encourage providers to have a narrow view of the patient. Differentiated goals may cause providers to limit discussion of possible treatment approaches with patients—thus creating limits on the patient-provider relationship, the information shared, the emotional support shown, and the relationship’s focus of attention— and impinge on quality of care from the patient’s perspective. At a time when seeing him- or herself as a whole person may already be chalFigure 2.4 Differentiated Subgoals

Physical therapy

Occupational therapy

Speech and language pathology

The TBI patient

Counseling

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lenging for a brain injury survivor, our fragmented system of care may cause further damage and place negative pressure on an individual’s possibilities for healing. The March and Simon model of organizational behavior provides a useful lens for considering challenges to quality in organizations that provide rehabilitation services for brain injury survivors, and to considering the rehabilitation landscape from a brain injury survivor’s perspective. Yet it has a major limitation: it considers care only as it occurs inside the organization. However, brain injury patients accessing postacute or lifetime care spend only a small amount of time (if any time at all) inside their health-care providers’ offices (Anderson 1975). For the most part, the survivors are in their communities and homes. The March and Simon model does not include the environment where brain injury survivors must take action to heal. It does not include the brain injury survivor’s perspective on quality of care and the healing process. It does not take the brain injury survivor’s goals into consideration. However, the March and Simon model shows us that organizational as well as clinician factors can result in health care for brain injury survivors that is not person-centered. Organizational factors will be important to consider when developing recommendations for improving quality of care provided to persons with brain injury. For now, however, it is the brain injury survivor’s experience that concerns us.

Why Care About Lived Experience with Brain Injury? Life expectancy for people of all socioeconomic levels in the United States increased dramatically during the twentieth century. Thus, the emphasis or work of medicine has changed from curing acute diseases to managing chronic conditions (Carroll 1998), of which brain injury is one example. By and large, patients, not doctors, manage chronic disease (Rich, Polvinen, and Patashnick 2005), and brain injury is no exception. One of the challenges to recovering from brain injury is that there are no cookie-cutter solutions to rehabilitation and recovery. Each patient’s injury and healing are different, and quality means tailoring rehabilitation plans to the individual. As we have seen, this conceptual shift—considering quality of care from the patient’s perspective—is encouraged in the IOM Quality Chasm report and is illustrated in the Star Quality model seen in Figure 2.2. In a societal context, the shift in perception of quality of care in the United States has taken place in an environment of increased rights

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for “all individuals, irrespective of disability . . . to optimized social access, opportunity, integration, and participation” (Cope, Mayer, and Cervelli 2005:129). One way to understand quality of care from the patient’s perspective is to carry out qualitative research that allows patients to share their experiences in an unstructured way. However, as Steadman-Pare et al. (2001) note, research on brain injury survivors’ perceived quality of life over the course of their lives postinjury is scarce. The qualitative research studies discussed earlier in this chapter explored the perspective of persons living with brain injury. However, they encompassed verbal interviews and looked for themes in their data. There is room for new ways to explore lived experience with brain injury. The following chapter describes the new way used by this study.

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3 Learning from Brain Injury Working scientists must, of course, be concerned with their techniques, but only because they can help them achieve their proper ends, namely, the answering of important questions. —Abraham H. Maslow (1987:189) We argue that the choice of method should be appropriate to the problem, and where the problem concerns illness and health as personal states, the case study is the logical option to choose. —Alan Radley and Kerry Chamberlain (2001:325) Storytelling engages an audience in the experience of the narrator. —Catherine Kohler Riessman (2007:9)

In this chapter, I provide a narrative account of what happened as I envisioned and carried out my study. The tale begins as I started to learn about TBI as a public health problem. The story continues through eleven phases, from developing a pilot protocol to carrying out a hospital-based study, implementing a photovoice project, using narrative analysis methods, and writing up the results. These phases are not strictly sequential—they frequently overlapped—but placing them in sequence shows the evolving nature of the work that went into this book. For each phase, I provide a brief overview, some key decision points, and insights from the literature, intended to help you make decisions about adapting my methods to your needs and contexts if you wish. If you are not a student, researcher, or facilitator, you may prefer to skip this chapter and go straight to Chapter 4, the first case study. However, if you 31

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would like to know how this study developed and some of the key decisions made along the way, read on.

Phase 1: The Beginning In the second semester of my doctoral studies, I decided to do a small pilot photovoice study with TBI survivors, to help me (1) gain experience using visual methods to understand lived experience, (2) build credibility in my doctoral program for studying lived experience with TBI, and (3) potentially shorten the institutional review board (IRB) approval process later.1 I developed a pilot study protocol and the Brandeis IRB committee approved it in June 2005. Methodological decision points related to developing the pilot study protocol follow. Applying Instructional Design Principles I drew on my instructional design (adult education) training in developing the protocol. For example, given their potential cognitive and communication challenges, I thought that TBI participants might benefit from having a visual-clue handout showing the steps of the research they would be doing with me—for example, learning about being a visual researcher, taking photographs, and discussing them with me. I had been using a research approach called “photovoice” for several years. With the assistance of a graphic designer, I developed a series of symbols to illustrate the process and steps. I call this “a photovoice path,” as seen in Figure 3.1. Restricting the Age of Participants I knew it would be difficult to get approval to do a research project with persons with cognitive challenges, as they are a “vulnerable population.” I purposefully limited the project to adults between the ages of 18 and 65, to avoid the additional challenge of gaining approval to work with children, adolescents, or elders with cognitive impairments—“doubly” vulnerable populations. Using Disposable Cameras I have always provided photovoice participants with disposable or inexpensive point-and-shoot cameras because (1) they are low cost and eas-

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Figure 3.1 A Photovoice Path

Learn about photovoice

Take photographs

Discuss photos and reflect on experience

Write or dictate narratives

Choose photos for sharing

Invite people to share in discussion

Present and exhibit

Reflect and move forward

ily replaced if lost; (2) using a low-tech camera places emphasis on photo content, not quality, and perhaps reduces pressure to take “good” photographs; (3) participants cannot erase images that they think are stupid but that might be fruitful topics of discussion; (4) I have little experience with video cameras and hesitated to take on the additional postproduction and analysis tasks that video recordings would entail. Riessman (2007:181)

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has pointed out that digital image technologies and software will likely “transform the practice of photography in photovoice projects” in the future. I preferred to use technology with which I was familiar, and asked the film processor to create digital images and save them on CD-ROM for use in educational and outreach activities. Study participants received hard copies of their photos and a CD-ROM with digital images.

Phase 2: Collaborating with a Hospital While working on the pilot protocol, it occurred to me that carrying out the study through a rehabilitation setting could provide many benefits: easier participant recruitment, increased participant safety, greater credibility, and better outreach. When I contacted Spaulding Rehabilitation Hospital to inquire about doing the study there, the research administrator said I would need to recruit a coinvestigator from their staff. I recalled that a former graduate school colleague in instructional design had experienced TBI. I used to give her a ride to school, and she would talk about her injury during our trips. She introduced me to her speech pathologist, who agreed to be my coinvestigator. He had previously developed a writing intervention with brain injury survivors and saw the study as building on his prior work. Over the summer, my collaborator and I worked together to expand the protocol to meet hospital requirements. We elaborated the sections on recruitment, informed consent, potential benefits and risks to participants, and data analysis methods. We submitted the study protocol for review in September 2005. After two rounds of questions and responses, the hospital’s IRB committee approved the protocol in January 2006. Methodological decision points related to expanding the protocol for the hospital are discussed below. Defining the Inclusion/Exclusion Criteria The protocol required inclusion/exclusion criteria. We decided to limit study participation to persons who were injured within the past five years, as this time frame would encompass most people my collaborator might wish to recruit. My collaborator also suggested we use participant scores on the Ranchos Los Amigos Cognitive Levels of Functioning Scale (revised) as a participation criterion (Hagen 1997). The scale defines 10 levels of cognitive functioning from “no response” (Level I) to “purposeful and appropriate” (Level X). Clinicians often use a diagnosis of Level VII

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as a cutoff for participation in activities that require independent work or retention of new learning. In brief, persons at a cognitive Level VII • Remain oriented to the person they are speaking to and the place they are in; • Attend to tasks for at least 30 minutes with minimal assistance; • Require minimal supervision for new learning; • Demonstrate carryover of new learning; • Initiate and carry out steps to complete familiar personal and household routines but may have shallow recall of what they have been doing; • Require minimal supervision for safety in routine home and community activities. Ensuring Informed Consent of Cognitively Impaired Persons Similar to other research settings, the hospital is “committed to providing additional scrutiny and protections” for studies involving “cognitively impaired persons or persons with diminished capacity” (SRH IRB Policy Manual 2005:2). My collaborator and I had to ensure that our participants could understand what our research project was about and make an informed decision about participating (or not). The committee wanted to know how we would (1) avoid confusion between research and treatment, (2) assess participant capacity to consent, and (3) assess participant capacity to appreciate how the study’s risks and benefits applied to them personally. Thus, our approach to informed consent had to be personcentered. For example, some patients might benefit from having a caregiver present during the informed consent interview, even though approval by a family member was not required. We put additional safeguards in place: we decided to (1) introduce the project and get informed consent on separate days, to allow participants time to reflect on the project commitment, and (2) provide regular opportunities for participants to withdraw from the study if they wished.2 Ensuring Participant and Community Safety To ensure their safety, participants were expected to ask permission before taking any photographs of people or property, and refrain from taking a photo if the subject or property owner said “no.” They needed to be able to explain why they were taking photographs. Participants would

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be acting as visual researchers of their lives. They needed to respect their “participants” (photo subjects or property owners) just as facilitators in turn needed to respect their wishes—for example, to withdraw from the study at any moment if desired. These guidelines follow those developed for photovoice (Wang and Redwood-Jones 2001). Ethical Issues Related to Participant Data (Photographs) The hospital IRB committee recommended asking participants to sign a release form that would cede control of all data (photographs) to the hospital. Asking for a blanket release is common in research that requires blood samples—signing the form gives permission for all subsequent use of the blood by the hospital. I worried that participants might feel constrained about their photo topics if they ceded control of their images immediately upon signing the informed consent form. I suggested instead that the study use a tiered photo consent process, adapted from photovoice guidelines (Wang and Redwood-Jones 2001). In signing the informed consent form, participants gave permission to discuss their photos with the researcher. Later, they were asked to sign a second form to give (or withhold) permission to share their images beyond the photo interview. The permission form stipulated photo use (e.g., in a journal article) and specified which photos (some or all) were released. And finally, the release form asked participants if they wanted their images to be “de-identified” or not—in other words, to hide their face or any other details that could identify them. In addition, any person who could be recognized in a photo also had to give (or withhold) permission for the image to be shared beyond the photo interview.

Phase 3: Working with the First Participant As specified in the protocol, my first participant had a cognitive level of at least VII on the Ranchos Los Amigos Cognitive Level Scale (revised), and she had received her injury no more than five years before. We met three times: (1) to discuss the project and go over the informed consent form, (2) when I picked up the camera, and (3) to discuss her photographs. Before giving her the camera, I asked her to take photographs of living with TBI and facilitators and barriers to recovery, from her perspective. The disposable camera had 27 images, and I asked her to give me the camera in two weeks. She finished the film after three weeks, and we met a week later to talk about her pictures. We spoke for four and a half hours. For more than two hours she talked about her process of tak-

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ing the photographs and shared some family snapshots of people she couldn’t photograph for the study. For the last two hours we went through her photos one by one, and she talked about what they meant for her, why she had taken them, and how she had settled on or created the particular images. Some methodological decision points related to working with the first participant are discussed below. Choice of Respondent H. Russell Bernard (2000:193) notes that a nonrandom sample of respondents is appropriate for learning about lived experience when learning about “their lives” is your research intent. I interviewed the neighbor who served as my TBI survivor “check-in.” She had been injured in an auto accident four years prior, and I knew her to be a reflective and articulate person. I hoped that our existing rapport would result in rich data for analysis. She welcomed the opportunity to reflect on her life and do what she perceived to be an interesting activity. Her name is Laura Foley, and I will refer to her as Laura F. Choosing Photos to Discuss Laura F. brought personal snapshots to the interview, mostly of family members she did not have an opportunity to photograph with her study camera. After discussing her family photos, we filed her project photos (she called them the “formal pictures”) in her project binder, in order from 0 to 27. I did not realize that we were gluing the photos in her book in reverse order, as the disposable camera’s images started at 27 and ended at 0, and discussing them in reverse order also. Laura F. expressed several times during the interview that she was happy with the order in which we were discussing her photos. For subsequent interviews, however, I left the photos loose so participants could choose which ones to talk about and in which order.

Phase 4: Recruiting Hospital Outpatients Concurrent with the efforts described in Phase 3, the hospital IRB committee approved the pilot protocol, and my clinician collaborator began to recruit participants. Recruitment was slow, due in part to the sporadic nature of patients’ insurance coverage and thus their access to services (and contact with my collaborator). Between January 2006 and June 2007, three

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people completed the informed consent process, took photographs, and spoke with me about them. Some methodological considerations related to selecting and recruiting the hospital-based sample follow. Sample Selection The hospital outpatients who participated in the study are a select group. All are white, have received a diagnosis of TBI, and have access to outpatient rehabilitation services. They represent lived experience with TBI from the perspective of people whose injury is fresh and early healing ongoing. They had health insurance that covered outpatient rehabilitation therapies for TBI, though often with interruptions in coverage. They had privileged socioeconomic status. When I worked with them, the hospital participants were embedded in the medical system. They were simultaneously seeing good progress, experiencing periodic plateaus, and worrying about lack of progress. Several had hopes, whether realistic or not, of regaining full cognitive functioning. They were beginning to realize that recovery or healing could be a potentially long and difficult journey. It was not my intention to limit my study to a privileged group of survivors. My decision to carry out the study at the hospital, however, meant that the socioeconomic characteristics of my sample were narrow. In addition, my clinician collaborator recruited persons he thought were intelligent, creative, and articulate, because they would likely provide rich data. He was correct, but his criteria further narrowed the sample. A Participant Withdraws One participant, an older teenager injured in a car accident, was recruited for the study but later withdrew. I had asked my collaborator to recruit some women, and he was complying with my request. The participant’s mother attended the informed consent interview and seemed eager for her daughter to participate. The young woman signed the informed consent form and appeared to be interested in the project. However, she never handed in her camera, and she did not return my follow-up phone calls. In the protocol, I specified how many times I would call participants before giving up on them. When she did not return three calls in a row, I felt that she was indirectly telling me that she no longer wanted to participate in the study. My collaborator and I suspect that this young woman may have felt antagonistic about her mother’s interest in the study and so rebelled by failing to hand in her camera, although we do not know for sure.

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Phase 5: Conducting the Hospital Study For the hospital participants, I was a TBI outsider—a researcher with a badge declaring my status. No matter how I might feel or what I might do to level the power dynamics between us, I was always in a position of “power over” these respondents (Gaventa and Cornwall 2001:73). One way I attempted to level our power imbalance was to give the participants as much control over the picture-taking process as possible. They had to use the project camera, but they could contribute other pictures if they wished. I encouraged them to take their study photographs within a two-week period, but said they could take as long as they liked. Purposefully, I provided only limited guidance on picture topics: “This study is about your experience with TBI. Take photographs of whatever reflects living with TBI from your perspective. There are no wrong answers.” One participant was very concerned about taking “the right pictures.” He asked me for an assignment, some suggestions. I asked him if he had any ideas, and he read a list he had prepared. They sounded excellent—the park where he goes to relax and enjoy nature, for example. He didn’t really need any suggestions from me. When pressed by other participants, I described two examples of photos: they could be metaphors (a photo of a rose could be an opportunity to talk about love), or they could be concrete representations (paperwork for a disability application). These two suggestions seemed to satisfy participants’ needs for photo ideas and satisfied my preference to keep the photo-taking process as personal to each participant as possible. A discussion of other methodological issues for the hospital-based study follows. The Photo Interviews I let the participants choose when and where they wanted to be interviewed. Two people asked to talk about their photos at the hospital. The third asked to be interviewed in his home. I will describe a hospital interview here, to illustrate some of the issues related to conducting interviews with the hospital-based sample. I did not have an office at the hospital. The first respondent and I hoped to use an extra lunchroom as a private place to talk, but it was full when we met for the photo interview. He suggested we speak in the hospital library. The quiet of the room and presence of two or three other people meant our conversation was constrained. First, we discussed the 12 photos the participant took for the study, in the order in which he had taken them (his choice). He spoke of his challenges and also the progress

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he was making in focus, ability to read, and stamina. Then we looked at the 27 personal snapshots he had brought. They were taken shortly after his injury; many illustrated happy family times he had missed because of his inability to tolerate stimuli. Talking about images from his early healing seemed to make him feel sad. I wanted to know more but felt it might be unkind or unethical to probe him on his feelings given our less-thanprivate location. We had just an hour and fifteen minutes before he had a rehabilitation therapy appointment (with my collaborator). His speech stumbled more as time went on, and I worried he would get a headache or be tired for his appointment. He seemed eager to talk about all of his photos in this one interview, which felt rushed. As we finished, I hesitated to ask him to meet to talk about his photos again, and he did not suggest it. In retrospect, it might have made sense to meet a second time. Discussing the two sets of photos at once, in the order we did, may have been a mistake. He might have felt more positive about the interview and his healing progress if we had talked about his personal snapshots first. Despite the data implications, however, I felt most comfortable ceding control of the interview location, timing, and photo order to him.3

Phase 6: Gaining Access to a Brain Injury Support Group After her photo interview with me, Laura F. expressed interest in joining a brain injury survivor support group. She remembered going to the “Mild” Brain Injury Survivor Support Group in Framingham, Massachusetts, soon after her injury, when she had found the meetings overwhelming. I offered to drive her to a meeting. Laura F. immediately bonded with the group and started attending its bimonthly meetings. The members granted me “insider” status in the group because of my friendship with Laura F., especially because we had remained friends after her injury. The group and its facilitator expressed interest in doing a photovoice project. Methodological decision points for designing the photovoice project follow. Why Do the Project? After our first visit, Barbara Webster, the support group facilitator, expressed interest in learning more about photovoice and applying for funding for a project. Barbara felt the project would build on the group’s

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recent experience with expressive therapies, an eight-week program provided through the Statewide Head Injury Program (SHIP) of the Massachusetts Rehabilitation Commission. She thought that benefits of photovoice would include opportunities for survivors to reflect on their lives, use their brains, and employ a variety of cognitive skills. These reasons meshed well with my values. Planning and Roles In April 2006, we began planning the photovoice project, to run from September to November, with Barbara, Laura F., and me as cofacilitators. Between April and August, we held several planning sessions. We set project parameters (number of sessions and session length), discussed recruitment (open to the entire group), and determined our inclusion/exclusion criteria (applicants had to commit to attending all sessions and taking on homework assignments). We developed a budget, session outlines, and ideas for adapting photovoice to brain injury survivors—for example, keeping the pacing realistic and allowing time for cognitive processing and emotional sharing. We secured funding from SHIP, and IRB approval from Brandeis. We prepared for start-up in September. Project Focus Together Barbara, Laura F., and I developed a list of questions for people to consider when thinking about what to photograph. They were: • What is it like to live with brain injury? • What in my life or community has helped me in my recovery from brain injury? • What has slowed my recovery from brain injury? • What do I want to tell other people about living with brain injury? • How is my life different now from how it was before? What is better? What is worse? • What are my hopes for the future? What might help me get there?

Phase 7: The Photovoice Project At the recruitment meeting, 10 support group members signed up for the project, an optional, extracurricular support group activity. Two dropped out before the first meeting. The remaining 8 met for 10 sessions from

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September to November 2006. We had stipulated that participants had to attend every session. In practice, several participants missed one or two sessions each due to headaches, doctors’ appointments, or trips. Briefly, our project steps were: Session 1: Introduction. Project overview; discuss photographs brought in by members; reflection. Session 2: Prepare to take photos. Discuss the ethics of being a visual “researcher” and taking photos at home and in the community; practice taking pictures with project cameras. Session 3: Share photo-taking experiences. Share experiences taking photographs and strategies to overcome obstacles. Session 4: Photo sharing. File first set of photos in personal binders; share a favorite photo so far; write a narrative as homework.4 Session 5: Share narratives. Photo sharing continues and narratives begin. Share experiences and favorite photos; discuss writing of narratives. Session 6: Share narratives. Share narratives written as homework. Session 7: Continue sharing narratives and develop themes. Look for common themes and categories for photos. Session 8: Plan for an informal exhibit. Finalize themes or categories; place photos and narratives in a relevant theme. Session 9: Informal exhibit. Participants, other support group members, and invited guests view and comment on photos and narratives grouped in themes; each participant shares one photo and narrative out loud. Session 10: Celebrate and reflect. Debrief; reflect on the benefits and challenges of the project (Lorenz, Webster, and Foley 2007). Sample The photovoice participants were all between the ages of 40 and 60 years old, had a recognized disability from brain injury, and were actively seeking social and practical support in a voluntary group setting. They included brain tumor survivors (2) and TBI survivors (6); and my two cofacilitators also have TBI. They were injured between 3 and 31 years before the project began and thus have a longer-range perspective on their lived experience with brain injury than did my hospital outpatient sample. The participants are high-functioning brain injury survivors: at the time of the project, more than half were working part-time or volunteer-

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ing. They traveled to our meetings from a wide range of communities in the greater Boston and central Massachusetts areas. Most drove their own cars; some used the personalized public transportation program called “The Ride.” Group Process The Framingham Brain Injury Survivor Support Group has an established group process that provides an atmosphere of mutual sharing, with opportunities for all to speak. The facilitator, Barbara Webster, encourages taking turns, listening, and sharing personal stories. During photovoice sessions, she made sure that everyone spoke (or was invited to speak) at every meeting. Participants already had a high level of trust with each other, and their level of sharing and trust increased over the weeks of the project. During meetings, participants regularly took the lead in probing each other about their photographs and experiences— often leaving me and my cofacilitators to be participant-observers. The meetings encouraged mutual learning among facilitators and participants alike. Power and Control Participants had power in the photovoice project, as seen in their use of language. For example, they questioned the word “recovery” in the photo-taking questions because it implies a desire to return to previous abilities and status, which they realize is impossible. They prefer “healing” because it implies continual progress over time. We substituted “healing” for “recovery” immediately. In addition, participants used the term “survivor” to describe themselves. I had not seen “survivor” in the TBI literature and started using it after being introduced to the group.5 One participant grew impatient with our group process. He pulled me aside and told me I was too democratic about our decisionmaking process, which he said took too long. He said I should just tell people what to do. I explained that my participatory approach was endemic to photovoice as participatory action research, and his comment made me very happy! The participant used to be a doctor and his comment may have stemmed from his positivist lens. As Barbara Webster pointed out to me, however, his comment may have indicated confusion when I used brainstorming techniques that involved writing on flip charts posted around the room. I may have inadvertently caused stress for survivors who needed information in more digestible chunks.

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My cofacilitator Barbara Webster and I wrestled over power and control issues. At times, she preferred to restrict the options participants could choose from, to make it easier for them to make decisions given their executive function challenges. Our conversations and e-mails sometimes grew heated as we attempted to balance my tendencies toward expansion and hers toward contraction, and our differing preferences for spontaneity and careful planning. Mutual respect and commitment to the project sustained us through tense periods as we attempted to balance participatory action principles, brain injury survivors’ needs, and the amount of time and energy required to facilitate the project and manage its logistics. We grew to respect our different strengths and developed a strong sense of mutual trust. Participants’ high level of power also had an impact on my study topic. The change began at the project recruitment meeting, when two brain tumor survivors asked me to remove the word “traumatic” from the photovoice project title, which changed from “Living with Traumatic Brain Injury” to “Living with Brain Injury.” Their request caused me to explore ABI versus TBI in the literature, discuss the implications of ABI versus TBI with clinicians and researchers, and develop a rationale for the change in my study. Photo-Taking Strategies Some group members felt uncertain about the nondirective nature of the photo-taking assignment. An issue debated during several meetings was: Should we plan our photographs, or should we take them spontaneously? Should photos be “intentional” or “circumstantial”? What if you want to portray the “fog” of brain injury by taking a picture of a cloudy day, but it isn’t cloudy when you have your project camera? One participant explained that he took his pictures “totally on impulse. In my kitchen I opened the utensil drawer and saw labels—for forks, spoons, and knives. It made me look around my apartment and see where I had labels everywhere, on my bookcase, on my dresser drawers. That is what it’s like for me with brain injury. I have these labels everywhere.” He took a picture of labels on his dresser for the project. Howard Becker (1986) posits that random, disjointed images taken on instinct are not narrative. He argues for using a structured approach to generating images for research. The group, however, decided that both spontaneous and planned picture-taking strategies were appropriate. One person left on a two-week vacation shortly after receiving her project cameras (she asked for both at once because of her trip). She filled

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both cameras with scenic moments on her vacation! At first her camera use appeared inappropriate—how did her photos relate to brain injury? She felt embarrassed and confused about what to do. Laura F. worked with her one-on-one to help her better understand the project purpose and how to use her photos to reflect her perspective on living with brain injury. With Laura F.’s assistance, the participant made good use of her vacation photos, wrote captions for several, and received positive responses from the group for her poetic caption style. Project meetings provided opportunities to discuss potential image topics. For example, how do you take a picture of chaos? In discussing topics and strategies, group members undoubtedly influenced each other’s photographs. One person, who used a third project camera after we had started to develop exhibit themes, took several photos for specific categories—strategies, for example. Photo Selection and Writing Narratives Participants selected which photos to discuss in meetings. With few exceptions, their selected images were included in the exhibit. One participant used someone else’s photo (of clouds, with permission from the photographer) because he thought it better expressed the “brain fog” he had intended to capture. Two participants contributed personal snapshots because they portrayed their photo topics (garden, dogs) in a more attractive light. People wrote narratives as homework assignments and read them to the group. One person dictated her narratives because she found it hard to write or type them herself. Some photovoice projects develop consensus narratives (Lykes, Blanche, and Hamber 2003). For our project, the writing of personal narratives seemed appropriate.6 Explaining the Project to Others—Disclose or Not? One person explained during a photovoice meeting that he did not want to tell people why he was taking pictures, because he did not want to disclose his brain injury. Injured eight years prior, he had only recently told his teenaged children about his injury. When asked by someone at the gym why he was taking photos, he said he was taking pictures of his life. “It kind of ticked me off at myself that I didn’t want to disclose about my brain injury.” Another participant, who had never disclosed his injury beyond close friends and family, said he told people at a park that he was taking pictures to help a friend with her research study. The issue of dis-

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closure also affected our exhibit format. After much discussion we decided not to include participants’ names next to their pictures to provide greater confidentiality for survivors who had not widely disclosed their injury. Several of us also hoped that, without names, the photographs would represent “everyman.”7

Phase 8: The Photovoice Interviews When the photovoice sessions were over, I offered participants an opportunity to speak with me one-on-one about their photos. Everyone wanted to be interviewed. These interviews took place from January to March 2007. As with the hospital study, participants chose where to be interviewed. Three asked to be interviewed in their homes, and three came to my home. One preferred to meet at a public library, another in a pub. Conversations that led to data appropriate for my narrative analysis methods took place in a private study room at a public library (1), my home (2), and a participant’s home (1). Privacy likely contributed to the richness of their data. The Interviews I will highlight my experiences interviewing two participants. They are listed here as “A” and “B.” They could be seen as “negative cases” in that our coconstructed interviews resulted, for one case, in no narrative data, and for the other, in narrative data that was too disjointed to be useful for analysis using my methods. Participant A. We met at his apartment. He had much to say about how people had changed (for the better—happier, talking more) as a result of the photovoice project. As people talked about their photos with the group, they found meaning, he said. He showed me the photovoice book he was creating to share with family, friends, and doctors. We spoke for two hours, but only 40 minutes about his photos (just two). He asked me about my background, my studies, and my interests. We talked about his daily schedule, the books on his shelves, and the art on his walls. He appeared to have an agenda, and it seemed best to let him follow it. We met a second time, also for two hours. He did not want me to record him because it made him feel inhibited. We did not talk about his photos at all. Riessman (2007:24) suggests that “narrative interviewing

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necessitates following participants down their trails.” What about a respondent whose trail did not lead where I wanted to go? I decided to let it go. He had spoken regularly about his photos during photovoice meetings. If he felt uncomfortable talking about his photos in a one-on-one research situation with me, so be it. Participant B. We spoke in her apartment. She greeted me at the door

with her dogs in tow and handed me a biscuit to feed them so they would get used to me. She showed me around her apartment and made me tea. We sat at a small, round table where she had placed her photovoice binder and a plate of brownies. Some of her photos were filed in her binder. Others were still in an envelope. She talked about the photos she had taken of her apartment without actually looking at them—they remained in their envelope. She showed me a collage she had created to illustrate the challenge of domestic violence, which she believes to be the source of her brain injury. She told me about the domestic violence lawsuit she was hoping to file against her former husband. She showed me some recent photos she had taken to reflect further on her life and build on the photovoice experience. Her dogs barked when they heard a noise or saw a bird fly by. Her two televisions blared. The phone rang twice. A locksmith came to work on her front door. Her cleaning lady came and took the dogs out, then came back in to work. Our conversation did not relate to her photos and was disjointed.

Phase 9: Using Narrative Analysis Methods “Narrative analysis refers to a family of methods for interpreting texts that have in common a storied form,” writes Catherine K. Riessman (2007:11). The family includes thematic analysis, structural analysis, dialogic/performance analysis, and visual analysis, and I have used all four methods in illuminating my participants’ lived experience with brain injury. Let us first consider how I am defining “narrative.” One form of narrative in my study is a series of participant photographs and their accompanying interview texts. Each narrative pertains to one participant (Williams 1984) and has a common theme or thread. Each narrative has several photographs and their accompanying interview text, to form a visual illness narrative (Bell 2002). Each visual illness narrative has several “excerpts”—four or five photos, each with accompanying interview text. A second form of narrative in my study is the thematic passages spo-

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ken by participants during photovoice meetings, as people shared their photographs and lives. The thematic passages often include content from several participants. Thematic Analysis With thematic analysis, content is the focus of analysis. With thematic analysis, scholars usually keep large chunks of spoken or written data intact, and focus their analysis on a case instead of looking for themes across cases (Riessman 2007:53). In using thematic analysis, I have worked with one person’s data (photographs and interview text) at a time and identified a different theme for each participant’s visual illness narrative. One participant is upset about the disorder in his life and feels frustrated about food—buying, storing, preparing, and tasting it. A second engages us in her ongoing struggle to reconcile what she calls the “darkness and light” of her life with brain injury. A third relates a narrative of identity in which she speaks in a “chorus of voices,” as chef, gardener, librarian, and brain injury survivor (Mishler 1999:8).8 Structural Analysis Structural analysis looks at the form of a narrative—its component parts—to gain insights that go beyond those suggested by its words or images (Riessman 2007). How is the story “made whole, coherent, and understandable” (Riessman 2007:81)? How does the narrator use “form and language to particular effects” (2007:81)? Similar to Gee (1991), my analysis structures the interview text into lines. Each line is about “one central idea, or topic,” and in most instances approximates a sentence or a main clause in a sentence (Gee 1991:22). I have grouped the lines into parts and given them titles that use words and phrases spoken by the participant. The titles allow readers to discern the overall structure and overarching themes of the interview text that accompanies each image.9 Dialogic/Performance Analysis Dialogic/performance analysis assumes cocreation of data, and the photo-elicitation interview, like all research interviews, is a “clear case of co-authorship” (Williams 1984:181). The data are created by “two active participants who jointly construct narrative and meaning” (Riessman 2007:23). I show cocreation of my study data in three ways. First, I

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include all my exclamations and noises in the structural analysis presentation. Even these simple sounds are integral to the dialogic nature of the data. Second, dialogic analysis is apparent in my questions, which likely had an impact on what data emerged (Mishler 1999).10 Third, dialogic analysis is seen in my participants’ responses to their chapters. Before finalizing each chapter, I mailed a hard copy to the participant. One person responded by e-mail. Two discussed their chapters with me in person. Their responses follow my analysis in each case study chapter. Visual Analysis With visual analysis, photographs “become ‘texts’ to be read interpretively” (Riessman 2007:142). Interpretive reading can involve looking at the details of a photograph. Becker (1986) suggests looking at an image for five minutes, which can bring out image details and provide hints of deeper meanings not apparent at first glance. My visual analysis strategy also involved reflecting on participant strategies for creating their study images (Rose 2007; Riessman 2007). Did they take their photographs in one day, two days, two weeks, or longer? Did they contribute family snapshots? Did they photograph people? My third visual analysis approach considered audience (Rose 2007; Riessman 2007): How is the image “read” by different audiences? Do the participants and I see their pictures similarly or differently? What do our differing perspectives tell us about living with brain injury? Robert Akeret (2000:224) suggests that “when story and image appear to contradict each other, a deeper truth emerges.” My respondents have imposed “something of themselves onto the subject of the photographs” when they capture the images and talk about them with me (Akeret 2000:36). In turn, my visual analysis strategies impose something of myself onto their images. In each of the three data analysis chapters, I reflect on myself as “audience” and how my life experiences and interactions with the respondents may have affected my choice of cases and themes, and my analysis of images and text.

Phase 10: Case Selection I used four criteria for case selection for my study: a case must (1) represent something important (Williams 1984), (2) be expressive in its portrayal, (3) be meaningful, and (4) engage us in the context of an illness

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situation (Radley and Chamberlain 2001). I discuss my choices of cases using these four criteria. Representing Something Important My participants represent a wide range of lived experience with brain injury. Variations among them include source and type of injury, time since injury, age at injury, and gender. It seemed important to portray the range of experience among my sample—the novices as well as the “seasoned professionals . . . in the difficult business of living with a chronic illness” (Williams 1984:176). I started by identifying a case study from the hospital sample, which represented brain injury “novices” recently diagnosed with TBI. I selected Subject D, who had “severe” TBI, which meant that he was in a coma for at least several hours. I then needed to select two cases from among my “seasoned” brain injury professional sample—the eight photovoice participants. Peggi seemed to exemplify the experience of survivors in the “midrange” of experience (injured 4 years prior). Judy represented the experience of a “long-term” survivor (injured 17 years prior). In considering Peggi’s and Judy’s characteristics more closely, I realized they also differ in source and type of injury: Peggi had a mild TBI and Judy had a brain tumor. Thus my three cases represent a range of types and sources of brain injury.11 Expressive Portrayal Expressiveness of portrayal requires an “extended account” (Riessman 2007:12). Five participants did not provide sufficiently extended accounts for my analytic purposes—their interviews were either too brief or too disjointed to be useful. I will briefly describe three respondents I “rejected” as cases for my study. Participant C. One hospital study respondent was a young man (aged 20) injured within the past year in a diving accident that resulted in a spinal cord injury and a brain injury. When we worked together, his speech was slurred and hard to understand due to paralysis. When we spoke about his photographs, he did not talk at all about his brain injury. We had gone over the study assignment, yet he did not take any brain injury–related images. He enjoyed the picture-taking exercise and was pleased to discuss his study photos, taken on an outing with his grandfather and brother. We also looked at photos he had taken near the hospital using a second disposable camera. Our conversation centered primarily on pho-

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tographic techniques—framing and angle, for example. His interview data were brief and thus ill-suited for my analysis approach. Participants D and E. I will discuss two photovoice participants together

because they have some similarities. Both were injured when they were about 20 years old and had been living with brain injury for more than 25 years. Both took very few photographs related to the study: one took most of her photos while on vacation, and the other took just 17 photos using three cameras. During our photo interviews, both seemed to lack interest in talking about their photographs, even though they had spoken regularly and eloquently during photovoice meetings and wrote moving narratives. In the photo interview neither provided an expressive portrayal.12 Expressiveness of portrayal implies that the account must be able to make us feel (Radley 2002). With Subject D, I felt great empathy for his situation and felt frustrated that I could not do anything to improve it. With Peggi, I felt intrigued about the duality of her life with brain injury, so effectively portrayed in her photos of black and white, light and dark. With Judy, I felt inspired by her ability to suffer a tremendous setback yet reach a point where she could accept her injury and look forward more than back. Meaningful As described by Williams (1984), meaningfulness can be a perception of the participant or researcher. For this criterion, I consider meaningfulness on the part of participants. Perhaps action is an expression of meaningfulness. The three cases I have selected for focus took action above and beyond study requirements. Subject D purchased a second disposable camera to take more photos. Peggi and Judy used three cameras each, took their photos with purposeful intent, and worked hard on photovoice outreach efforts. For example, Peggi secured funding for the exhibit, and Judy secured exhibit space at a library. These actions demonstrate that they found participating in my study to be meaningful. Engaging the Audience in Context Photo-elicitation interviews with six participants generated data that, in my opinion, successfully engage the audience in his or her context (Radley and Chamberlain 2001). All these participants showed us their daily lives, shared their feelings about living with brain injury, and helped

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us to understand their experiences through their eyes. All encouraged us “to enter the experiential world of their subject matter” (Reinharz 2002:261) through their photos. I excluded the other possible participants as cases for deeper analysis here because they are to some extent mirror images of the three cases I selected. One was newly injured, like Subject D. He plans to write a book about his experience, and I did not want to co-opt his story by including it in my book. Another participant is a “midrange” survivor of mild TBI, like Peggi, and thus duplicative of both time since injury and type of injury. The third is a brain tumor survivor, like Judy. My decisions to choose three cases and represent a range of experiences precluded me from including the similarly engaging cases described briefly above.

Phase 11: Writing Up the Results Writing can be a “method of knowing” in which “knowing the self and knowing about the subject are intertwined” (Richardson and St. Pierre 2005:962). My writing process began with an outpouring of “subjectivities of investigator and participant alike” (Riessman 2007:17) in what Van Maanen (1988) might have described as a “confessional tale” of Subject D. In part, I took a subjective approach to writing because I wasn’t sure where or how to start. I was also considering my audience, whose many interests and responsibilities compete for attention. I hoped to “keep [my] audience alert and interested” enough to read my chapter and provide feedback (Van Maanen 1988:106). I began by defining and selecting Subject D’s narrative (photos and interview text) and applying Gee’s ethnopoetic approach. I wrote about how the narrative and my interaction with Subject D made me feel. Neuroscience supports my approach—without emotion, there is no cognition (Damasio 1994; Martin and Clore 2001). Based on comments from readers, I began linking to the literature. And finally, I more closely analyzed the details of image, language, and structure. An important step in moving my first case study chapter forward was to pull out the “confessional” information and contain it in two separate sections—one toward the front of the chapter and another at the end. I hope these sections (“Researcher Reflexivity” and “Frustration and Confusion: A Researcher’s Perspective”) serve as a “self-reflective meditation [that] . . . provide[s] a deeper sense of the problems posed by the enterprise itself” (Van Maanen 1988:93). I hope they are effective at positioning me “as part of the field, simultaneously mediating and inter-

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preting the ‘other’ in dialogue with the ‘self’” (Riessman 2007:17) and show how my personality, intellect, experiences, and passions have shaped the knowledge gained (Reinharz 2002). As a method of knowing, writing is an iterative process. Knowledge gained during the writing of each chapter has impacted earlier as well as subsequent chapters. Writing as knowing requires much revision, and this book is no exception.

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4 Living with Frustration and Confusion In almost every interview for this study, a brain injury survivor used the word “frustrating” to describe the experience of living with brain injury. In each case, something is frustrating now that was not frustrating before. Frustration in persons with brain injury may be triggered by feelings of confusion when there is light or noise, when several people are talking at once, or when their damaged brain tries to absorb information. It can also be triggered by feelings of inadequacy or loss, when a survivor cannot do things that were easy to do before brain injury, or when people do not acknowledge invisible deficits. This chapter focuses on the frustration and confusion experienced by one brain injury survivor, who has asked to be called “Subject D.” I feel ambivalent about his choice of name, because the word “subject” runs counter to my values as a qualitative researcher studying a topic for which my research participants are experts (Balcazar et al. 1998) and using a process that acknowledges cocreation of data (Riessman 2007). However, consistency in applying my values means allowing “Subject D” to select whatever name he wants. Perhaps the dissonant nature of his choice enlightens us on what it is like to live with brain injury and to be a research “subject,” no matter how sensitive we (as health-care providers or as researchers) might wish to be. Over time, I have grown fond of the name “Subject D” and the self-deprecating sense of humor it suggests. I selected Subject D for this chapter on frustration and confusion for three reasons. First, he spoke about frustration more often than any other participant—five separate times during our photo interview. Others spoke once or twice about frustration. Second, a major source of his frustration, as it emerged during our conversation about his photographs, is his loss of the ability to taste food. Nineteen of his 54 photographs directly 55

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related to food, and food was a major theme in our interview. Food is such a basic part of daily life. We purchase and prepare it. We consume it and clean up after it. If food becomes a source of frustration, then the frustration must be constant, a feeling that cannot be avoided, a feeling that irritates every day. Third, Subject D made me feel frustrated. He did not seem to recognize his many strengths, from my perspective: a curious mind, strong intellect, caring nature, good sense of humor, and wealth of stories to share. I mentioned something positive in his situation several times in our interview; each time he ignored me. He seemed to see no hope in his situation. In this chapter on Subject D, I hope to provide useful insights about living with brain injury by exploring the conversation that Subject D and I had about his two new constant companions, frustration and confusion, as seen through the lens of his camera.

Getting to Know Subject D My contact with Subject D began in a somewhat typical way for my study. He was accessing outpatient rehabilitation services, and my clinician collaborator identified him as a good subject because of his intelligence and reflectivity. My collaborator had been meaning to invite him to participate in the project, but Subject D’s insurance coverage for rehabilitation services kept getting interrupted as his eligibility reached its limit and he had to go through an approval process before starting again. My collaborator suggested that I call Subject D to speak with him directly and gave me his phone number. I called that same day and left a message. He did not call back. His teenage daughter had erased the message. He called my clinician collaborator to explain what had happened, and my collaborator gave me Subject D’s e-mail address. We e-mailed back and forth a few times and he asked me to call, as it was easier for him than e-mail. I left another message on his answering machine. Four days later, he called and suggested I come to his house to speak with him, as he could not travel on the highway because of his brain injury. He said that everyone left the house by 9 A.M., so no one would interrupt us, and morning would be best. Subject D and I met three times for this study: first to discuss the project and go over the informed consent form, a second time to talk about his photographs, and a third time when I gave him his binder of photographs and a framed picture in appreciation of his voluntary participation in this study.

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Subject D is in his late 50s and good-looking in a mature, virile way, with thick hair and a thick mustache. His voice hints at a lifelong habit of smoking cigarettes. He was injured falling down his basement stairs as he descended to fix the water heater. He was in a coma for a month. He participated in this study about a year after his injury. We spoke in Subject D’s kitchen, sitting across the table from each other. He spends much of the day in his kitchen—it’s where he reads the paper and his books and magazines, where he eats and smokes cigarettes, and where he cooks. It’s also where he organizes himself—keeps his organizer and manages his day. He smoked cigarettes while we talked. Listening to the tape, I hear the flicker of Subject D’s lighter, the silence of his inhalation, and my dry cough as I inhale the secondhand smoke. He offered me a glass of water. We sat near an open window, which let in the sound of gulls, songbirds, carpenters working nearby, and a heavy summer rain that interrupted our conversation when he went out to close the windows of his wife’s car, which he had been detailing when I arrived.

Subject D as Photographer When Subject D and I met the first time to talk about the project and his potential participation, he did not think he would have many things to photograph, as seen below in an exchange from our informed consent interview. His text excerpt below, like the others in this chapter, is parsed into separate lines, each one about “one central idea, or topic” (Gee 1991:22). My words and sounds are italicized; all other text is Subject D’s. A period indicates a full stop. A comma indicates a brief pause, and a series of two or three dots indicates a longer pause. I don’t have a very complicated life. There’s not too many things I can think of to take pictures of. No? I hang around the house most of the day, And I go walk the dog in the afternoon. And I come back and cook dinner and watch the baseball game, go to bed. That’s what I do every day. Well, even documenting your day, I mean that’s part of living with brain injury, the things you do in your day.

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You could just take photos of those and talk about them if you want. It’s kind of hard to take pictures of myself taking naps. At first, the issue of taking photographs of people who could be recognized and the resulting risk to confidentiality threatened his participation in the project. “I don’t want my disease, my problem to have any record in government projects. You know, what if I apply for a consultancy or something like that and they say, ‘You can’t take him, he’s brain damaged. Look.’” I went directly from our informed consent interview to the rehabilitation hospital, to ask about revising the language in the consent form at Subject D’s request. Changing the form’s template language was not possible, but the research administrator assured me that a government review of this small study was highly unlikely. I conveyed my findings to Subject D, and he agreed to participate and signed and mailed me the consent form. Once he felt comfortable about the confidentiality of his participation, Subject D took to this research assignment with intent and enthusiasm. He completed his first roll of film in one day and immediately purchased a second disposable camera to take additional photos. “I don’t go out of the house very much, and when I do I have to take advantage of it, so I just shot off a whole lot of them,” he explained. His two cameras were in the mail to me within three days of our informed consent interview. The study emphasizes photo content over quality. Subject D said he did not pay attention to technical issues such as angle or framing when he took photos for the study. His focus on content and purpose, not technique, is similar to most participants in this study. Subject D took photos that show “the disorder” he lives with on a daily basis. With both cameras, Subject D completed the entire roll of film—27 pictures each. With his first camera, he took 24 photos in and around his house, yard, and garage, including 12 photos in his kitchen. With the first camera, he took just 3 photos outside of his home: 2 at a restaurant where he eats breakfast and 1 of a highway near the restaurant. “I don’t drive very far. So what I did, was figure out where I was going to drive that day and pictures I should take that would be relevant to this. Now all of these are in a very small area. It’s between here and my morning restaurant. It’s the house. I don’t think there’s anything else here.” With his second camera, Subject D took 22 photos outside his home: 5 of the grocery store, 1 of an ATM machine, 4 of town streets and municipal buildings, and 12 of the dog park, which he calls “puppy world.”

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At the park, he took 8 photos of dogs, and 4 of the places where he gives water to the dogs or sits and chats with other dog owners. With the second camera, Subject D took only 5 photos in and around his home. Table 4.1 provides a list of Subject D’s photo topics, by camera. Concern about confidentiality became a constraint on Subject D’s choice of photo subjects. He purposefully took no photos of people. This is not unusual, in my experience. Participants often feel hesitant about asking permission to take someone’s photo for a research study. Explaining the project could involve disclosing a brain injury—for some participants, disclosure can constrain taking pictures of people. Subject D took notes of photo topic ideas but did not refer to them while we spoke. He explained that the photos were like notes for him. “It’s the same thing as notes, except that it’s visual.” Once he had taken his photos, he threw the notes away. However, not taking pictures of people caused Subject D to forget one of the reasons why he took some photos—in particular of the park and the table where he and his friends sit and talk, and where his daughter plays checkers with one of his comrades. “Well, I didn’t take any pictures of people, so I forgot what the… park means to me now since my brain damage,” he explained during our photo interview.

The Photo Interview Subject D and I spoke for about two and a half hours about his photographs. I picked the first photo we discussed, and he chose the rest. The photos were in two piles, one for each roll of film. Once we got going, the photos were spread out on the table, not in any particular order, some photos covering others. He picked out ones that caught his eye. Generally speaking, we focused first on his house, and then on a restaurant, grocery shopping, his daughter, and the dog park. This roughly followed the order of his study photos. Subject D’s images were all of his current life, but our conversation ranged over a wide period of time, from his childhood to his 30 years in international development, his life after returning to the United States, and his life with brain injury now. Some of our conversation touched on our shared experiences living and working overseas. Subject D has much specialized knowledge about international development. He also has a wealth of knowledge about wine, cooking, baseball, boxing, and Islam. His wide-ranging curiosity has led him to learn, as he describes it, an “incredible stockpile of useless information that I

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Table 4.1 A Listing of Subject D’s Photograph Topics, by Camera Photograph Topic

Number of Photographs

Camera 1 Freezer with door open Refrigerator with door open Refrigerator with door open (no flash) Pantry Sink with soda pop cans Stove Kitchen trash near back door Area and table where he organizes himself Kitchen counter with radio and toaster Stove Front of refrigerator Reading materials on table in kitchen Color-coded notes on front door Area for storing shoes near front door Organizing strategies: pillbox, notebook, pill basket, etc. Back walkway and garden with flowers Messy garage Gardening tools outside on driveway Unfinished basement window project Highway from bridge Restaurant Bare spots on lawn Phone and organizing area for messages Desk and computer with papers Subtotal Camera 2 Downtown corner Highway through fence Town building Downtown street House in neighborhood Map of wines of France Bench and table at park Desk area in upstairs office Tomato and mozzarella salad Park and dogs Checkerboard set painted on table at park Vegetable aisle at grocery store Meat and cheese area at grocery store ATM Subtotal Total

1 1 1 1 1 1 1 1 1 1 1 1 1 1 2 1 1 2 1 1 2 1 1 1 27 1 1 1 1 1 1 1 2 1 10 1 3 2 1 27 54

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was really proud of.” He has many stories about his life—stories that he has probably told many times, and which still amuse and entertain a fresh listener.

Researcher Reflexivity My impressions of and feelings about Subject D may have influenced our interview and my analysis of his visual and interview data. For example, when we first spoke on the phone, I wrote in my notes that his voice sounded “deadened,” not a “natural sound,” and that he sounded a little “confused and angry.” I felt some trepidation about what lay ahead as I drove to his home to ask him to participate in the study. (I have since learned that this deadened sound in a survivor’s voice is a common sequela of brain injury and is called “flat affect.”) Second, Subject D reminded me of my grandfather, who also smoked cigarettes and had a permanent tan, thick body, and rich voice. The daily life that Subject D described reminded me of my grandfather in his later years—not much change from one day to the next, each day repeating itself in what appeared to me to be an endlessly dull routine. This struck me as a sad contrast to Subject D’s 30 years living and working in countries where one is rarely if ever alone, and where sharing a meal, story, or tennis court with local residents and fellow expatriates can be a daily occurrence. Our interview was like a game of backgammon, something I used to enjoy playing on summer evenings with my grandfather. There were the standard moves—the standard questions. There were the risks: Do I leave a man open or do I cover him up? Do I push Subject D by saying what I think or feel, perhaps different from what he is saying, or do I just listen and encourage? Do I ask him to explain himself, or do I let him slip by and head home? Do I challenge, or do I sit and wait?1 There were things about Subject D that also reminded me of myself. We both have lived in the same gritty eastern city where he grew up—a city where immigrants fueled industries that blackened the skies and held on to their identities even as they became Americans. We have both lived and worked overseas, where we fell in love with cultures and continents and people that welcomed our technology and money and tolerated our presence—our work and our play. We are both comfortable at being outsiders, surrounded by a culture alien to our own. We have a common sense of service to others, and a desire to make a difference in the world. Like many people, we also want to enjoy life—which for Subject D used

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to mean cooking, eating, drinking, telling stories, playing softball, and hanging out with the guys and their dogs. It was easy for me to feel both empathy and sympathy for Subject D and his situation as we talked about his photos and I selected and analyzed his study data.

Subject D’s Narrative of Frustration and Confusion Overview Subject D’s narrative of frustration and confusion has four photographs and their accompanying interview excerpts. In his selected image-andinterview excerpts, Subject D shares the frustration and confusion that dominate his life with brain injury. Terms he uses to describe these feelings and states of mind and emotion include “frustration,” “confusion,” “constant disorder,” “chaos,” “drives me crazy,” “flips me out,” and “freaks me out.” These words figure prominently in Subject D’s explanation of why he captured the images I have included in his visual illness narrative of life with brain injury. All four photographs depict food and common everyday tasks related to food: shopping for it, storing it, cooking it, tasting it, and cleaning up after it, though not in that order in these photos. I have presented Subject D’s narrative, “Living with Frustration and Confusion,” in the order in which we discussed its four photographs. His narrative begins with Excerpt 1, a photo of cans in the sink, which are an example of the “disorder” he lives with. It continues with Excerpt 2, a photograph of an open refrigerator, bursting with fruits and vegetables, which brings on confusion. Excerpt 3 shows the vegetable aisle of a local grocery store, where Subject D feels “utter confusion” in his brain. In Excerpt 4, we see a lovely tomato salad that reminds Subject D of “summer” and which he prepared with relish because he “forgot” that he could not taste it. Subject D’s photographs are used in this book with his permission. As noted above, each photo and interview excerpt has a title that first describes the image and then places it in context using Subject D’s own words. For each excerpt, the title is followed by the image and its interview text, parsed into lines and grouped into parts (preambles, parts, and/or codas), each with a title, using Subject D’s own words (Gee 1991:22). Anything I said during the interview is italicized; all other text is Subject D’s. A period indicates a full stop. A comma indicates a brief pause, and a series of two dots indicates a longer pause. A discussion follows each excerpt.

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Narrative of Frustration and Confusion: Four Photos and Their Interview Text Excerpt 1: Cans in the Sink, “The disorder that I’m living with right now” Prelude: It was supposed to make a point I think this is beautiful. This is a beautiful photo. That’s an accident I know, but it’s Just the way the light was I know, but it’s, it came out, it’s almost like a cartoon Well, it is. It was supposed to make a point Was it? .. What point? Part 1: I keep getting confused and lost The disorder that I’m living with right now Uh huh A lot of it’s my fault, because I can’t organize things any more, Like I go to a store, and I’m supposed to buy maybe ten things.

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It takes me an hour and a half. And I keep getting confused and, lost in the store, and, .. I get panicked sometimes if I go to a new store and it’s too big hm hmm. Part 2: Now everything is disorganized But the house is the same way. I can’t get my wife and daughter to put anything where it belongs, you know, just .. hm hmm They put everything on a, tabletop someplace. Which they’ve always done, and I just yell at them and not pay any attention, just go on out. But now it, it, it freaks me out Everything is disorganized, you know, I can’t find anything hm hmm Then, they keep putting things, you know just, stockpiling things on the front porch for example, And then they throw it all in the garage, So the garage is so full now I can’t get in there to get my tools. Part 3: I feel like I’m living in chaos and it’s hopeless Now I’m talking about something that every family has to deal with, especially if you have a teenage girl and a, um, a disorganized wife, but, um .. It drives me crazy now, I mean, just, the way my brain’s operating. hm hmm Your reaction, is different from how it used to be. I feel like I’m living in chaos and it’s hopeless, I can’t do anything about it hm hmm. Coda: These are appropriate pictures These are appropriate pictures. These are all the chaos Discussion: Cans in the Sink, “The disorder that I’m living with right now” This first photograph and its interview text ground us immediately in Subject D’s two major concerns as a brain injury survivor: his feelings of frustration and confusion. It was the first photograph we discussed. It set the tone for our interview.

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Subject D says that his intent here is to show the disorder that he lives with every day. His wife drinks “soda pop” and leaves the cans in the sink, which “freaks him out.” Subject D is using the image to show us confusion in the sink, but in his interview he talks about not just the environmental “chaos” in his life exemplified here but also his internal “chaos.” Together, this photo and text are showing and telling us about the confusion in his brain. The interview excerpt reveals coherence. Subject D begins and ends our conversation of his photo by telling me that his pictures “make a point.” They are not images taken at random. Subject D took them for a purpose: to show a non-brain-injured person what it is like to live with brain injury. He took pictures to depict the cognitive and emotional chaos in his life. As Subject D describes in the interview, he cannot organize his grocery shopping. He cannot get things done efficiently. Confusion at the store or at home gets in his way, distracts him, and he cannot avoid it as he used to. Before his injury, he would leave the house when he could not stand the cans in the sink, or the items strewn on tabletops. Now, he cannot “just go on out.” He has nowhere to go except to the park, to throw the ball for his dog. He has no control over the throwing of cans in the sink, nor can he avoid it. Thus he feels “hopeless.” Perhaps Subject D feels hopeless not just about the disorder he sees in this picture, but about the impairments from his brain injury. Concern about his potential for healing may exacerbate his feelings of “hopelessness.” He says that the disorder in his home, exemplified here by cans in the sink, “freaks him out”—another way of saying how frustrated he feels at his situation. “Frustration” and “confusion” are two common reactions by brain injury survivors to the question “What is it like to be brain injured?” and these terms are “used clinically when describing brain dysfunctional patients” (Prigatano 1999:33). Yet they seldom appear in the research literature “devoted to understanding brain dysfunction in individuals” (Prigatano 1999:33). The word frustration does appear, however, in the qualitative literature on brain injury survivors’ experiences. Ross Crisp (1994:18) describes survivors, struggling to have relationships and achieve goals, expressing “anger, frustration, and disappointment” when they are only partially successful. Annabelle Glover (2000:474) observes the participant of her case study growing angry, frustrated, stubborn, and unyielding “in his communication with others as he continued to find his situation wanting.” Brain injury survivors in Sweden describe feeling “frustrated when they struggled to remember and learn things they had no problems with before” (Jumisko, Lexell, and Soderberg 2005:46). A clinical psychologist

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in Canada whose brain was severely injured in a car accident says, “I would become so frustrated at people’s inability to understand me that I would stab the pencil through the paper, crumple it up, or hit out at those around me” (Linge 1987:322). C. R. Burton (2000) finds that one of the issues in emotional recovery for stroke survivors is anger/frustration, linked to loss of control over parts of the body and in their lives. Frustration in brain injury survivors can be an expression of internalized anger and can lead to pessimism and resentment (Delmonico, Hanley-Peterson, and Englander 1998). Frustration can be debilitating and may be accompanied by pessimism, bitterness, and irritability (Delmonico, Hanley-Peterson, and Englander 1998). It can damage existing or prevent new interpersonal relationships and lead to “social and emotional isolation” (Delmonico, Hanley-Peterson, and Englander 1998:20). For many people with brain injury, Subject D’s reaction could be seen as normal. George Prigatano (1993:184) notes that people with brain injuries “become frustrated” with “difficulties controlling temper,” and may “externalize the cause of their failures” and “blame others” for provoking them. Thus, Subject D’s reaction to his situation is not unique to him but represents feelings and behaviors that other brain injury survivors share with him, even when they do not want to. Subject D’s photo of cans in the sink shows a level of “chaos” that would be more or less normal in my home. For Subject D, however, the image depicts a level of chaos that upsets him greatly. With this image and interview excerpt, I see one thing and hear another. This dissonance between image and text, from my perspective, is emblematic of the dissonance experienced by friends, family members, coworkers, and even service providers, when a brain injury survivor lives with “invisible” disabilities. The “normal” appearance of the friend, husband, coworker, or patient leads others to expect that he or she is capable of making decisions, cooking a meal, or shopping for food—all things that he or she used to handle without experiencing either confusion or frustration. For Subject D, however, his image and interview text coincide. They show and tell of the confusion and frustration he experiences living with a brain injury. Excerpt 2: Stuffed Refrigerator, “Nothing’s where it belongs” Part 1: Too much stuff we never eat That to me is the constant disorder. I mean, nothing’s where it belongs,

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There’s too much of stuff that we never eat, My wife goes to the store and buys stuff she’ll never eat and the kid can’t stand, I don’t even know what it is half the time. What is the .. spelt? Oh, it’s a type of wheat that doesn’t trigger, um, the gummy stuff that can gum up your, Gluten, it might be gluten, it gums up your joints, and especially women, It seems to help women not have joint pain in their hips, if you use that kind of flour instead of other kinds of wheat flour But we’ve got closets and the refrigerator stocked with the stuff and nobody eats it, I don’t even know what it is yeah That’s just an example.

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This is good [the fridge]. It’s just, that there’s stuff in there that we never eat. And this is the stuff, before I go to the store, I have to take and throw it away And it’s an example of the disorder. Yeah. Part 2: I can’t taste I see lots of healthy stuff in that fridge too, fruits and vegetables. I keep my fruits here [in a bowl on the table], But during the bug season hmm I have to put them in the refrigerator. I eat huge quantities of fruit. hmm mm I can’t taste it but I can feel the sugar and the consistency. You can’t taste it?! I can’t taste anything! Salt and sugar, that’s all I can taste Was that because of your head injury? It’s from the head injury. Really? That must be frustrating2 Oh! That was my .. I had a reputation as a .. taste expert. Really? At least according to those competitions, you know, blindfolded, They give you a lobster and you have to tell where the meat comes from. Really? You mean tail, or claw or legs? Also I was a .. wine taster. I was raised with one and my grandfather was a bootlegger, you know, made wine in the basement, really good stuff. Huh! That’s how he made his living actually Wow. That must be really frustrating What’s that? That must be really frustrating, not to be able to taste It’s unbelievable, I can’t tell you how bad it is. hmm Part 3: I can’t cook And another thing is that I can’t cook. I can’t organize things uh huh First of all, I don’t remember recipes, Second of all, I can’t test what I’m cooking because I can’t taste it, And I can’t do more than one thing at a time hm

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I can cook broccoli, Or I can cook potatoes and then I can cook broccoli, And then I can cook a little bit of meat But I can’t do all three at the same time And they need to be ready at the same time, yeah, right And the other thing that happens is, All these women and my daughter sit around the kitchen and talk, Of course, that’s what people do! That flips me out, I can’t take all the stimulation. Hmmm, the noise Part 4: I’m embarrassed to tell people Well, yeah, and I really, I’m embarrassed to tell people, I can’t cook while you’re talking. Now doesn’t that sound stupid?! No But they don’t understand I don’t think it sounds stupid Well they just think I’m being my crotchety old self, Which is my reputation, but .. It’s really true, I can’t .. focus when all this stuff is going on Discussion: Stuffed Refrigerator, “Nothing’s where it belongs” Subject D’s image of a stuffed refrigerator, like the image of his kitchen sink in Excerpt 1, seems fairly typical of a middle-class US household. The refrigerator contains all kinds of food, from milk and juice and sparkling water to fruit, vegetables, meat, leftovers, and mustard. The items in front hide those behind. There are packaged foods and condiments, from mayonnaise to several types of mustards, hot sauces, ketchup, and salad dressings. Much of the food appears to be fresh, and fruit and vegetables take up most of the space on two of the four shelves. Perhaps there are fruits and vegetables in the drawers below as well, a lot of fruits and vegetables, as I commented to Subject D during our interview. In this excerpt, Subject D reveals his losses because of brain injury. He tells us he does not know or remember. He tells us that he cannot taste, organize, test, do, cook, or focus. As I have since learned, what Subject D describes are all typical consequences or symptoms of brain injury. In our conversation, Subject D’s losses pile up in front of and be-

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hind each other like the food crammed on his refrigerator’s shelves. His losses appear overwhelming. They obscure his past skills and accomplishments. They cause him confusion, frustration, and embarrassment. Subject D begins our conversation about his refrigerator photo by explaining why the image represents “constant disorder” from his perspective. He explains that he does not like having food in the refrigerator or on his shelves that no one will eat and he ends up throwing away. While his wife might disagree, he implies that she contributes to this disorder by buying food that is not familiar to him and that his daughter “can’t stand.” In our interview, he also notes that the full refrigerator is “good.” Subject D lived for many years in places where a refrigerator might be an unheard-of luxury, and the local onions, carrots, tomatoes, and rice begin to pall when other choices are not available. He may also see, in this image, access to a plentiful variety of fresh foods and a cold place to store them. In Part 2 of the interview excerpt, Subject D reveals what may be the biggest loss he has endured because of his injury: he cannot taste any of the food inside the refrigerator. He can taste sweet and salty but nothing else. This loss is a direct result of his brain injury, and there is no treatment for it. We do not “see” this loss of taste in the image. Once this loss is revealed, the full refrigerator becomes a poignant reminder of his devastating loss. Why devastating? Because it happened to someone who had a reputation as a “taste expert,” someone whose heritage includes a winemaker, someone who prided himself on his gustatory abilities. When I comment that this must be “really frustrating” he says, “It’s unbelievable, I can’t tell you how bad it is.” Loss of taste (microsmia), in conjunction with loss of smell (anosmia), occurs in approximately 25 to 31 percent of people who have a severe brain injury, as did Subject D (Reiter, DiNardo, and Costanzo 2004; Yousem et al. 1996). It can result from a shearing of neurons at the base of the brain as the brain moves back and forth against the base of the skull with trauma impact. It can also occur from bruising of the brain stem (Reiter, DiNardo, and Costanzo 2004). Patients with loss of smell and taste rarely regain these functions (Doty et al. 1997), although Frederick Linge (1987) reports in his personal journey of healing from brain injury that his loss of taste and smell partially returned after two years. In Part 3, Subject D tells us that he cannot cook anymore—perhaps because of his loss of ability to taste, but also a result of other typical brain injury outcomes: short-term memory loss, confusion, and challenges with multitasking and auditory processing. He can’t “remember recipes,” he can’t taste test his cooking, and he “can’t do more than one

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thing at a time.” In Part 3, Subject D says “I can’t” four times when referring to cooking. Meals are typically social time for families, and Subject D does most of the family cooking. Now he cannot cook when other people are in the kitchen and talking. Instead, he says, “That flips me out, I can’t take all the stimulation.” He acknowledges that he is overreacting, because people always talk in the kitchen: “Of course, that’s what people do!” He is telling us that he is the problem, not the others, talking in the kitchen and doing what they always do, doing what is “normal.” Perhaps his wife and friends are trying to normalize Subject D’s situation by including him in this family time of day. Because of his injury, however, a happy time, when people are talking while the meal is being prepared, reminds him of his challenges and becomes a source of tension and frustration. In Part 4, he explains that he is “embarrassed” to tell people that he cannot cook while they are talking. He thinks this sounds “stupid”; no one likes feeling stupid. He reveals that he has a “reputation” for being “crotchety,” so the women talking in the kitchen may think he is exhibiting a preexisting personality trait when he gets upset at them. His inability to focus on his cooking while people are talking is a new challenge for him, however. The invisibility of his injury combined with his preinjury personality may confuse his family and friends. If he was “crotchety” before, what is so different about now? Subject D starts this excerpt by talking about his refrigerator. He ends it by talking about himself. In between, we learn about his loss of the ability to taste food and his daily frustration in trying to cook for his family. In closing, Subject D reveals that his brain injury makes him feel embarrassed and stupid because he cannot focus well enough to fulfill a role that used to make him feel proud. In this image of his refrigerator, the tension, the grief and loss, the hopelessness this man feels as a result of his brain injury are not obvious. Once we have heard his story, however, his image of colorful abundance becomes a challenging reminder of a life that now lacks the joy that used to come from creating and enjoying a good meal with family and friends. Excerpt 3: Vegetables on Display, “A supermarket is just, utter confusion to me” Part 1: I get confused in here I took these because .. shopping, This is a very small supermarket, and I get so confused.

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It’s only got one, two, three, four, five .. five, sections, Why is it I can’t remember the word? You know, when you walk into a supermarket, what are they called? And I can’t keep track of ’em Three of them have nothing to do with me. I mean, this is, the vegetable part which I use all the time. I get confused in here, so Over the period of two years, I have places that I go directly. I just walk in and don’t look at the rest of the stuff, Because I happen to love vegetables, And I used to like to shop, you know, so Part 2: I’ll forget That was an old habit of mine that I can’t do any more, I’ll forget what I came in there for, I’ll start thinking about “boy, that would taste good with,” And I don’t .. can’t taste anything, And my family doesn’t eat vegetables, hmm So, a supermarket is just, utter confusion to me. Drives me crazy. I have to go to the same place every time.

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I have to use a list, Then I forget most of the stuff on the list, and, I can’t distract myself. If I put down Doritos on the list, which I wouldn’t, but if that’s what I put down, that’s what I have to go after. Right I can’t deal with all of the choices that you have and things like that. Right Part 3: I just, trying to organize things in my brain And then, it used to take me about 25 minutes to deal with my shopping chore, You know, just go through and buy stuff, and pay, and get out. I can’t get out of there in less than an hour and a half now. I just, trying to organize things in my brain, And I get all the way to the fifth aisle, and I forget, I’ve forgotten something in the first aisle, And then that confuses me And I get back and I can’t remember why I’m in the fifth aisle. Part 4: I want to laugh at myself Sometimes I want to laugh at myself. In fact, my daughter does laugh at me. She knows what’s going on when she comes with me. She just laughs at me. She does? Do you laugh with her? Well, what’s my choice? [both laugh] Coda: I was taking pictures of the confusion Maybe each one of these had a different .. message but I doubt it. .. I think I was I was taking pictures of the confusion Discussion: Vegetables on Display, “A supermarket is just, utter confusion to me” Subject D took five pictures at the grocery store, all of different aisles, including the vegetable and meat aisles from different angles. For analysis I chose a photo in which other shoppers could not be recognized, for confidentiality purposes.

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Subject D’s photo of a grocery store aisle shows a myriad of fresh vegetables neatly arranged on two tiers of long, slanted shelves that appear to run the length of the aisle. None is packaged in plastic; all are loose. Plastic bags hang above the shelves, for packaging the vegetables to be bought. Prices are listed in large letters above the aisle. Wire “fencing” guards the edges of the shelves, perhaps to prevent vegetables from falling to the floor. A man with his back to the camera appears to be restocking the shelves. We see a shopper farther down the aisle, but too far away to be recognized. Excerpt 3 has coherence, as Subject D both begins and ends our conversation about his photo by explaining his purpose in taking it: to show confusion. In Part 1, the lines of text lengthen as he talks about feeling confused in the store. Topics wander, reflecting his state of mind as he passes the vegetables and becomes distracted. In Part 2, however, Subject D’s speech becomes shorter and more focused as he speaks of his strategies for avoiding confusion: going to the same place, using a list, and refusing to get distracted. In Part 3, again the lines lengthen as we wander with him through the store, from aisle five to aisle one and back again. In Part 4, when Subject D and his daughter laugh at his confused self, again the lines shorten, perhaps hinting that humor is a strategy, like those he described earlier. In the two-line coda that closes Excerpt 3, Subject D reveals uncertainty. Did each photo of the grocery store have a different message, or were they all supposed to convey the confusion of living with brain injury? Subject D’s image of the vegetable aisle represents his entire grocery shopping experience as well as his experience with this particular aisle. He describes the supermarket as “utter confusion to me.” An added confusion for Subject D when he shops for groceries is his lack of ability to taste food. When speaking of the photo, Subject D talks about his love for vegetables and how buying them is an old habit. He remarks that he can’t taste “anything” and his family does not eat vegetables. No wonder shopping becomes a confusing exercise when he can no longer taste the food he used to love to buy and eat. Challenges with household tasks such as grocery shopping are common after brain injury. Linge (1987:325) says that once he had recovered enough from his brain injury, he “took over the planning and organization of the family’s meals, shopping lists, and some limited cooking.” He remarks that he enjoyed these tasks, but at first “they were quite an ordeal for the family” (Linge 1987:325). He describes a grocery shopping trip as occupying “an entire morning, with me making laborious lists, checking and rechecking” (1987:325). His physical disabilities

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slowed him down, also—just getting in and out of the car was a problem. Subject D’s physical disability—loss of sense of taste—slows him down by adding to his feelings of confusion and frustration in the store and in his life. Although we do not see Subject D’s daughter in the photo, he talks about her. She “knows what’s going on” when she goes shopping with him. She “laughs” at him, and he laughs with her. He loves his daughter very much. She figures frequently in our conversation. He indicates that she is someone who “understands” him; perhaps he is also saying that she accepts him. She finds his confusion in the store amusing, and her laughter makes him laugh at himself. Perhaps with her he does not feel as embarrassed about his new, brain injury–caused limitations. Humor is healthy, and perhaps the humor he shares here is a hint of acceptance of his situation. A hidden challenge in this photo and excerpt is the loss of executive functioning, which involves setting a goal, then figuring out and accomplishing the steps needed to reach it. Grocery shopping is a task that requires executive functioning. The loss of executive functioning—a common challenge after brain injury—impinges on the survivor’s ability to work and to carry out household or family responsibilities. It can cause the survivor to feel “stupid” and “worthless.” Some brain injury survivors can laugh at their inability to handle everyday tasks. Others get angry. Still others cry. Many do all three. Excerpt 4: Summer Salad, “It just has a feeling in your mouth, like rubber” Part 1: This is a sad thing This is, a sad thing that I did last week. I love at this time of the year, when you get the good tomatoes, I bought a tomato from New Jersey, Not one of these local things that don’t have any taste Part 2: This is part of summer So I was thinking about the taste of the tomato, And the olive oil, and the garlic, and the vinegar, and the mozzarella cheese, and the basil, And I made this thing for this guy that’s staying here and myself.

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I couldn’t taste it, I forgot! hmm Couldn’t taste anything, you know. Just thinking, to me, this is part of summer, This is something my mother used to make. Part 3: Couldn’t taste a damn thing Couldn’t taste a damn thing, especially the mozzarella. It just has a .. a feeling in your mouth, like rubber hm hmm, yes [We talk about other photos before returning to this one near the end of our conversation] Part 4: This used to be one of my favorite things I think one of the, now that I think about it, One of the reasons I was taking these pictures is, .. This used to be one of my favorite things, vegetables. Yes! Now it confuses me .. Or it frustrates me when I see a tomato like this, that’s local, Hmm In the middle of summer, there’s nothing better! Yeah! But I can’t taste it.

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Discussion: Summer Salad, “It just has a feeling in your mouth, like rubber” I selected this image for analysis in part because of the striking contrast between the image and what Subject D says about it—the beautiful summer salad that has “a feeling in your mouth, like rubber.” The salad is beautifully arranged, with a layer of red, sliced tomatoes glistening with olive oil, topped with a layer of fresh mozzarella cheese, and artfully placed basil leaves garnishing the whole. The plate’s leaves and flowers frame the salad, which looks delicious. The plate seems suspended in air, balanced precariously on the counter and threatened by the shadow that looms near it. The dark shadow and lack of edge to the counter create tension, implying that the photo has more to tell us than is apparent at first glance. In his photo, Subject D presents us with a beautiful salad that represents “summer” and his “mother” and “one of my favorite things,” yet no longer holds any pleasure for him because he cannot taste it. There is irony here. There is beauty, yet there is no real pleasure in the beauty. The salad image reminds Subject D of something that used to bring pleasure but now “has a .. a feeling in your mouth, like rubber.” The photo represents not beauty, but loss—not of the ability to make a tasty summer salad with an attractive presentation, but of the ability to enjoy it. Something missing from this photo is people. Only in our conversation do people enter the picture. As Subject D talks about the image, we learn he was making the salad for “this guy that’s staying here and myself.” We learn that “this is something my mother used to make.” As much as loss of taste, his image represents loss of quality time with other people and diminished opportunities for relationships. It represents fewer people in his life—people who could provide support and friendship, people he could care for, give to, or nourish in turn. The loss of relationships and difficulty sustaining relationships are common for many persons who survive brain injury, in part because of new postinjury challenges with patience and give-and-take (Stoler and Hill 1998). Confusion and frustration can affect emotions, behavior, and the ability to relate to and work with others (Prigatano 1993). Survivors frequently talk about losing their friends. The lack of nourishing relationships is a source of sadness for several brain injury survivors I know, even survivors who live with a partner or spouse. Subject D speaks of his image as a “sad thing.” Loss of relationships is a “sad thing” that, for many survivors, is integral to living with a brain injury. Subject D’s picture of a tomato salad is the only image in his narra-

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tive for which I included an excerpt that emerged later in the interview. As we were wrapping up, I explained that I would create a binder of the photos and interview text for him and bring it over another day. He asked to keep the set of interview photographs to “show his daughter,” and I agreed. As we were gathering them up, he noticed again the image of the salad, and spoke of his “frustration” at not being able to taste what used to be “one of my favorite things.” When Subject D first speaks about his salad photo, he does not mention frustration or confusion. Instead, he says he “was thinking about the taste.” He waxes poetic as he lists the salad’s ingredients: “the tomato, and the olive oil, and the garlic, and the vinegar, and the mozzarella cheese, and the basil.” In returning to the photo near the end of our conversation, he speaks again of thinking. He says the salad confuses him because it used to bring him joy but now feels like rubber in his mouth. In his reflection, Subject D appears to tell us his photo is really about his feelings—of frustration because he has lost the ability to taste. Perhaps the image is also about Subject D’s feelings of isolation from other people. Just as his lovely salad sits alone on the counter, perhaps Subject D, like many survivors, feels alone in his home and his life, alone in his loss.

Discussion Working with Subject D, I understood for the first time what a nursepractitioner friend calls “bearing witness.” I could not and cannot do anything about what Subject D is going through. It is not my job to improve his life. But perhaps just by listening I am affirming his story, so to speak—his truth, or the version of his truth he shared with me. By listening, by showing interest in what he has to tell me, I am acknowledging his suffering, his struggles, his view of what has happened to him, what he feels, what he goes through day to day in his life. In this moment, the future is not important. The “truth” is not important. What matters is unconditional listening. Research supports the therapeutic value of listening (Edwards 1998). In a study of the views of patients, families, and professionals on services for head and neck cancer, Edwards (1998:101) found that counseling did not help many patients, who said that counselors “had often not listened to them but tried to provide solutions to their problems.” Patients said that, in contrast, staff “who had taken time to listen to them . . . had helped them to come to terms with what they were going

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through” (1998:101). As one physician has noted, “between 40 and 60 percent of all therapeutic benefits can be attributed to a combination of the placebo and Hawthorne effects, two code words for caring and concern, or what most people call ‘love’” (White 1989 in Carroll 1998:41). Subject D’s injury was still relatively fresh when we spoke. He was still grieving for the abilities and life he had lost. It is possible that with time he will gain a new perspective on his injury and see it in a new light, as others facing life-changing circumstances have done before him (Becker 1997). He may yet “create meaning from chaos” (O’Connor and Chamberlain 2000:82). The focused, staccato lines that emerge when Subject D talks about his strategies or laughs at himself in the grocery store provide hints of a new perspective. Even with brain injuries as severe as Subject D’s, some people do over time come to “accept their fate,” though others continue to “resist and reject it” (Prigatano 1993:188). If I could not taste my favorite foods anymore, if I could not drive more than two miles from my home, if I had to live my days thinking of what I’d lost, wondering what the heck it was that I’d forgotten, then maybe I would feel pessimistic, too. And I probably would not appreciate it if someone told me to look on the bright side.

Frustration and Confusion: A Researcher’s Perspective In many of the photographs in this narrative of frustration and confusion, Subject D shared images that could have been taken in my own home. His image of cans in the sink could be my sink and counter—complete with plant and blender. His overly full refrigerator could be my own. For me, the “disorder” that he sees in these images is not obvious; they reflect a level of disorder that seems normal to me. The image of vegetables in the grocery store brings up similar feelings. The clean and nicely arranged fresh vegetables look great. Every week, I face the task of making choices among a vast array of fresh vegetables at a grocery store. I remember, however, how I felt in grocery stores after returning to the United States after living in West Africa, South America, and India. I felt overwhelmed by the abundance, the sheer quantity and choice of foods. The amount and variety and packaging seemed an obscene use of the world’s resources. In the image of Subject D’s local grocery store, I see the power and wastefulness of the US consumer society and feel frustrated and helpless about being able to change this situation.

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My feelings of frustration and confusion were not limited to Subject D’s images. His pessimism about his situation also frustrated me. I could see so much in him that is intelligent and funny, wise and caring. Yet he seemed to feel that all these qualities lay in his past. He did not see them in his present or future. He appeared to see himself only as “brain damaged” and “worthless.” I wanted him to feel differently. My decades as a tennis teacher, personal trainer, adult educator, and facilitator—when motivating people to learn, solve, and achieve was expected and valued— did not disappear as I began my study. Feelings of frustration commonly occur in occupational therapists who work with brain injury patients and can be accompanied by feelings of personal inadequacy, rejection, failure, and guilt on the part of healthcare providers (Rosa and Hasselkus 1996). These feelings of frustration can turn to anger (Gans 1983)—harmful to both patient and therapist, and leading to therapist burnout (Rosa and Hasselkus 1996). Feelings of frustration can also be evidence of caring and concern for patients and being personally engaged in professional work (Rosa and Hasselkus 1996). My feelings of frustration, hopelessness, and caring in working with Subject D are feelings experienced regularly by professionals working with survivors of brain injury. Experiencing these feelings is part of what living with brain injury can be like for many survivors and their families, providers, and friends. Perhaps in the future, participatory visual methods could be useful in exploring the patient-provider interaction for medical, speech pathology, and occupational and physical therapy students. Could these methods serve as reflection and teaching tools to help providers and patients listen to each other? Could these methods promote engagement and mutual learning among providers and patients?

Subject D Responds I e-mailed Subject D asking if he would like to read his chapter before I finalized it. We had had no contact for a year, and I did not know how he was doing. He asked me to send him a hard copy of the chapter. A week later, I e-mailed him again to inquire if the chapter had arrived and ask if we could talk. He responded: “I’ve been out of commission for a while. . . . I’ll Email you soon when I get back to reality.” I wrote that I would look forward to talking when he was up to it. Within a few hours he e-mailed me again with his response to the chapter.3

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I’m not sure I can offer much...not to impose insulting observations, but I really don’t have a clue what your thesis is about...especially in the school of international relations. I might suggest that you check out Executive Function screw ups in the damaged brain. An important observation might be how our conversations and photos express both frustration at the Loss of formerly instinctive thoughts and activities and the compensation mechanisms involved in the efforts to bring them back in speech or photos....eg, babbled recitation of related useless information, obsessive “practice” in explanations of lost awareness, compulsive focus on a subject until the diatribe wears itself out—which might not happen in a given time period. Most important might be the disorganization of topics and discussion, even or especially in monologues on vaguely related subjects (food shopping, driving, art history, ethnic groups of the Bolivian highlands)...its both a defense mechanism and auto-recovery therapy device....which works only in the impossible task of unscrambling short term memory. And I’m doing it here...realization upon realization upon realization...like acid trips of my youth. If we hadn’t been in the kitchen, I might have obsessed about landscaping frustrations or the destruction of our species by Bush and his ilk...anything to keep the mind busy, words flowing...with no intention or probability of an organized discussion. Remind you of international relations or diplomacy? I quit smoking long ago. When I analyzed Subject D’s photos and interview, I chose only images that related to food. Subject D also took photos of and talked about other things that frustrated him, including his yard. A photo of his yard and an excerpt from our conversation about it follow. In the excerpt, Subject D first refers to a photo showing flowers along the edge of the house. I did not include that photo because it shows the houses nearby and might be a risk to his confidentiality. A bit later in the excerpt, Subject D speaks of the photo that follows.

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A lot of people think it’s a work of art.

Oh, this is, this is brain damage. I like working on the yard. Every year I go out and plant flowers and redo the lawn. All summer this is all I’ve gotten to, and this [row of flowers, not shown] has changed places three times because I do it, a friend of my wife’s comes by and doesn’t like these flowers in that place, and, actually spends hours changing them, moving them from one place to another, and I come home and .. “what the hell have you done?” and she says, “[I] didn’t like them there, okay?” So, as a result, my summer’s been very confusing. The yard is a mess. I haven’t been able to keep up with the lawn at all this summer. .. And this [picture] goes with the yard pictures. I spent months straightening out the front yard. .. And, my good daughter and her friends were gonna, help me and wash all the windows one day, and they put ’em on the [points to the photo] .. so there’s my yard .. But a lot of people think it’s an art work, and that I did it on purpose, I’ve been known to do stuff like that. But it’s not a good idea to plant during the summer. Just have to water it all the time, so I’ll, wait until October and, dig it up and plant it again.

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5 Encompassing Darkness and Light With her narrative of five photographs and their interview excerpts, Peggi shares both the darkness and light of her experience living with brain injury. In North American culture, darkness implies something bad, negative, or evil. In Hollywood movies the bad cowboys wear black hats. Black is the conventional color for mourning. Light in turn implies something positive. In the Western tradition of painting, angels wear robes of white. These broad Western cultural assumptions underlie Peggi’s narrative of darkness and light. Maurice Merleau-Ponty (1962), however, cautions us to see colors in context. When placed next to each other, they reflect each other and are changed; colors are mutable. He warns against “treating the constancy of colors as an ideal constancy attributable to judgment” (Merleau-Ponty 1962:355). Applied to living with brain injury, the mutability of colors in context implies that darkness and light are relative concepts that can change over time depending on a survivor’s situation, level of healing, and mood on any given day. Merleau-Ponty (1962:355) posits, “color in living perception is a way into a thing.” I suggest that Peggi’s perceptions of darkness and light in her life as seen in her photos and interview text are a way into understanding her lived experience with brain injury. “Darkness” and “light” are just one of several pairs of opposing terms that Peggi used to represent the dichotomy of her life with brain injury, which she calls both a “blessing” and a “curse.” Physically, Peggi epitomizes the dissonance endemic to living with a condition that is not readily visible. She is striking: tall, blond, and square-shouldered. She exudes confidence, authority, and capability. It is easy to see the confidence and miss her unsteady gait, or her scowl when she is overwhelmed by several people talking at once. Peggi’s “mild” traumatic brain injury is not ap83

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parent visually or clinically (Jagoda et al. 2002). Her problems with memory, organization, and auditory processing more than four years after her injury are consistently surprising. “Even my family forgets!” she says. Looking “normal” is an advantage when Peggi prefers to keep quiet about her brain injury. “I don’t tell everybody. I don’t want my new self to be . . . all I am is a brain-injured person,” she explains. It has also worked against her—most notably when she sued the company responsible for the sign that fell on her head and ended her career as a respiratory therapist, medical researcher, and trainer. As Peggi describes it, a “professional witness,” a doctor with “degrees that were as long as my arm,” steadfastly insisted during the trial that mild traumatic brain injury “does not exist.” The consistent evidence from three neuropsychological tests, that Peggi has a “terrible time” with organizing and memory, could not convince the jury otherwise. After two weeks of trial, the jury awarded compensation for Peggi’s pain and suffering from the sign falling on her head, but no compensation for her lost decades of professional earnings. The jurors could not reconcile Peggi’s “normal” looks and her long-term cognitive challenges. As Alan Radley (2002:12) explains, “the acceptability of illness, like disability, is very much one of appearance.” Like almost three-fourths of the 1.5 million people each year whose head injuries are treated in emergency medical settings, Peggi’s injury was labeled mild (Langlois, Rutland-Brown, and Thomas 2004; NCIPC 2005). As with an estimated 15 to 30 percent of people with mild traumatic brain injury, however, Peggi’s long-term cognitive impairments resulting from her injury have been anything but mild (Lewine et al. 2007; Cajigal 2007). Peggi’s brain injury challenges her life daily. She forgets where she is driving, despite placing a note with the destination on her car’s dashboard. She is distracted by “constant background noise”—the television, someone walking past, people talking—that prevents her from focusing “on what’s in front of me.” Tasks multiply “like rabbits” into “moving furry targets” that make her feel “frustrated” and keep her from completing anything that involves multiple steps and careful planning. She relies on a cane for balance and “can’t stand up without” medication, whose copayment increased from $300 to $1,750 per dose when Peggi changed her health insurance plan. In our photo interview, Peggi describes numerous dimensions of the duality of her experience living with brain injury. Similar to other brain injury survivors, she separates her life into two parts: before and after injury (Chamberlain 2006; Padilla 2003). She looks well but has invisible disabilities. As has been found with other brain injury survivors, she

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is no longer her “old self” and is learning about her “new self” (Nochi 1998; Pollack 1994; Chamberlain 2006; Padilla 2003). Similar to persons living with a range of chronic conditions, she describes “bad days,” when she dwells in “darkness,” and “good days,” which are “all about the light” (Charmaz 1991). In this chapter, I will explore the dichotomy that Peggi feels and shared in her photos and our conversation about living with brain injury.

Getting to Know Peggi Peggi and I met in September 2006 when she attended the recruitment meeting for a participatory research project using photovoice that I cofacilitated with a brain injury survivor support group in Framingham, Massachusetts. That project, originally planned for 10 weeks, has to date continued for more than two years. Thus, Peggi and I have more than a brief and temporary acquaintance. We have an ongoing relationship, rooted in the deep sharing that occurred as group members talked about photographs, and nourished over time as we created an exhibit and worked together on outreach and education activities. Peggi arrives promptly at group project meetings. She uses a cane to maneuver around the bulky chairs, turned this way and that around the table that fills the room where we meet. On “bad days,” when headache, noise, or fatigue is “too much,” she wears a baseball cap with the visor pulled low over her face. On “good days,” she wears bright, flowing clothing and a smile. During the group meetings, Peggi talks regularly about her photos, her photographic process, and her life. She is vocal in asking other participants about their photos. She is enthusiastic in suggesting outreach and education ideas and volunteering to take on tasks to turn an idea into a reality. She is gracious about sharing responsibilities for executing tasks when she tires and cannot fulfill her prior commitments. As with other participants, her cell phone interrupts our group meetings, particularly around 3:00, when her son calls to remind her to pick him up from school.

Peggi as Photographer Peggi’s main purpose in taking photos was “to show the dark and light” of her present life. The light represents the “good days,” when she can “see a way out of the shadows into the light and blue sunny skies.” The

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dark is “all about the shadows,” when Peggi feels “cynical . . . and less patient, and less understanding, and more irritable, and overwhelmed.” She was both spontaneous and purposeful in taking pictures, although the spontaneous part was more difficult. She found that she could not remember to take her camera out of her purse as she was “going around, having [her] day.” What worked better was to set aside time for taking photographs and to write it into her schedule. With the first camera, Peggi felt rushed. “I didn’t have time to think about my pictures,” she said. “I wanted to take a foggy day.” She was one of four participants who used three cameras. By the third camera, Peggi felt more confident about getting the pictures she wanted. She took a total of 55 photos—21 images with her first camera, 13 with her second, and 21 with her third. She took 20 photographs of people, including herself, her boyfriend, two sons, lawyers, and therapists. With the first two cameras, she took most of her photographs indoors— in her home, in the home where she babysits, and in various professional offices. With her third camera, Peggi took most of her photos outdoors— 20 of 21 images were taken during a day trip to New Hampshire and in a cemetery. Table 5.1 provides a table of Peggi’s photo topics. Many of Peggi’s images are metaphors for her feelings. For example, a gravestone represents the death of her “old self,” a path in the woods designates the “journey” of her life since brain injury, and a skylight in a darkened ceiling indicates the “hope” that keeps her going on “dark days.” Peggi found images and metaphors useful for communicating her feelings and experiences during the group project and in our photo interview. Hermine Feinstein (1982:47) might suggest that Peggi’s use of visual metaphors shows her “attempt to comprehend, construct, and convey meaning” in her life with brain injury. Peggi also took photos that depict more tangible aspects of her life with brain injury: a messy desk shows her disorganization now; elevator buttons reveal her inability to remember which button to push when she attends brain injury support group meetings; and a list taped to her kitchen cabinet shows her strategy for remembering its contents. In our photo interview, however, Peggi spoke almost exclusively about her photos that are visual metaphors.

The Photo Interview In November 2006, as the first phase of our group project drew to a close, I asked if anyone would like to talk with me one-on-one about their pho-

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Table 5.1 A Listing of Peggi’s Photograph Topics, by Camera Photograph Topic

Number of Photographs

Camera 1 Kitchen cabinets with labels Boyfriend/partner Mural at school Child she babysits Floor Skylight Drugstore Sons Lawyers Checklist posted at front door Support group Mistake (fuzzy) Subtotal Camera 2 Photovoice project facilitators Hooks on wall in meeting room Therapists Self Floor near desk Chess set Kitchen Mistake (fuzzy) Subtotal Camera 3 Elevator buttons Bare-branched tree against gray sky View from top of mountain Ladder on path in woods Path in woods View of mountain from path Mistake Wooden struts of bridge View of river from bridge Cemetery gravestones Friends View from window near desk Computer screen Subtotal

3 1 2 2 1 2 1 1 13

Total

55

1 3 1 3 2 1 2 3 2 1 1 1 21

1 1 1 1 1 1 1 4 1 4 2 2 1 21

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tographs for my research study. Peggi declared that she had already said all she wanted to say about her photos, but she was willing to meet with me if I wanted. When I called to set a time for the interview, she again warned me that she might not have anything more to say. We had to reschedule our first appointment because she had a migraine. We spoke a few weeks later, at my house. Our conversation occurred about four months after she had finished taking her photographs for our group project and this study. We spoke in my basement office, sitting next to each other on a couch, her binder of photos in front of us on a table. Her binder was neatly organized. The photos were filed on white paper protected by clear plastic sleeves, the handouts in order, the binder’s sections marked by tabbed separator pages, as modeled in our group meetings. The organized state of her binder contrasted sharply with some participants’ binders, which had papers and pages crammed in a mishmash of weeks and months of working together. As we started talking, Peggi sat straight and tall. She punctuated her words with body language. When she talked about the darkness looming, she stretched out her arms and curled her fingers as if to frighten or attack. To communicate her feelings, she used sounds: a long, drawn-out “ugh” communicated a feeling of helplessness. Her neck and back tired as we talked, and she leaned back against the couch and supported herself with cushions. We spoke for about an hour and a half. Peggi chose which photos to talk about as we worked our way through her photos, camera by camera. Often her images served as taking-off points for wide-ranging discussions of her life with brain injury—for example, her reactions to her “new self.” She spoke about one photo for almost 10 minutes. She refused to be distracted by the furnace as it periodically roared into life, or the telephone ringing. She surprised herself as well as me by how much she had to say.

Researcher Reflexivity Peggi has memories of being in charge. She is comfortable making her needs known. At times I felt challenged when Peggi suggested alternate ways of doing things—for example, using her own camera instead of a disposable one provided by the project. The thinking required to consider and respond to her questions and suggestions was good learning for the group. Using project cameras instead of our own meant that all

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participants were on the same footing. No camera was better than any other. It lessened the pressure to take “good” photographs and emphasized photo content over quality. Discussing the many issues that Peggi raised throughout the project and developing group decisions about them were good practice for me in patience and group dynamics when I might rather have said, “Well, that’s just the way it is!” Peggi has a fierce intelligence as well as strong experience in instructional design and marketing. Her skills were invaluable when we began the outreach portion of the group project, for example, designing our exhibit and take-away materials. Peggi accomplished many significant tasks, such as securing funding for printing costs. Yet, due to limitations inherent to brain injury, Peggi could not always follow through on the ambitious ideas she had birthed as they grew into complex, multistep tasks. I wrestle with the challenge of follow-through in my own life when my enthusiasms outrace my ability or energy to accomplish them, and I exhaust myself and the people around me. I have learned to recognize and be patient about this tendency in myself, which helped me to feel patient with and supportive of Peggi, even as my cofacilitators and I grew exhausted. It was both energizing and draining to help furnish a supportive environment in which Peggi and other brain injury survivors could practice old skills and establish new ones. In my experience, this dichotomy, a bouncing between excitement and exhaustion, is endemic to participatory action research projects. It was especially true of this project, in which collaborators who look (and are) skilled also have invisible challenges. My multifaceted relationship with Peggi inevitably influenced our interview as well as my selection and analysis of her visual and interview data.

Peggi’s Narrative of Darkness and Light Overview Peggi’s narrative of darkness and light has five photographs and their accompanying interview excerpts. In each of the selected images and excerpts, Peggi shares the dichotomy of her life now, with brain injury, where her “old self” “bumps up” against her “new self.” The theme of darkness and light recurs throughout the excerpts. Her narrative, presented in the order in which we discussed its photographs, begins with Excerpt 1, a light-filled skylight, which in part rep-

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resents hope on Peggi’s “dark days.” The narrative continues with a photograph of a floor, where tiles and wood are symbolic of the dark and light of her life. The third photograph is a mural where “promise and hope and creativity” are “fading into darkness.” In Excerpt 4, a game of chess represents Peggi’s divided world. In the final excerpt, a photo of a leafless tree against a gray sky prompts Peggi to explore the challenge of “learning the new me” now that she cannot be her “old self.” Peggi’s photographs are used in this book with her permission. Each photo and interview excerpt has a title that describes the image and places it in context using Peggi’s own words. The title is followed by the image and its interview excerpt, parsed into lines and grouped into parts (preludes, parts, and codas) (Gee 1991). Each part also has a title, using Peggi’s own words. Anything I said during the interview is italicized; all other text is Peggi’s. A period indicates a full stop. A comma indicates a brief pause, and a series of two dots indicates a longer pause. For some excerpts, I deleted selections from our conversations due to chapter length considerations. As modeled by Mishler (1999), I have noted in brackets the gist of the deleted sections. A discussion follows each excerpt. For some excerpts, the discussion presents exchanges among participants during photovoice project meetings, when participants talked about their photos and lives. For participant exchanges embedded in the text, I have identified the speakers by their first name and last initial. For participant exchanges pulled from the text and parsed into lines, I have identified the speakers using their initials. “P.R.” is Peggi.

Narrative of Darkness and Light: Five Photos and Their Interview Excerpts Excerpt 1: Skylight, “There’s light in the dark” Part 1: I’m in a cave sometimes it seems That’s just, you know .. I like that one The sense sometimes, I’m in a cave sometimes it seems, hmmm Looking out. Without being able to really see anything when you look out

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Part 2: You can’t get out, and you can’t get in You can’t get out. And you can’t get in. You can’t get up there. hmmm It’s sort of, like, “huh!” Part 3: But . . . there’s light in the dark But, it’s hopeful, you know? uh huh There’s light in the dark. Yes. Well, that’s interesting. But kind of almost unattainable, hm hmm you know? Discussion: Skylight, “There’s light in the dark” Peggi’s image of a skylight is both striking and abstract. I see a parallelogram whose sharp lines and distinct geometric shape stand starkly against a field of black. Without the title and interview text, I would be challenged to discern what the image portrays. Peggi’s interview excerpt is brief. The lines are short, especially in Part 2, when she uses the word “can’t” three times in a repetitive refrain. The rhythm and repetition of Part 2 remind me of a nursery rhyme or a

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chant that children might use to taunt a vulnerable “other.” Her use of language seems self-deprecating: “that’s just,” for example, as if denigrating her image and its power to communicate isolation and longing. Explaining her photo, Peggi conveys a sense of being stuck—aware that she is surrounded by the darkness of her cave, yet unable to get up to the light of the outside world. Peggi concludes her conversation about the photo by explaining that the image is “hopeful” because “there’s light in the dark.” She intimates that the hopefulness is almost out of reach, like the skylight. Peggi is using her image to make known her feelings. When Peggi spoke of the photo with the group, she explained that it represents a “good day,” when she sees “light and . . . an escape . . . a way out of this darkness,” which she also calls “the shadows.” Kathy Charmaz (1991:50), in describing lived experience with chronic illness for persons with a range of conditions, describes a “good day” as a day when illness “remains in the background of their lives.” A good day can also mean “being the self one recognizes” and a day when “nagging fears about the future all recede” (Charmaz 1991:50). A “bad day,” on the other hand, is marked by “isolation” when “illness . . . takes center stage” (1991:51), and the self bears “little resemblance” to the person one wishes to be (1991:52). Peggi, like Charmaz’s informants, appears to identify a good day as one in which illness recedes to the background. Distinct from Charmaz’s informants, however, Peggi appears to relate good days and bad days to color: darkness for bad days, and light for good days. Peggi’s discussion of light and shadows in her skylight image prompted the following exchange between Peggi and David S., a man who received his brain injury eight years prior when his car crashed into a moose. P.R. The bad days it’s all about the shadows D.S. Friends who left People who I thought were going to be there After the accident Were nowhere to be found. It was the people who I didn’t expect to be around Were, like, right there. And it really hurt. P.R. Yah! D.S. People I hadn’t seen in years were calling. They were really supportive. People who I thought were friends Really weren’t friends.

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P.R. Really were not friends And how that changed my whole outlook on the world D.S. Made me very cynical P.R. Wanting to isolate myself D.S. Shut down P.R. Shut down, Stay away, Stayed in bed. I hibernated for a year or two. Just didn’t go out. Peggi and David S. are speaking about what it was like for them soon after their injuries. Both of them “stayed in bed” for two years as they recovered. They isolated themselves, “shut down,” “hibernated,” and grieved for lost friends and lost selves. The sense of isolation that Peggi and David S. describe implies loneliness, which Rosedale (2007:204) describes as “an opportunity to transcend unimaginably painful conditions and search for meanings.” A period of isolation can also be an opportunity for healing—perhaps even necessary to healing for them. Brain injury can cause extreme sensitivity to light and noise (Stoler and Hill 1998). Isolation may ease the pain and confusion of too much stimuli during the early healing period. Peggi and David S. each hibernated for “a year or two.” For some brain injury survivors, isolation and loneliness can become habits, reinforced by an ever-narrowing circle of friends, activities, and relationships (Charmaz 1983; Charmaz 2002; Pollack 2005). Excerpt 2: A Friend’s Floor, “I was trying to get the darkness and the light” Prelude: That’s just a friend’s floor That’s just a friend’s floor And I was trying to get the darkness and light .. Yup. Similar to the other photo. Part 1: The world of my belief that meets with the reality There’s, almost two worlds That butt up against each other

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The world of my .. belief of how I am now, That meets with the reality of, That I’m not that way, you know? Part 2: I convince them and myself that I’m my “old self” One of the things I’m good at is I can sit and talk to people And say, “Yeah, absolutely. I could do that. I can totally see I could do that.” Yes. Part 3: Then the reality keeps comin’ up And I convince them and myself that I’m my “old self.” And they .. if they know my “old self,” They’re, “Well, great. Good. Take it and run.” Okay. And then the reality keeps comin’ up Discussion: A Friend’s Floor, “I was trying to get the darkness and the light” In Peggi’s image of a friend’s floor, I see dark, pitted tiles flush against a wooden floor whose boards emphasize its linear nature. The tiles de-

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note structure, but the organic, mottled color of the stone dominates. Seen out of context, the two halves of the picture appear to oppose each other. Peggi’s interview excerpt has coherence. It both begins and ends with “reality”—a reality that she appears to believe exists only outside herself. Peggi explains that her inner world is her “belief of how I am now,” and the outside world is “the reality that I’m not that way.” Even Peggi forgets that she is no longer as capable as she once was, when she received an award for “Respiratory Therapist of the Year” in Massachusetts. After brain injury, short-term memories can be slippery, while memories of past competence endure. As Peggi says, I have the memory of being competent. And I’m still competent in some ways But I’ve lost some of my areas of competence. And nobody gave me a list of what I lost. Peggi takes on tasks that, based on past competence, she thinks should be easy (Nochi 1998). Because of her brain injury, however, they are not. In a study of brain injury survivors’ loss of self, Masahiro Nochi (1998:872) identified “loss of self by comparison” as one of the three major themes that emerged from informant interviews. Survivors commonly compared their current self-image with one from the past: I used to be “such and such” but I am “not like that any more” (Nochi 1998:872). Mary Feldhaus-Weber (2003:51), who was severely brain injured in a car accident, describes feeling that “I was a stranger to myself. I was lost.” Any injury (not just brain injury) “which results in sudden disability poses a particularly potent challenge to self-identity” (Mattingly 1998:118). If the body—or mind—is suddenly changed, “does the self come to an end in some way?” (118). Perhaps in telling stories of her life in the context of this research and the support group, and in day-to-day living, Peggi is showing us how her new self gets “constructed and communicated” (119). When Peggi discussed her floor photo with the group, other participants echoed her experience of the death of a former self. One said, “It feels like we’re treading water, or slipping around,” instead of “accomplishing things.” Another explained that he can spend as much as four hours “paying a bill and checking an e-mail.” For brain injury survivors, disabilities due to brain injury can be a constant reminder “of the contrast between the past and the present” (Padilla 2003:421).

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Making comparisons between the “old self” and the “current self” brings up feelings of blame, anger, and sadness. When Peggi fails to negotiate “simple” tasks, such as inputting e-mail addresses for the parentteacher organization at her son’s school, she feels like a failure. Brain injury survivors may feel their failures keenly and judge themselves when they fail at simple tasks “again and again” (Feldhaus-Weber 2003:52). For Peggi, comparing her new self and old self and noting the impairments in her brain-injured self are the “emotional part” of living with brain injury. As she explained during a group project meeting, “To always compare our old self with our current self is painful.” When Peggi spoke about her floor image during a group project meeting, she brought up an aspect of her experience that did not emerge during our photo interview, several months later: This photo represents light and dark, Both my past life of light, structure, a meaningful and directed pathway, And then the spotted dark and hard surface of my new life, Where I am trying to make pathways. And then again, perhaps my new life is becoming less dark, less difficult, more structured, So it is sort of both. Going back to the light. In the context of the group, the structure of the tiles on the floor appear to have inspired Peggi to see her new life with brain injury as becoming “more structured” as she tries to “make pathways” in her brain. In the group context, Peggi shared a self that is growing more competent. She spoke of a new life that is starting to integrate elements from her old self and the new Peggi. The brain injury support group offers a range of activities—from sharing lives to working with puzzles, visiting local nature reserves, learning how to ride a bicycle, and participating in expressive therapies and photovoice. Group members who joined photovoice seek companionship with peers, opportunities for emotional healing, and ways to help their brains forge “new pathways.” Explaining her floor image in the context of the group prompted Peggi to share a more positive reading of the image than she did when “audiencing” her photo for me several months later (Rose 2007). Charmaz, in an article on the “self as habit” (2002:35S), suggests that “habits can become a bridge between self as process and self-con-

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cept as a stable object.” Perhaps habits of successful coping practiced in the context of the support group are forming a bridge that lets Peggi move more easily from dark to light, from old self to new self, from despair to hope. We do not see a bridge in her photo, where wood and tile bump sharply against each other. Yet in speaking to the group Peggi suggests that the distinction between old self and new self is not as sharp as it appears in her image of the floor. Perhaps repetitive memories of successful coping are taking root in her brain and becoming her new “reality.” Excerpt 3: The Mural, “You can be grateful . . . or you can curse” Prelude: This is a mural at my son’s high school This is a mural at my son’s high school. Part 1: Promise and hope and creativity . . . fading into darkness There’s all this .. promise and hope and creativity and .. Then it’s fading into darkness hmmm

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So it’s sort of also .. like .. Wanting to .. attain .. a goal .. But also having this darkness of .. It’s not just about trying to get to the goal, There’s darkness creeping in. There’s, you know .. There’s a dark side. Well, I try not to focus on that stuff. Part 2: Sometimes . . . it’s okay Yeah, the dark, you know, The .. anger, the .. despair, the .. loss, sense of loss. That you try to pretend isn’t there sometimes, And sometimes, it’s there And you accept that it’s there And you’ve encompassed it And it’s okay. Part 3: Other times . . . it’s coming to get you But then there are other times When it’s coming to get you. So it’s hard to, um .. Sounds a little scary. Yeah, a little scary. Part 4: You can be grateful . . . or you can curse I mean, just the loss of, It’s just, you know, I .. You can be grateful .. For huge changes in your life that you didn’t expect .. Or you can curse them .. But you can do both too, you know? Part 5: Sometimes I wonder . . . how different things might have been Some things are good. Some things I wonder if, That accident hadn’t happened, If I could have, would have .. if How different things might have been. Hmmm

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Coda: One of those life things Yeah, but, but they’re not. Hm mmm It’s one of those life things, you know? Discussion: The Mural, “You can be grateful . . . or you can curse” A mural at her son’s high school presented an opportunity for Peggi to continue to speak of darkness and light. The quality of light in the image—the perception of “fading into darkness”—results from the limitations of the flash on the study cameras. Peggi used the camera’s distortion to communicate her experience not only in our photo interview but also during a group project meeting: I like it that the photo shows the mural goes on into the darkness As this demonstrates how I can only handle so much information at once And then it becomes too much And is dark to me in my comprehension Her statement prompted a loud murmur from the brain injury survivors present. In this second excerpt, Peggi equates light with “promise,” “hope,” and “creativity” and darkness with “anger,” “despair,” and “loss.” She describes a strategy she uses to avoid being enveloped by darkness: she tries “not to focus on that.” Focusing on the brain injury patient’s “remaining assets” and avoiding a focus on “residual deficits” is a recommended therapeutic approach for brain injury survivors (Pollack 2005:654). In Excerpt 3, Peggi delves deeply into the dichotomy of her experience with brain injury and her perceptions of her healing process. She reveals the promise and hope of healing and shares the feelings that threaten her progress. She acknowledges darkness but resists its presence. She chooses to encompass her “despair” and “loss,” an act that seems both painful and hopeful. The word “encompass” can mean an encircling, in which anger, sense of loss, and injury are recognized and embraced as part of the experience (Roget’s International Thesaurus, Fifth Edition:969), implying acceptance. “Encircle” also equates with “girdle,” as in wrestling (683),

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which implies engaging, facing and fighting, struggling and contesting (364). Gay Becker (1997:3) describes the “tension” in a life disrupted as a “fight within the self.” Four years after her accident, Peggi does not merely “pretend” that her feelings of loss and grief do not exist. She interacts with her feelings. She struggles to see her injury as only one part of herself. With Excerpt 3, Peggi shows us that she is both embracing and resisting “the patient role” and is actively negotiating “the balance of the ‘healthy’ and ‘ill’ aspects” of her life with brain injury (Radley and Chamberlain 2001:324). Peggi is not a “passive” recipient of her brain injury symptoms; rather, she is “actively” interpreting them (Nochi 1998:869). Dichotomy of experience plays out as Excerpt 3 continues. Peggi describes the creeping “dark” by curling her fingers and placing her hands in front of her face like a monster about to attack. Her words and action evoke bravery as she engages with her sense of loss even when fear threatens to overwhelm. In Part 4, she describes two choices in her life: she “can be grateful .. for huge changes” that she did not expect, or she “can curse them.” She explains that it is possible to “do both” at the same time. As with other people whose lives are suddenly disrupted by injury, violence, or illness, none of the survivors I worked with had anticipated the sudden life change brought on by brain injury (Becker 1997). A moose ran into the road and totaled a car. A sign fell on someone’s head. A car hit a patch of ice, slid under a truck, and was crushed. No one can prepare for brain injury, increasing the urgency of allowing time to grieve. As seen in Excerpt 3, grieving can be both painful and healing. Peggi’s interview text has a wistful quality, a feeling of longing for the past, especially in Part 5 where she wonders “how different things might have been.” Many brain injury survivors live with feelings of regret (Pollack 2005). One group project participant, injured in a car accident 30 years ago at age 19, notes that “in the minds of many of us there are thoughts that we will never achieve some of the dreams we once held so dear.” With his brain injury, he feels that he lost his future (Nochi 1998). From Peggi’s perspective, her present and future do not include the professional work she found “meaningful.” Instead of designing lifesaving training for people with a chronic and life-threatening disease, she babysits for a friend’s young child. Yet she is grateful for “good” aspects of her life, as depicted in photos of her boyfriend-partner, her sons, and the members of the brain injury support group, among others. In the excerpt’s coda, Peggi interrupts her wistfulness with an abrupt reality check. She might wish things were different, “but they’re not.” Peggi acknowledges her wish that things might have been different and

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chooses to confront reality instead. Peggi shows us that living with brain injury means struggling with something she cannot change. She can wrestle, confront, embrace, and encompass, or she can feel regret, helplessness, and fear. In Excerpt 3 and in her life, Peggi appears to be doing “both.” Excerpt 4: The Chess Set, “This game that I used to love . . . is just a mystery now” Part 1: I was trying to show . . . I’m not able to play that game anymore This is a chess set. I was just trying to show, like, Other people are playing And then, all my pieces are all, Huddled in the corner. And .. the broken one is, Out there .. Interesting I’m not able to play that game anymore.

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Part 2: I don’t know how to The other side’s like, “Come on. Play the game.” And I’m, like, “I don’t know. I don’t know how to” .. So you set that up Yeah. To take the picture of it Yeah Part 3: The world is still playing . . . and my forces are divided The pieces huddled in the corner, and trying to .. And this one’s broken, You can’t tell that’s broken in half. Hmmm And, I was trying to show, like .. One side is still .. The world is still playing, And I .. my forces are divided. Part 4: I don’t know . . . what I’m supposed to be doing I don’t know what I’m supposed to be doing. I’m trying to .. This one’s broken in half. I don’t know, What I’m supposed to be .. doing, getting .. Part 5: I’m getting creamed You know, this game that I used to love And play all the time, Is just a mystery now. I’m getting creamed. Discussion: The Chess Set, “This game that I used to love . . . is just a mystery to me now” Duality, darkness, and light are readily apparent in the photo of Peggi’s chess set. Two opponents face each other. One is black; one is white. Peggi describes herself as “divided” and “broken in half,” like the pawn in the middle of the board. Peggi staged her photo, purposefully placing the pieces to illustrate what she wanted to communicate about her life with brain injury. Peggi has used the game of chess as a metaphor for the game of life. Words she uses to describe her experience with chess (and, by implication, life with brain injury) are “huddled,” “not able to play,” “don’t

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know how,” “broken,” “divided,” and “getting creamed.” Unlike other excerpts in her narrative of darkness and light, Excerpt 4 contains no words or image of hope. A game that Peggi used to “love” is now “just a mystery.” In Part 1, Peggi equates herself with the “huddled” team in the corner and the “broken” player alone in the middle of the board. She is both out of the game (in the corner) and exposed and vulnerable (alone in the middle). She is divided: she has an old self that was whole but is now sidelined, and a new self that is broken. In Part 2, Peggi says that the opposing team wants her to play, is urging her to play. Her response is, “I don’t know. I don’t know how to.” Her statement implies failure—to meet expectations, to fulfill a role, perhaps a career role in particular. Pollack (2005:644) notes, “the loss of the status and identity that are associated with having a job” can be significant for brain injury survivors. He describes this loss as “a hole in one’s identity—a further assault on the injured person’s sense of self” (2005:644). The loss of her career is a major hole in Peggi’s life. In Part 3, Peggi returns to her divided forces, consisting of several pieces huddled in the corner and a broken one exposed in the middle. She notes that “you can’t tell” in the photo that the piece exposed and alone is “broken in half.” Perhaps she is referring to herself and many other survivors, who look fine but are not. In Part 4, Peggi explains that she does not know “what I’m supposed to be doing.” The path to healing from brain injury is still being defined. Every person’s brain injury is different; every person’s pathway to healing is different. “Not only their behaviors but their entire beings are in flux” (Pollack 2005:643). Empirical studies to measure the outcomes of different rehabilitation interventions are lacking (Gordon et al. 2006a; NIH 1998). Insurance providers often limit postacute rehabilitation services for brain injury (NIH 1998). In the confusing context of brain injury rehabilitation, how could Peggi possibly know what she is “supposed to be doing”? With Part 5, Peggi concludes her excerpt by telling us that chess (and life with brain injury) are “a mystery” and she is “getting creamed.” As she commented to the group when discussing her chessboard image, “The world’s a pretty competitive place.” Challenges with fatigue and executive functioning impinge on brain injury survivors’ productivity in work settings. In work settings where timeliness and meeting deadlines are priorities, brain injury can be a major disadvantage. From Peggi’s perspective, living with brain injury appears to mean losing—at chess, at life, at career, and at engagement with the world.

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Excerpt 5: Dark Branches and a Gray Sky, “This is just the new thing” Prelude: Things that made sense along the way I was trying to find things that made sense along the way Was this one of yours, too? I don’t know. This tree? I don’t think so. It could be, but maybe not. Let’s see. Let’s look at the back. [Peggi yawns] Yes. Yes. I think so. It is? Okay. Part 1: That’s odd So no leaves on that tree. That tree has bare branches. And a very incongruous light sticking out of this. It’s an odd, that’s odd. But that’s how things are now. Everything’s a little odd, like .. there isn’t the same sort of congruity that I used to feel .. in my life. Part 2: One day I became somebody else Again, it’s about recognizing and accepting And .. learning, learning the new me, hmmm I used to have a really good handle on who I was. And one day I became somebody else. [Deleted: discussion of people’s empathetic but uninformed reactions to her symptoms and how she doesn’t tell everybody about her brain injury] Part 3: I don’t want . . . to be . . . all I am is a brain-injured person I don’t want to [clears throat] I don’t want my new self to be all, All I am is a brain-injured person. I’m gonna have to, Be my new self, And be whole and complete, Even if I’m not my old self. Yeah

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I’m not gonna get back to that old self. That old self’s not comin’ back. Hmmm Part 4: My friends . . . say . . . “You’re fine now” You know, that’s part of the thing. Hm mmm It bothered me, sometimes it would bother me, but .. hm hmmm And my friends who knew, would say, “I know, but you’re, you’re fine now.” I’d be, like, “I .. am so happy you see me that way. It’s great.” [chuckle] But, you know, it’s sort of, like, leaving you out on the porch, in a way. You know what I mean? hmmm

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Part 5: It’s good . . . to be, seen, as whole, right? But then it’s good .. yeah To be, seen, as whole, right? Yes I don’t want to say, “No, no. I’m not whole.” [Laura laughs] So that’s, you know, so that’s a good thing. And I guess in some way it’s still part of the grieving. You know? Hmmm, right. So acknowledging .. that. Part 6: It’s a step in the right direction But .. I mean, even when you noticed it stopped, I think I, it’s a step in the right direction to just let it roll by, hmm mmm Instead of having to go, “Yup, that’s different.” Right. Part of the acceptance, I guess. Yeah. This is just the new thing. Discussion: Dark Branches and a Gray Sky, “This is just the new thing” Peggi’s image of dark branches against a gray sky is one of 21 pictures that she captured on a day trip to New Hampshire. When she arrived at my home for our interview, the photos from her trip were stuck in the pocket of her binder. They were the last photos we discussed. While we laid them on the table in front of us, she explained that she had used the trip to take pictures of “things that made sense along the way.” It was a glorious day of trees bursting with leaves of orange and yellow and red. The image of black, bare branches reaching toward the sky stood in sharp contrast to the other photos from the trip. Peggi did not talk about her image of bare tree branches with the group and did not remember taking the photo. I had to turn the print over and match its exposure number with the other images on the table before we could be sure it was Peggi’s photo. As she did not remember her intention in taking the picture, her discussion of the image was spontaneous. She was audiencing the image with fresh eyes (Rose 2007). Excerpt 5 illustrates the bouncing back and forth that Peggi is doing and feeling in her self and her life. Using the photo, she first describes her life as “incongruous.” Synonyms for “congruity” are “symmetry,” “accord,” and “agreement” (Roget’s International Thesaurus, Fifth Edition:

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920). When something lacks congruence, it may be illogical or inconsistent. Her life used to make sense, and now it does not. Next, Peggi lays out her current task, “learning the new me,” now that she has become “somebody else.” She reveals that she does not want to be seen as just “a brain-injured person.” She wants her new self to be “whole and complete.” Peggi appears to be expressing that she seeks coherence, in which old self and new self are “indivisible” (Roget’s International Thesaurus, Fifth Edition:911). She appears to imply that a brain-injured person who dwells on the “old self” is not whole. In Part 4, Peggi wrestles again with her new self, not quite willing to accept it, wishing for more. In Part 5, however, she bounces back toward acceptance, as if arguing with herself. As Peggi gradually sheds her habit of comparing her old self and new self, her sense of loss, particularly loss of self, appears to be diminishing (Nochi 1998). Peggi does not feel at ease about her life with brain injury. In her narrative of darkness and light, she repeatedly demonstrates tension between her “new self” and “old self,” between former competence and new failures, between feeling “broken” and feeling “whole,” and between “darkness” and “light” in her life. In Part 6 of her last excerpt, however, she provides a glimpse of a “new” Peggi, who acknowledges loss even as she is able to “let it roll by.”

Discussion As seen in her narrative of dark and light, Peggi appears to be establishing a “sense of coherence” in her life with brain injury (Radley 2002:3). Participating in my study appears to have provided Peggi with an opportunity to make visible and communicate a “restoration of coherence” that she has been working toward for several years (2002:11). Using visual methods appears to help with the process of “confronting the inevitability of disease,” or in this case the inevitability of impairment due to brain injury (2002:14). Perhaps taking pictures for the study, writing captions for them, and speaking about them with me and with the photovoice participants allowed Peggi to express “feelings that were previously inchoate,” or imperfectly formed (2002:11). The experience of “the restoration of coherence” occurs both in the “act” of taking photographs and in “the contemplation of the image by others” (Radley 2002:11). When we as viewers contemplate Peggi’s narrative—her images and their interview excerpts—we participate in cre-

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ating “existential meaning” about living with brain injury (Debats 2000:95). Peggi’s narrative provides both viewer and creator an opportunity to “see” Peggi’s brain injury world and gain a new perspective on the pain and struggles she describes so well. Reading Peggi’s narrative of darkness and light helps us to develop with Peggi a shared understanding of life with brain injury as she experiences it (Pollack 2005). Emotional sharing of experience using symbols, concepts, and analogies is healing and can contribute to “reestablishment of the injured person’s sense of self” (Pollack 2005:644). Peggi’s narrative provides both viewer and creator an opportunity to feel and to “restore . . . the capacity to feel” (Radley 2002:21). Her narrative “instantiates” or provides a concrete example of her feelings (2002:18). In viewing her narrative, the creator and her audience develop a “shared comprehension” (2002:21). Peggi’s visual illness narrative shows how she is living with illness (Radley 2002). Its excerpts depict how she feels about the loss of her old self and the gradual birth of her new self. In Excerpt 1, Peggi shows us that living with her brain injury can mean feeling trapped inside a dark place, looking up and out at a world of “light and blue sunny skies.” By the fifth excerpt, Peggi appears to have emerged, along with her brain injury, out of the “shadows.” The natural (tree) and man-made (street lamp) elements in her final excerpt portray Peggi’s struggle with the “emotional” (natural) aspects of her new life while relying on medications (man-made elements), without which she “could not stand.” Peggi employs both natural and man-made elements in negotiating a balance in her life, literally and metaphorically, between darkness and light. Peggi’s narrative of darkness and light appears to show that she has emerged from the despair and isolation of her early years living with brain injury. She no longer hibernates in her room. She engages with the world and her injury by attending support group meetings, babysitting, and volunteering at her son’s school. Peggi is not entirely reconciled with her new world of “incongruity” and gray skies. She continues her struggle to encompass darkness and light in a self that embraces both the “old” and the “new.”

Darkness and Light: A Researcher’s Perspective Reflecting on Peggi’s experience as an example of a disrupted life, in which “expectations about the course of life are not met, [and] people experience inner chaos and disruption” (Becker 1997:4), forced me to reflect on my own experiences of disruption. The most obvious is di-

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vorce, which suddenly and involuntarily prompted me to leave overseas work and the nest of a nuclear family, to return to a now-alien US culture where I became a single parent working full-time. I spent years grieving for the loss of that family and way of life. Certain events, such as the birth of a grandchild, trigger echoes of that grief today. Over time I stopped cursing the death of my “old” self and started feeling grateful for the birth of my “new” one. The change led me to find meaningful work and a renewed purpose in life, and to “understand how events in [my] life fit into a larger context” (Reker and Chamberlain 2000:1). It is difficult to imagine facing such a life-changing disruption while wrestling with the cognitive, physical, and emotional impacts of brain injury. Researchers and practitioners alike argue that the cognitive and emotional impairments brought on by brain injury increase the urgency and the value of providing opportunities for brain injury survivors to explore their experience and find new meaning in life (Pollack 2005; Chamberlain 2006; Nochi 1998; Prigatano 1989). At a conference on community integration of persons with traumatic brain injury in April 2007, lifespan developmental psychologist Gary Reker noted, “meaning is a very personal, subjective, private issue. When it comes to intervention ‘One size does not fit all.’” After viewing a conference poster on the photovoice project with brain injury survivors, Reker (2007) suggested that the sharing of visual “stories” in a group environment can “facilitate personal understanding” of brain injury “as well as validation by others in a similar situation.” Are visual methods particularly useful for brain injury survivors in the search to make meaning in lives disrupted? If so, could they also be useful for persons with other cognitive disorders, such as epilepsy, dementia, autism, or posttraumatic stress disorder? Finally, are participatory visual methods only useful in a group setting, or could we also observe meaning-making benefits for patients who use visual methods in a clinical setting with providers?

Peggi Responds Peggi and I spoke in her kitchen as we sat at a small, round table tucked into a corner and drank green tea. As we talked, Peggi looked through the chapter page by page to remind herself of what she wanted to say. Her five-year-old gray parrot, Pika, joined us partway through our conversation. Pika watched, ate, and welcomed attention from Peggi when she

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needed a break from reading and talking. Peggi’s response presented here is excerpts from our conversation about her chapter. For ease of reading, I have edited out repetitions, hesitations, or places where she stumbled on her words. I found it interesting to be a subject, but in a good, I mean in a scientific way. It was a little odd, like the insect under the magnifying glass. But okay, I certainly as a scientist have approached many patients in such a way, you know. Not without compassion, just needing data. Still, it’s odd. You [as a researcher] are very diplomatic, and I think it’s what allows people to open up further to you. You’re so nonjudgmental, or at least not expressing it. The pictures themselves could be given so many different narratives. You might see them differently another time.1 The “new self” concept is very true. Using the word “healing” instead of “recovery” is very important, because when you get stuck wanting to be your old self, it only leads you to frustration, and takes away from acceptance. A lot of the other [photovoice] participants had very similar experiences they wished to share. Like David S., you know, “people who left, people who I thought were going to be there, who after the accident were nowhere to be found.”2 That was shocking, shocking. People you thought were your friends. It’s like you were damaged goods or something. Shocking. So, yeah, “hibernation and grief.” Now, every little thing, though, as you go forward is a huge victory. “Loneliness and light,” yes. But also, it was hard to go out and my speech was so bad. People thought I was retarded.3 So people would talk really loudly, “do you need help?!” And some people were actually really mean. Like, mean, mean, mean, laughing and pointing. So that was hard, too. I had a sensibility of an accomplished professional, who now couldn’t read, couldn’t speak, and that was hard. “Habits of successful coping practiced in the context of the group are forming a bridge.” That’s true. “Memories of successful coping are taking root.” That’s true. “Light and

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dark” seems to be appropriate. . . . I think this is a good and accurate thing of me and what I think and what’s going on. It’s still true. A lot of the struggles are similar, but I just have a better expectation. There is that sense of grief and loss, and instead of staying there and feeling hopeless, I go “okay, well, so.” You know, I used to run, in races and stuff, 10Ks. And now, I can’t, but I have a treadmill, and I can hold on to the sides, and I can walk, at a pretty good pace even on my treadmill. So that’s something, you know. Instead of bumming out that I can’t run, I just can go on the treadmill and I can hold on to the sides. I think I spend less time mourning and more time getting something done. “Old self, new self. Not completely at ease with my life.” Yeah, because I want to be able to contribute, you know. That’s one of the nice things about photovoice. “Participating in this study appears to have provided Peggi with an opportunity to make visible and communicate a restoration of coherence that she has been striving for and experiencing for some time.” Yes, it was a whole series of steps. But this [photovoice] is one that I probably wasn’t ready to do, earlier. The thing that really got me in motion, and I was really not in motion, I was really stuck, and hopeless and helpless, and stuck, was the expressive therapies class [offered through the support group]. That class did make me go from being really stuck, really lost, like hopeless, to, you know, I can do stuff. Even with photovoice, I thought, “I don’t know, do I want to do this?” But every time I have taken the initiative to go do a thing that was offered, it has brought me hidden benefits I did not anticipate, that I wouldn’t have believed could really come out of doing it. Peggi wanted to use the opportunity to respond to her chapter to communicate something “of importance” to other survivors and their families. Peggi’s interest in the advocacy and outreach aspects of photovoice grew over time. She has spearheaded extensive outreach work by the photovoice group, including initiating a Veterans and TBI program at the Newton Free Library and photovoice exhibits at a neurology conference and a stroke rehabilitation awareness day at a Boston-area hospital. In support of her ongoing efforts to generate awareness of TBI and its

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consequences, I include her message to survivors and their families as expressed during our discussion of her chapter: The single most important thing that I would try to tell other people who have brain injury, or friends and family of those who do, is the confusion and anxiety and depression that initially is accompanied with every step. Because you don’t know, is this going to be it? And most of the doctors say, “that’s it, you don’t really get much better. Within six months, you’re pretty much peaked at how better you’re going to get.” [As time passes], though, that sense of loss and anxiety and depression and just grief, is [there], but it’s only for a fleeting moment. You go, “I think I can do this,” and then you realize,

Maybe there will be a good view.

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“I really can’t do this.” And instead of becoming immobilized with that grief, you go, “That’s right, I need a nap.” Or “I need to bite off a smaller bite. I’m not that old person. I’m a new person, and I’m going to employ the strategies I’ve used.” And you can still get all the way through it [the task at hand], just not like you thought you could. And that piece, of hope, is the single most important thing. . . . Brain injury doesn’t mean never, it means just not now, maybe. And maybe not ever, but at least I can get a rung on the ladder, I can hold on to something and try to get better. One of Peggi’s photographs and its accompanying narrative became the theme for the TBI photovoice exhibit. They echo the sentiments that Peggi expressed above and reinforce her message that it takes time and action to heal in the face of uncertainty and loss. Perhaps, as Peggi intends, this new photo and its caption will inspire hope in brain injury survivors, their family members, and their providers. It’s a muddy, rutty, hands-and-knees crawl up to the first rung of the ladder that begins to make some semblance of sense— and then you get to begin to really struggle. The climb does not and will not end. There is no final healed bone or mended tear of the skin to get over. Sometimes weekly, and sometimes daily there is a new step to attempt to get to your “new self.” You can’t even ever hope to get back to your “old self.” Oh well! Maybe there will be a good view on this journey that I hadn’t expected.

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6 Discovering a New Identity My original study topic was lived experience with traumatic brain injury (TBI), an injury caused by a physical force, blow, or shock to the head. Yet the eight brain injury survivors who welcomed me into their support group and volunteered to participate in photovoice included two brain tumor survivors in addition to six TBI survivors. The brain tumor survivors asked me to revise my topic from “lived experience with TBI” to “lived experience with brain injury.” The Framingham brain injury support group welcomes anyone with an acquired brain injury (ABI), or any brain injury that occurred after birth. Some support group members received their injury from anoxia, or lack of oxygen to the brain after a heart attack or a near-drowning, for example. Others have survived brain tumors or strokes. The majority have survived TBI. Among the brain injury survivors in my sample, the cause of their injury is irrelevant. All brain injury survivors wrestle with changes in their professional and personal lives after injury. All face physical, cognitive, emotional, and spiritual issues as they attempt to heal or cope. Over time, the lived experience of all brain injury survivors, no matter the source of their injury, appears to coalesce. In choosing to include in my book the lived experience with brain injury of a brain tumor survivor, I am respecting the perspective of my participants. I am valuing their solidarity as collaborators with me and honoring their commitment to communicating their lived experience with brain injury so that other brain injury survivors can benefit (Frank 1995). During the photovoice project, Judy’s images and what she said about them generated much discussion. Survivors marveled at her acceptance of her life with brain injury, and her lack of regret about the ca115

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reer and capabilities that she had lost. They wondered out loud how she had gotten to this point. They appeared to see Judy as a “hero” who had slain the “dragon” of loss and grief (Prigatano 1999:213) and who had “insight that must be passed on to others” (Frank 1995:118). In focusing on Judy’s narrative of identity in this chapter, I am reflecting the photovoice participants’ interest in Judy’s story. I am also following Nochi’s suggestion (2000:1795) that “individuals who seem to succeed in coping with the disabilities [from brain injury] should be examined, too.” Finally, I am pursuing my attraction to Judy’s heroism in coping with the myriad challenges she faces living with brain injury (Padilla 2003). In Judy’s chapter, I hope to provide useful insights into the search for identity after brain injury, by exploring (1) what Judy reveals about her experience in her images and her two interviews with me, and (2) what the photovoice participants and cofacilitators said when discussing Judy’s photographs and her life during our project meetings. Perhaps Judy’s experience will inspire other brain injury survivors immersed in their own personal quests of healing (Frank 1995). Perhaps this chapter on Judy’s experience will generate ideas of strategies for coping with the disabilities that brain injury can bring (Nochi 2000).

Getting to Know Judy Judy participated in the photovoice project from September to November 2006 and has continued to work on outreach efforts. When the photovoice project started, Judy had been a support group member for nine years, almost since its founding. Judy had to miss a few photovoice sessions due to migraines (from her brain injury) or doctors’ appointments. As Judy explained to me, treatments (surgery and radiation) for a brain tumor caused her brain injuries. Judy was 35 years old and managing multiple restaurants as an executive chef, when nausea, headaches, dizziness, and balance issues forced her into bed and then to the hospital. After seven days of diagnostic tests, a magnetic resonance image (MRI) revealed a slow-growing childhood tumor (ependymoma) pressing on her brain stem and causing her symptoms. Judy’s neurosurgeons and radiation oncologist removed the tumor and treated it with radiation to prevent regrowth. Once these essential tasks were done, they saw their job as finished. They appeared to perceive her posttreatment issues of impaired vision; challenges with speaking, chewing, and swallowing; chronic migraine headaches; loss of short-term memory and executive functioning; and balance issues—all common symptoms

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of brain injury—as falling outside their purview. “They were all worried about the tumor, and I would talk to them about these other things, but no one really paid a whole lot of attention,” Judy explains in a matterof-fact voice. Her doctors advised patience, as the damage caused by surgery and radiation might be temporary. “But temporary didn’t happen!” Judy says. “It took a long time to figure out all the different things that were affected.” Judy and her primary care physician strategized together about therapies and treatments to help Judy deal with her brain injury symptoms. Michael Bury (1982:170) refers to this type of reaction to Judy’s “biographical disruption” as the “mobilization of resources, in facing an altered situation.” Judy worked with a physical therapist, an acupuncturist, and a speech pathologist. She learned to cope, but her symptoms did not improve. She resigned from her job. On the recommendation of her neurosurgeons, Judy joined a cancer support group whose members “were learning how to reintegrate” cancer into their lives and move on. Judy says the group was “very good” and provided her with “a lot of support.” The members helped her enroll in MassHealth, a public health insurance program for eligible low- and medium-income residents of Massachusetts. Six or seven years later, Judy’s mother noticed an ad in the newspaper for a brain injury survivor support group. When Judy walked into her first support group meeting, she knew that she was “home” as she entered a “family” of fellow brain injury survivors facing symptoms and challenges similar to her own. Judy’s use of the word “home” recalls what Jerome Bruner (1987:25) calls a place in “sharp contrast” to the “real world,” which in Judy’s case meant the world outside the support group where brain injury is less understood. Judy described her first support group meeting for me: It was like I walked in the door there Like everybody says I walked in the door there And it was like, “Oh my goodness!” At the end of the meeting, I thought, “Oh, boy, I was home!” And all the things that I was having problems with, It was big relief After joining the brain injury support group, Judy started using the term “brain injury” more. She realized that her bigger problem at that

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point, years after the surgery and radiation, was her brain injury. The brain tumor had been successfully treated. “My new path was now, trying to work on the brain injury,” she says. “And come up with ways to compensate for the deficits . . . that weren’t going away. I had to figure out some ways that I could live with it.” Judy’s laugh is hearty, infectious, and often ironic. She is short and round and has piercing blue eyes. Her hair calls attention. It stands up in feathery tufts like the Peanuts character Woodstock and the actor Matt Damon on a 2007 cover of People magazine. She feels her hair reflects her personality. Her hair was an important topic of discussion during a photovoice meeting, when participants were sharing their photos and the captions they had written. The theme had turned to acceptance, which someone said “can seem like capitulation.” Judy responded: Acceptance is not giving up of possibilities. It’s the opposite. For me, acceptance was more of a positive thing. It was accepting, well, this is where I am now, But I don’t have to stay here, But this is reality now, And now I know what to work with. Dave G. took up the theme: “Acceptance is like facing the truth .. I’m not going to lie to myself that I should be doing what I did before .. How can I move forward if I’m lying?” Judy pulled out a photo she had gotten back that day and held it up for the group to see. In the image, Judy is facing away from the camera and toward an outside porch wall painted dark gray. The dark color of the wall blends with Judy’s dark blue t-shirt and the dark gray hair on the top of her head. The hairless back of Judy’s head and neck stands out in stark relief. A two- to three-inch scar divides the naked skin like the spine of an open book. The group responded with gasps of surprise and wonder. J.S. That’s what this picture’s going to be about. I hadn’t written a narrative for it, I just got it back today. But I took a picture of the back of my head. Having this haircut really was another step, statement of acceptance. Because the way I wear my hair now, Where my scar shows

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I don’t care And since I wear it up and crazy [laughter] It’s like that’s a part of it, my life is an— P.R. You’re open. You’re not hiding J.S. I’m open. I’m no longer hiding the back of my head. Dave G. said that, out of all the people in the room, only Judy’s hair looked “with it” and “cool.” Laughter exploded. Scott D. said, “You know, all these weeks I haven’t been sure that you knew it looked crazy,” prompting more laughter. Judy noted, “I always had parts of me that were very traditional, and yet there was always a streak of really radical, in so much about my life.” She said that she is still “making progress,” and she didn’t realize “how freeing” it would be to stop covering up her surgery scar. Judy said to the group: Because I didn’t really realize, I was always so careful about the back of my hair. I lost .. all the hair back there Because of the radiation damage And it’s never going to come back. So I always wore my hair from the top, You know, coming down, covering it, So it didn’t look like there was any problem. But if the wind blew, It would open it, And there would be this white streak, And people were always trying to fix it for me, So I finally said the hell with it. The image of Judy’s scar became an “anchoring point” for the group (Radley and Bell 2007:378). In photovoice exhibits and presentations, Judy’s image of her scar has invited, commanded, and challenged “the gaze of the viewer” and become a source of “social support” for persons with brain injury (Radley and Bell 2007:369). Judy’s photo exemplifies the “courage and commitment” required by brain injury survivors to “deal with their losses . . . and face the truth in their lives” (Prigatano 1999:213). Seventeen years after receiving her brain injuries, Judy is showing herself, her photovoice colleagues, and the world that her healing continues (Lorenz 2010 in press).

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Judy as Photographer Like Subject D and Peggi, Judy took her study photographs with purposeful intent. Using three disposable cameras, she took a total of 53 photographs. Often she captured three or more images of the same subject to make sure of having an image that suited her purposes. Her photo-taking strategies also involved giving the camera to someone else. With her first camera, Judy took 12 pictures, all in and around her home and yard. With her second camera, she took a total of 26 pictures in her home and yard as well as at her parents’ home. With her third camera, Judy took 15 pictures in all: 2 at home, 4 in her car, and 9 in her physical therapist’s office. Table 6.1 provides a list of Judy’s photo topics, by camera. Judy took her photographs in the fall. Due to the timing of the photovoice project, the photos of her gardens did not show them at their best, from her perspective. Judy contributed to the exhibit a garden photo she had taken in the summer, before photovoice began. I have included Judy’s contributed photo in her narrative of identity. More than any other participant in my study, Judy used her cameras to depict compensation and coping strategies that have helped her to live with brain injury. Examples of her strategies include puzzles to exercise her brain, cranial sacral therapy to relieve pressure in her neck and head muscles, and core strengthening exercises to improve her balance. Photos of bags placed by the front door show her strategy for remembering to take the bags with her when she leaves the house. Judy wrote a narrative for every theme depicted in her images. In her binder, she grouped her photos by theme, one theme per page, with a single caption for each theme. The crowded pages did not leave much room for her captions. She purposefully worked and reworked them, editing them down until they evoked thought-poems or haiku. She felt that short captions without “extra words” best reflected her personality.

The Photo Interview My interview with Judy was one of the last interviews for my study. It was delayed twice when Judy had migraines: first, when the weather was heavy and humid; second, when she had worked extra hours at her parttime library job and became exhausted. The interview took place at my home. When Judy first arrived, we hung out for a few minutes in the kitchen to make herbal tea. The interview began when we moved down-

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Discovering a New Identity Table 6.1 A Listing of Judy’s Photograph Topics, by Camera Photograph Topic

Number of Photographs

Camera 1 Perennial garden Container garden Bags blocking door Copper pots and chef’s apron Cookbooks Pillbox Keys in freezer Ceiling (mistake) Subtotal Camera 2 Keys in freezer Living room in chaos Scrambled eggs Bricks on a board Outside garden Potted herbs Cookbooks and chef’s nameplate Bags blocking the door Back of head Subtotal Camera 3 Books of puzzles Sky Cranial sacral and massage therapy Exercising on ball (strength and balance) Using pull-down machine (for neck) Driving in car Country/back road Subtotal

2 1 5 2 2 2 1 15

Total

53

1 2 2 2 1 2 1 1 12 4 1 5 2 4 2 2 3 3 26

stairs to my study, where we sat side by side on the couch and faced a table with her binder of photos. On the audio recording, our conversation is punctuated by the sounds of Judy’s laughter, tea being poured, and rhythmic tapping on the table when Judy made a point. We spoke for about three hours. For the first hour and a half we discussed a wide range of topics. We went over the consent form for use of the photos for research and education purposes, and whether Judy wanted her name used or not (she did). She shared an article she had brought on a youth photo project in South America. I marveled at her binder, which was beautifully organized. She had shared her project binder with her

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neurologists, and we discussed their potential interest in displaying the photovoice exhibit at the hospital where they practice. Judy did not look at her photos for a month before our interview because she wanted to look at them “through fresh eyes.” Her action was purposeful. Her strategy meant that Judy was “audiencing” her photographs with both an insider and an outsider perspective during the interview (Rose 2007). We glanced quickly through all the photos in her binder before she began to speak at length about individual images. She discussed eight images in depth, choosing them herself. Our second conversation took place outside on Judy’s back deck, decorated with planters of white and purple pansies. Birds called and flitted across the yard from tree to feeder to tree. Wind chimes rang. Her neighbor’s nine-year-old son returned home from school and spoke briefly with us before going inside to get a snack. In our hour-long interview, Judy explained to me how her tumor was diagnosed, the treatments she’d received, their symptoms, and her healing quest, which included collaborating with her primary care provider to find and access effective treatments and therapies (Frank 1995).

Researcher Reflexivity Reflecting on my choice of Judy as a case study raised a concern for me. Was I overly drawn to Judy as a hero in her quest for healing after brain injury? My childhood home had a wall of books collected by my father that reached 20 feet across and 10 feet high, much of it genre fiction and classics. From age eight I began to read this wall of books. I started with classics (The Yearling, The Little Princess, and Kidnapped) and moved on to series (Horatio Alger, Ace with Wings, Nancy Drew, and James Bond) whose protagonists usually faced adversity and triumphed in the end. Bruner (1987:19) writes: “As literary forms have developed they have moved steadily toward an empowerment and subjective enrichment of the Agent protagonist.” Was I choosing to explore Judy’s story because it fulfilled my personal need for a lived experience with brain injury that exemplified “agency” and “enrichment”? My immersion in universal plots from an impressionable age inevitably colored my view of Judy’s experience and my choice of a theme for her narrative (Bruner 1987). Like many people, I am drawn to stories of triumph and transformation. My doctoral training at Heller, however, taught me that success or failure in life is not wholly due to personal characteristics, as implied by the Horatio Alger books or the US culture of

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rugged individualism. I now appreciate that social capital and socioeconomic circumstances play vital roles in determining how individuals (1) achieve access to health services, (2) react to life challenges such as trauma, and (3) find meaning in living with a chronic condition such as brain injury. My “transformative plot” lens poses risks both to my analysis of Judy’s data and to the self-perception of brain injury survivors in general. My lens pushes me toward “romanticizing” the “illness quest” of Judy and other brain-injured persons (Frank 1995:134). I hope that an awareness of my lens will help me to avoid seeing the “renewal” of any brain injury survivor “as complete” and keep me from deprecating “those who fail to rise out of their own ashes” or fail to find meaning in life after brain injury (1995:135).

Judy’s Narrative of Identity Overview Judy’s narrative of identity has four photographs and their accompanying interview excerpts. In her narrative’s four images and excerpts, Judy shares several aspects of her identity: the chef who was “lost” with her brain injury, a person with “brain injuries” taking numerous medications each day, and an avid gardener. The chapter presents Judy’s visual illness narrative in the order in which we discussed its photographs. Her narrative begins with Excerpt 1, a photograph of the French cookbooks that inspired Judy as a chef. It continues with Excerpt 2, a photograph of the cardboard shoebox that holds her daily regimen of pills. Excerpt 3 shows her perennial garden. In Excerpt 4, Judy’s car keys share space in her freezer with soups and other foods that she has made from scratch. Judy’s photographs are used in this book with her permission. Each photo and interview excerpt has a title that describes the image and places it in context using Judy’s own words. For each excerpt, the title is followed by the image and its interview excerpt, parsed into lines and grouped into parts, each with a title using Judy’s own words (Gee 1991). Anything I said during the interview is italicized; all other text in the interview excerpt was said by Judy. A period indicates a full stop. A comma indicates a brief pause, and a series of two dots indicates a longer pause. In our two-and-a-half-hour photo interview, Judy talked about just 8 of the photographs she took for my study. The first three images in Judy’s

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narrative are the first images we discussed during the interview. The fourth is the last photograph about which we spoke. Judy spoke about each photo for up to 14 minutes. Due to chapter length considerations, I have included excerpts from our conversations. Where relevant, I have noted in brackets the gist of the interview sections that I eliminated (Mishler 1999). A discussion follows each excerpt. As with Chapter 5, some discussions present exchanges among participants during photovoice meetings, when participants talked about their photos and lives. For photovoice discussions embedded in the text, I have identified the speakers by their first name and last initial. For photovoice discussions separated from the text and parsed into lines, I have identified the speakers using their initials. “J.S.” is Judy.

Narrative of Identity: Four Photos and Their Interview Excerpts Excerpt 1: Cookbooks, “Identity lost” Part 1: My work as a chef ended with my brain tumor This one here is identity lost. My work as a chef ended with my brain tumor, But I also lost my “who I was.” [Deleted: discussion of written narrative for group project] Part 2: I didn’t have a life . . . separate from my work So what it seems to me you’re saying there is that work, to a certain respect, work was your identity Oh yes, my whole, my identity was so entwined with my work, There was no difference right I didn’t have a life that was truly separate from my work It was 24 hours a day hmm Being a chef, is like being an athlete in that, you’re never off hmmm [Deleted: conversation that continued in the same vein about work being 24/7]

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Part 3: It was always Judy the Chef, not ever Judy And I had focused on my work life as being the important part of my life. I didn’t develop relationships with men, Or think of having a family Because I started doing this in the mid ’70s, early ’70s And that was not supposed to be something women were supposed to do. And so, in order to break through that .. barrier, I had to always work harder, be better than the guys I was working with hm hmmm I never worked with another woman, until the mid ’80s wow So, that part of my life was, that’s who I became, It was always Judy the Chef, Not ever Judy hmmm Part 4: I had to find who I was besides being a chef So when that chef went away, I was like, “Oh my God, who am I?” I had to find out who I was besides being a chef, So that’s why it became a real road in self-discovery, In creating a new identity.

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Creating isn’t quite the right word, Of discovering, who I was besides that wow When I lost my identity of being a chef, it was really kind of traumatic yes Part 5: I’ve still got over a hundred cookbooks And obviously, I still haven’t let it go Because I’ve still got over a hundred cookbooks, And I gave a lot of them away already. These are the ones I just can’t part with, The hundred I can’t part with. These are all my French books Because, it was important for me when I took the picture Which cookbooks were going to be in the background Really? Yeah. Interesting The largest influence in my chef life was classical French cooking So these are all my French books oh The chefs that influenced me. [Deleted: discussion of specific chefs] Coda: That was part of making the picture That was part of making the picture I found it important to put in, um, .. specific books? Specific books, yeah Discussion: Cookbooks, “Identity lost” With the image of her cookbooks and our conversation about it, Judy sets the stage for her narrative of identity. As with a symphony whose first movement provides hints of melodic lines to be developed more fully in later movements, we hear and see some of her visual illness narrative’s major themes. Foremost is the loss of her work identity as a chef, which consumed her “24 hours a day.” She was “Judy the Chef, not ever Judy.” The brain tumor caused Judy to lose “who I was.” In the image, an executive chef nameplate and a pottery container for storing garlic sit on a shelf in front of two piles of cookbooks. More books and a copper pot fill the shelf below. All items in the image relate to Judy’s identity as a chef. In “audiencing” her photo for me (Rose 2007), Judy spoke of being a chef, losing her identity as a chef due to in-

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jury, and representing her chef identity in an image. Judy’s photo and what she said about it have coherence. Judy’s identity as chef began to form in childhood. When discussing her cookbook photo during a photovoice meeting, Judy explained, “I started winning competitions against adults at grange fairs . . . when I was in elementary school!” In high school she “finally got into the back of a restaurant” and immediately said to herself, “This is my life!” Her work and passion were one. In our photo interview, Judy told me that she embarked on her career as a chef in the early to mid-1970s when women were not “supposed” to be chefs. She felt compelled to “work harder, be better than the guys.” She did not make time for “dating men or starting a family.” Her interest in a traditionally male-dominated occupation was part of a societal shift (Novack and Novack 1996). The timing of her entry into her career of choice likely had an impact on the all-consuming nature of her approach. Judy did not share the gendered aspect of her career choice when explaining her cookbook image to the photovoice group. Perhaps our similar age and shared gender brought the gendered aspect of her career experience to light. In all other aspects, the stories Judy shared about her cookbook photo with the group and in her photo interview with me are very consistent. In Part 4 of her cookbook excerpt, Judy introduces the theme of traveling a “road in self-discovery.” She said that having a brain injury meant she “had to find out who I was besides being a chef.” The “traumatic” event of losing her chef identity after she could no longer multitask or maintain her balance for 10 hours at a stretch became the start of a “road” that continues today. Judy’s road evokes the “hero’s journey” described by Joseph Campbell (in Frank 1995). In speaking about her cookbooks, Judy describes the departure stage of her journey, which began when headaches, nausea, and forgetfulness caused by the tumor pressing on her brain interfered with her functioning, and she had to leave her chosen profession and find a new purpose in life (Frank 1995). Judy first says that answering her question “who am I?” involved “creating a new identity” but immediately says that “creating isn’t quite the right word.” She instead suggests “discovering,” which implies that her loss prompted a search to discover a new passion (or passions). The all-consuming nature of her career as a chef meant that Judy had never explored other interests or exercised other aspects of her self. As seen from her vantage point today, Judy’s brain injury marked a beginning as well as an ending. Time has been an important factor in her transition from chef to who she is today (Bridges 2004). “It has been tak-

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ing a long time to come up with who I am now,” she told the photovoice group. She depicts the challenge of building a new life as “overwhelming” in the beginning, when she worried that she was going to “be stuck in this place of, waiting.” She says she felt “so discouraged from time to time,” when she would start to improve only to “hit the wall and feel like I was starting at the beginning” again. Four or five years after her injury, Judy realized she would never be able to return to her career as a chef. She had always enjoyed reading books and began to volunteer at her local library. She began to envision a new career as a librarian. She found a graduate program that would provide free housing and tuition while she studied for a degree in library sciences. When she took a computer course to prepare for the program, however, her vision challenges interfered. “It began to dawn on me that, a career was not going to be .. my life’s journey at that point,” she says, “and that I had to create a new life, and a new reason for being.” In Part 5, Judy notes that her identity as chef remains, despite the loss of her career. She has given hundreds of her cookbooks away, but more than a hundred remain on her shelves. She explains that she “can’t part with” the books by chefs that “influenced” her most, and she purposely framed the image to place her most significant books (and their chefs) “in the background” behind her executive chef nameplate. With her cookbook image and its interview text, Judy is showing us not just an identity lost but one she still holds dear today. When Judy shared her cookbook image during a photovoice meeting, someone asked Judy if she would go back to her life as a chef if she could. Judy surprised everyone present when she said that even before her injury she had been thinking that her time as a chef was limited. She had begun to think that in 10 years or so she would not be able to maintain the level of physical effort (e.g., standing on her feet all day) required to be an executive chef. She said that she had already begun to think about “moving on and using the knowledge in a different way,” though she had not figured out what that different way would be. Perhaps Judy’s openness to a potential career change helped her to accept the loss of her career (and identity) as a chef and discover a new identity after brain injury. Excerpt 2: Pill Box, “These are all my brain injuries” Part 1: This is my pill box for the week Now, are those related to your brain injury? Oh, yes, these are all my brain injuries.

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This is my pill box for the week. So you’d know if you’d taken the dose? Right, because I used to forget, and I still do forget. I’ll forget to take morning ones or night ones. But at least if I don’t remember if I took it or not, I can look and see I took it or didn’t take it. Part 2: It would become very confusing That’s what used to confuse me hmm, Did I take it, did I not take it? And so I got things down to just morning and night. There were other pills that I used to have to take .. four in a day wow, Morning, midday, late afternoon and then evening So it would become very confusing.

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And if I didn’t have it laid out in front of me, did I take it, did I not take it? hm hmm Part 3: I started coordinating with my doctors And then I started coordinating with my doctors To get it down to just, let’s just get it down to twice, two times a day. Oh, good. So you advocated for yourself with your doctors? Right. Sounds like? Yeah. Because I was getting too confused, And I was missing too many. I would look back on the week and say, “Oh, my god, I totally missed all week. I missed the noontime one.” Right So that’s when we started working on getting it down to twice a day. Discussion: Pill Box, “These are all my brain injuries” With Excerpt 2, Judy portrays a self with “brain injuries” who has to take a multitude of pills every day. In the excerpt’s photo, a cardboard shoe box sits on a couch patterned with leaves and berries. The box contains more than 20 plastic vials whose round, white caps face the camera. A weekly organizer with separate containers for morning and evening pills lies across the vials. The organizer depicts a strategy that Judy developed in coordination with her doctors to get her medication regimen down to just “two times a day.” To be an executive chef requires good organizational skills. Brain injuries pose a challenge to being organized, as related over and over by participant photos of their lives in “chaos.” Having the experience and memory of being highly organized has helped Judy to compensate for short-term memory challenges after brain injury. Despite her skills and strategies, however, she still forgets to take her medications or takes the wrong ones at the wrong time. “Even just last Sunday I took my evening medication in the morning,” she told the group. The medication schedule that Judy describes in her narrative exemplifies a clinician tendency to focus on “identifying and treating disease” and to ignore factors in patients’ lives that “can have a powerful influence on patients and their illness experience” (Rich, Taylor, and Chalfen 2000:244). For example, system expectations on the time allotted for patient visits may cause providers to feel “unprepared and too rushed to meet the educational, clinical, and psychological needs” of patients with a chronic condition (Institute for Healthcare Improvement 2002:2). “Clinical time” may suppress

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narrative “in the name of treating the diagnosis” (Mattingly 1998:142). The photo of Judy’s pill box and our conversation about it illuminate an important aspect of Judy’s illness experience from her perspective (Kleinman 1988): how is a person with short-term memory problems supposed to negotiate a complicated regimen of pills several times a day? Judy’s use of the word “coordinating” implies that she participated in “collaborative problem-solving” with her doctors to determine a more manageable medication regimen (Rich et al. 2000a:475). To coordinate is “to place in the same order, class, or rank” (American Heritage Dictionary, Second College Edition:321). Judy appears to see herself on an equal footing with her doctors in developing solutions. To coordinate is also “to harmonize in a common action or effort” (American Heritage Dictionary, Second College Edition:321). Judy does not express antagonism toward her doctors. Rather, she appears to have worked harmoniously with them to figure out a medication regimen that she can follow, given her postinjury capacities. In looking closely at Judy’s photo of pills (Becker 1986), I noticed for the first time the pattern of leaves and berries in the fabric of her couch. These natural elements presage the next image in her narrative of identity and hint at the passion for gardening that Judy began to pursue after her brain injuries. Judy’s pill box “contains” her brain injuries. Her injuries are an unavoidable part of her life and identity, but they no longer overwhelm—or define—her. Excerpt 3: Garden, “The new Judy” Part 1: I thought, “Oh, I can do that.” So then as I’m going to these flower shows And seeing .. people gardening in containers I thought, “Oh, I can do that.” So, I started doing that .. out in the backyard, There was a picnic table, so I would do it on the picnic table neat! And, that was, “Okay, that works.” And each year I would increase it a little bit more and have more. Part 2: I started experimenting I started off with herbs And after they lived, I started experimenting with the flowers and more.

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I did better with the hardy ones. And then eventually, it was a process, And [I] became good with, could actually do a nice set of containers and stuff, And then I just said, “Well, we’re going to try the ground again.” [Deleted: her perennial gardens in the ground and coordinating with landlady on front gardens] Part 3: So I have something new So I’ll have my perennial garden And I have a side garden on this side of the house that’s the oldest garden I have, Because that’s where I first started doing perennials,

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And then in the back, now I’ll have a whole area to do containers. So I’m going to be doing a lot of gardening. You are! So that’s my new passion ah hah! That has helped replace the old passion yes That I can’t do all the time. Because I have limited space in my house, I can’t do a lot of cooking, And so I have something new hmm. [Deleted: gardening as an outdoor activity] Part 4: I’m in the roses now I’m living out, like you, out in the nice countryside Where it’s quiet and I can hear the birds And the bunnies are out there And chipmunks and the neighborhood cats come and visit me and things like that So again, I’m learning to enjoy the slowness And I’ve stopped now, literally stopped and smelled the roses I’m in the roses now. So it’s, you know, a whole different way of life for me now. Part 5: The identity of the chef is no longer the focus of my life So it’s part of the new, the new Judy. The identity of the chef is no longer the focus of my life. There’s other things now, I have other interests and things that are important. And this is just one of them. Discussion: Garden, “The new Judy” Judy’s image of her garden shows a neat and tidy landscape of plants and mulch. Decorative white stones mark the garden’s front edge. The sun is shining. A garden can be a metaphor for regeneration and growth. With her image, Judy shows us what she has accomplished in her garden and in her life after brain injury. Several years of experimentation—trying, failing, trying again, and succeeding—preface her picture. As Judy explained to me, she tried gardening for the first time about eight years after brain injury. Her first at-

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tempts met with little success; balance issues caused her to keep falling into the plants, and they died. Excerpt 3 begins as Judy tells how her sister, who studied horticulture and is an avid gardener, took Judy to a flower show where she noticed people in wheelchairs who were gardening in containers. They inspired Judy to try gardening again. The image of Judy’s garden is frozen in time. It is an image of now, and we do not see the struggles she had to create her garden. Our conversation, however, expands the time frame of her image. The conversation is sequential: each part provides the next installment of her tale. In Parts 1 and 2, Judy explains that being successful at gardening was a “process.” After she “started off with herbs” in containers, Judy began “experimenting with the flowers.” Eventually she had “a nice set of containers” and decided to tackle a garden in the ground again. Miles and Huberman (1994:111) define a process as “a string of coherently related events.” Judy’s excerpt helps us to understand that the perennial garden depicted in her photo is a tangible achievement in her ongoing gardening—and healing—process. Perhaps Judy’s process can be seen as steps she has taken toward changing her concept of herself (Rogers 1980). Learning to be patient was an important factor in gaining the ability to garden. In her work as a chef, “impatience” was a virtue. Customers “don’t want to wait for their food,” and chefs cannot wait for produce to arrive on time. After her brain injury, Judy “really had to slow down,” and gardening helped her learn to slow down. Slowing down appears to have helped Judy to develop patience. Judy says that she “didn’t have the patience” to garden until she had grown more patient with herself. Judy’s training as a chef likely contributed to her success with her new passion. Being a chef involves experimentation and risk. Perhaps Judy’s experience as a chef helped her to avoid becoming discouraged and to persevere despite her failures (Frank 1995). We see Judy’s willingness to make mistakes and try again also in her approach to taking photographs. Judy took nine photos of her gardens: two inside containers, two outside containers, and five of her perennial gardens in the ground. None of these photos fully illustrated what she wanted to portray, so she contributed a photo from outside the time frame of the study. Both cooking and gardening require creativity. Prigatano (1999: 215) notes that “creative people often have a fluid sense of identity.” Perhaps Judy’s creativity helped her to allow her chef identity to recede and a new identity to gain in importance. Being a chef and being a gardener seem to have aroused a sense of “passion” in Judy. Pri-

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gatano (1999:210) notes that a “sense of passion helps tremendously with the creative force behind so many discoveries—personally as well as collectively.” A notable contrast between Judy’s two passions of cooking and gardening is their locations: outdoors versus indoors. Spending time in nature can be an important source of meaning for people as they enter midlife, with or without a chronic condition like brain injury (O’Connor and Chamberlain 2000). I asked Judy about this contrast. And a big difference is, that I notice about it, is it’s outside as opposed to inside. Yes, yeah, because I wanted to be outside more. That was purposeful, too? Yes. Why? Because I live in a quiet town where it’s quiet and nice and I like being outside, So I wanted to do something ... that would get me out of my house. When it’s nice, I can be out there. When it’s not nice, I don’t have to go out there. I’m not that fanatical of a gardener that I go out there when it’s raining. At least not yet. Right If it doesn’t look good, well, this too shall pass. Patience with imperfection in herself and in her garden allows Judy to enjoy her new passion without exhausting herself to the point of getting sick or triggering a migraine. She recognizes when she needs to slow down and conserve her energy and her health. “If it doesn’t look good, well, this too shall pass.” Judy is able to take the long view and see that the state of the garden right now is not its static or permanent state. She appears to accept that all experiences or states are transitory, enabling in turn continued “opportunities for the creation/discovery of new meaning” (Kenyon 2000:19). In Part 4, Judy talks about the many animals that visit her while she works in her garden. Relationship with animals can be an important source of healing for people with brain injury. Chris R., one of the photovoice participants, included in the exhibit a portrait of herself with her two dogs. She says that they have helped her to “realize the really important value of the basics. They warm my heart and comfort me.” In Part 5, Judy concludes by explaining that now she has “a whole different way of life.” She has developed a new self as gardener. Yet gar-

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dening is just one of the interests “important” to her now. Judy explained that she gets great satisfaction out of working 8 to 10 hours a week at her local library and learning to make paper by hand. She enjoys working on strength and balance in her physical therapy appointments. Her road of self-discovery appears to involve finding balance in a life in which “interests” and part-time work have replaced “career” as the focus of her efforts, energy, and sources of meaning. Excerpt 4: Keys in the Freezer, “What do I make out of that, that I want?” Part 1: We as brain-injured people put things in weird places It’s just this bizarre thing, That we as brain-injured people put things in weird places. It’s just not things that connect. It shows the disconnectedness of brain injury that Why would you do that? It doesn’t make any sense. It makes absolutely no sense. But yet, if you have a brain injury— It makes sense. Yes. Part 2: Maybe I was getting . . . a glass of water with some ice cubes You know, the nonchallenged people think that that’s just really bizarre Right. And I suppose it is. It is, yeah, it’s like “okay ..” But? It’s probably because I came in, And even though I wasn’t putting something in the freezer at the time, I was so tired That maybe I was getting myself a glass of water with some ice cubes Yes And that’s when I put the keys down, To get the ice cubes Right And that’s where they stayed It never went any further, the connect, It just disconnected right there and that’s where they stayed Wow

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[Deleted: her strategy for keeping track of her keys and details about the food in her freezer, most of which she made from scratch] Part 3: I make things out of nothing So the chef in me is still there I make things out of nothing [Deleted: freezes egg whites; nothing goes to waste] So that’s what my freezer is full of, things like that And that’s the chef in you Uh, huh. I’ve been able to live on not a lot of money, food-wise I’ve been able to really stretch the dollar Because of your cooking skills and knowledge Right

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Part 4: I can do that because I was a chef I buy what’s on sale And then I make what I want out of those ingredients And I can do that because I was a chef Yes I can make something out of not a whole lot Yes Something that’s gone by a little bit or something that’s on sale I don’t have to buy the premium Interesting What I feel like eating or making It’s well, this is what’s available, What do I make out of that, that I want? Discussion: Keys in the Freezer, “What do I make out of that, that I want?” In the photograph, a set of car keys rests in front of plastic containers of frozen food in Judy’s freezer. When the photovoice participants presented their exhibit at the Brain Injury Association of Massachusetts annual conference in March 2007, Judy’s image of her freezer elicited strong reactions. More than one brain injury survivor on seeing this photo exclaimed, “I didn’t know anyone else did that!” In our conversation, Judy puts her image in context and explains that the “bizarre” behavior it exemplifies shows the “disconnectedness” in the brains of persons who have survived brain injury. In Part 2, Judy reveals that she is the person who put the keys in the freezer. She is comfortable disclosing her brain injury. In Part 3, Judy explains that she made much of the food in the freezer from scratch, using items from the discount table. She can stretch her food dollars because of the knowledge she gained as a chef. She notes the frozen herbs, grown in her garden— revealing that the image also shows her new identity as a gardener. According to Matthew Roser and Michael Gazzinaga (2004:56–57), specific areas of the brain “carry out highly automatic processes that occur outside of conscious awareness and control,” and processing is “distributed around the brain in functionally localized units.” When a brain is damaged, each hemisphere can receive information that “remains unknown to the opposite hemisphere” (2004:57). Judy’s image of keys in the freezer portrays the feelings of disconnectedness experienced by many brain injury survivors. The process of taking the photo, discussing it, and writing a caption is an example of what Roser and Gazzinaga (2004:58) call “construction of a personal narrative that ties together elements of our conscious experience.” Much of the research literature on brain injury focuses on survivors’

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problems or weaknesses, not on their strengths. An article by Coehlo et al. (2005:1139) that outlines the “narrative discourse” impairments in both the micro- and macrolinguistic processes of their sample of adults with TBI is one small example. Impairments after brain injury can prevent a brain injury survivor from telling a story in a logical sequence compared with adults without brain injury (Coehlo et al. 2005:1143). Yet interventions that measure deficits in the ability of brain injury survivors to tell stories are usually carried out in isolation from survivors’ real lives. The research activity may involve retelling a researcher-constructed story after seeing a series of images on a film strip, or generating a narrative after looking at a painting. In discussing the clinical implications of their work, Coehlo et al. (2005:1144) acknowledge that “poor carry over and maintenance” of efforts to improve discourse impairments of TBI patients have been attributed to “the lack of relevance of the treatment materials” to survivors’ real lives. Perhaps results generated by research and testing that do not relate to brain injury survivors’ lives are similarly lacking in relevance. It is important, however, to put research on impairments after brain injury in context. When survivors are perceived by health-care providers and insurance companies as “normal,” they can be excluded “from necessary medical services” (Nochi 1998:874). Diagnosis of impairments after brain injury can be medically necessary and may also be necessary to the healing process. Judy took a photo of her keys in the freezer to show a challenge that many brain injury survivors face. In “audiencing” her photograph in our interview (Rose 2007), however, Judy focuses as much on the personal strengths inadvertently displayed in this image as she does on the problem she meant to portray. In our conversation, Judy “suggests a second reading that emphasizes resistance and agency” (Riessman 2000:137). She sees in her image strengths and strategies as well as weaknesses and failures. She resists being portrayed only as a brain injury survivor who puts things where they don’t belong and then forgets about them. At this point, 17 years after her injury, Judy has a part-time job she enjoys, enough money to live on, subsidized health care provided through the state, and meaningful relationships with family, friends, coworkers, and the animals that visit her while she gardens. Judy appears to have no regrets about her lost identity as a chef. She has in a sense returned home from her hero’s journey (Frank 1995). I can still take things to potluck parties And I can still go to meetings and be the person who brings the refreshments

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And not have it break the bank So that has been a blessing, you know? I’ve been able to use the past knowledge in a new way.

Discussion Judy appears to have reached a point where she sees the potentially disparate elements of her life before brain injury and after brain injury as fitting into a larger context (Reker and Chamberlain 2000). In her images and our conversation, Judy portrays her process of discovering a new identity after brain injury through images that depict various aspects of her self experienced and developed over time—a chef, a person with brain injuries, and a gardener. Judy makes “visible” a self who is a “project of everyday life . . . articulated in the plural as ‘selves’” (Holstein and Gubrium 2000:13). Her “storytelling of the self” is “actively rendered” as Judy describes coordinating with her doctors and succeeding in her new passion of gardening (2000:103). Her story is also “locally conditioned”—by the source of her brain injury and the services and supports available to her (2000:103). Judy’s narrative of identity appears to show that she has created “order out of the discontinuities engendered by ruptures from the normal course of events” (Mattingly 1998:107). Judy no longer speaks in one “voice” as chef; neither does she speak in one “voice” as brain-injured person (Mishler 1999:8). Instead, Judy speaks “as a chorus of voices” that includes chef, gardener, librarian, brain injury survivor, self-advocate, support group member, person with patience, and lover of nature (1999:8). Through her images and our conversation, Judy reveals “a multiplicity of self-definitions” (1999:154). She describes her “road” of self-discovery after brain injury as a process. Elliot G. Mishler (1999:8–9) calls this a “process of identity formation” and notes that “life-course disjunctions, discontinuities, and transitions” can be significant for the “formation and achievement of . . . sub-identities.” There is danger in seeing Judy’s adaptation to living with brain injury as taking a “linear, progressive course” because we are seeing and hearing about her life now, 17 years postinjury (Mishler 1999:151). We must take care to avoid aggrandizing her visual data—the organized pill box and the beautiful garden—or minimizing her verbal data, when she describes forgetting to take her medications and falling in

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her plants and crushing them. Perhaps most useful to consider is her image of keys in the freezer, which shows her multiple, shared identities as chef, brain injury survivor, and gardener, “actively formulated” over time as a result of disjunctions and a willingness to experiment, fail, and start again (Holstein and Gubrium 2000:10). In the final image of her visual illness narrative, Judy’s “assembled” selves share space in her life just as her keys, herbs, and home-cooked food share space in her freezer. Judy’s narrative of identity prompts questions: Is taking photographs especially useful for brain injury survivor illness narratives that facilitate appreciation of strengths and discovery of meaning in life after brain injury? Could participatory visual methods encourage patients and providers to work together harmoniously to resolve health issues and adherence challenges after brain injury? Can the goal of supporting brain injury survivors in their quest for new meaning in life be framed as a public health issue? If so, what social policies could federal and state agencies, institutions, and communities put in place to support a survivor quest for meaning that would be cost-effective and sustainable over time? In gathering data to make policy decisions, do we need to use methods that are relevant to brain injury survivors’ real lives?

Judy Responds Judy and I spoke for two hours about her chapter. We met at the Natick Library, after a photovoice project outreach meeting. Children walked past the window. The sunlight gradually faded as dusk drew near. Judy told me that she had read the chapter in stages, a few pages here, a few pages there, because reading often brings on headaches. Before we met, she read the chapter over again, this time straight through. Her response consists of excerpts from our conversations about the chapter. For ease of reading, I have removed repetitions, hesitations, or places where her speech stumbled. I was really impressed, inspired at so many words. When I was reading this, I found it fascinating, what you were able to pull out of our conversations. I think that is part of the brain injury, you forget what you say, and I forgot our conversations. You know, I remember parts of what they were,

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but there were many things I had forgotten. So it actually brought me back to those afternoons that we had spent the time talking together. The chapter gave a storytelling element to a conversation. My conversation wasn’t necessarily a storytelling way, but you were able to put that conversation into something that made sense. We started talking about passion. I have to be passionate about something in order to keep me interested in it. If I’m not passionate about it, it only holds my interest for so long. It has to grip me in a way that will make me stay with it. And passion about things has been really important in my life. I now come up with more strategies to help me get better. There has to be some intensity, to make me want to pursue it. I know that if I picked up an instrument, that’s a really good thing to do, a good brain exercise, but they don’t get done because they don’t motivate me. I have to feel driven inside. I asked Judy to comment on the downsides of her brain injury. I tend to talk about the positive stuff. I minimize, I really minimize my struggles, in the sense that I don’t focus on that, and I think that’s why I strategize so much. [laughs] Because I don’t want to be there [with the struggles]. I don’t really like even acknowledging them. I have to strategize a way out of it. When I’m forced to think about it, yes, I do remember [a] time when the struggles were more prevalent. I would get frustrated and I would throw something against the wall or whatever. But that doesn’t help anything. So I don’t remain there. Sometimes I think it’s hard for me to come back to those days or to remember that [the struggles], because I’ve already put that in a box and put it away, and said, no, I don’t want to look at that any more. So I think maybe you would have to draw it out of me. I don’t give it up easily. I asked her if she would be willing to give an example. Yeah, sure. Let me go back and think about it. Looking at the

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picture of the pill box, that was a really negative thing. At one point I had so many pills. I had to take them at different times of the day, multiple times of the day. I just could not keep up with taking pills one and two at breakfast, and two and four at lunchtime, and five and one again at 3 P.M. I just couldn’t figure it out. And I’d get so, so frustrated with the whole thing. There would be days when I said, I can’t figure this out, I’m not going to take anything. I asked Judy if money was a downside, because I knew that she had been forced to spend all her savings on health care after she had lost her job and before she enrolled in MassHealth. Right. I have absolutely no money in the bank, I have no retirement. I just hope and pray that my disability, they tell me that my disability payments will remain the same, that they won’t get cut down when I turn 65, but there’s no guarantees. I had to spend my retirement fund. I have nothing. I live from month to month. There’s really very little opportunity to save anything. It takes months of putting money aside to do something. I have to really live within my budget, you know. .. Yeah, there are downsides, definitely, but I don’t like to think about them. Some people, they want to know all the negative things and I’m like, why do you want to know this stuff? [laughs] I don’t want to know it, why do you want to know it? . . . In my case, money wasn’t part of my story because I have always felt it not being a big part of my life, so it didn’t even come into my sphere to leave it out. It had a huge impact on my life, but not emotionally. Reflecting back on it, I took pictures of things that affected me more emotionally. I remember seeing Laura Foley’s picture of the mess of wires.1 When I saw the kinds of pictures that she took, it completely changed my perspective of what to take pictures of. It was the emotional things, the identity lost. I commented on the reaction of Judy’s mother when she attended our informal photovoice exhibit for family and friends. She had called Judy’s binder of photos and narratives her “happy book.”

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She would probably remember more of those struggles, especially those first few years, when my brain injury was at its worst. I don’t remember those days very well anymore, because the brain injury didn’t let things sink in. Toward the end of our conversation, I asked Judy to look over the section of the chapter where I had brought in the group members’ discussion of acceptance and Judy’s photo of her scar. (I wanted to check whether Judy felt comfortable with the way I had described her hair.) Immediately upon our turning to the page, Judy exclaimed, I love the way you describe my hair! “It stands up in feathery tufts like in Peanuts, like Woodstock.” I love that. I call it my crazy hair. . . . You tell them that I loved it and wouldn’t let you take it out! I thought you picked up and wrote very well about things that weren’t part of our conversation, that you were a good observer of things. I didn’t find anything that was untrue of me, or my personality. You picked up and explored who I am in a really true manner. We pondered the group discussion about the photo of her scar. That picture of the scar represents such an important .. all the words are coming up in my head, things like freedom and acceptance .. I couldn’t have done that [taken that picture] two years prior [to our photovoice project]. That for me was probably the biggest statement about where my life is now. So the slice of now, that’s in my photo there. It shows where I am at right now, how things have changed so differently, how life is so different from what it was, right after my surgery, 5 years after my surgery, 10 years. I was going through different things at those times. And that picture is of now, today. It’s not the end of my story. But it’s a beginning of a whole chapter. It’s like the end of the shame, of having to try to cover it up, not wanting people to see that [the scar] as the first thing. I never hid it, but now it’s out there. And you know, it makes for interesting conversation. Now it’s just, well, that’s just part of me, you know.

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Here is the photo of Judy’s scar and what she wrote about it for the photovoice exhibit.

New depth of acceptance

New depth of acceptance. In my 17th year of recovery, I am no longer shamed by lack of hair and scar. It represents a new freedom, pride in what I have overcome.

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7 Conclusion: Implications for Healing, Policy, and Future Research Just to show something, anything, in the photographic view is to show that it is hidden. —Susan Sontag (1990:121) The act of telling is a means by which the person engages with difficult experiences so as to reformulate them. —Alan Radley (1999:779) The possibility suggests itself of composing with numerous quotations, of communicating not with single photographs but with groups or sequences. —John Berger and Jean Mohr (1982:279)

In this chapter, I reflect on the three cases and view them through theoretical frameworks developed by other researchers before proposing my preferred theory of selves. My proposed theory is firmly rooted in the visual illness narratives of Subject D, Peggi, and Judy, and I present three simple models to visualize it. In the chapter’s second section, I discuss the implications for healing, practice, policy, and future research raised by my participants’ visual illness narratives, my methods, and my proposed theoretical framework.

Adjusting to Life After Brain Injury: Reflecting on Process I did not select the three cases of focus in this book to be statistically representative (Williams 1984). Rather, I selected them because they ap147

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peared to find participating in my study to be meaningful, and their stories in turn seemed meaningful to me. Thus, it appears that the visual illness narratives of Subject D, Peggi, and Judy may also support the theoretical argument that “the arrival of chronic illness initiates a process of cognitive reorganization—meaning-making” (Riessman 2007:55). The life disruption of brain injury has provided “the necessary conditions for fashioning accounts essential to the re-establishment of a sense of direction and coherence” (Radley 1999:782). Defined this way, “coherence” may be another word for meaning in life, or existential meaning (Zika and Chamberlain 1992:133). The three stories in this book show that some brain injury survivors do gain perspective on their situation. Their new perspective encompasses the self and life before injury, self and life in the moment of relating the illness account, and a future self and life (Radley 1999). As with others suffering from chronic conditions, Subject D, Peggi, and Judy are experiencing disruption and a search for coherence that is endemic to living with brain injury, particularly for adults with careers, families, and developed identities (Riessman 2007). One could argue that the interpretive process prompted by brain injury is also prompted by the research method used here—taking photographs and interpreting them in dialogue with other survivors and/or with the researcher. Douglas Harper (2005:757) suggests that his photo-elicitation work with dairy farmers resulted in “discussions that went beyond what happened and how, to themes such as ‘this was what this had meant to us as farmers.’” For my participants, however, their interpretive process began before I initiated this study and has continued since. Instead, the occasion of the study provided an opportunity for them to continue the process of interpreting their lives with brain injury. The stories revealed in their visual illness narratives might have been very different if the participants had not already been wrestling with issues of grief, healing, and self in support group meetings, therapy sessions, and their daily lives. Perhaps this study indicates the value of using these methods along with other methods to put a biographical disruption such as brain injury into perspective in a life lived. However, we also need to put this research into perspective. Each of the three case studies is merely a slice in time, despite the responses from the participants to their chapters, and despite my ongoing relationships with Peggi and Judy. All three cases are stories in progress (Riessman 2007). We do not know the outcomes. Will Subject D become reconciled to his losses and see them from a new perspective over time? Will Peggi continue to bounce back and forth between old self and new, or will she over time start to turn her gaze more often on the future than

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on the past? Will Judy’s acceptance of her injury continue to grow, or has she reached a plateau of understanding and meaning? Theoretical frameworks can help us to put into perspective the process of healing from brain injury that Subject D, Peggi, and Judy are experiencing. Consider the five stages of grief described by Elisabeth Kübler-Ross and David Kessler (2005): denial, anger, bargaining, depression, and acceptance. During the denial stage, “the world becomes meaningless and overwhelming” (2005:10). The anger stage is part of the grieving person’s “emotional management” (12) and “a natural reaction to the unfairness of loss” (16). The stage of bargaining is described as a time of growing confidence that “we can restore order to the chaos that has taken over” and can involve wondering “what if” (19–20). Depression can be a withdrawal from life or a “fog of intense sadness” (20) that “clears the deck for growth” (24). Acceptance involves “accepting the reality” that the change that has occurred is permanent, and learning to “live with that loss” (25–26). As Kübler-Ross and Kessler emphasize, the stages of grief are not linear. Persons surviving a loss (of a loved one, a marriage, a job, an old self) can experience any of the five stages of grief in any given minute, hour, or day. Or they can remain for longer in one stage. Kübler-Ross and Kessler (2005:18 and 7) describe these five stages as “responses to feelings,” noting that going through the feelings illustrated by the framework is part of “learning to live with the one we lost.” For brain injury survivors, the “one” who is lost is the old self—the person they were before their injury. As Peggi says, “I’m not gonna get back to that old self. That old self’s not comin’ back.” The Kübler-Ross stages of grief may be a useful lens for considering the process of healing from brain injury. In Subject D’s visual illness narrative, he shares feelings that suggest the anger stage. Perhaps he is just being his “crotchety old self,” as is his “reputation.” However, in his response to his chapter, he reveals continued “frustration at the Loss of formerly instinctive thoughts and activities” 19 months after our photo interview. He writes of a self that continues to grieve and to feel frustration—perhaps a synonym for anger in Subject D’s context. Peggi appears to be making use of several stages of grief at once in her visual illness narrative. We hear her bargaining when she says, “Some things I wonder if, that accident hadn’t happened, if I could have, would have . . . how different things might have been.” She describes depression when she describes isolating herself, hibernating “for a year or two” after her injury. She indicates acceptance when she says, “This is just the new thing.”

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Judy appears to exemplify the stage of acceptance, revealed in the photo of her surgery scar and her statement to the group: “This is where I am now, but I don’t have to stay here, but this is reality now.” In Judy’s visual illness narrative, we see acceptance in her photo of keys in the freezer and hear it as she says, “That’s when I put the keys down, to get the ice cubes, and that’s where they stayed.” I suggest that we also hear acceptance as Judy says, when referring to food on the discount table at the grocery store, “This is what’s available, what do I make out of that, that I want?” Thus, as with anyone facing a chronic illness or life-changing disruption such as brain injury, the stages-of-grief framework can be useful for understanding the feelings of loss, anger, and acceptance that accompany a life disruption and for helping brain injury survivors to understand that grief is a normal reaction to the loss of a prior self or abilities. At the same time, the Kübler-Ross and Kessler grief framework oversimplifies the experience of adjusting to life after brain injury or after the onset of any chronic condition or disability (Brashler 2006). “Death by its very nature is finite while disability is ongoing or chronic” and grief at the loss of an old self or of prior abilities may resurface again and again over time (Brashler 2006:458). The grief framework can have limited value for brain injury survivors or for anyone living with disability. Ross Crisp (1994:18) developed another framework, based on his qualitative research with brain injury survivors, that can be applied to life after brain injury. He interviewed TBI participants about the extent to which they “found meaning and purpose in their lives after the onset of TBI.” The data led him to group his participants under four types: Entrenched, Strugglers, Strivers, and Optimizers. Belonging to one type or another was “independent of age, time since injury, severity of injury, and employment status” (1994:18). Entrenched respondents “seemed ‘removed’ from regular social contact” (1994:18). They were “self-deprecating” and felt “powerless” (18). They expressed anger, despondency, inertia, and negativity. Strugglers reported only “partially successful” attempts to “achieve personal goals” (18). They had lost preinjury friends and were cautious about disclosing their injury. They were “socially active,” but their “interpersonal relationships were not always satisfying” (18). They often expressed “anger, frustration, and disappointment” (18). Strivers were endeavoring to “realize their ideal selves . . . modeled on ideas of ‘normality’” (1994:18). They partially accepted their disability and “emphasized their positive attributes” (18). They felt “some

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degree of control” in their lives “with the help of external agents and . . . significant others” (18). Further, “they had gained and/or maintained relationships with significant others” and had “new social and avocational activities” that often involved “helping others” (19). Crisp’s fourth type is Optimizers, who “often ‘looked on the bright side’ without rationalizing or de-emphasizing the extent of their disabilities or handicaps” (19). Optimizers “held beliefs that suggested a high sense of well-being” (19). The typology that Crisp developed appears to have relevance for the three participants of focus in my study. Subject D appears to exemplify an “Entrenched” survivor when he says, “I feel like I’m living in chaos and it’s hopeless, I can’t do anything about it.” Peggi appears to express feelings relevant to both Strugglers and Strivers. Her data suggest Struggler when she says, “I don’t tell everybody” about her brain injury, and when she tries to take on tasks but “the reality keeps comin’ up.” She suggests Striver when she speaks of taking “a step in the right direction” and takes photos of friends, family, and service providers who provide comfort and support in her life with brain injury. Judy exemplifies Optimizers when she says, “I can make something out of not a whole lot” and “I’ve . . . literally stopped and smelled the roses.” Both the stages of grief and the TBI survivor typology discussed above appear to be useful for reflecting on how brain injury survivors feel about their lives and where they are in their process of healing after injury. In using these frameworks to view the data of my three participants of focus, however, I fear that I am moving away from their lived experience with brain injury. I fear that I am to some extent objectifying them and failing to see their lives from their point of view. Perhaps another way of considering my participants’ experiences would be more sensitive. Perhaps a turn to issues of identity and self is more appropriate. Research that uses visual methods of narrative analysis often appears to express “a thematic interest in identities and subjectivities” (Riessman 2007:145). Concerns with identity and self are endemic to surviving brain injury (Nochi 1998; Chamberlain 2006; Sherry 2006). Mary FeldhausWeber (2003:51) writes, long after her brain injury, that for several years she “felt like someone, but not like any one I knew. I was a stranger to myself. I was lost.” Brain injury survivors may find it a “struggle to reassert their own identities” and “to be known as ‘survivors’ rather than ‘tragic victims’” (Sherry 2006:209). D. J. Chamberlain (2006:408) argues that “TBI survivors must address self in recovery as well as recovery in self. It is the self that recovery both distresses and endures.”

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For the brain injury survivors with whom I have worked, two identity issues of great importance appear to be (1) learning about the new, post–brain injury self, and (2) building a new identity whose multiple, partial identities include (a) the new, brain-injured self, (b) an old self (with its residual strengths), and (c) a self who does meaningful activities (e.g., parenting, partnering, art, gardening, volunteering, helping others, or paid work). Thus, a theoretical framework that addresses living with brain injury from the survivor’s perspective needs to conceptualize the process of building a post–brain injury identity. I suggest that this process has three stages. In the first stage, the old self is lost and is dominated by the new, brain-injured self. In the second stage, the old self and the new self engage each other, resist each other, and perhaps begin to find balance. In the third stage, the old self and the new, brain-injured self are members of a multiplicity of selves that accept each other and alternate in precedence, depending on the survivor’s context (e.g., doctor’s office, home, work environment, support group, stress level, and health status at any given moment). Very likely, these stages can represent only temporary staging points or feelings, similar to the stages of grief. Brain injury survivors may wrestle at any moment with all of the feelings about self depicted in these suggested scenarios. I have prepared three visual models to illustrate my suggested process of forming a new self after brain injury. The models are inspired by the visual illness narratives of Subject D, Peggi, and Judy. They are a “symbolic transformation” that represents my “attempt to comprehend, construct, and convey meaning” (Feinstein 1982:46). They are presented in Figures 7.1, 7.2, and 7.3. In Figure 7.1, the new (brain-injured) self dominates the old self. The old self feels lost. The new self feels confusion, frustration, anger, and a sense of loss and grief. In Figure 7.2, the old self and new (brain-injured) self are in dialogue. They both resist and acknowledge each other. Feelings of loss and grief are present, but the new self employs strategies. Old self and new self are separate but communicate across the gulf that divides them. Figure 7.3 shows a multiplicity of selves that include old self and new (brain-injured) self. When there is a multiplicity of selves, different concepts of self may gain or recede in importance, depending on context (Mishler 2004). Both strengths and impairments are recognized, and strengths are emphasized (Crisp 1994). The three models depicted may or may not reflect the feelings and experiences of brain injury survivors outside of my small sample. An advantage to their potential application, however, is their simplicity. The re-

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153 Figure 7.1 Brain-Injured Self Dominates

New (Brain-Injured) Self

Old Self

Figure 7.2 New Self and Old Self Are in Dialogue

New (Brain-Injured) Self

Old Self

Figure 7.3 A Multiplicity of Selves Accept Each Other

Patient

Parent

Spouse

New (BrainInjured) Self

Old Self

Worker

Friend Artist

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search and analysis methods I have used support using communication tools and materials with brain injury survivors that incorporate visuals and text together. The field of visual literacy also supports the potential value of simple models. As noted by Donis Dondis (1974:81): “The abstract conveys the essential meaning, cutting through the conscious to the unconscious, from the experience of the substance in the sensory field directly to the nervous system, from the event to perception.” The abstract designs and simple messages of the three figures may make them useful for brain injury survivors as they work with a range of tools and frameworks to reflect on their situations with support group leaders, clinicians, and peers. Perhaps the models could support brain injury survivors’ efforts to reconstruct their story and restore their sense of self (Nochi 1998). Could using these models help brain injury survivors to “think about” and “challenge” their daily “habits” of self by breaking the silence—or invisibility—that is the “language of habit” (Charmaz 2002:31S)? Identity work is not limited only to brain injury survivors. As described by Cheryl Mattingly (1998:119), based on her research on occupational therapists and their work with persons with physical disabilities: “Therapists and patients operate with multiple storylines, multiple possible plots which point toward different possible selves, and they experiment with a variety of self understandings through the actions they take and the experiences they try to create for themselves.” Such work is not easy, no matter what circumstances have prompted it. By implication, the simple models presented here might be useful for reflecting on how persons are living with other long-term conditions (mental illness, multiple sclerosis, addiction to drugs or alcohol, or breast cancer, for example), how they feel about their new identity and their situations, and how they perceive their healing. However, identity work may be even more difficult when dealing with the cognitive, emotional, and psychosocial impacts of brain injury. As Howard Gardner (1975:451) noted, based on his experience working with brain injury survivors: “Careful examination of human development suggests . . . that the formation of the sense of self, of the feeling of a ‘mind’ in touch with and in command of an individual’s behaviors and actions, is a bootstrap operation, one aided by peers, by the language, by the surrounding culture, indeed by the individual’s total interaction with the world.” The literature on brain injury suggests several factors that may influence movement between and among these suggested staging points of identity formation after brain injury. Time is one, though not necessarily always a factor (Crisp 1994). Other factors can include “cognitive,

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emotional, and motivational characteristics” that predate injury (Prigatano 1999:49); “lesion location, size and type” (49); the survivor’s context (Prigatano 1999); the level of social and emotional support available (Crisp 1994); and opportunities to grieve (Chamberlain 2006; FeldhausWeber 2003). Another Perspective Arthur Frank (1998) would argue against my use of the word “stage” in suggesting a process of identity formation after brain injury. From Frank’s perspective, use of the word “stages” in describing the three models of brain injury survivor narratives might pathologize Subject D for a “failure to keep moving.” I could judge him (or any other brain injury survivor) for failing to move from a narrative in which the new, braininjured self dominates to one in which the new self and old self engage in dialogue, for example. Instead, Frank (1998:197) admonishes clinicians to listen to the stories of the “deeply ill,” or anyone who perceives their illness “as lasting, as affecting virtually all life choices and decisions, and as altering identity.” Based on his research on patient stories, he presents a typology with three story types: the restitution story, the chaos story, and the quest story. The restitution story “predominates the talk of the recently diagnosed” (197); it tells of their belief that they will recover. The chaos story reveals unremitting suffering, in a world that is “devoid of effective action” and recovery from illness is not possible. The quest story is told “when the teller claims new qualities of self and believes illness has been responsible for these changes” (197). It expresses “an unflinching view of the reality of illness” and brings out “what can be learned and passed on to others” (197). Frank acknowledges that listeners may prefer “one type of story over another” (1998:197). He also notes that a preference for one story over another may tell more about the listener than the ill person. He emphasizes that “the quest story is not a goal toward which ill people ought to move, nor does the chaos story represent personal or social failure” (1998:197). Having a brain injury whose cognitive, physical, emotional, and spiritual impacts are long-lasting constitutes being “deeply ill.” Frank’s typology of stories of the deeply ill has obvious applications to brain injury survivors. Most relevant, however, may be his suggestion for using his typology as “listening devices: tools to help those who attend the ill to understand—not to decode—what they hear” (1998:197). He suggests that

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listening carefully to these stories provides insights into “where someone is” and “why they have to be where they are” (197). What matters is to honor “the immediate story being told,” and to nurture the teller (197). He counsels that attempts to “change the person’s story, however well intentioned,” may be “mistimed or misguided” (197). He advises that “letting people tell their story repeatedly, gently noting changes in that story, can help” (197). By attending to the storyteller, the listener shows that the narrator “is no longer alone” (197). I have seen Frank’s approach in action in the group of brain injury survivors that welcomed me into their midst. I suggest, then, that the three visual models presented earlier should be seen not as stages in identity formation after brain injury but as a typology of brain injury survivor stories. We hear the first story (braininjured self dominates) when injury, illness, confusion, loss, and feelings of hopelessness and frustration consume the teller. We hear the second story (new self and old self are in dialogue) when the teller speaks both of impairments and of strengths and seems to bounce back and forth between feelings of being a new, brain-injured self and his or her old (more competent) self. We hear the third story (a multiplicity of selves accept each other) when the narrator acknowledges but gives less importance to the new, brain-injured self and instead narrates a range of selves, activities, life experiences, and strengths and strategies, as well as suffering. Following Frank’s admonishments, then, we recognize that there is value in attending and listening (even repeatedly) to brain injury survivor stories. Listening honors the lives and stories being told. At the same time, an awareness of the suggested typology of brain injury survivor stories could support listeners as they give the gift of listening. Perhaps an awareness of the typology could provide opportunities to note changes (if any) in the stories being told—for “better” or “worse.” For example, if a survivor’s story changes from one that shares a multiplicity of selves to one in which the brain-injured self dominates, perhaps the change could signal a change in circumstances or a call for help, support, or understanding. Most important, however, may be the fact that visual illness accounts by brain injury survivors are “always more than ‘stories about’: they are also ways of ‘seeing as’” (Radley 1999:791). The preceding discussion of the value in listening to survivor stories— and seeing their experience through their eyes—evokes the patientprovider relationship and reminds me of the need to turn to policy issues as I conclude this chapter. Perhaps my suggested typology of brain injury survivor stories, rooted in the visual illness narratives of the three survivors of focus in this book, presents an opportunity to improve the patient-provider relationship for brain injury survivors—and potentially the

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patient-provider relationship for any patient living with a long-term condition. It is only in the application of the learning from this study that we will know the value of the findings presented in these pages. Reflecting on Process: A Researcher’s Perspective My study is rooted in my own experiences as a photographer, an editor, a photojournalist, and the sister of a young man whose intensive youth hockey career may have caused him to have unrecognized TBI. My life experiences have contributed to my choices of topic and methods. In turn, the experiential process of researching and writing this book has provided more learning than could possibly be described in these pages. In doing research with elderly Americans in the United States, Susan Gaskins and Linda Forté (1995:22) found that service to others emerged as a major source of hope. Their participants said that “their contributions to their communities and other people enriched their lives.” My personal transformation from journalist to researcher has helped me to feel of greater service to others—and, as a result, to feel a greater sense of hope in my life. My first TBI research participant, Laura F., is also my neighbor, friend, and a cofacilitator of the photovoice project. She has taught me invaluable lessons about living with TBI. She has in turn expressed appreciation for being part of the research. Perhaps, then, being of service to others can go hand in hand with creating opportunities for others to be of service also, thus promoting mutual learning and sources of hope.

Implications for Healing, Policy, and Future Research on ABI An underlying theme of my suggested narrative typology of brain injury survivor stories is dialogue. When the brain-injured self dominates, there is no room for dialogue. When old self and new self engage, dialogue is an essential characteristic of the engagement. When a multiplicity of selves coexist, dialogue is implied in the ongoing experience of self in different contexts. The visual illness narratives presented in this study also imply dialogue (1) among different viewers as they reflect on the narratives (Rose 2007); (2) between participants and me as we engage in the research interview (Riessman 2007); and (3) within participants themselves as they reflect on what matters to them, take photographs,

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My first TBI project participant and friend, Laura F., with her daughter

and talk about them (Mishler 2004; Frith and Harcourt 2007). Visual illness narratives have served as the basis for dialogue in other research studies also. One example is the Video Intervention/Prevention Assessment project of Children’s Hospital Boston, where the videos of adolescents living with asthma have prompted dialogue “among adolescent asthma sufferers, adults in their social worlds (e.g., parents, teachers), and the medical community” (Rich and Chalfen 1999 in Harper 2005:756). Dialogue is also an underlying aspect of person-centered care. As depicted in the Star Quality model, relationships in the health-care setting rely on the sharing of information between provider and patient (Chilingerian 2004). Sharing information is two-way communication that implies engagement and reciprocity in conversation (Riessman 2007). When writing about nursing research with stroke survivors and other patients with chronic conditions, Thomas and Pollio urge practicing nurses to meet with patients “ready to engage in dialogue” (2002:254). Reflecting on the importance of listening to patients, they comment: “It is clear that we make contact with one another primarily in conversation. This means that I must hear and listen to you as you must hear and listen to me. And this is the most important lesson: . . . to listen respectfully

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to patient and research participants so that we might understand the unique perspectives of their experiences and of their worlds” (2002:256). A relationship that has two-way communication implies a balance of power and mutual learning. Thus, patients may be changed by the interaction, and so may providers (or researchers) (Lorenz and Kolb 2009). Thomas and Pollio suggest that in dialogic research, “the researcher is invariably changed by his or her interaction with participants” (2002:254). Gretchen Berland has found that her research to understand disabled patients’ perspectives led her to “listen more carefully” and “consider the time and effort it takes for patients to reach my clinic and how long they have waited before coming to see me with a problem” (2007:2536). Thus, listening to patient stories may have value beyond the clinical interaction, if the listening results in taking more seriously the amenities and convenience dimension of the Star Quality model (Chilingerian 2004). Patient-centered care requires learning about patients’ perspectives (Berland 2007). Listening and “taking the other’s perspective” are also described as “a necessary step in social change” (Frank 2000 in Chase 2005:668). Visual research in which patients are collaborators with researchers and clinicians is one way to pursue an understanding of patients’ perspectives (Lorenz and Kolb 2009). With chronic conditions, such as ABI, visual research methods may be especially appropriate because visuals engage and allow for the sharing of emotions. As noted by neuroscientist Joseph LeDoux (1996:71): “Emotions are notoriously difficult to verbalize.” Visuals—photographs, videos, drawings, or paintings—may enhance the ability of patients to talk about topics that are difficult to articulate or embarrassing. Feldhaus-Weber (2003:51), who created paintings of her brain and brain injury to discuss with others (including clinicians), says: “The painting gave me something to talk about other than myself. Something to talk about when people came to the house. It was a relief to have something to show someone, to have them look at pieces of paper, not to look at me. It also gave me a way to try to talk about what I was living through.” Neuropsychologist George Prigatano (2003:818) describes his work with a young woman who suffered a gunshot wound to the head and with whom he felt he was “getting nowhere” in their therapy sessions. He asked her to go home and “draw ‘anger.’” She brought her picture back to the next session: Her drawing had no mouth and no eyes, but it did have tears. She had a lot of sadness and a lot of anger. . . . She was lonely. She was scared.

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She was isolated. She was confused. She was angry. She felt like she was falling away from others and not maintaining social contact. . . . I was moved by this picture and told her that she had captured what many brain dysfunctional patients experience. . . . This event was a major turning point in our working alliance. (2003:818–819)

As noted by Peggi in her chapter, visuals can be metaphors that allow for talking about feelings. As seen in this study and others, visuals can be a way to bring the patient’s “life world” into the research or clinical interaction (Berland 2007; Thomas and Pollio 2002). Like paintings, drawings, and other forms of art, photographs “objectify: they turn an event or a person into something that can be possessed” (Sontag 2003:81).1 For both patients and providers, then, the clinical interaction provides an opportunity to acknowledge and share emotions. Emotion is essential to cognition. No longer do we believe that emotion and cognition work separately, as first proposed in the 1600s by the French philosopher René Descartes. Rather, we have come to understand that they work together to influence our learning and behavior and perception of ourselves (Damasio 1994; Shreeve 2005). In an article on motivational and emotional controls of cognition, Herbert Simon (1967:29) argues that “in actual human behavior motive and emotion are major influences on the course of cognitive behavior.” He quotes psychologist Ulrich Neisser (1963 in Simon 1967:29): “human thinking begins in an intimate association with emotions and feelings which is never entirely lost.” Thus, emotion is basic to learning. Michael Polanyi (1958:173) proposes that emotions such as lust and fear are “the most primitive manifestations of the active principle by which we grasp knowledge and hold it.” For Polanyi, emotion is essential to active knowledge, “which is the difference between experiencing and making sense of that experience” (Reinharz 2002:247). Differently stated, active knowledge, initiated in emotion, is the difference between living life and learning from life. Perhaps active learning is vital for learning about the “new self” after brain injury. Perhaps, then, learning is equivalent to healing in the context of brain injury. As one participant noted, “This process gave me a better sense of self. It helped me to know who I am.” Can the strengths of visual methods—engagement of emotions, active learning, and reciprocity—transfer directly to the patient-provider interaction or conversation? If so, using methods that engender visuals related to brain injury survivors’ emotions and real lives could help clinicians be more emotionally attentive and engaged in the clinical conversation. In turn, perhaps talking about photographs in the clinical

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setting might encourage brain injury survivors to be reciprocal as well— to hear what clinicians have to say. Radley and Chamberlain (2001:322) argue that in order to improve the therapeutic relationship, research “needs to embrace issues that are daily there in their daily practice.” Frustration and challenges—on the part of both patient and provider—associated with encouraging action to heal are important practice and policy issues. Can we explore these issues using “natural science models and associated measurement techniques” (2001:322)? Radley and Chamberlain (2001:322) would argue that we cannot: “the application of experimental methods to questions of health care militates against the development of knowledge that addresses issues concerning the therapeutic relationship.” Narrative inquiry using visuals and other methods that encourage dialogue and mutual learning on the part of both patients and providers may be essential for developing evidence and changing practice (i.e., policy) at an essential level in health care: the therapeutic relationship. Policy is made and is relevant at multiple levels: for example at national, state, municipal, community, health-care institution, patient-provider interaction levels, and at the level of individual patients themselves. Different methods may be appropriate for evaluating evidence and making changes at different levels. We also need policies at “higher” levels— institutional, state, and federal levels—supporting therapeutic relationships that encourage brain injury survivors to take action to heal. In other words, policies created inductively—based on lived experience of brain injury survivors—may be more appropriate than policies based on findings from statistical approaches “generalized to particular individuals or within particular therapeutic contexts” (Radley and Chamberlain 2001:324). Perhaps putting in place policies and practices that support the patient-provider therapeutic relationship could transform visual illness narratives so they become tools for healing—visual healing narratives. One example of policy change that could have an impact on the brain injury survivor and health-care provider relationship is medical school and other allied health instruction that encourages listening, empathy, and an atmosphere of mutual learning (Katz 2007). Visual illness narratives used as case studies in training doctors, nurses, and rehabilitation therapists could be invaluable teaching and learning tools. Practicums or field experiences in which patients and medical or nursing students carry out photo-elicitation or photovoice studies together could be invaluable tools for affective long-term behavior of clinicians working with brain injury survivors (Riley and Manias 2004). These suggestions are models of

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learning that would engage emotions, promote active learning, and benefit persons living with a range of chronic, life-altering conditions. The issue of listening to patients transcends any condition. All persons accessing health care need to be treated as whole human beings. However, in therapeutic settings, not every clinician or support group will have the time, interest, or resources to put cameras in the hands of brain injury survivors (or other patients). Could a prepared set of photographs taken by brain injury survivors (and accompanying narratives) be useful for therapeutic conversations? They might bring examples of the patient’s life world—and feelings—into the therapeutic setting without incurring the expense and privacy issues that can come with asking patients to take photographs of their lives. Perhaps some of the photographs and narratives produced for this study could be the start of a “deck” of photographs and narratives by brain injury survivors for use in therapeutic settings. Clinicians and support group leaders could use them to encourage storytelling and the sharing of lived experience and emotions. I dream that such a photo deck could include images and narratives by brain injury survivors around the world, from different socioeconomic circumstances, cultures, and life experiences. Considering Validity and Limitations All three of the case studies presented in this book appear here to tell a valid story of brain injury survivor lived experience. Undoubtedly each is a partial telling. However, in using more than one approach to analyzing visual and narrative data, we as researchers and policymakers become part of the dialogue as we ask questions, respond to stories, analyze data, and suggest implications and avenues for future research. Valerie Janesick (2000:392) recommends taking a “crystallization” approach to research to assist in recognizing “the many facets of any given approach to the social world.” I suggest that we need to see any given individual (brain injury survivor) or any given situation (such as living with brain injury) as a type of crystal. Thus, each person and each lived experience has many facets, any one of which might face us as researchers or clinicians at any given moment, depending on our perspective, our method, our lens, our purposes, and our relationship with the person or situation. With crystallization, “there is no single truth” and we have a “deepened, complex, and thoroughly partial understanding of the topic” (Richardson and St. Pierre 2005:963). My three case studies suggest that we also can view narrative data as a type of crystal, having many facets and perspectives. For us as re-

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searchers to presume that we can know the “whole truth and nothing but the truth” from our interpretation of a participant’s narrative, no matter what its form, is hubris. Using several approaches—in my case, thematic, structural, dialogic, and visual narrative analysis methods—to analyze participant data may provide glimpses into different facets of experience. Using more than one method helps us to gain a deeper understanding of what the data can tell us. Not everyone would agree. When I attended the American Public Health Association’s annual conference in November 2007, I had a brief conversation with the director of research at a renowned rehabilitation hospital. Sensing a possible opportunity for future employment, I asked him if he might have room on his staff for a qualitative researcher. As I recall, he said that it is pointless to do qualitative research with brain injury survivors because “you just keep hearing the same story over again.” I didn’t argue with him; I was not going to change his mind. If what he says is true, however, then the three stories presented here in this book may be generalized to all brain injury survivors. That seems unlikely. In any case, for each of the individual survivors of brain injury— and their clinicians, family members, friends, and coworkers—their story of lived experience with brain injury is rightly of great significance. If qualitative research with survivors of brain injury can lead to (1) new conceptual models relevant to survivors’ lives and (2) ideas of ways to improve the therapeutic relationship for brain injury survivors and their clinicians, then perhaps listening to brain injury survivor stories is not peripheral to policy and practice. Listening to their stories may be essential to policy and practice. Some Practice Implications However, listening to stories does not occur in a vacuum. Hopefully for brain injury survivors, listening occurs in an organizational context, in the patient-provider interaction. Yet findings from this and other qualitative research with brain injury survivors suggest that they are not being listened to by health-care and social-service providers. Instead, many feel discounted, ignored, and powerless. Providing patient-centered care improves patient outcomes. Patientcentered communication has been shown to lead to positive patient perceptions of the interaction—in particular the perception that the provider and patient “found common ground” (Stewart et al. 2000:801). Finding common ground is associated in turn with “better recovery

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from . . . discomfort and concern, better emotional health and, two months later, fewer diagnostic tests and referrals” (2000:796). Thus, improving the patient-provider relationship through listening and finding common ground not only improves patient satisfaction; it also improves patient health outcomes and reduces health-care costs (Chilingerian 2004; Stewart et al. 2000). Future Research Suggestions and Their Policy Implications The three participants of focus in this study all expressed an interest in the policy implications of this study. Subject D asked me how my study related to policy. Peggi and Judy have actively sought and secured outreach opportunities to share the results of our photovoice work together. Policy audiences that Subject D, Peggi, and Judy have expressed interest in reaching include health insurance companies, other brain injury survivors (including veterans), support group facilitators, health-care professionals, the Statewide Head Injury Program of the Massachusetts Rehabilitation Commission, the Brain Injury Association of Massachusetts, and the general public. The photovoice project has been successful in reaching many of these audiences so far. One audience we have not purposefully reached is families. Families are present in participant photographs and interviews. Family members helped participants succeed in their photovoice tasks by taking photographs at their request. Lived experience with brain injury for families could be an interesting topic for future research. Would taking photographs and discussing them together in family groups bring out different information than research on families and brain injury that employed survey methods? Would photovoice help families to communicate and share their feelings after a family member receives a brain injury? Another potentially rich area for future research is the therapeutic potential of taking photographs and talking about them with clinicians or with peers. As one survivor said after taking pictures of her life and talking about them with me, “This process helped me to reflect on my life and realize how far I have come in my healing.” Neuroscientists could investigate whether the approach stimulates brain activity and measure changes (if any) in the brain of a brain injury survivor before and after taking photographs and discussing them with others. If changes are observed, perhaps insurance companies and third-party payers such as Medicare and Medicaid might be motivated to pay for rehabilitation services for longer than current practice. If shown to provide benefit, per-

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haps using visuals in therapeutic settings could become another tool in the therapeutic arsenal of services funded by third-party payers. At the same time, if similar benefits could be realized in nonmedical settings, perhaps agencies that support services for long-term survivors living in the community would be motivated to provide funding and other support for nonmedical personnel—such as high-functioning brain injury survivors—to use this approach in community-based settings, including support groups, thus providing healing opportunities for the “helpers” as well as the helped (Riessman 1965). Finally, the potential implications for efficiency in health care of using visual and other approaches that encourage mutual engagement and learning in the patient-provider relationship merit attention in the future. The Star Quality model (Chilingerian 2004) indicates that sensitive care leads to better outcomes, thus challenging our usual notions of efficiency. Significant health-care system savings could potentially be derived from providing care that leads to gains in brain injury survivor healing and health—care that is currently denied to many. The Star Quality model helps us to understand that refusing care, thus limiting rehabilitation outcomes, has economic implications when it slows the return of individuals and their caregivers to productivity and leads to chronic illness. Perhaps revising our health-care goals from treating symptoms to supporting human development, function, and self-actualization (Maslow 1987; Gil 1992) would lead to savings and long-term efficiencies that we have not yet imagined.

Conclusion I do not mean to suggest that visual methods should take precedence over other types of research methods. Consider what these visual illness case studies appear to have missed: issues related to relationships with partners and the inevitable financial constraints that accompany lost employment and income after brain injury. I suggest, then, that narrative inquiry using visual methods can complement other qualitative and quantitative research methods in the investigation of lived experience with brain injury. The methods used in this study appear effective for eliciting emotions and feelings about living with brain injury. They appear to be effective for engaging the emotions and feelings of viewers as well as participants. These and other illness accounts bear “witness to suffering in ways that have implications for those who are well, in addition to those who are ill” (Radley 1999:779).

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Perhaps it is useful now to return to the three models of brain injury survivor stories presented earlier and reflect on their applicability to the world of research and policy. Perhaps the ideal is not a research and policy world where quantitative methods (and data) dominate qualitative methods. Perhaps the ideal is not a world where quantitative and qualitative methods are separated and resist each other. Perhaps the ideal instead is a research and policy world in which many different methods and approaches have value and take precedence depending on context. I suggest that brain injury survivors—and other persons living with chronic conditions—would benefit. I suggest that all of us would benefit.

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Acronyms

ABI BIAA CDC CT scan fMRI GCS HRSA IOM IRB MRI NCIPC NIH NINDS PAR PTSD SHIP TBI TBIMS

acquired brain injury Brain Injury Association of America Centers for Disease Control and Prevention computed tomography scan functional magnetic resonance image Glasgow Coma Scale Health Resources and Services Administration Institute of Medicine institutional review board magnetic resonance image National Center for Injury Prevention and Control National Institutes of Health National Institute of Neurological Disorders and Stroke participatory action research posttraumatic stress disorder Statewide Head Injury Program traumatic brain injury Traumatic Brain Injury Model System

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Acquired brain injury (ABI). Any injury to the brain that occurs after birth and that “results in deterioration in cognitive, physical, emotional, or independent functioning” (Canberra, Australia Commonwealth Department of Human Services and Health 1994 in Sherry 2006:24). Examples of ABI include epilepsy, multiple sclerosis, traumatic brain injury (TBI), dementia, and stroke. Acute care. Medical and neurosurgical care demonstrated to improve survival and recovery from severe trauma (Cope and Reynolds 2005). Acute rehabilitation. Hospital-based rehabilitation providing significant medical and nursing care to meet the postacute care needs for patients with severe brain injury (Cope and Reynolds 2005). Affect. “The emotional tone of an individual demonstrated by facial expression and voice inflection” (Spear and Crepeau 2003:1025). Anosmia. Loss of smell. Anosmia is a symptom of injury to the brain. Anoxia. An absence of oxygen supply to an organ’s tissues leading to cell death (NINDS 2007b). Attention. “The cognitive ability to focus on a task, issue, or object” (Spear and Crepeau 2003:1026). Audiencing. “The process by which a visual image has its meanings negotiated, or even rejected, by particular audiences watching in specific circumstances” (Rose 2007:22). Akeret (2000) suggests that “when story and image appear to contradict each other, a deeper truth emerges” (224). Axon. A part of a neuron that acts like a telephone wire carrying signals to other neurons; a fiber that can be short or long, thus influencing neurons nearby or across the brain from one side to the other (Restak 2001). 169

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Case. A person who illustrates “a disease category and yet [is] unique in how . . . [he or she is] affected by the disease” or chronic condition (Radley and Chamberlain 2001:323). Also represents “something important about the experience of illness” (Williams 1984:176). Case study. “A strategy of research that aims to understand social phenomena within a single or small number of naturally occurring settings” (Bloor and Wood 2006:27). Closed head injury. An injury that occurs when the head suddenly and violently hits an object but the object does not break through the skull (NINDS 2007b). Coda. A two-line part of a structural analysis of interview text that may repeat a thematic refrain or summarize the excerpt. Cognitive disability. “Global loss of mental ability across diagnostic categories; interferes with task behavior” (Spear and Crepeau 2003:1027). Coma. A state of profound unconsciousness caused by disease, injury, or poison (NINDS 2007b). Computed tomography (CT) scan. A structural imaging technique that provides “information about the neuroanatomy of the skull, brain tissue, and blood vessels” and is used “in assessment of extent of brain injury and in following the medical sequelae of TBI, such as edema, intracranial bleeding, and degeneration” (Anderson, Taber, and Hurley 2005:107). Concussion. Injury to the brain caused by a hard blow or violent shaking, causing a sudden and temporary impairment of brain function, such as a short loss of consciousness or disturbance of vision and equilibrium (NINDS 2007b). Confusion. A state experienced by brain injury survivors as a feeling of disorder in the brain. May be caused by light or noise, when several people are talking at once, or when the damaged brain tries to absorb information. A medical term describing a state of disorientation after a head injury. Contusion. Distinct area of swollen brain tissue mixed with blood released from broken blood vessels (NINDS 2007b). Crystallization. A research validation approach that recognizes there are “many facets of any given approach to the social world” (Janesick 2000:392). With crystallization, “there is no single truth,” and we have a “deepened, complex, and thoroughly partial understanding of the topic” (Richardson and St. Pierre 2005:963). Dialogic/performance analysis. Assumes cocreation of data by “two ac-

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tive participants who jointly construct narrative and meaning” (Riessman 2007:23). Disability. “Activity limitation as a result of mental or physical impairment” (Spear and Crepeau 2003:1028). Empathy. “An attitude exemplified by an understanding of the feelings and perspectives of another person” (Spear and Crepeau 2003:1028). Ependymoma. A slow-growing tumor that arises from tissue in the central nervous system. Existential meaning. “Attempts to understand how events in life fit into a larger context. It involves the process of creating and discovering meaning, which is facilitated by a sense of coherence (order, reason for existence) and a sense of purpose (mission in life, direction)” (Reker and Chamberlain 2000:1). Frustration. A feeling of dissatisfaction, often accompanied by anxiety or depression, resulting from unfulfilled needs or unresolved problems. A common reaction by brain injury survivors to their life with brain injury, when a task is difficult now but used to be easy. May be an expression of internalized anger and can lead to pessimism and resentment (Delmonico, Hanley-Peterson, and Englander 1998:20). May be seen with “difficulties controlling temper” (Prigatano 1993:184). Functional magnetic resonance image (fMRI). A structural imaging technique that provides “information about the neuroanatomy of the skull, brain tissue, and blood vessels” and is used “in assessment of extent of brain injury and in following the medical sequelae of TBI, such as edema, intracranial bleeding, and degeneration” (Anderson, Taber, and Hurley 2005:107). Also “makes use of the magnetic qualities of oxygenated blood to create rapid images of brain blood flow” (Anderson, Taber, and Hurley 2005:107). Glasgow Coma Scale. A clinical tool used to assess the degree of consciousness and neurological functioning (and therefore level of brain injury) by testing motor responsiveness, verbal acuity, and eye opening (NINDS 2007b). Healing. “A process of bringing together all dimensions of self at deep levels of inner knowing to regain a sense of integration and balance” (Coward 2000:161). From the perspective of the participants in this study, a gradual improvement in physical, cognitive, emotional, and/or spiritual states after brain injury that may continue indefinitely. Illness. “Impairment of an individual’s ability to function on a day-to-day basis secondary to a disease process; also refers to the perspective of

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the individual versus the perspective of the physician” (Spear and Crepeau 2003:1030). Illness experience. “The meaning an individual attaches to an illness, may vary from one person to another with the same diagnosis” (Spear and Crepeau 2003:1030). Illness narrative. A story or account of events describing an individual’s illness experience, often a chronic condition. Impairment. “A deviation or loss due to problems with body structures or function (physiological or psychological)” (Spear and Crepeau 2003:1030). Instructional design. The form or plan of training or nonformal educational activities, often for adult learners. A systems perspective on instruction, in which “every component (i.e., teacher, students, materials, and learning environment) is crucial to successful learning” (Dick and Carey 1996:2). In formal application, involves multiple steps, from assessment of needs to writing performance objectives, developing instructional strategy and materials, and evaluating outcomes (Dick and Carey 1996). Lived experience. An “understanding of the nature or meaning of our everyday experiences” living with an illness or a chronic condition such as brain injury (van Manen 2006:9). Falls under the umbrella of phenomenology. Magnetic resonance image (MRI). A noninvasive diagnostic technique that uses magnetic fields to detect subtle changes in brain tissue (NINDS 2007b). Malingering. The experience of a “small but puzzling group of individuals for whom sometimes astonishingly mild trauma is associated with persistent, often disabling sequelae” (McAllister 2005:279). Medicaid. A jointly funded cooperative venture between federal and state governments to assist states in the provision of adequate medical care to eligible persons in need of it. “Within broad national guidelines provided by the federal government, each state establishes its own eligibility standards; determines the type, amount, duration, and scope of services; sets the rate of payment for services; and administers its own program” (Cope and Reynolds 2005:567−568). Medical model. “Approach based on rational inquiry and scientific method that focuses on the identification and treatment of diseases and injuries” (Spear and Crepeau 2003:1031). Medicare. A federal health insurance program covering services for persons age 65 years and older and for persons younger than 65 with disabilities (Cope and Reynolds 2005).

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Microsmia. Loss of taste. A sequela or symptom of brain injury. Mild traumatic brain injury (MTBI). An injury in which “duration of unconsciousness is less than 30 minutes and Glasgow Coma Scale (GCS) scores are 13 or greater” (McAllister 2005:279). However, “there is no universally accepted definition of MTBI” (McAllister 2005:279). Moderate TBI. “Patients with moderate TBI are typically stuporous or lethargic, with a Glasgow Coma Scale (GCS) between nine and 13” (Hartl and Ghajar 2005:51). Narrative(s). “Stories or accounts of people’s experiences. A narrative account could relate to a complete life story, but equally it may refer to the account of a discrete event, such as an experience of pregnancy” (Bloor and Wood 2006:119). In this study, one form of narrative is a series of participant photographs and their accompanying interview texts that have a common theme or thread. Each narrative pertains to one participant. A second form is thematic passages spoken by participants during photovoice project meetings. Narrative analysis. “A family of methods for interpreting texts that have in common a storied form” (Riessman 2007:11). The family includes thematic analysis, structural analysis, dialogic/performance analysis, and visual analysis. Neuron. A nerve cell that is one of the main functional cells of the brain and nervous system (NINDS 2007a). Outpatient therapy or services. Individual therapy services intended to improve residual functional deficits of brain injury patients in the postacute phase (Cope and Reynolds 2005). Part. In structural analysis, a grouping of related lines, centered on a particular theme or subtheme. A part is one section of a longer interview excerpt with several parts. Participant. A term used in qualitative research studies to replace research “subject.” Implies that data and findings are coconstructed in the participant-researcher interaction. Implies a sharing of power and control in the research process (Guba and Lincoln 2003). Participatory action research (PAR). Inquiry or investigation in which researchers and participants cocreate knowledge and build alliances in the “planning, implementation, and dissemination of the research process” (McIntyre 2008:ix). Person-centered care (also patient-centered). “Approach to treatment that demonstrates respect for and partnership with the individual receiving the service” (Spear and Crepeau 2003:1027). Phenomenological methods. An approach to research that “aims to describe, understand and interpret the meanings of experiences in

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human life. It focuses on research questions such as what it is like to experience a particular situation” (Bloor and Wood 2006:128). Phenomenology. A philosophy that emphasizes “the centrality of the human context in understanding life” (Bloor and Wood 2006:128). Photo interviews. In this study, unstructured interviews in which photographs (taken by the participant) are the focus of a conversation between research participant and researcher. Photo-elicitation. Inserting a photograph into the research interview to “understand the world as defined by the subject” (Harper 2002:757). Photovoice. A group activity in which members (1) take photographs and discuss them in order to understand positive and negative aspects of a situation, community, problem, or illness (for example) and (2) carry out outreach activities for education or advocacy purposes. Plasticity. Ability of the brain to adapt to deficits and injury (NINDS 2007b). Postacute rehabilitation (also called subacute). Rehabilitation for severely impaired patients that takes place after the acute care phase (Cope and Reynolds 2005). Postconcussive syndrome. A complex, poorly understood problem that may cause headache after head injury; in most cases, patients cannot remember the event that caused the concussion and a variable period of time prior to the injury (NINDS 2007b). Prelude. In this study, the section or part of an interview excerpt (bounded by discussion of a photograph) that introduces the basic theme of the interview excerpt. Ranchos Los Amigos Level of Cognitive Functioning Scale (Revised). A graduated series that defines ten levels of cognitive functioning from “no response” (Level I) to “purposeful and appropriate” response (Level X) (Hagen 1997). Clinicians often use a diagnosis of Level VII as a cutoff for participation when independent carryover, or the ability to remember and continue doing relevant activities independently, is expected. Recovery. Restoration or return to health or former functioning after sickness or injury. Long-term survivors of brain injury do not use the term “recovery” as they do not expect to return to their former functioning. They prefer the term “healing.” Reflexivity. “An awareness of the self in the situation of action and of the role of the self in constructing that situation” (Bloor and Wood 2006:141). Also “critical reflection on your own research practice” (Rose 2007:168). Rehabilitation. Therapeutic interventions intended “to help individuals

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with a disability return to optimal effectiveness in daily living” (Burton 2000:301). Self. “Not only something we are, but an object we actively construct and live by” (Holstein and Gubrium 2000:10). Also “a matter of interpretive practice, of putting forth the effort and engaging in the everyday work of orienting to each other as selves” (Holstein and Gubrium 2000:11). Also, “a project of everyday life, whose local by-product is more properly articulated in the plural, as ‘selves’” (Holstein and Gubrium 2000:13). Sequela (plural: sequelae). “Alterations in an individual’s cognition, behavior, and emotions” following brain injury (Arlinghaus, Shoaib, and Price 2005:59). Also called a symptom or symptoms. Severe TBI. “A comatose patient who is unable to open his or her eyes or follow commands and has a Glasgow Coma Scale (GSC) score lower than nine” has a severe TBI (Hartl and Ghajar 2005:51). Shearing (or diffuse axonal injury). Damage to individual neurons resulting in disruption of neural networks and the breakdown of overall communication among neurons in the brain (NINDS 2007b). Spinal cord injury. “Impairment of the spinal cord that results in partial or complete paralysis and other neurodevelopmental problems” (Spear and Crepeau 2003:1034). Structural analysis. An interpretive method that looks at a narrative’s component parts—how the story is “made whole, coherent and understandable” and how the narrator uses “form and language to particular effects” (Riessman 2007:81). Subjectivity. A person’s characteristics, “always in process. Never fully achieved” (Rose 2007:111). Subjectivity is “constantly reiterated through its engagements with various structures of meaning, including visual images” (Rose 2007:111). Technical poetic strategies. A type of structural analysis modeled by Gee (1991) in which the text is broken up into idea units, lines, stanzas, and strophes, or in the case of this study, preludes, parts, and codas. Thematic analysis. An interpretation method that “interrogates ‘what’ is spoken (or written), rather than ‘how’” (Riessman 2007:19). The analysis focuses on content and themes. Traumatic brain injury (TBI). Harm or damage to the brain “caused by a sudden jolt, blow, or penetrating head trauma that disrupts the function of the brain. The effects of TBI vary from person to person, depending on the force dynamics of injury and the patient’s anatomy and physiology. When TBI occurs, the brain may be injured in a specific location or the injury may be diffuse and located in many dif-

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ferent parts of the brain. The effects of TBI may be temporary or permanent and include a broad range of physical, cognitive, and behavioral impairments that result from externally inflicted trauma to the brain” (Eden and Stephens 2006:325). Visual analysis. Method of study or observation in which photographs and other images “become ‘texts’ to be read interpretively” (Riessman 2007:142). Can also involve reflecting on image production, the strategies used to create an image or images, or considering audience (Rose 2007). Visual illness narrative. In this study, a series of photographs and accompanying text on an individual’s illness experience and centered on a common theme (Bell 2002). Also applies to video taken for the same purpose (Rich, Taylor, and Chalfen 2000). Visual literacy. “The ability to understand (read) and use images and to think and learn in terms of images” (Moore and Dwyer 1994:3).

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Chapter 1 1. A striking exception is the first-person narrative by Mary Feldhaus-Weber in Willard and Spackman’s Occupational Therapy, 10th edition (Feldhaus-Weber 2003). Her paintings of her brain and written description of her experiences as a traumatic brain injury survivor are profound testimony to the disruption of brain injury and to the comfort and therapeutic value of person-centered care. In the late 1990s, when I first came back from living overseas, I worked part-time as a personal trainer. A visiting nurse suggested that I work with one of her clients, Mary, who had had a severe traumatic brain injury many years before. During our personal training sessions, Mary would describe to me how her brain felt when she exercised and the challenges that her injury posed to her physical and cognitive functioning and well-being. She talked about the paintings she had done of her brain and how creating them had helped her understand her injury and cope. Without realizing it at the time, I was profoundly affected by my work with Mary. She may have unwittingly planted a seed that became my study and this book. Read her chapter in Occupational Therapy. 2. My pilot protocol used photo-elicitation, which means inserting a photograph into the research interview to “understand the world as defined by the subject” (Harper 2002:757). With photo-elicitation, images used in the interview may be historical photographs or images taken by the researcher or respondent. For my study, participants would take the photos. Research endeavors in fields as diverse as public health, medicine, anthropology, sociology, education, and psychology have relied on data collection techniques using visuals (particularly photography) for almost 50 years. A photograph can “unlock the subjectivity of those who see the image differently from the researcher” (Harper 2003:195) and “illuminate a subject invisible to the researcher but apparent to the interviewee” (Clark-Ibañez 2004:1516). John Collier (1957) published a seminal article about his experience inserting a photo into a research interview. He was part of a team studying the relationship between the environment and mental health in a maritime county in Canada in the 1950s. Researchers were finding it difficult to encourage local residents to speak

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at length about their community and lives. The team decided to use photographs of local businesses, streets, and homes as interview prompts. In a more or less controlled experiment, Collier and his colleagues interviewed the residents once using standard techniques and a second time using the research images. They compared the quality of the data gathered using photo prompts with the data gathered using traditional interviews. Collier found that using photographs as prompts helped to (1) bring out information that remains “submerged in verbal interviews” (1957:854), (2) “overcome the fatigue and repetition encountered in verbal interviews” (1957:857), and (3) bridge the language gap for informants who “lack fluency with words” (1957:858). The data gathered were different. Collier found that using photo prompts helped to “stimulate and release emotional statements” (1957:858) and to encourage seeing the community as if “for the first time” (1957:859). The photo interviews “indicated that photos were capable of reaching deeper centers of reaction, triggering spontaneous revelations of a highly-charged emotional nature” (1957:858). Since that early study, photography has served as a powerful tool for understanding people’s lives, illuminating human experience with health and illness, and shifting the power differential between researcher and participant (Worth, Adair, and Chalfen 1997; Rich et al. 2000b). In her work with families to understand living with childhood chronic illness, Hagedorn (1996) used photographs taken by family members to generate discussion. The photographs encouraged spontaneous storytelling and invited participants to lead the research conversation (Hagedorn 1996). For women undergoing chemotherapy, photoelicitation has “provided a window into the private, every day experiences of patients away from the healthcare setting” (Frith and Harcourt 2007:1340). For hospital patients, taking pictures and talking about them has provided a means to allude to the trauma of being in the recovery ward (Radley and Taylor 2003). Researchers have also used video cameras to understand lived experience with chronic conditions. The Video Intervention/Prevention Assessment project at Children’s Hospital Boston asked young people to create video diaries of their lives with asthma (Rich et al. 2000a). The visual diaries prompt “a more direct understanding of people, their life experiences, and their perceptions” than is possible with data “collected and controlled solely by the researcher” (Rich, Taylor, and Chalfen 2000:156). Physician Gretchen Berland (2007) worked with three physically disabled participants (confined to wheelchairs) who used video cameras to record more than 200 hours of their lives (including doctor visits) over a two-year period. She argues: “film is a medium conducive to exploring the smallest details that make up a life. These details are often overlooked, or missed, in clinical research conducted in more traditional ways. As nuances of a patient’s experience are compressed into standardized responses, statistical power is achieved, but depth is lost” (2007:2533). Research methods combining visual images and discussion have proven useful in research with people who have cognitive challenges (Booth and Booth 2003; Dyches et al. 2004) and have inspired hope and plans for the future (Paiewonsky 2005). A stroke survivor used visual images to “make sense of my immediate environment, plot a path for forward motion, and articulate my fears and ambitions to myself and others” (Prosser 2007:185). Brain injury survivors have similar cognitive challenges as they wrestle with their injury and try to

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plan for the future. Yet slowed processing speed in the brain due to injury can prevent a survivor from responding quickly to a question, and short-term memory issues and fatigue may impede their participation in research as well as in family, community, and work life (McCullagh and Feinstein 2005). I surmised that using photo-elicitation with adult brain injury survivors could facilitate knowledge generation by providing participants with time to reflect, something to talk about, and a way to remember. 3. The study of lived experience falls under the umbrella of phenomenology, “a philosophy of knowledge” that seeks “to sense reality and describe it in words rather than numbers” and “emphasizes the common experiences of all human beings and our ability to relate to the feelings of others” (Bernard 2000:20). The aim of phenomenology is to gain “a deeper understanding of the nature or meaning of our everyday experiences” (van Manen 2006:9) by making them “explicit and seeking universal meaning” (19). Gaining an understanding of lived experience with brain injury requires (a) gaining access to survivors’ day-to-day lives and (b) “interpreting the meanings of their experiences” (Bloor and Wood 2006:128). 4. The “broad brush” categorization described is illustrative. My categorization method was relatively informal and involved categorizing each photo by a single broad-brush theme as reflected in the image itself or during the photovoice project or photo-elicitation interviews. I categorized photos discussed during the photovoice project or in a photo-elicitation interview based on the photographer’s intention. I categorized photos that were not discussed according to their image content. In future, images could be categorized using the coding practices modeled by other studies, for example the Video Intervention/Prevention Assessment project at Children’s Hospital Boston. 5. I find the lack of job or role photos surprising, since most participants volunteer in their communities, have a part-time job, or have responsibilities for household tasks.

Chapter 2 1. Mild TBI and posttraumatic stress disorder (PTSD) “share a number of characteristics, including headaches and dizziness” (Jones, Fear, and Wessely 2007:1643). Fatigue and sensitivity to noise are also examples of shared symptoms. During the 1940s, physicians “underlined the similarities in the presentations of head-injured and non-head-injured soldiers seen in army psychiatric units” (2007:1643). As Jones, Fear, and Wessely (2007:1644) point out, “the US military currently committed to serious fighting in Iraq and Afghanistan faces a situation similar to that of the British Army engaged in the Somme offensive of July 1916. Both campaigns have developed into wars of attrition in which head wounds and concussion are common battle injuries.” They go on to note, “During World War I, some doctors eventually accepted that the symptoms of both physical and emotional injury overlap and that it was difficult to distinguish between the effects of a mild head injury and an exceptionally stressful experience” (2007:1644). Current research on British troops returning from the conflict in Iraq shows “there is an association between mild TBI and PTSD,

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with service personnel having a range of symptoms that often meet the criteria for both diagnoses” (2007:1644). The authors point out that mild TBI is an organic injury, which could “reduce stigma and encourage help seeking, a major issue for the present generation of service personnel” (2007:1644). The authors perceive PTSD and depression as more stigmatizing for military personnel but also more easily treatable. The authors conclude: “a clear-cut distinction between physical and psychological injury is unlikely to be realized, not least because the two coexist” (2007:1644). 2. Journal of Head Trauma Rehabilitation (1986) and Brain Injury (1987). 3. There are two basic “mechanisms” of TBI: a contact injury and an injury caused by acceleration/deceleration (Gennarelli and Graham 2005:28). A contact injury results in brain lesions or damaged tissue. An acceleration/deceleration injury “leads to shear, tensile, and compressive strains” that cause damage to nerves and blood vessels (2005:28). Acceleration or deceleration injuries can stretch the brain’s communication mechanism (axons), preventing it from conducting electricity quickly or efficiently. When the brain’s electrical signals are slowed or interrupted, physical, cognitive, and behavioral problems can ensue. A stretched axon (the fiber that acts like a telephone wire carrying signals in the brain) may be able to heal. However, if the axon “is severed or torn, it may not be able to repair itself, and the symptoms may be permanently disabling” (Senelick and Dougherty 2001:21). The primary classifications of brain injury include (1) injury to the scalp or skull, (2) bruising, (3) internal bleeding, and (4) focal or diffuse injuries to nerves or blood vessels in the brain or brain stem (Gennarelli and Graham 2005). Some TBIs are labeled severe, others moderate or mild, though consensus on the classification of brain injuries remains elusive (Jagoda et al. 2002). The perception is growing that “what separates mild, moderate, and severe categories of injury is not so much the nature of brain lesions as their multiplicity, amount, and distribution” (Gennarelli and Graham 2005:27). In emergency medical settings, providers most often assess the severity of a brain injury using the Glasgow Coma Scale, a neurological scale used to assess a patient’s level of consciousness (Kraus and Chu 2005). A score of 13–15 on the scale indicates a “mild” injury, a score of 9–12 classifies an injury as “moderate,” and a score of 8 or less is classified as a “severe” injury. 4. The rate of TBI from motor vehicle crashes has decreased in the past 10 years (Gordon et al. 2006b; Thurman et al. 1999). Causes for the decrease in motor vehicle–related deaths include increased use of seat belts and air bags and advances in neuroscience, trauma care, and acute medical management (including rapid transport to specialized treatment facilities) (Cope and Reynolds 2005; Forducey et al. 2003; Steadman-Pare et al. 2001; Noble, Conley, and Noble 1993). 5. Sherry (2006:24) suggests that ABI is a political term (rather than a medical one) because it is “used in determining the distribution of scarce health resources.” I pursued a PhD in social policy. Thus, an investigation of ABI (a political term) rather than TBI (a medical term) was appropriate for my study. 6. There are few Class I studies (well-designed randomized, controlled trials) of comprehensive-holistic-neuropsychological rehabilitation (NIH 1998). “The consensus view is that robust studies sufficient to influence purchasers of

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rehabilitation services have yet to emerge” (Cope, Mayer, and Cervelli 2005:139). The surge in interest in brain injury may be starting to close this knowledge gap, as results of new studies are published. For example, research into the effectiveness of cognitive-linguistic therapies and visuospatial rehabilitation for people with deficits after stroke provides “substantial evidence” of their value, and the evidence to support cognitive rehabilitation for TBI survivors is also substantial (Cicerone et al. 2005:1681). Some studies show that intensive therapies, particularly physical and psychological therapies, “enhance functional outcomes” of TBI inpatients (Cifu et al. 2003:1441), while others show that cognitive behavioral psychotherapy and cognitive remediation improve “emotional functioning, including lessened anxiety and depression,” and “improve cognitive functioning” among people with mild to moderate TBI living in the community (Tiersky et al. 2005:1565). At the outpatient level, neuropsychological treatment may include psychopharmacology, psychotherapy, cognitive rehabilitation, and/or behavioral treatment (Silver, McAllister, and Yudofsky 2005). Other services accessed by ABI survivors can include occupational therapy, speech and language therapy, and physical therapy. Alternative therapies sought by some survivors include massage therapy, craniosacral therapy, acupuncture, chiropractic services, homeopathy, and meditation. Some comprehensive treatment programs have added peer support programs for survivors that have been “shown to improve longerterm outcomes” (Cope, Mayer, and Cervelli 2000:133). 7. Two of these 11 studies have samples that include survivors of stroke, anoxia (lack of oxygen to the brain), and brain tumors as well as TBI. Five explore the experiences of TBI survivors (five with survivors of mild, moderate, and severe TBI, and one with survivors of just moderate and severe TBI). Three explore the lives of stroke survivors. Their sample sizes differ also. Two studies investigate the experience of a single survivor; the others have samples of 6, 10 (two studies), 12 (two studies), 21, 25, 29, and 60 participants.

Chapter 3 1. It was helpful that I had experience carrying out community projects using photovoice with youth in Lowell, Massachusetts (Lorenz 2003), and Mdantsane, South Africa (Lorenz 2002). Photovoice is a type of participatory action research (PAR) in which researchers and participants cocreate knowledge and build alliances in the “planning, implementation, and dissemination of the research process” (McIntyre 2008:ix). Ideally, photovoice is a systematic investigation carried out in collaboration with people affected by a particular issue— for example, homelessness, mental illness, or violence (Adelman 1993; Lykes 2001). With photovoice, participants take photographs of an issue of concern to them, discuss these issues as seen in the photographs, write captions for selected images, and conduct outreach or education efforts to raise awareness and encourage action (Wang and Redwood-Jones 2001). 2. One challenge to informed consent, I found, was the form’s template sections, which contained content more appropriate to intervention studies (e.g., testing pharmaceuticals). The template sections were more confusing than use-

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ful, but they had to be discussed. The most confusing sections concerned the sharing of health information, which was not relevant to the participants in our small study of lived experience. I tried to minimize participant concerns over the language in the template section, which threatened the participation of one participant. He did not want his health information available to government agencies that might audit the study or might hire him in the future. Upon learning that the template language could not be changed, he determined to take no photographs of people who might be tied to him. 3. When I transcribed the interviews for the hospital study myself, I typed all words spoken and sounds made, including repetitions and false starts, for example “I I I I.” The speakers are noted with “L” for me, another initial for the participant. I embedded brief comments (such as “oh” or “right”) and observations (humor, sadness, laughs) enclosed in parentheses in each passage. I noted silent moments with a comma for a brief pause, two dots for a longer pause, and so on. I did not measure the length of a pause or denote word emphasis. 4. Please note that narrative is used here in this outline and during photovoice project implementation to refer to the captions written by participants to accompany their chosen images. These “narratives” could be of any length or style, from one sentence to several paragraphs, anagrams, or poems. Each participant was encouraged to find his or her own “voice.” 5. I discussed the pending photovoice project with a professor at the Heller School for Social Policy and Management who is also a medical doctor. When I used the term survivor to describe the group and its members, the professor said that I shouldn’t use this term because “you don’t survive a brain injury.” I chose to ignore her and give preference to my participants’ perspective. 6. The entire photovoice exhibit “Brain Injury X-Posed: The Survivor’s View” is posted on Brainline.org, a website funded by the Defense and Veterans Brain Injury Center and developed by WETA, the public TV and radio station in Washington, DC, in collaboration with the brain injury survivor Theresa Rankin. Go to www.brainline.org and search for “photovoice.” The exhibit is also posted on the website of the Brain Injury Association of Massachusetts (www.biama .org). Excerpts may be found at www.lslorenz.com. 7. We discussed the issue of names or no names next to photos several times. One of the facilitators seemed to feel strongly that we should show who took each photo. I think she saw photo ownership as a source of pride for participants. I was worried that using names would be uncomfortable for participants who had not disclosed their injury widely. I also worried that using names would make some participants feel sad if they had fewer photos in the exhibit because they had written fewer captions. Several times we revisited our decision not to use names, and participants consistently chose to leave the photos and captions anonymous. 8. In his book Doing Things Together, Howard Becker (1986) posits that photographs taken as part of a sequential analysis, as with fieldwork, are narrative. He notes that narrative can be the photographic images themselves, or the images in conjunction with field notes or interview text. When I have perceived a pattern emerging in the respondent’s photographs and interview, I have grouped a series of pictures together that reflects the pattern from my perspective (Akeret 2000). Each narrative retains the sequential nature of the pattern as it emerged in the interview. That said, I do not think that retaining photo sequence is es-

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sential for a visual illness narrative, but the approach seemed to work well for my data. I present the images in the order in which the respondents and I discussed them, although we may have discussed other images in between. 9. I have employed structural analysis in a way that may elicit shudders from narrative scholars who prefer a strict application of Gee’s method. For example, my analysis does not note stress, pitch, or idea units. My choice to simplify Gee’s approach is purposeful and stems in part from a wariness to burden readers with a level of analysis that might confuse more than it informs. I fear that adhering closely to Gee’s approach would force me to abandon my participants’ broader stories and the emotional impact of their visual narratives (Riessman 2007). My adaptation follows the lead of others (Mishler 1999; Riessman 2007). Like them, I have further adapted Gee’s approach by including my words and sounds in the presentation to illustrate “the interaction between primary speaker and listener” (Riessman 2007:100) and the dialogical, coproduced nature of the resulting text. 10. However, my analysis includes merely elements of dialogic/performance analysis. I have not analyzed in any depth “the dialogue between speaker and listener(s), investigator and transcript, and text and reader” (Riessman 2007:138). 11. There was one more important influence on my choice of case. The group participants expressed great interest in how Judy had reached the level of acceptance she portrayed in cutting her hair so it no longer hid her surgery scar, and taking a photo of her scar to include in the exhibit. One participant took her own photo of Judy for the project and wrote: “We are all proud of Judy.” Their interest prompted me to choose Judy as a case of focus for my study. 12. It is interesting to me that the three individuals discussed here were all injured around the age of 20. Does incurring an injury at a young age impinge on an ability to reflect on one’s life and talk about it with others? I have found young people to be very reflective about their communities in photovoice projects. Perhaps working successfully with young people to explore living with brain injury using visuals requires working in a group, not one on one. Perhaps the method requires a different question. Instead of asking “What is it like to live with your brain injury?” we might ask “Who are you?” and ask them to create self-portraits using photographs—or drawings, images from magazines, and written text as has proven effective with young people in other contexts (Luttrell 2003).

Chapter 4 1. Backgammon is “a game played on a special board by two people: each has fifteen pieces, which are moved according to the throw of dice” (Webster’s New World College Dictionary Fourth Edition 2007). As with an interview, backgammon involves both chance and skill. 2. Subject D first used the word frustrating when talking about the second photo in our conversation: an image of books and newspapers on his kitchen table. He said that a rehabilitation therapist had encouraged him to read. He explained he couldn’t remember what he had been reading, and he could not tell others about the plot or characters, and “it was getting very frustrating.” I did not

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include the photo of reading material in Subject D’s narrative, however, because I chose to include only photos that concerned food as a topic of frustration and confusion. 3. Our e-mail exchange took place a year and seven months after our photo interview. To remind readers: during the photo interview, Subject D and I spoke a fair amount about our shared experience living and working overseas. We have retained the original content and formatting of his e-mail message here.

Chapter 5 1. Many of Peggi’s photos were metaphors for her feelings or experiences living with brain injury. Feinstein (1982:51) supports Peggi’s statement about interpretation varying over time when she writes, “Herein lies one of the values of metaphor. There is no one right interpretation.” Dondis (1974:69) also supports Peggi’s point: “All visual experience is intensely subject to individual interpretation.” 2. At times, Peggi was reading text from her chapter out loud. 3. During our conversation about the chapter, I learned that Peggi couldn’t speak for the first six months after her injury. I had only seen her as she is now, articulate. Peggi’s boyfriend-partner bought her Pika six months after her injury, so Peggi and Pika could learn to talk together.

Chapter 6 1. When my cofacilitators and I introduced photovoice to the support group, we shared as examples several photographs that Laura Foley, one of the photovoice project cofacilitators, had taken when we worked together.

Chapter 7 1. Auditory functions in the brain also provide opportunities for sharing of emotions by brain injury survivors and for therapeutic work, as seen in work by Gardiner (2008), Sacks (2007), and Nayak et al. (2000) using music with brain injury patients.

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ABI. See Acquired brain injury Acceptance, 15; of life with brain injury, 75, 115, 118, 144–145, 149–150, 183; of brain-injured self, 99, 106–107, 110; stage of, 149–150 Acquired brain injury (ABI), 17–19, 157, 159, 167; causes of, 17, 169; definition of, 1, 17, 169; in support group sample, 115; outpatient services for, 181; use of term, 17, 44, 180 Agency, 122, 139 Akeret, Robert, 49 American Public Health Association, 163 Anosmia. See Loss, of ability to smell Audience(s), 9, 31, 49, 51, 108, 169, 176 Audiencing, 96, 106, 122, 126, 139, 169 Bearing witness, 78, 165 Becker, Gay, 100 Becker, Howard, 44, 49, 182 Berger, John, 147 Berland, Gretchen, 159, 178 Bernard, H. Russell, 37 BIAA. See Brain Injury Association of America

Brain injury: assessment of, 180; biographical disruption of, 148, 150, 177; causes, 1; classification, 180; communication after, 3–5, 32, 65, 154, 180; depression after, 18, 112, 149, 171, 180–181; diagnosis, 17–18, 22; disability from, 42, 84, 95; disclosure of, 45–46, 59, 138, 150, 182; emotion and, 11, 96, 165; financial constraints after, 143, 165; fog of, 44, 45, 86; healing, 93, 96, 103, 135, 149, 160, 171; policy, 15–16, 27, 141, 161, 163; recovery, 28, 174; rehabilitation, 15, 18, 20, 28, 103, 173; research, 15, 21, 29, 34, 47, 139, 163–164; stigma, 22, 180; symptoms, 4, 18, 61, 69–70, 75, 93, 117; therapeutic approaches, 99, 162; from tumor(s), 7, 11, 17, 44, 115–117, 126–127, 171, 181. See also Acquired brain injury; Traumatic brain injury Brain Injury Association of America (BIAA), 15, 19, 167 Brain Injury Association of Massachusetts, 182 Brainline.org, 182 Bruner, Jerome, 117, 122 Burton, C. R., 66

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198 Bury, Michael, 117 CDC. See Centers for Disease Control and Prevention Cameras, disposable, 7, 32–33, 36– 37, 50–51, 58, 88, 120 Centers for Disease Control and Prevention (CDC), 15, 167 Chamberlain, D.J., 151 Chamberlain, Kerry, 31 Chaos, 45, 62, 65–66, 79, 130, 149, 151; emotional, 65; environmental, 65; internal, 65, 108; story, 155; synonyms for, 62 Charmaz, Kathy, 92, 96 Chilingerian, Jon, 24 Chronic condition(s), 24, 28, 85, 130, 148, 150, 158–159, 166, 178 Chronic illness, 5, 50, 92, 148, 150, 165, 178 Collier, John Jr., 177 Confidentiality, 46, 58, 59, 73, 81 Crisp, Ross, 65, 150, 151 Crystallization, 162, 170 Damasio, Antonio, 4 Decade of the Brain, 14 Defense and Veterans Brain Injury Center, 182 Descartes, René, 160 Dialogue, 52, 148, 152, 157–158, 162, 183; patient-provider, 158, 161; researcher-participant, 3 Disability(-ies), 4, 14, 16–18, 23, 95, 150–151, 170–171; hidden, 11; invisible, 20, 66, 84; outcomes, 23; payments, 143; physical, 20, 74–75, 154; rehabilitation, 174– 175; rights, 29; strategies for coping, 116; studies, 21 Dondis, Donis, 154, 184 Emotion, 18, 52, 62, 160. See also Brain injury, emotion and; Healing, emotional Empathy, 21–24, 51, 62, 161, 171.

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See also Patient-provider interaction Ethics, 5, 36, 40, 42. See also Institutional Review Board; Photovoice, ethical guidelines; Values Ethnopoetic, 52 Feldhaus-Weber, Mary, 95, 151, 159 Forté, Linda, 157 Frank, Arthur, 155 Frustration, of providers, 80, 161 Gardner, Howard, 13, 154 Gaskins, Susan, 157 Gazzinaga, Michael, 138 GCS. See Glasgow Coma Scale Gender, 50, 127 Glasgow Coma Scale (GCS), 167, 173 Glover, Annabelle, 65 Grief, 71, 100, 109–113, 116, 148; stages of, 149–152 Harper, Douglas, 148 Headache(s), 18, 27, 40, 42, 85, 116, 127, 141, 179 Healing, 11, 28, 38, 43, 83, 119, 148, 171; early, 38, 40, 93; emotional, 96, 108; grief as, 100; hope for, 99; journey of, 38, 70; opportunities, 93, 165; path, 24, 103; perception of, 154; potential, 65; process, 28, 99, 134, 139, 149, 151; quest, 11, 122, 1123, 141, 155; sources of, 135; tools for, 16. See also Recovery Health care: costs, 164; coverage, 22; institution, 161; goals, 165; organization, 26–28; policy, 11, 13; professionals, 18, 164; providers, 13, 23, 55, 161, 163; setting, 11, 58; system, 13, 21, 26 Health insurance, 11, 15, 20, 22, 27, 37–38, 56, 84, 117, 172; coverage, 37 Health insurers, 15, 16, 103, 139, 164

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Health policy. See Policy Health Resources and Services Administration (HRSA), 15, 167 Hope, 56, 86, 90, 97, 99, 113, 178; sources of, 157 HRSA. See Health Resources and Services Administration Humor, 55–56, 74–75, 182 Identity, 151–152; as brain injury survivor 11; challenge to, 95; formation, 154–156; loss of, 103; narrative of, 48, 116, 120, 123– 140; work, 154 Illness experience, 23, 24, 130, 131, 172, 176 Institute of Medicine (IOM), 1, 23, 28, 167 Institutional Review Board (IRB), 32, 34, 36, 37, 41, 167. See also Ethics; Photovoice, ethical guidelines Instructional design, 32, 34, 89, 172 Invisible, 14, 20, 23, 55, 66, 71, 84, 89, 154, 177 IOM. See Institute of Medicine Isolation, 10, 66, 78, 92–93, 108, 139 Janesick, Valerie, 162 Journey, 38, 70, 86, 113, 128; hero’s, 127, 139 Kessler, David, 149–150 Kübler-Ross, Elisabeth, 149–150 Learning: active, 160, 162; influence of emotion and cognition, 160; mutual, 43, 80, 157, 159, 161, 165; new self, 85, 90, 107, 152, 160; tools, 161 LeDoux, Joseph, 159 Life world, 160, 162 Listening, 43, 78, 156, 159, 161, 163; empathetic, 22, 24; to patients, 158, 159, 162, 164; to stories, 156, 159, 162, 164; therapeutic

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value of, 78; tools, 155; unconditional, 78 Lived experience: with brain injury, 9–11, 13, 16, 38, 42, 115, 122, 151, 161–162; with brain tumor, 115; with chronic illness, 6, 92; definition of, 6, 172; perspective on, 42; researching, 6, 29, 37, 165, 178; sharing of, 162; study of, 179; with traumatic brain injury, 16, 115; understanding of, 9, 32, 47, 83 Loss, 71, 78, 99, 107, 113, 116; of ability to smell, 70; of ability to taste, 55, 70–71, 75, 77; of career, 103, 126, 128; of consciousness, 170; of control, 66; dealing with, 119, 127, 149; feelings of, 55, 100, 107, 150, 152; of function, 2; of identity, 103, 126; perspective on, 148; of relationships, 77, 150; of self, 95, 107–198, 150; of short-term memory, 70, 116; of status, 103. See also Grief March, James, 25–28 Massachusetts Rehabilitation Commission, 19, 41, 164 MassHealth, 117, 143 Mattingly, Cheryl, 154 Meaning: communication of, 86, 152, 154; creation of, 48, 79, 109, 135, 152, 171; existential, 108, 148, 171; in life, 6, 109, 123, 141, 148; in photographs, 46, 49; search for, 93, 141, 150; sources of, 135–136. See also Audiences; Chaos; Illness experience; Metaphors; Phenomenology Medicaid, 20, 22, 164, 172 Medicare, 20, 22, 164, 172 Merleau-Ponty, Maurice, 83 Metaphor(s), 8, 14, 39, 86, 102, 108, 133, 184; visual, 7, 86, 160 Microsmia, 70, 173. See also Loss, of ability to taste Mild TBI. See Traumatic brain injury

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200 Mishler, Elliot G., 90, 140 Mohr, Jean, 147 Narrative, 33, 42, 44, 45, 47–48, 51; analysis, 9, 46–47, 151, 163, 173; captions, 45, 51, 118, 120, 143, 162, 182; co-creation of, 48, 107– 108; of confusion and frustration, 62–78; of darkness and light, 89– 107;data, 46, 52, 162; discourse, 139; first-person, 177; forms of, 47–48, 173; of identity, 48, 123– 140, 141; illness, 9, 47–48; inquiry, 161, 165; interviewing, 46; personal, 45, 138; photos as, 44, 182; of resistance, 139; suppression of, 130–131; theme, 122; typology, 156–157. See also Visual illness narrative National Head Injury Foundation, 15 National Institute on Disability and Rehabilitation Research, 15 National Institutes of Health (NIH), 15, 167 NIH. See National Institutes of Health Nochi, Masahiro, 95, 116 Noise, sensitivity to, 55, 84, 85, 93, 170, 179 Organizational behavior, 10, 25–26, 28 PAR. See Participatory action research Participatory action research (PAR), 43, 89, 167, 173, 181 Patient-centered care, 26, 27, 159, 163 Patient-provider interaction, 80, 159– 161, 163. See also Dialogue Patient’s perspective, 10, 13, 24, 28, 29 Personal snapshots, 7, 37, 40, 45 Person-centered: care, 1, 13, 23–24, 28, 158, 173, 177; planning, 23 Person-centeredness, 23

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Phenomenology, 174, 179 Photo-elicitation, 6, 48, 51, 148, 161, 174, 177, 179 Photography, 5, 34, 177–178 Photovoice: adapting, 41; as altruism, 111; benefits, 11; cofacilitators, 41–44, 89, 116, 157, 184; communication and, 164; community projects using, 181, 183; definition of, 6, 174; discussions, 6, 27, 96, 107, 115– 116, 118, 124; ethical guidelines, 35–36; group project, 27, 40–46, 115–116, 120, 179; interviews, 46–47; methodological decisions, 40–46; outreach, 51, 109, 110, 119, 164; participants, 46, 50–51, 110, 115, 116; path, 32–33; pilot study, 32; tasks, 6, 33, 164, 181. See also Cameras, disposable; Ethics; Institutional Review Board; Participatory action research Photovoice exhibit, 113, 122, 138, 143, 154, 182; websites, 182 Polanyi, Michael, 160 Policy, 27, 13, 15, 27, 141, 161 Posttraumatic stress disorder (PTSD), 109, 167, 179, 189 Power, 5, 39, 43, 44, 79, 159, 173, 178; and control, 43, 44, 173; dynamics, 39; empowerment, 122; powerless, 22, 150, 163 Prigatano, George, 5, 66, 134, 135, 155, 159, 171 Primary care physician, 117 Protocol: pilot, 32, 34, 36, 38; ethical issues, 36; informed consent, 10, 34–36, 38, 56–58, 181; permission, 35, 36, 45, 59, 62, 90, 123; safety, 34, 35. See also Institutional Review Board; Photovoice; Values PTSD. See Posttraumatic stress disorder Quality of care, 10, 13, 21–24, 28–

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29; patient’s perspective of, 24, 28–29 Quality of life, 24–26, 29 Radley, Alan, 31, 84, 161 Ranchos Los Amigos Cognitive Levels of Functioning Scale, 34, 36, 174 Rankin, Theresa, 182 Recovery, 174; addressing self in, 151; facilitators and barriers, 36, 41, 164; long-term, 16, 38; payer and provider perception(s) of, 11, 22; potential for, 1, 19; questioning of term, 43, 110. See also Healing Reflexivity, 52, 61, 88, 122, 174 Rehabilitation, 21, 174; acute, 24, 169; challenges to, 21, 22, 24, 28; costs, 20; from brain injury, 1, 18– 19; hospital(s), 7, 15, 25, 34, 111, 163; limits on, 20, 21, 103; model(s), 19, 24; needs, 16, 19; outcomes, 103, 165; postacute, 19, 121, 174. See also Health insurance; Health insurers; Patient’s perspective; Policy Reker, Gary, 109 Relationships: interpersonal, 65–66, 93, 139, 150–151, 165; patientprovider, 24–25, 158, 161; participant-researcher, 148; sustaining, 77. See also Loss Restak, Richard, 13 Riessman, Catherine Kohler, 31, 33, 46 Roser, Matthew, 138 Self, 175; dichotomy of, 10, 83, 85, 89, 99, 100; discovery of, 11, 127, 136, 140; new self, 10, 84, 88–89, 95–97, 103, 107–108, 110–111, 113, 135, 152, 153, 155–157; old self, 10, 85–86, 89–90, 96–97, 103, 107–111, 148–150, 152–153, 155–157. See also Identity; Learning; Loss

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Selves: ideal, 150; lost, 93; multiplicity of, 141, 152–154, 156–157, 175; theory of, 11. See also Self Shell shock, 14 Sherry, Mark, 17, 180 Simon, Herbert, 25–28, 160 Sontag, Susan, 147 Star quality, 25, 28, 158–159 Statewide Head Injury Program (SHIP), 41, 164, 167 Stories: consistency in, 127; of the deeply ill, 155; of life, 95; models of, 153, 166; participants’, 9; in progress, 148; of transformation, 122; visual, 109. See also Listening; Narrative; Story; Storytelling; Visual illness narrative Story: analysis approaches, 48, 173, 175; context, 140; and image, 49; logical sequence in, 139; of lived experience, 162–163; of participant(s), 56, 61, 71, 78, 122, 143–144; reconstruction of, 154; as research, 139, 155, 162–163; in support group setting, 27, 43, 116; in therapeutic setting, 22, 159; typology of, 155–156. See also Listening; Stories; Storytelling Storytelling, 31, 140, 142, 162, 178. See also Listening; Narrative; Stories; Story Support group(s), 40–43, 85–86, 95– 97, 115–117, 148, 164–165, 184; sample, 6–7, 19 TBIMS. See Traumatic Brain Injury Model Systems Theme(s), 175; choices of, 49; darkness and light as, 89; emergent, 9, 95; food as, 56; of photos, 7, 8, 113, 120; in photovoice exhibit, 42, 45; of visual illness narratives, 47, 122, 126, 173. See also Visual illness narrative

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202 Therapist burnout, 80 Time: for cognitive processing, 41; in clinical setting, 28, 78, 130, 162; pressure, 21, 25, 26; since injury, 50, 52, 150; to grieve, 100, 111; to heal, 113; to reflect, 35, 86, 179 Traumatic brain injury (TBI), 3, 13, 16–17, 44, 109, 115, 167, 175; causes, 1, 4; costs, 4, 18, 20–21, 164; epidemiology, 4; mild, 9, 11, 16, 21, 50, 52, 83–84, 173, 179, 180; problems with diagnosis, 14, 16, 17, 20–22; stigma, 22, 180; in war, 3, 14, 180. See also Acquired brain injury; Brain injury Traumatic Brain Injury Act, 15

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Traumatic Brain Injury Model Systems (TBIMS), 15 Universal plots, 11, 122 Values, 23, 41, 55 Visual diaries, 178 Visual illness narrative, 9, 11, 47–48, 108, 123, 141, 148–150, 156–158, 161, 176. See also Narrative; Stories; Story; Storytelling; Themes Visual methods, 5, 32, 107, 109, 151, 160, 165; participatory, 80, 141 Voice, 57, 67, 117, 140, 169, 182 Webster, Barbara, 40, 43–44

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About the Book

Although millions of people are affected each year by brain injuries, what it is like to live with these injuries is often misunderstood. Laura Lorenz delves into the experience of acquired brain injury (ABI) survivors to reveal how they make sense of their changed circumstances—and how social policies and medical expectations can enhance, or detract from, their quality of life. As she traces individual journeys from diagnosis through rehabilitation, Lorenz evokes the reality of living with brain injury. She also tackles the systemic problems undercutting the quality of current medical and social support. Moving beyond brain injury, her work encourages a fresh approach to the patient-provider relationship for people with a wide range of disabilities. Laura S. Lorenz holds a joint appointment at the Heller School for Social Policy and Management at Brandeis University: as senior research associate in the Institute for Behavioral Health and as program manager for Executive Education, a continuing education program that provides leadership training in health policy and management for rising clinical leaders.

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