Tales from Inside the Iron Lung (And How I Got Out of It) [Reprint 2016 ed.] 9781512809329

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Tales from Inside the Iron Lung

Life is not meant to be easy, my child; but take courage: it can be delightful. —Shaw: Back to Methuselah

Tales from Inside the Iron Lung And How I Got Out of It Regina Woods With a Foreword by David E. Rogers, M.D.

University of Pennsylvania Press Philadelphia

Copyright © 1994 by Regina Woods All rights reserved Printed in the United States of America Library of Congress Cataloging-in-Publication Data Woods, Regina Tales from inside the iron lung : and how I got out of it / Regina Woods ; with a foreword by David E. Rogers, p. cm. ISBN 0-8122-1506-0 ι. Woods, Regina—Health. 2. Poliomyelitis—Patients—Kentucky— Biography. 3. Iron lung. I. Tide. [DNLM: ι. Woods, Regina. 2. Poliomyelitis—personal narratives. WC 555 W896t 1994·] RC181.U6K48 1994 362. ι' 96835' 0092—dc20 [B]

DNLM/DLC for Library of Congress

93-47694 CIP

To all those who made this book possible by being a part of my life. To that very special person who looked beyond my weaknesses and gave so freely of his own monumental strength and energy to help bring me beyond surviving to living; beyond despair to hope; beyond sadness to joy. Without his love, patience, understanding, and persistence, there would have been no book and, quite possibly, no me. To my dear friend, my long-time confidant, and my special inspiration: David E. Rogers, M.D.

Contents

List of Illustrations

ix

Foreword, David Ε. Rogers, M.D.

xi

To the Reader: Beyond Anger

XV

I.

A Time Lost Forever

2.

Breathing Better—For a Time

IO

3·

Another City, Another Hospital

16

I Get Wheels

23

5·

Control

29

6.

Life in Intensive Care

38

7·

Mama

42

8.

Heroes

47

9·

Learning

52

Dying

55

II.

I Decide to Live

59

12.

The Card

64

Ι3·

Dreams

67

Ι4·

Church

71

15 ·

Post-Polio Syndrome

75

16.

People

8i

Ι7·

Doing and Being

86

ι8.

Caregivers

9i

Ι9·

Faith Healing

95

4·

ΙΟ.

I

viii

Contents

20. Small Battles

99

21. Family

103

22. Summer

108

23. Mike

πι

24. The Secret Self

118

Afterword, Jennifer L. Howse, Ph.D. Appendix: About Poliomyelitis, David E. Rogers, M.D.

121 123

Illustrations

Illustrations follow page 126 ι. Regina before polio, 1952. 2. Regina before polio, 1952. 3. Regina after two years of changes, 1954. 4. Dr. David E. Rogers, mid-1960s. 5. Regina on her first independently operated phone, 1963. 6. Regina with her favorite typewriter, 1964. 7. Regina at her niece's graduation, 1970. 8. Arriving at the Medical College of Georgia, 1983. 9. Leaving the Medical College of Georgia, 1983. 10. Visiting the State Capitol with Senator Karem, 1986. п. Dr. Rogers, 1993. 12. Dr. Judah L. Skolnick, 1993. 13. Regina's family, 1993.

Foreword David Ε. Rogers, M.D.

This is an unusual book written by a remarkable woman with a very different view of the world. For nearly three-fourths of her life, Regina Woods has been almost totally paralyzed from the neck down. Unable to breathe without mechanical assistance, she has been completely dependent on others for help with all the simple activities of daily living that come so automatically as part of life's blessings for most of us. Regina can think, she can dream, she can smile or cry, she can talk, and she can observe. With the aid of a supported leather sling, she can make halting partial use of some fingers of her right hand, but she cannot walk, she cannot sit unassisted, she cannot move from one position to another, she cannot feed herself, she cannot comb her hair, she cannot scratch an itch on the end of her nose. It was not always so for Regina. In the fall of 1952 our country was hit with one of the worst of the yearly summer/fall polio epidemics of the century. Mercifully it was also the last of those terrifying visitations of disease of children before the wonderful Salk and Sabin vaccines made it a disease of the past for most Americans. Regina, a vigorous thirteen-yearold growing up in the small town of Lyons Station, Kentucky, about fifty miles from Louisville, was severely stricken with this dreadful nervedestroying infection. Her illness, which was often life-threatening, required fourteen months of initial hospitalization, most of the time spent within the Emerson respirator—the monstrous, tank-like, full-body iron lung. This was followed by a long period in the rehabilitation center far from Kentucky in Houston, Texas, before she was able to return to her own home, which could never again be the same. Regina's family was of modest means. Her father, aged fifty-three at the time of Regina's illness, had been a railroad worker, but was then a woodworker making tables and chairs. He had only a sixth-grade education and a very modest income. Her mother, some six years younger, had Dr. Rogers is Walsh McDermott University Professor of Medicine, Cornell University Medical College, 1300 York Avenue, New York, NY 10021

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Foreword

come from a large farm family and been educated through the eighth grade; she had remained vigorously interested in furthering her education through books. They married in 1925 and had three children—Regina and her two older sisters. In 1952 Lois, twelve years Regina's senior, was married and had four children of her own; Gerry, five years older than Regina, still lived at home. For the entire family, Regina's illness required a series of profound readjustments. Because of the complexities of Regina's needs for care, the family moved back to Louisville into a house next door to her married sister. Here her mother and sister Gerry undertook most of the task of caring for this helpless young lady who before her polio, by her characterization, was strong, athletic, and used to like to hang by her knees from the limb of a tree, play ball with the boys, and dream about being a Marine, or a lady wresder or even a hobo. During the ensuing years, Regina's mother has died, but her sister Gerry has remained at home and continues her caregiving role. This book gives glimpses of the growth from adolescence to woman post-polio. It suggests, although it does not spell out, the shaping of a philosophy, the development of a view of the world, its wonders, its frustrations, its joys, its heartaches, as seen by an individual unable to participate, except through her senses, with that world. It is to me a happy book—full of common sense, and wry humor, directed largely at herself but also at some of the ways in which most of us behave. It has occasional flares of irritation about the insensitivity of others toward someone whose dependence is so total. But it is, in the main, a message of courage, of wisdom, of patience and of a refreshing sense of joy about some of the tiny miracles of life or human interactions lost to most of us who move through our days so swifdy and so unseeingly. I came to know Regina first as her doctor. In the early 1960s she was admitted to my medical service at Vanderbilt University Hospital in lifethreatening metabolic imbalance. The reasons for her problems were easy to understand. Because of her dependence on mechanical assistance to breathe—either in an iron lung or in a tighdy fitted armor-like chest respirator—she was unable to make the automatic changes in breathing depth or rate that for most of us automatically, minutely, and precisely control our internal chemical balance and keep it within exquisitely narrow parameters. Thus a cold, or an episode of vomiting, or the unwitting setting of her breathing device too high or too low could swiftly change her internal milieu, making her system too acidotic or too alkalotic, with potentially disastrous consequences.

Foreword

xiii

Polio was a disease with which I had more familiarity than I wanted, and the advent of the Salk and Sabin vaccines had been one of the glorious blessings of my professional career. For many of the young resident physicians at Vanderbilt, Regina was a curiosity—a survivor of a disease they had never seen. Indeed, there were only a few who had been as badly crippled as Regina who were still alive in the 1960s. Particularly poignant was the fact that the physicians who had known and managed polio centers, or who knew respirator care, and the mechanics and engineers who had devoted their lives to the maintenance of such equipment had also largely disappeared from the scene. Regina was a tragic anachronism—a reminder of an age past. During the next six to seven years, I grew to know this wonderful young woman well. Her fragility and/or mishaps with her breathing equipment required recurrent Vanderbilt admissions, generally made much worse by the long ambulance ride from Louisville. Recognizing her own enormous common sense and knowledge about her condition, I encouraged her to take increasing responsibility for her own care so that she could tell her physicians and nurses what to do and what to watch for. This, coupled with the development of a splendid relationship with some fine sensitive physicians in her home territory, has resulted in a marked drop in her need to be hospitalized and in her doing remarkably well over a full twenty-five-year period. In 19681 left Vanderbilt to assume other duties in the academic world, but Regina and I have continued to stay in close touch through her amusing, perceptive, painfully typed letters and my much easier dictated responses. And what a remarkable correspondence it has been. Despite her limited educational background—and she will tell you about that in her story—her descriptions of what it felt like for a shy reserved girl to become totally dependent on others for aid with bathing, dressing, all her bodily functions; of what it felt like to leave home for her first visit to a shopping mall after being confined to a rigid shell by her disease for thirty years; of what her family has meant to her; of what it felt like to die on one occasion (she thought its wonders grossly overstated)—all these and other observations said powerful things to me and to others with whom I have shared some of her correspondence. About six years ago Regina began to develop progressive loss of her minimal residual muscle strength. We have recently recognized that this is sometimes the lot of patients who have had polio in the remote past. Because she felt despondent about this turn of events, I suggested she refocus her energies and begin to take some of the observations she had been

xiv

Foreword

making to me about life and people and weave them into a book. Not a serious book about polio, but simply a series of vignettes of her own thinking about life and its happenings that seem so different and so refreshing. This simple and gende volume is the result of that effort now almost five years abuilding. It is a book that has a lot to say to those of us more physically fortunate. It also has some remarkable things to say about the invincible quality of the human spirit that should give the reader a good feeling about humanness. I think you will learn much and be moved by this book. King Henry V, addressing his followers, speaks to Regina and to all who live in the realm of despotic disease: "'Tis true that we are in great danger; / The greater therefore should our courage be." Here you will find strength of courage and the wisdom of patience.

To the Reader Beyond Anger

Before you really get into this book, there are a couple of things I would like to share with you, as a kind of explanation, not an apology. As my manuscript neared completion, it was reviewed by several friendly critics, one of whom said, "It is most remarkable in its complete lack of bitterness and anger." But others saw this as a fault, saying that its very lack of anger resulted in a failure to grip the reader emotionally. In a sense they were right. There is a lack of emotion, but there is a very good reason for this, and I would like to share that reason with you, the reader, before you go any further. When I became a quadriplegic in need of mechanical ventilation, I was aware of only the physical changes and challenges that were placed before me. I honestly believed that the only real changes would be physical and that the rest of me—my mental, emotional, spiritual character— would be untouched by the enormous bodily changes that had taken place with such suddenness and finality. I was soon to learn just how well integrated we really are, as every part of my being was touched and every emotion was forever changed. There were many times when I would become emotionally upset and resort to tears as a release, only to find that release brought with it a physical price tag in the form of severe ache, nausea, and increased secretions, which meant a diminished breathing capacity and a whole host of unwelcome side effects, none of which I cared to entertain for one minute longer than absolutely necessary. Thus I had to choose whether I wanted to be as emotional as I would like to be, or whether I would like to breathe comfortably. I often chose the latter option and have spent much of my life teaching myself that emotion should not be allowed to take control of my life. There have been and surely will be lapses for which I pay a price. And there are many, many times when I want desperately simply to give way to everything I feel and let emotion have its due. But I can't. This is not something that I like, but it is something that I must deal with as best I can.

xvi

To the Reader: Beyond Anger

When I am angry, I cannot throw something across the room. When I wish to express my affection for people, I cannot give them a hug, because I cannot reach out to them physically. When I am in need of a hug, others dare not meet that need for fear of leaving me in disarray, probably with my ventilator tube protruding from some unlikely spot. Choices, choices! They are always there and, for better or for worse, I have made mine and have worked hard at implementing them. In fact, as I enumerated these losses, I felt an overwhelming sense of sadness. Maybe I would have felt better if I had gone outside and had a real good cry, but, once again, I chose to breathe. As for a lack of anger, I can't help it if I am a happy, fairly welladjusted person and I offer no apologies for this welcome circumstance. Maybe fear and anxiety are more compelling than love and happiness in the world of today, but there must be a place for someone who simply wishes to write a happy little book that includes some unhappy events but says that the occasional unhappy events that come to all of us need not bring permanent unhappiness. I have learned how to confront reality and accept its challenges. That is the kind of thing I hope you will find in these pages, and my earnest prayer is that it might help in some small way to keep your unhappy events from bringing you lasting unhappiness. HAPPY READING! Regina Woods

ι. A Time Lost Forever

It sometimes seems that much of my life has been spent in somebody's intensive care unit, or in some corner of a new and strange hospital, often in another city, where I know no one. No matter where these units may be, they are remarkably alike and, after so many admissions, they become familiar, even friendly turf. It was not always this way. There was a time when I had never heard of or thought of ICUs, not only because they had not come into existence but because I had no reason to think anything other than happy thoughts. There are faraway, almost dreamlike memories of a very happy, very healthy childhood lived in an extremely small rural community about fifty miles from the "big city" of Louisville. I lived with my parents and two older sisters, Lois and Gerry. By the fall of 1952, our lives had setded into a wonderfully happy pattern. Lois had moved to the city and married Allen, and they had four children. Gerry had graduated from high school the previous spring and had not quite decided what to do with her immediate future. Daddy worked away from our little town and was forced to leave very early in the morning and return very late in the evening. Mama, who was the person in charge, stayed busy, devoting her time and energy to her family. I was only weeks away from my fourteenth birthday and, having visited and played away the summer, was now busy making plans to begin my sophomore year of high school. Because I had started school as soon as possible and had been allowed to forgo one grade, I was younger than most of the kids in my class. I was also immature for my age, and these factors seemed to combine to make me a bit of a loner at school. I really didn't mind, because I was quite serious about my studies and felt that I had no time to waste. For as long as I can remember, there has been a feeling somewhere deep inside me that my time for doing a thing, whatever it might be, was limited. Because of that feeling, it didn't bother me not to spend much of my time in social activity, because there was a kind of compulsion to learn as much as possible, as fast as possible. Having taken time out to have

2

A Time Lost Forever

polio, I was then and remain very grateful that correspondence courses were available. But I do not believe that is the best way to acquire an education, and I was very pleased that I had enough traditional education to develop good study habits and thereby maximize the results of my correspondence studies. Other areas of my life have been affected by this hurried feeling as well. When I engage in a "project," there is usually a rush to complete it, and this rush can result in a lack of quality. Whether this should rightfully be attributed to an inner feeling or just a simple lack of patience can be debated. It is something that I can't explain. I only know that it is there and that it is a source of inner conflict. Away from school, I spent much of my time hanging upside down from my favorite tree limb, as I contemplated the wonders of nature. I was strong, athletic, had not a care in the world, and, to my delight, had outgrown both my sisters. Everything seemed just about perfect, and I was extremely happy. My future was not planned and I drifted along with the idea that I might someday be a Marine or a lady wresder. Or maybe even a hobo. I had lots of time to decide. Summer went away, school started, and all was right with the world. On a beautiful September evening, Gerry and I came out of the grocery and saw Daddy walking up the road ahead of us. We started to run, but a pain that had suddenly appeared in my lower back stopped me from running and we called for him to wait for us. That seemed very unusual to me because, as a rule, nothing stopped me and my only illnesses had been the usual childhood annoyances. The following morning I got up with an excruciating headache, so severe that I grabbed the top of my head, thinking it might literally blow apart. It felt as though it might. The pain in my back was worse and I was having sharp pains in the back of my neck. I could not remember ever feeling so bad. I not only felt terrible physically but seemed unable to think clearly. It was as though I were looking through a haze and seeing myself attempting to do things that my body would not do. My actions seemed forced and unnatural. My mother saw that something was radically wrong and said that I should not go to school. I had always considered it criminal to miss school, but I also knew the foolishness of openly defying Mama. However, she was a sucker for my never-ending deals, so after the proper amount of haggling, we agreed that, if I ate my breakfast, I could go to school. I picked and played at my breakfast until I heard the bus, grabbed my books, and was out the door.

A Time Lost Forever

j

It was a miserable day! I went to my first class, which was history, and found it difficult to sit up and listen and impossible to concentrate. My head, neck, and back had sharp pains shooting through them, and each effort to move seemed to bring new and terrible pains. Still trying to listen, I laid my head on my desk. The teacher, noticing, asked if I was sick and I told him that I was not. He said, that being the case, I should sit up and pay attention. I no longer cared. I just wished it were possible for me to fall on the floor and die: anything to end the pain that seemed to be engulfing my body, no longer content to stay in my head, neck, and back but now also making its way into my legs and arms. There seemed to be no position that brought relief, and it was getting worse by the minute. I wondered when it would end and what would be left of me. My second class was home economics, so I made my way to that room. Because I rode the bus and the school was fifteen miles from home, my only option was to remain at school. Once in the home ec room, I made no effort to pretend wellness any longer but went to the back of the room and stretched out on a cabinet, thinking the hard, flat surface might bring some small amount of relief. Nothing eased the pain, and now nausea was becoming a problem that demanded attention. There was some ginger ale in the home ec room that had been left over from a banquet, so I bought a large botde of that and spent my afternoon lying on the counter nursing a glass of ginger ale, while the girls who came into the room for their classes took turns massaging my back and neck, which were now, in addition to the terrible pain, starting to feel very stiff and strange. When the school day, at last, came to a merciful end, I slumped into my seat on the school bus, and again the other students massaged my neck as we made our way home. It was an extremely long fifteen miles on that September afternoon. When I got home Mama had gone to a meeting and there was no one there, so I went straight to bed, in so much pain that I didn't care that I was alone and didn't care what happened to me. As soon as Mama got home she called our doctor, who was everything you think of when you conjure up the image of a typical country doctor. He examined me, ordered some castor oil, and called my parents outside to tell them that I had polio. I didn't really care a lot about anything, but I knew about this thing called polio because I had seen March of Dimes programs and I was not stupid. I knew that everyone who had polio went to the hospital, got a brace on one leg, and went home, often leaving the hospital as Howard Keel sang "You'll Never Walk Alone." Something like that would be tragic

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A Time Lost Forever

for me, because at thirteen I was sure of two things : God loved me and I had good-looking legs! I couldn't believe that something would come along and mess up my legs. Not my legs. Of course, I didn't know and certainly didn't care what those funny-looking, round, yellow things on the March of Dimes canisters were. They surely were not something used to treat crooked legs. But maybe they were, since everyone who had polio had a crooked leg. One of our closest friends was certain that, rather than polio, I had a "virus" like that experienced by his daughter, who was a classmate of mine. Because of his doubt and the fact that no one wanted to believe the diagnosis of polio, another doctor was called the next evening. He said it was not polio, but was just a "virus." That was what everyone wanted to hear, but the pain, oh the pain. It was a warm night not unlike many others that I had always enjoyed, but on that night I felt as though I were on fire. Every inch of my body ached and the only relief that I could find was in walking and walking. As the night wore on, I reached the point where I could no longer walk alone and, when that happened, different members of my family took turns walking with me. They walked, one on either side of me, while I placed my arms around their shoulders for support. I would walk as long as I could and then fall into the bed exhausted and stay there, until I gained enough energy to walk once more. The next day, with the pain still severe and showing no signs of improvement, I was facing new problems. My bladder would not empty, my breathing was labored, and movement was becoming more difficult. Even though all these things were new to me and I was becoming terrified, I did not want to go to the hospital. I decided that, if I got out of bed and walked across the room, it would prove that, whatever the problem, it was clearly not serious enough to justify taking me to the hospital. I didn't make that walk across the room, but I did get turned and moved about halfway off the bed. That was not good enough, and things were hurriedly made ready to take me to the hospital in Louisville. When we had traveled about fifteen miles, I found that I could not turn from my back to my stomach. Whatever was happening was happening fast, and I was becoming more frightened with each mile we traveled. The hospital activity was all new to me and I just didn't feel like caring. Examination in the emergency room found that my reflexes were all but gone. I was taken to a treatment room that was hotter than any place I had ever been. It seemed as though I was there for hours, as my breathing became more and more difficult. I asked my first question since

A Time Lost Forever

5

entering the hospital, which was how long I would be in that room, but they thought I was asking how long I would be in the hospital. It didn't matter; nothing mattered. Eventually I was taken to a different room, where a chest shell was strapped onto me and I was covered with cold towels. My breathing was labored, I could move nothing, and I had no idea what was happening to me. I was surrounded by strangers who kept telling me to "try," a word that I came to hate. I didn't understand, because nothing moved and I didn't know how to try to breathe. I had always just done it. I was told, under these conditions, that I needed to relax! After four of these bewildering days, the doctor told me that my breathing needed more support than the chest shell could provide, and for that reason he was going to place me in an iron lung, whatever that was supposed to be. They rolled one in and I knew what the yellow thing on the canisters had been. I thought it was very strange looking, especially since there was no apparent way to get into it. I did ask the doctor to leave the chest shell in place while they were transferring me, because, even though it was uncomfortable, I was certain it must be better than nothing. The doctor agreed to do as I had requested, but, before I realized what was happening, the chest shell was off and I was in the huge cylinder with only my head sticking out. A few adjustments were quickly made and it was closed. To my amazement, the cylinder had rolled open and it had not been necessary to stuff me through the small opening in the end. Such comfort! I was no longer struggling to breathe and the whole thing seemed simply wonderful. So wonderful that I cannot remember a night before, or since, of such sheer comfort. I did not know that these changes signaled a worsening of my condition and were viewed by my family with great alarm. I was free to concentrate on keeping my legs straight so that I might avoid braces, but I was distracted by the excruciating pain, which had continued unabated for days. I kept someone rubbing me as much as possible. Days stretched into weeks with everything remaining much the same, except that the pain did subside. The only things that moved were my head, my right hand and my toes—something that seemed very important, as we were told that whatever moved on any extremity would be the stopping place of the paralysis. According to this theory, which was wrong, if the toes wiggled, then the legs would be well; if the fingers moved, then the arms would move once more. I was still more concerned about keeping my legs straight than about anything else.

6

A Time Lost Forever

One day I was told that my progress was good enough that it was time for me to try the chest shell once more. I was told that the lung would be pulled open and I would lie on the bed of it while wearing the chest shell. I was filled with anxiety and fear, but everything went very well and I wore the chest shell for two hours, enjoying the freedom of my neck for a while. I was tired at the end of my two-hour venture, but nonetheless elated. Because I was so tired, I asked the nurse if she would remove the shell and close the lung long enough for me to get a few breaths and then open it to make any needed adjustments. She refused and went to get another nurse to help her. Thinking the other nurse might listen, I ran my plea past her. She told me, in no uncertain terms, that she had been doing this for many years and did not need me to tell her how to do her work. The chest shell was removed, every major and minor adjustment was made, and I passed out. When the lung was closed, the work had been finished and so had I. From that day onward, I was filled with fear about leaving the lung. Various ways were tried to get me and those like me out of the lungs that lined the halls like so many yellow caskets, their motionless inhabitants filled with fear and rage. Fear that they would not survive the next attempt to help them and rage that they could do nothing to strike back when the keepers went beyond the bounds of human decency, which they did quite often. We were treated worse than animals, and there were frequent displays of unbelievable ignorance and cruelty, like that of the nurse who cut the bows from some flowers I had received and taped them into the hair of a voung man who, at sixteen, had lost his manhood before having a chance to gain it. Or the nurse who, because she didn't like one of the guys, moved his ham radio, the one thing left to him from his pre-polio life, so that he could not reach it. I realize that this was a time of great ignorance concerning polio, but I have always maintained that, once a person passes out from lack of oxygen, it does not take a genius to know that the respirator has been off too long. Years after these incidents one nurse came by and apologized to me for her involvement. After a litde more than three months of this, I was removed from the iron lung and placed on the bed, not because I was able but because I did not die in the attempt. This was nothing like an advance, only a change in the pattern of torture. Because my breathing was so difficult, I could take very litde nourishment and became more and more fatigued. After a short time I became ill, my blood pressure rose to extreme highs, I had seizures and was returned to the iron lung. Even though I could not see and was only semi-lucid, the nurses did not give up on their efforts to "wean" me

A Time Lost Forever

7

from the lung. As they began their efforts one morning, my sister Lois came in and was told to leave. She replied that she would stay and, if they killed me, she would watch. The nurses were irate and asked my parents to bar her. Instead, my parents went to the administrator and a conference was held to discuss the entire situation, with the result that the doctor placed a large sign on my lung stating that it was not to be opened under any circumstances. This was only one of many instances in which my family, who had practically lived in the hospital, had intervened to protect me. There has never been any doubt in my mind as to why I survived when so many did not. With the seizures continuing and the blood pressure showing no signs of dropping, the doctors approached my parents with a proposal. They said I could not live very much longer in my present state and they would like to give me a new medication in an effort to lower the blood pressure. The kicker was that they needed my parents to sign consent orders, because, they said, it might drop too far, too fast and, with the state of my breathing, they felt that this might kill me. Consent was given, the medicine was administered, and the pressure fell drastically, so drastically that there were times when they could not even get a pressure reading, sending me into a delirium that lasted for weeks. Nothing was real—I saw terribly frightening scenes and responded accordingly. Everyone had to wear white, because any hint of color scared me and black was especially threatening. It was years after these events before I could wear black near my face. Once this acute episode was over, I was removed from the lung and kept on very high levels of medication to control the seizures. The medication turned me into something looking like an animal and acting like a space cadet. I could not think, would start a sentence and then go to sleep, and became very combative and unkind. I grew long dark hair on my arms and legs and my teeth were almost completely covered by my gums. I was not a pretty sight, but no one gave up on me. Eventually the March of Dimes brought in a physician from New York, who concluded that conditions in the hospital were beyond repair and that the only reasonable thing to do was to close the unit and move the few patients who had survived to other hospitals across the country. My family chose Houston, which seemed to be the best choice for me. After fourteen traumatic months of hospitalization in Louisville, I was taken from my room direcdy to the train station, where specially equipped railroad cars waited to take me, along with ten others all in the need of respirators, to Houston. Once I reached the Houston hospital, the doctors immediately put

8

A Time Lost Forever

me back into an iron lung and announced that, while they would try, they probably could do very little for me because of the high levels of medication. Once I was rested, they started decreasing the medication, steadily dropping it until I was left on a very small dosage, bringing about such a dramatic improvement that, when the March of Dimes doctor came to visit us a few weeks later, he expressed the opinion that I had shown greater improvement than anyone else who had made the trip. Whatever the degree of improvement, things were definitely much better. After proper treatment in the hospital, based on a new approach, I was sent to a rehabilitation unit whose purpose was to prepare me for living at home, because institutional life had taught me that my needs and wants were always to be met and that I need not share anything with others. My needs were the center of the universe, and I had become an alien to the considerations that make a family a family. My physical needs had been met. Now it was time to meet psychological needs and teach me that, however different, there could be a life beyond hospital doors. I could learn once more to share in the lives of my family and friends. I could be interested in things that had no medical significance, things that had nothing to do with my day-to-day survival. Outside the institution, there might even be a way to learn to live once more. In the rehab unit we lived in a family atmosphere with one living room, one dining room, one TV, and so on. Doing things together brought back the sense of relationship to others; and the experience was wonderfully helpful to me, although there were times when I did not appreciate it and my behavior would become more cantankerous than sensible. When I was forced to do something different, like take my bath in the tub, I would become very upset, call home, and tell my family that I could not stay there any longer and they must do something to get me home. By the time I got off the phone, I was fine, but I knew my frustration had been transferred to my family, a thousand miles away. Home was now in Louisville, where my family had moved for my benefit. There would be no more country life, no more hanging from tree limbs. Just before I was to leave Houston, one of the doctors came in to talk with me and explained that she was sending an iron lung to my home because I had never gone longer than six weeks at a time without finding it necessary. I considered this a kind of setback and told her that she could send it, but I would not use it. I cried, I fussed, I fumed and, in general, acted like an idiot, but the next morning I apologized and promised to do what

A Time Lost Forever

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she had told me. Now, thirty-five years later, I am ready to ship the lung away, and it is going to be very strange to be without one. It has been my best buddy in many instances and has been a true lifesaver on many occasions. Now, too, I recognize that I was ready to return home emotionally as well as physically. After goodbyes were said and the airplane was fully packed, I was finally, after a total of twenty-one months of hospitalization, on my way home. It was a bittersweet departure, because my treatment had been superb and I had made friends whom I probably would never see again, but I was anxious to get home and see if there were any pieces to be picked up. I returned home dependent on a respirator except for thirty or forty minutes a day. I could move my head, wiggle my toes, move the fingers on my right hand, and swing my right arm with the use of a leather cuff sling from which to suspend it. All those theories and promises about wiggling certain parts of the anatomy had failed. While the only things I could do for myself were write and turn pages, there was the potential, not yet fully developed, for feeding myself, and the hope that one thing would lead to another. I had been given certain basics in learning ways to do things, which could and would be developed with the help of a loving and supportive family. My legs had been kept straight, but that was small comfort, because, like the rest of my body, they were now shriveled and ugly, serving no purpose other than as an extension useful for wearing shoes. The flight home was smooth, although my stomach was filled with butterflies, and the flight surgeon told me that I had done so well that he would like me to be the last one off the plane. After such a long time, I decided it would be possible to tolerate a few more minutes of waiting. I was met with all the love, warmth, and support that anyone could ever hope for and, although none of us knew exactly what to expect from the future, we had clearly dealt triumphandy with a difficult past. It was so very good to be home. So much had happened, and I didn't fully understand what my life would be like, but I did understand that the time of not needing to know about hospitals and the time of thinking only happy thoughts had been lost forever.

2. Breathing Better—For a Time

After three years of home care, a good routine had been established and it seemed that everything was going very well. I continued to work on my high-school studies by correspondence and spent a lot of time listening to music, usually Elvis. Many new friends had been made. But others were no longer with me, because I began to learn, confirmed later through others, that when something so catastrophic occurs most friends, for a variety of reasons, are lost. True, we had moved, and there is no doubt that the move away from the country was a contributing factor, but I often heard the phrases "I just can't take it" or "I'd rather remember her the way she was." For a long time I really resented these phrases and became very angry when I heard them, because I felt the latter sounded as though I had died, when I felt very much alive, and I didn't understand how others could have the gall to talk about what they could "take" when I had to "take it" every day of my life. As time went by and I mellowed just a bit, I began to see and accept that there were those who simply could not deal with the radical changes that had taken control of my life and made me into a person much different from the one they had known. A dear minister friend, who had known me for years and who probably had more influence on my life at that point than anyone else outside my immediate family, gave me no chance to back away from life and hide inside my house. I never sat down and tried to evaluate the impact he had on my life, but, on one occasion when I was hospitalized and being interviewed for rounds, I was asked about specific people who had influenced my way of life. After my response, the professor who had asked the question said, 'Then this man has helped you more than any of your doctors." I had never thought about it that way, but I certainly could not argue with his statement. My doctors had kept me alive, but this friend had helped me to live. He brought young people who were my age over to visit and have meetings. Because they had never known me any other way, they were very accepting, and new and lasting friendships were forged. Some of the young people who became my new friends were dating at the time

Breathing Better—For a Time

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we met, and they are now grandparents. I felt very unsure of myself and the reactions of others, but such understanding friends made it easy for me to feel at ease with them and to start getting out whenever that was possible. My minister friend never insisted that I do any specific thing but told me repeatedly that he would help me do whatever I wanted to do. I can be led a long way, but if I perceive that I am being pushed my reaction is to dig in and push back. Pushing back never became necessary. Late in my third year at home, a team from the rehabilitation center at Vanderbilt University Hospital in Nashville visited Louisville to determine which of the post-polios (as we came to be called and call ourselves) living in Louisville might benefit from treatment at Vanderbilt. I was chosen as one of those who should receive further rehabilitation. That was fine with me, until the March of Dimes director called to say that our flight would leave the week before Christmas. My immediate reaction was that I was unsure of what they could or would do for me, but I was sure that I had spent enough time away from home and could not bring myself to be away for another Christmas. I told the director that I would not go. She responded by saying that if she were I, she would be willing to be away from home for one more Christmas in exchange for the promise of future Christmases that I might not have if I did not make the trip. I remained adamant and repeatedly said that I would go nowhere. I shed many tears, because I was torn between what I wanted to do and what I knew I really should do. Once I felt sure that I didn't absolutely have to go and would not be forced to do so against my will, I relaxed and really gave serious thought to all that was involved. Once I did this, I soon changed my mind, called the director, apologized for my actions, and packed. For her part, the director requested the flight for December 26. Of course, it didn't arrive until early January, so I had just enough time to hurriedly take one more credit in order to complete high school. There was no ceremony and not even time for announcements, but I was immensely pleased with the accomplishment. In early January, having had Christmas at home with time to spare, I was off to Vanderbilt for what we hoped would be significant improvement. The medical teams worked on everything, but the most shocking part of their treatment was their approach to eating. I had been accustomed to eating anything I wanted, but they decreed no milk products and no nuts. A friend of mine had given me hickory nuts for Christmas, and because there had not been time to eat them I had taken them with me, only to be forced to give them away. It seemed that all I heard was

12

Breathing Better—For a Time

drink, drink, drink, leading me to tell my resident that if he continued to insist on my drinking so much, I would be forced to give up breathing. He assured me that he knew a number of people who did both. The really intense work was centered around my breathing and working to improve it. For the first time I was introduced to arterial blood gases and their measurement. Before I was ever touched I was given a long explanation of what would be done, and there was so much emphasis on the unpleasant aspects of the procedure that I was sure my chances of dying must be great. To my surprise, I did not die and while the procedure was not something to be done for pleasure, neither was it so terrible that it ever bothered me when it was necessary thereafter. I did appreciate the way things were explained and discussed and, somewhere about this time, I became very interested in what was happening with me medically and began trying to learn everything possible about my situation and then apply this knowledge to gain some control over my care. As medical people came into and went out of my life, I felt there should be some constant, and that constant had to be me. There was some resistance to allowing my participation, but because I was in a teaching hospital there was always a student, intern, resident, or someone else willing to engage in instructive conversation. There were even those rare instances when one of the professors, having no pressing business, would be willing to subject himself to my quizzes. A second-year student worked closely with me on the use of an experimental respirator that was used to strengthen my breathing. Because we spent a lot of time together he was an easy target for my questions but, since he was still a student, if I had doubts about any of his answers, I referred questions to someone further up the line. I was fortunate to have a very good resident who was willing to explain rather than dictate, and as I learned bits and pieces I questioned more and more, finding that each explanation added to what I was learning. Everything learned added a little more control, which they were quite willing to allow me to exercise except on those occasions when my ideas were on a collision course with theirs. When that happened, I was given an explanation rather than an order. As we worked with the experimental respirator, my breathing was strengthened to the point that I could breathe for longer and longer periods of time without assistance of any kind. It was very hard work but extremely rewarding. There was never any thought that I would be able to reach the point where I could breathe all the time without assistance, because the only muscles left with which to breathe were muscles that

Breathing Better—For a Time

13

could be used only when I was awake. This situation brought endless, often heated discussions with my student, who said he feared I would go to sleep, stop breathing, and die. I told him more than once that I thought this was very stupid. (I thought of him years later following an episode in which I went to sleep, stopped breathing, and came close to dying.) Our highest hope for the machine was that it would strengthen my breathing enough so that there would be no risk when the chest shell was removed and that accordingly there would be times when the chest shell could be removed for simple comfort. Any increase in such time would be a big dividend. At the end of three months I had been fitted for a new-sized chest shell and had received therapy of every kind. Most important, through a lot of hard work, directed by very knowledgeable people, my breathing had become strong enough that I could breathe without assistance for a full hour any time I wanted, and quite often could breathe without assistance for two hours. With the maximum results having been achieved from rehabilitation at Vanderbilt, I was ready to return home. I had flown down but would return from Nashville in an ambulance with the driver, a man from the hospital who could take care of my equipment, and Lois, who had come down to return with me after Mama, who had become sick at the depot, had given her hat and ticket to Lois and gone to bed. On Friday I said goodbye to the different shifts and did those things I had always done when leaving a hospital. One of my departing rituals had always been to get a menu and mark everything that looked really bad, as my little gift to the next occupant of my room. On a very bright April morning, filled with sunshine, we got into the ambulance, which was loaded with all the things I had needed and collected for the past three months. As we pulled away I wondered if I would ever see these people again, or, if, like those in Houston, they would come into my life for a brief period, help in a wonderful way, and then disappear. Since Nashville was much closer, I thought maybe we would meet somewhere down the road, but all that was too far away to be concerned about on this bright day. I was going home, and I could breathe better and longer than I had breathed for years! With almost two hundred miles to travel, we knew that the first twenty or thirty miles would be devoted to getting settled into a comfortable groove. Just as we got into that groove, I looked up to see an oncoming car on our side of the highway. I said nothing and only had time to think, "He's going to hit us." And he did! Above the noise of the crunch-

14

Breathing Better—For a Time

ing metal, the only sound I heard was Lois screaming my name. As batteries, boards, poles, everything that I had accumulated flew through the air, I found myself, unable to resist, joining them. I landed on my right side, my head in the seat of my chair, with my legs over the back of the front seat. Because of my position and the fact that several things, including my board, had landed on top of me, I couldn't see anyone. A quick inventory told me that I was breathing, so I decided that the only thing to do was remain calm and hope that someone would come to my rescue before something vital came unglued. I knew Lois had survived, because she was making a grunting sound, but I had no idea what her condition was. Several attempts to talk to her brought no response. I had no idea what had happened to the two men or how long I might be there. After what seemed like an eternity, the back door of the ambulance opened and I heard the driver say, "My God, we've killed her." Well, not quite. The man from the hospital climbed in and pulled me into my chair, and when he turned me over, the middle part of my chest shell, which was made of hard rubber and metal, just fell out of the shell. So great had been the impact that this part of the shell, which held the hose that allowed me to breathe, had pulled away and had to be held in place. We regrouped and found that Lois and the two men had leg injuries, while I had cuts, bruises, a twisted knee, two sprained ankles, and a head bumpy and sore. The state troopers came and announced that the man who had hit us was drunk and was from Louisville. As I was being transferred to another ambulance, the man who had hit us was weaving around in the highway mumbling something about helping. I felt he had done more than enough. Back in the hospital, I spent a long, difficult afternoon in the radiology department. Once everything that hurt, which was all of my body, had been thoroughly examined, I was returned to my old room, where my roommate, who thought I was back home by then, was surprised to put it mildly. The nurses, not knowing I would be back, had told her that she was getting a new roommate and that it was a guy. I think she was very disappointed when she saw my familiar face. I had missed lunch and the evening meal was absolutely terrible. Lesson learned. I spent much of the night crying from pain. On Sunday the director came by to see how I was and advised me to rest as much as possible over the weekend. I really didn't have to be told that. On Monday, not knowing how long I would stay, Lois returned home. The student who had worked with me on the experimental machine

Breathing Better—For a Time

15

dropped by to say he was sorry to hear about the wreck, but quickly added that he wanted to make a film of the machine and there was no one else there to do it. Always interested in a movie career I was of course eager to help. We went downstairs to make the film. Although I had not tested my breathing, I had no reason to think that it was any different from what it had been before the accident. I sent my machine one way while I took another route and, before we got back together, I was having a great deal of difficulty breathing and my color was becoming bad. Devoted as we were to the machine, we made the film, and only after we were sure it had been done right did I go back upstairs to report what had happened. We discovered that, for some reason that was never obvious, I could not breathe unassisted for more than a few minutes without real distress. Whether this disappointing turn of events had been caused by the impact of the car, the trauma, or something else we never knew. With no treatment for an unknown problem, I returned home a few days later, my hard work down the drain, my dream of more unassisted breathing time shattered. With time and effort I eventually reached the point where I could once again breathe for thirty or forty minutes, but my two-hour and even one-hour stretches were gone, never to be restored.

3· Another City, Another Hospital

At the beginning of 19831 had a viral infection, which was no big deal but did force me to spend a few days in the iron lung. At the end of three or four days I was feeling fine and was removed from the lung. To my surprise, when the chest shell was put into place I could not breathe well and had to be returned to the lung. Although disappointing, this situation did not seem to be anything major because there had been other times when my first outing, after spending a few days in the lung, did not go well. It had always been a simple matter of try, try again. I assumed this time would be no different. The next day we regrouped and tried once more. Again I could not tolerate the chest shell and my efforts before returning to the lung left me very fatigued. This second failure was very upsetting because I had no idea what could be happening to my breathing. I had recently obtained a new chest shell, so my first thought was that something must be wrong with my equipment. I called the equipment pool at the Medical College of Georgia in Augusta to talk to Carlton, who was not only the pool director but a kind of folk hero to post-polio patients who used respirators. Carlton was my age, and I had always believed that polio had affected his life every bit as much as it had mine. For years he had worked with the equipment, making himself available at any time of the day or night, and although on paper he was a mechanic, he was far more than that. He had gained through experience a storehouse of knowledge that was unrivaled and was beyond value to people like me. The number of people who dealt with the problem of the dimly recognized syndrome "post-polio" had dwindled as our population had fallen, so Carlton was one of a kind. He was also one of those rare individuals whose knowledge was surpassed only by his compassion. He had spent hours on the phone with me, as he tried to make me understand and accept the medical necessity of sleeping in the iron lung, listening patiendy to my reasons for not wanting to do such a thing and consoling and comforting me as the tears of disappointment began to

Another City, Another Hospital

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flow. He had helped me through so many problems that it seemed natural to turn to him with this new one, which I was certain he could solve. We talked things over, and I asked for a purchase order to obtain a new chest shell. Carlton said that I should plan to go to Augusta to get the problem solved. Easy to say, I thought. I discussed the situation with my family doctor and with Dr. Judah Skolnick, my respiratory physician, receiving the same answer from both of them: if I couldn't breathe with the chest shell, I would just have to stay in the iron lung. I felt that my dilemma was dismissed in a very cavalier fashion, and I was not only upset but also confused, because the men whose opinions I respected most in matters related to my breathing were giving me conflicting advice. Carlton said that with age (I was now 45) my chest wall had stiffened and the problem could easily be solved by changing to the use of positive pressure. Dr. Skolnick said, with no hesitation, that positive pressure simply would not work. I felt that, if there was no other way and I had to stay in the lung, I would somehow come to terms with it, although I was not quite sure just how this would be done, because I had become very depressed when I had constantly to be in there. Because my arms were inside the lung, I couldn't find anything to do other than eat and with help use the phone. The one thing that I was completely sure of was that I could never adjust to such a situation if somewhere in the back of my mind there was the slightest doubt about its being absolutely necessary. It was just too much to ask me to give up the freedom that I had, however limited, without a fight. I would not be able to do anything or go anywhere, and I really felt I was not ready to spend the remainder of my life vegetating or counting the flyspecks on the ceiling. There was one very small problem: I was in Louisville in my iron lung and had no idea how to get to Augusta, and I had a sneaking suspicion that it would be neither cheap nor easy. My friends had kept up with what was happening, and my church started a fund to help secure financing for the trip and agreed to provide manpower to help in transportation. Years earlier a good friend had taught me that the press could be a valuable ally, so I called a reporter who had become a friend as well, told him of my problem, and asked for his help. The media did a tremendous job, and aid came from my very closest friends as well as from people I had never heard from before or since. As things turned out, securing the funds was the easy part; finding good transportation proved to be a completely different matter. We discussed all the possibilities and came up with many conflicting ideas and suggestions.

i8

Another City, Another Hospital

As the reporter was writing his story, he called around to check various possibilities and found one ambulance owner who said he would take me to Augusta and charge nothing at all. The reporter called to tell me about this offer and pointed out that he could not run a story saying that I had no way to get to Augusta when this generous offer had been made. I agreed with him that the offer did sound very good and called the ambulance owner to discuss details. Only then did he tell me that there would be one litde drawback to accepting his proposal. It seemed that his vehicle had a small gasoline tank and, in order to compensate for this, it would be necessary to put one gasoline generator on top of the ambulance and pull another one behind us. I had enjoyed the publicity but not enough to want to go out in a blaze of glory. The reporter agreed that he could run a story stating that I did not have a safe way to travel. Anyway, I really preferred to fly down. Years before, post-polios were flown all over the country for rehabilitation, and at that time, the Air Force would send out an airplane complete with every possible kind of equipment and personnel. Things had changed, but, believing this was still the way to go, we called and/or wrote the governor, congressmen, senators, and even the president. Everyone wished me the very best of luck, but no one sent an airplane. My congressman did manage to send me a football autographed by all the Dallas Cowboys, which was probably the thing I wanted second most, even though it would not fly. Help from the media continued, with the TV stations running periodic reports. One morning, while I was taping a report, the phone rang and my nephew answered it. The voice on the other end asked for me, and my nephew replied that I was busy just then being interviewed for TV. The voice said, "Well, will you ask her if she has a couple of minutes? This is the White House." The interview came to an abrupt end and the cameras recorded the phone conversation, because we were all hopeful that this call meant that an airplane was on the way. The conversation turned out to be interesting but totally unproductive, as the man on the other end, in a very patronizing way, verbally patted me on the head, assuring me that everyone was interested in and concerned for my well-being. There was no offer of a plane. Somewhere during the conversation he did say that Medicare would help to finance the trip if I traveled by land. This statement would become very important much later. A local doctor called to say that he had an airplane, that he would pressurize and fly me down, and that I would never have to take a breath. When I asked him to explain

Another City, Another Hospital

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exactly how that would work, he said that he was just trying to help, but if I didn't want his help . . . Carlton had told me that he would do everything possible to help me once I got to Augusta, but getting me there was something that he could not do. Nevertheless, during one of our many conversations he had told me of a young man there who had some kind of very large, specialized ambulance. I asked to have him call me, which he did, and I learned that his ambulance was a mobile ICU. Using this large unit, he would pick up a trauma team and transport them to the scene of an accident, allowing the injured person to receive treatment on the return trip to the hospital, because those first minutes of treatment could well determine whether an injured person lived or died. For me, he said he would remove unneeded equipment and install an iron lung, and maybe, just maybe, he could persuade Carlton to travel with us. It all sounded very good, but I had a serious flight lined up and a date had been set. I was eager to fly but did have a few reservations about this flight, because the small size of the plane meant that the wheels and gauge would have to be removed from the lung in order to give us one inch of clearance, and the people who traveled with me would have to sit on pillows strapped to the floor. Other than that, no problem. The night before the flight, I could not sleep and finally decided that there were too many risks involved, so I called and canceled, not knowing exactly what I would do to get to Augusta. After more unfruitful calls, and some thought and prayer, I decided to go in the large ambulance. Carlton was persuaded to travel with us and to split the driving time with the owner, Tom. One of my very best girl friends, who could not accept the idea that I would go alone, decided that she would go with me, stay just a few days to be sure that everything was all right, and then return home. One of the fellows from church, who had become one of my newer and best friends while working extremely hard to get me out of town, also agreed to go with us. On Sunday, Carlton and Tom came over for a get-acquainted meeting. Although Carlton and I had talked and exchanged letters for years, this was our first face-to-face encounter. Of course, Tom and I had never met, but I found him very impressive and interesting. We got along very well from the start and still correspond, each remaining interested in what the other is doing. I felt I could not leave without being certain that my favorite college basketball team had won their game, and had decided that it would be better to travel at night. So on Sunday night, following a victory on the basketball court and a going-away party with a number of friends, I was removed from my

20

Another City, Another Hospital

lung, carried to the waiting ambulance, and placed in the lung that had been brought from Augusta. Final goodbyes were said and we were on our way Tom had equipped the ambulance with a TV and a microwave oven, which I had once jokingly said he must have, so we ate as we traveled and, though I could not sleep, it was otherwise a completely uneventful trip. Every time I asked where we were, I was told that we were in an ambulance on a highway in Tennessee. I got very tired of being in Tennessee, but it soon passed, and early Monday morning we pulled off the main highway in Georgia, so that everyone could freshen up a bit. This seemed a good idea, but I thought Tom had lost his marbles when he had the ambulance washed and then just sat there. The reason for his strange behavior turned out to be that medicine, the medical college, and all that goes with them are very big in Augusta, as big as the Masters golf tournament. Because of their importance, and because I had traveled so far to get there, the media had been alerted and their crews would be in place at a certain time, but we were running a bit ahead of schedule. Watches had been synchronized and we were supposed to arrive when the cameras were rolling. Our arrival was a bit on the wild side, with the media taking up all our time, until some of the medical people stepped in, complaining that they were being kept from their work, which was, after all, the reason for my visit. After this delay I was taken to my room, where the first order of business was rest. I was then introduced to the chief of pulmonary diseases, a very nice, interesting doctor, and we started to work. They soon found that my basic problem was exacdy what Carlton had suspected, a chest wall so stiffened that there was no way the chest shell could possibly work effectively. To be sure, we tried the chest shell one last time, but it could not move enough air to provide effective ventilation. We tried the new, small machine that provided positive pressure, and it worked like a charm. I was amazed by how well it worked and how very comfortable it was. The cumbersome shell, which had fit so tighdy, was replaced by nothing more than a small tube to be held in my mouth. A holder was then made for the tube so that I could hold on or let go at will. It was extremely comfortable, and I realized that one of the side benefits would be that I would no longer be restricted to clothes that buttoned down the front. One of the nurses went shopping for me and purchased a jacket with a zipper up the front, our goal being that I should return home with everything, including my clothes, different.

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Everything had gone beautifully, so Carlton put me in his car and we toured Augusta in an effort to insure that my confidence had not suffered any severe damage and to prove that the new equipment could be used just as effectively as the old. I was impressed. I had used negative pressure with few exceptions, and the positive pressure was so comfortable that, by the time we returned, I was convinced it had a very good chance of doing even better. When we got back from our tour, it was obvious that there was nothing left to prove and that the best thing we could do was head for home as soon as we could get everything together. There had been only one discouraging occurrence during my stay. While I was being transferred from the lung to my chair, my foot caught on the tank and the ligaments in my knee were torn, resulting in an injury like that caused by a crack back block among football players. Things had gone so very well and I didn't want anything negative to be reported, so on the day that we were to leave I wore the brace that had been ordered for my knee until I had been positioned in my chair. I then had the brace removed and propped my foot on my machine, keeping my knee stiff and giving it a perfecdy natural look. The entire staff had been marvelous, and I was determined that there would be no questions or pictures that reflected negatively on the overwhelmingly favorable results of my stay. There would be one last meeting with the media and it must be perfect. I was feeling great, ready to leave, and had no desire to travel at night on the return trip. In fact, I wanted to come back through the mountains and stop at the Biltmore House in Asheville, North Carolina. Carlton had some doubts about the wisdom of this, but Tom was all for it and took time out to call and make some arrangements on the night before we were to leave. After ten highly successful days, during which my breathing support had been changed forever, we were on our way home. I stayed in my chair until we made our stop in North Carolina, which was worth any delay and effort. I fell so in love with those mountains! They really did look blue. When we were ready to leave, it was getting dark, so Carlton put me back into the lung to get some rest—no sleep, because that would have been asking too much. We agreed that somewhere not too far from home he would put me back into my chair, in order for my family to get the full impact of my improvement the minute they saw me. I could not wait to show them the wonderful changes that had been made. As we were speeding through the hills of eastern Kentucky, Carlton had dozed off and Tom was driving while he and I listened to the CB radio. It was dark and very quiet when, suddenly, a voice crackled, "My God, Raymond, did you

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Another City, Another Hospital

see that thing?" Raymond replied that he had indeed seen "that thing" and that he believed it to be a flying saucer. Tom and I cracked up; but I had to think that friend on the radio was closer to the truth than he may have realized, for I felt high enough to need some kind of flying machine and it seemed that we had definitely broken some barriers in terms of improvement. My new equipment seemed light years ahead of the old. At about four in the morning we arrived home, and I remained in my chair to show oif my new equipment and how very well it worked. It was Easter weekend, and I felt that I had truly been resurrected and had a whole new life before me.

4. I Get Wheels

Having made the change to new breathing equipment, I could not at once put total trust in it and be certain that it would do everything that I wanted it to do. By 1984, I felt these issues had been resolved and began to feel completely at ease with my new situation but my girl friend who had gone to Augusta with me began asking why I didn't try to get a motorized wheelchair. She is a simply wonderful person and I adore her, but, by her own admission, she does tend to be a bit bossy (I call it leadership quality) and sometimes sees things only as she wants them to be. My first reaction was that I was doing just fine, thank you, with friends carrying me wherever I wanted to go. After all, I seemed to have accepted my fate quite well, or so I had been told. For a number of years I had attended church regularly, relying on family and friends to supply the muscle without complaint. The passage of time had weakened my forces, but that only meant that I would have to be content with doing less. I could handle that! To be sure, I was doing all right and called myself content although that was only a euphemism for complacent. Not only that—getting a new chair would not come easily and would require going to batde. It would undoubtedly involve many people, many agencies, and the overwhelming amount of red tape that would come with them. While the occasional victories that come with such batdes are sweet, the many defeats are suffocating and their emotional price tag is high. Sometimes it takes time and effort to talk myself into commitment to these struggles, but the fundamental truth was that complacency had set in. About the time these discussions took place, I met a lady who was a dealer in medical supplies and medical equipment and, more from curiosity than anything else, I inquired about the possibility of getting a motorized chair. She seemed to be quite eager to help, told me the brand names of some chairs, and discussed various manufacturers. It all sounded very interesting until we got down to the nitty-gritty. The first price I heard was $8,500! After recovering from the shock, I called my girl friend

24

I Get Wheels

to report my findings and to announce that no chair was worth that much money, adding that financing for such a venture would never, ever be found. She stood her ground, saying that, even if I did nothing but roll across the floor and put my feet up and down, it would be worth the price. Largely through inaction and allowing events to control me, I gradually became more interested in the idea and soon found myself fully committed to getting the motorized chair. At that time I really had no idea of exactly what it would be or what it would do for me. It was all very abstract, but whatever the spoils I intended to be the victor. There were many details and nit-picking problems, but through a lot of hard work, especially by the lady who sold supplies, and a lot of nagging by my girl friend, in early 1985 the chair became a reality. Because of my particular needs it had many special features and looked nothing like traditional chairs. It was very large, had a rack on the back to accommodate my respirator and battery, and had a lot of moving parts so that the legs could be moved up and down and the back could be reclined, making it just perfect for me. At that time the house had no ramp and the weather was so cold that I couldn't go outside anyway, so I began getting accustomed to my new chair by rolling through the house and putting my feet up and down. Having mastered these two basic skills, I immediately called my girl friend to announce, through a flood of joyous tears, that $8,500 was very cheap—this monster chair was worth anything! I was amazed at how these simple things could mean so very much. For the first time since the onset of polio, I could move to a different area of my room without a word to anyone. I could move closer to my mother in order to hear her better. I could go into another room to hassle Gerry. I was soon learning that there was a whole new world right there inside my house, as I saw things I had never before even noticed. Learning to use the chair and really controlling it did come only with trial and error. One evening when I reclined the chair, it somehow got caught on the rack and would not go back up. Some mechanical adjustments soon got it back into position and I had no more problems with reclining. But on another occasion I raised it too far and the headrest went down into the chair. With nothing to support my head, I was super uncomfortable. I asked a neighbor who was visiting to get me out of the chair and then we would deal with the mechanical problems. There were mishaps here and there but no real disasters. With the arrival of spring came the departure of every vestige of complacency, and I felt a deep desire to get outside. A friend built a sturdy

I Get Wheels

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ramp from my back porch to the yard, and it was off to the great outdoors. A small grocery store had been built next door to us, making it possible for me to bounce through the backyard, down the alley, and into the grocery. That trip soon became my big outing, as I developed a "need" for bubble gum, candy, chips, whatever I could find that was cheap; but I soon discovered that nothing, absolutely nothing, was cheap anymore. When I first stopped going to the grocery in 1952,1 could take a nickel and do wonders with it. Now I found that a nickel was only something that, if you were lucky, was received as change from a dollar. I never did fully understand why the grocer bothered to return nickels, since they were for the most part useless. And nickels had always been my favorite coin. I could not spend all my time at the grocery, but I certainly did not want to stay in the house, so for much of the summer I rolled around through the yard. I had not really learned the knack of driving my chair and always holding onto my hose, so when I occasionally lost my hose, I would go to the grocer mouthing that my breathing apparatus was gone. A friend eventually solved the problem by tying a small, soft cloth around the hose and then around my neck. It looked a bit strange, but it worked. I got a terrible sunburn that summer, but it was so wonderful to be outside that the sunburn really didn't seem to matter that much. My girl friend, who is not one to insist that I do a certain thing and then refuse to help in the effort, came and went with me as I explored my neighborhood. One day we went six blocks away to an area that had a number of small stores. This was my first trip to any store other than the grocery, and these stores actually had clothes. Clothes! I won't say that my enthusiasm went too far, but we did have to call Gerry to come by and pick up our purchases. We visited a little neighborhood joint one evening and did nothing more than enjoy the music and the other people, but, to my surprise, this particular outing drew criticism from some of my more strait-laced friends. My response was simply to invite them to stay in for thirty years and then talk to me about where they would not go. We visited a small liquor store, where I found some Elvis decanters, which, sure enough, insisted on following me home. The outside world had become my best friend and a wonderful, constant companion. Checking my neighborhood was all well and good, but I had high hopes of going further. It was as though getting out had become an addiction, and my only interest was in getting out more and more, and going further and further. There were times when my exuberance took complete control, and I learned that, when complacency left, caution had gone with

26

I Get Wheels

it. One such incident occurred on a little trip down the street with the home health aide who was staying with me that afternoon. When we reached an expressway exit, it was impossible for me to go any further because of the curb, so I just turned and rode up the ground beside the exit. The view was so fabulous that when I ran out of space I just kept on going and soon found myself actually on the expressway meeting oncoming traffic. That was probably my dumbest and most dangerous lapse, so I decided it would be wise not to say anything about this litde excursion, especially to my family, but I soon heard about it from my nephew, who had seen it. Some dear friends that I affectionately call my "Adanta Mafia" had helped finance running a concrete strip from the foot of my wooden ramp all the way to the asphalt of the parking lot next door. I could now zoom down the ramp, turn onto the concrete, and go all the way to the asphalt without stopping. Once in the parking lot, there were a number of available options. Although, technically, I could not pop wheelies, I soon developed an alternative that became a favorite. It was simply spinning around and around as fast as I could for as long as I could. It was great having the runway, because it eliminated all the bouncing and I no longer returned to the house feeling that I had whiplash and needing a few minutes to stop vibrating. Now my only need was a way to go further. As soon as I returned home from Augusta in 1983,1 had begun efforts to recover 80 percent of my ambulance bill, which had been paid from my funds at church. This was in keeping with what I had been told by the voice representing the White House. Although I had never found anything simple about Medicare, or, for that matter, any other government program, I was naive enough to believe that this just might be the exception. It took considerable effort and more than two years, but one day when I made one of my regular calls, I was told that there was, at long last, good news. There was no way to check with everyone who had contributed to my fund, but I knew they would want me to be happy, so I took my modest refund and started shopping for a van. I alerted friends and relatives everywhere to look for a van, and one day my nephew, who is a car salesman, called to say he thought he had found something. He brought out a '75 Chevy window van that had obviously been in a wreck, maybe two, but I just loved it. Going on nothing more than instinct, I was sure it would be perfect for me. The only problem was that every time he backed up there was a very loud clunk. My girl friend, who had pushed me so hard to get the chair, told me repeatedly that I did not want that

I Get Wheels

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van, but I kept telling her that I did indeed want that very van. My friend Sam, who was and is my official van man, drove it and said he liked it. My nephew took it back and removed the clunk, and it was mine, all mine. And it was beautiful. I might have preferred blue, but since the price was right and it ran, white suddenly became exactly what I wanted and needed. I had seen a very pretty green van, with Green Dream painted on the spare tire. I thought about an appropriate name for my van and decided it would probably be something like White Fright. It had no power steering and no air conditioning, but I reasoned that it would be driven by strong people who could roll down the windows. It had certain features that newer vans surely did not have. The headlights sort of looked at each other, and it leaked just enough oil that adding a quart from time to time kept it nice and fresh. All in all, it seemed just about perfect, and it has done a fantastic job, only recendy developing some problems that keep me holding my breath because I can't imagine life without it. So now I was the proud owner of a van, and I kept thinking that I should be able to get into this wonderful vehicle instead of just riding around it in my chair. A lift would be just the thing, but I had spent all my money on the van and was broke. Believing that this had nothing to do with it, I started making calls and hearing prices that ratded my confidence. I had seen a T V report about a local company that had fixed a very elaborate van for a man who had received an artificial heart. Feeling there was nothing to lose, I called and told them that I needed a lift put on a van and had no funds with which to pay for it. To my surprise and elation, the lady I talked with did not hang up but without hesitation gave me the name and number of a lady to call about funding and explained that a lift would cost much more than the van had. I learned about a funding program that I didn't know existed, applied, and won approval. In a very short time my van was returned to me with a lift in place. When we were ready for the big test, I rolled onto the lift, only to find that it couldn't possibly be raised without removing my feet. I got off, looked it over, and tried backing onto it. With no room to spare, everything fit and there was no need for surgery. When the lift was raised, the fellow who was working with it expressed dismay because my head was higher than the door. I told him "no sweat," reclined my chair, and rolled right into the van. I could not believe it! I was actually sitting inside my van. I was so excited that I immediately rolled back onto the lift, explaining that I just had to do that one more time. It wasn't a dream—it worked the second time as well. Back in the van, I said, "Well, let's go somewhere." My mobility girl friend

28

I Get Wheels

got in and took me to a small mall, and I knew I was on my way. World, here I come. The lift had only been in place for a very short time when a friend who is an elected member of the state government called to invite me to come to the capitol to view a session of the legislature. We had often discussed trying to do this someday, and he, knowing my interest in government and politics, had made a lot of plans. He had cleared everything with my doctor, who insisted that a nurse go along, if not for my benefit then for his. Since it was late in the session, plans were quickly finalized and it was off to Frankfort. I thought I was there strictly as an observer, but my friend had other things in mind, which he called public honor and which I chose to refer to as public embarrassment. Whatever the term, things moved very quickly. I was caught completely off guard, and before I had a chance to say or do anything I was rolling to the front of the state senate, the plastic bag containing my bedpan flying from the back of my chair for all the world to see. I was, bedpan and all, very honored, and the fact that the occasion was all arranged by this man, who is one of my most beloved friends, made it especially memorable. This was really the first of many outings, each in its own way very special and exciting. There followed art exhibits, shopping at larger malls, outdoor plays, visits to churches, a school reunion, a return to regular church attendance, picnics, just more places and things than I had ever, in my wildest dreams, dared to think possible. One extremely meaningful activity came to be simply looking at our house and the surrounding buildings. For so many years I had been carried into and out of the house, usually backwards, making it impossible for me to be aware of the things right around me. It became habit to just sit and stare, soaking up these images that were all new to me. I could stop and really look at small flowers, watch the ants at work. It was as close as I would ever get to once more hanging from my beloved tree limb. Many of my family and friends were willing to drive, while I just tried to stay ready to go. After thirty years of having no mobility of my own, this new mobility brought much joy and an inner feeling that simply defies description, although I wish that I could convey to others just a bit of how moving around makes me feel. The only thing I can think of is to ask the others to think of one of their happiest moments and multiply it a hundred times. Whatever it is, it is good—so very, very good.

5· Control

From the days of my first visit to Vanderbilt University Hospital in 1958,1 began to inquire about certain aspects of my medical care and my role in them. With that visit began a series of equipment changes and complications that have not ended to this day. When the time came to leave my pediatrician, I changed to the general practitioner my family had been seeing, despite the fact that I had never liked him. He would, reluctandy, come over when I was sick, totally ignore me, and say, "Well, mother, what's wrong with her?" Eventually, I started telling him what I thought should be done, hoping to minimize the length of his visit. For his part, he usually cooperated, because he no doubt was as uncomfortable with me as I was with him. Since I was being forced to make medical decisions, I began trying to learn enough to give me some chance of making the right ones. Then, in the mid '60s, I began a series of visits to Vanderbilt, because my doctor was quite willing to let me go anywhere, do anything, so long as it got me away from him. When I ran into a problem, he would immediately say, "Go to Vanderbilt," and that was just fine with me. Most of these trips were equipment-related, and I knew the people who dealt with me there were competent. On my first admission I met Dr. David E. Rogers, who was then chairman of the medical department and was, quite obviously, the walking definition of a "keeper." "Keepers" are people that I meet from various walks of life and who, I know instinctively, must become a permanent part of my life. I wish it were possible to explain this instinctive feeling for the benefit of others, but if it could be explained it wouldn't be what it is. It is something that just happens and is all impulse, but it nonetheless has served me extremely well for a lot of years. Even though my first encounter with Dr. Rogers was quite brief, he swept into my life and has been a permanent and important part of it since that first meeting. When the phone has not been a practical means of communication, my letters have

Зо

Control

followed him wherever he has gone, through several states, to his present position at Cornell University Medical College in New York City. On that first trip everything went smoothly, and my care was directed by an intern and a resident. On my second trip I became very ill, after admission, with the first of many episodes of metabolic acidosis. Because that had never before happened to me and was totally unexpected, my condition became very bad before the cause of my problem was found. At that point Dr. Rogers took control and, as soon as I was alert enough to understand anything, he began explaining things to me, telling me the results of lab work and making me a full participant in my care. I loved it! Once the acute episode was over, I was afraid to leave the hospital. I didn't understand what had happened, and the doctors didn't have a definite reason to explain why it had happened. I expressed my fears to no one, choosing instead just to sit there scared, until, one day, Dr. Rogers came in and said that we needed to have a talk. I believe I could quote every word of that conversation of more than twenty-five years ago. The gist of what he said was that he did not want me to be frightened, that I had done quite well for a number of years by trusting my instincts, and that he did not want me to lose that trust. He said that the people in white do not know everything, even when they act like they do and, most importantly, that he would be as near as the phone to help in any way possible. That was the genesis of my demanding to participate in my medical care and of my confidence in and dependence upon the expertise and knowledge of Dr. Rogers. When I left a few days later, it was because Dr. Rogers had given me sufficient information to leave comfortably, come home, and begin my education concerning metabolic acidosis. Control had become very important to me, because it had become obvious that my doctor at home was not either smart enough or comfortable enough to get into my care the way that I felt he should. While I was completely comfortable with Dr. Rogers and Vanderbilt once I got there, the troubling fact remained that they were two hundred miles away and, although the phone had been an extremely useful and beneficial instrument, it did have certain limitations. Within a very short time, I felt comfortable, even eager, to start making decisions. Of course it was not something that happened overnight, but I have told Dr. Rogers more than once that he is largely responsible for making me the thoroughly obnoxious "patient" that I came to be. On subsequent visits Dr. Rogers oversaw my care to such a degree that interns and residents were driven to distraction. One team became so

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31

disgruntled that they asked me why they were even needed and, without considering their fragile egos, I replied that someone was needed to write my orders. One resident, in an outburst of pique, went so far as to tell me that I would stick my head in an oven if the order were written by Dr. Rogers. Well, maybe. But he did much more than simply give orders. Every day he made an early-morning visit during which we discussed (he did not order) my plans for the day and, once we had agreed, I announced the plan to my intern and resident when they made their rounds. Maybe they had reason to become a bit agitated, but I had neither the time nor the inclination to soothe fragile egos. Even when I did not want to make a decision, Dr. Rogers refused to allow me to wriggle off the hook. Vanderbilt had a very good orthopedic surgeon, whom I had met while he was serving as a resident. At that early meeting he had told me of a plan to operate on the only hand that I could use, but, when his instructor expressed surprise that he had planned the procedure, it was easy for me to decide against it. Now, nine years later, he had a new plan that sounded much better but would require a lengthy hospitalization, followed by an even longer time in therapy, in order to make it workable. The typical orthopedist, he wanted to discuss nothing, dictate everything. Being the typical stubborn person, I felt that since we had debated my hand for nine years, a little more time to consider all my options could not do a lot of damage. He agreed, and I took advantage of that time to ask Dr. Rogers what he thought I should do. Without hesitation, he refused to tell me. He said it must be my decision and mine alone. He then carefully set out my choices, gave me lots to think about, and left me alone to decide. After I had decided (against surgery), he told me that he believed that to be the correct decision, because the potential benefits just did not seem worth the risk. Such incidents built confidence and at the same time created in me a desire for more control. Dr. Rogers never allowed me to make a coin-toss decision but insisted that I learn enough to make an intelligent one. For my part, I welcomed the chance to make such decisions when I felt sufficiendy knowledgeable to do so. After all, the people in white go through a learning process and often make an educated guess at best, so why shouldn't I engage in some of that reasoning? I don't have to be able to draw a blood sample or run arterial blood gases in order to know the difference between good numbers and bad numbers. One incident will help show that a little knowledge need not be a dangerous thing. One time I became very sick and was rushed to the hos-

Control pital with an undiagnosed problem. I was not coherent but kept mumbling. I knew that blood had been drawn before I left the emergency room, but I was too befuddled to know what the result had been. I mumbled a question about what my pH had been and the resident asked my sister why I would ask such a question. She told him of my history of acidosis, and he immediately drew another sample, confirmed that my blood acid level was dangerous, and undertook corrective action. A lot of time had been saved because the resident was told of a potential problem that he had not considered. One very important and extraordinarily meaningful element of my education has been that Dr. Rogers has always expected a lot from me. There must have been many times when it would have been much easier and far more expedient for him to have made a decision on his own, but he would not do that. When I am involved in "doing" something, he will not tell me that it is all well and good and walk away, if it is not my best. That would be easy. He will make me do my best, be it something as important as my medical care or as simple as the spelling of a word, even when insisting on my best means more demands on his time and good nature. The more I am subjected to that kind of discipline, the less likely I am to make mistakes that could be very costly. It not only creates in me a desire to do my best but also makes me strive constantly to make my best just a little bit better. Granted, there are times when it doesn't seem to be working very well, but the desire to improve is still there and the hope for real improvement remains alive and well. By 1968 I had begun to be more and more concerned about the fatigue involved in going to Vanderbilt. The well-planned visits had worked very well, but I couldn't help wondering what would happen if a problem arose that allowed no time for planning. Just then a very nice familypractice doctor appeared on the scene. He was my age and quite knowledgeable. In the beginning he assisted my unpopular doctor, who was starting to have major health problems. We got along very well, and before long he had bought the practice and come over to discuss my medical needs as well as my wants. Coming over was easy, since his office was direcdy across the street. One of the first things he told me was that he did not possess an expert knowledge of my peculiar medical problems but would make every effort to learn everything possible. Definitely a man after my heart. He told me very early that there would be no more trips to Vanderbilt, because he planned to have everything done here in town. Before long I had a major problem, which he handled effectively, using his head and showing me, along the way, that he also had a lot of heart.

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I immediately wrote to Dr. Rogers, telling him how pleased I was with what was happening here, and he wrote right back telling me how pleased he was, because he was soon leaving Vanderbilt to take a position at Johns Hopkins. I definitely could not follow him, but my letters, which sometimes looked more like small books, could and did. He had led me to the point where I could feel comfortable and confident in dealing with change and, although I would miss him terribly for his professional guidance as well as for the wonderful personal friendship we had formed, I did not feel panicky at the thought that he would no longer be near. He had very carefully laid a strong foundation upon which I would build in the future. The transition in my care went smoothly and my new doctor kept his word about having things done here, which meant that he did many things himself. When my chest shell no longer fit properly, he would come over and make a plaster cast of my chest, which was then used to make a better-fitting shell. We agreed that this would be much simpler than trying to ship me across the country. When I needed blood chemistries run, he would come over and draw the blood, until the day that he walked in, explained that drawing blood was only a matter of confidence, and then stuck me eight times. After that, when a blood sample was needed we called a lab. We got along famously and he helped me in many ways that had nothing to do with medicine. When I needed a ramp, he designed it; as soon as I got my own generator, he came over and learned how to start it. I cared deeply for him, but there came a time when he seemed to change and became very sad. When that happened, I found myself being more and more concerned for his well-being, but calling him less and less about matters related to my own medical care. When a 1986 car crash took his life, I could only hope and pray that he would find some of the peace and happiness that seemed to have eluded him toward the end of his gifted and far too brief life. In the spring of 1970 I was sent to a laboratory for pulmonary function studies, because a newly acquired chest shell did not function properly and was creating breathing difficulties. The pulmonary director just patted me on the head and turned me over to a doctor named Judah L. Skolnick, who ran the tests and gready impressed me. It was quite obvious that he was worth whatever effort might be required to keep him actively involved in my care. Because he was working on a fellowship at the time we met, I knew this would require some time and patience. I had conducted a desperate search for a good, competent pulmonary physician and come up empty-handed; now, suddenly, when I wasn't even looking, there

34

Control

he was! I could wait a while. Although I left that first meeting more than a little bit angry, I knew that would mean absolutely nothing in the long run, especially since the reason for my anger was that he stood there telling me the truth rather than what I wanted to hear. This man, who was to become a shining example of the "keeper" physician, would be involved in my care from that day onward, until, at the death of my family doctor, he assumed responsibility for my total care. To questions of why a pulmonary doctor is involved in so many other areas, Dr. Skolnick replies, with a smile, "I am the total physician." And he is. Perhaps because Dr. Skolnick was just beginning his private career and possibly didn't feel totally secure, there was a bit of the "me doctor, you patient" attitude left in him, but with a bit of nagging and a few subtle hints, such thinking soon disappeared and was replaced by an attitude of teaching. Once in a while, usually when he is tired and wants to get through as soon as possible, the old attitude will surface, but I think he knows that with me it will not work. Our relationship developed into something more like a partnership, and I always went to the office or hospital with a very definite opinion as to what was wrong. That led Dr. Skolnick to greet me with, "Regina, what's wrong?" and on the occasions when I professed not to have any idea, he would say, "Sure you do, now come on and tell me." That was incentive enough, and I would proceed to tell him what I thought the problem was even if my diagnosis was wrong, because I believed that to be a good place to start. He was willing to continue my education in metabolic acidosis, and when I inquired about books or other sources of information that I felt might add to my medical understanding, he always gave me good recommendations. The same was not always true of some of his associates, who would abrupdy turn aside such inquiries by telling me there was no need to read something that I could not understand. Of course, there is much in what I read that I definitely do not understand, but my thinking is that whatever I learn, no matter how small, is that much more. Why any medical professional would oppose these meager efforts is totally beyond my comprehension. It is easy to spot doctors who are basically insecure or ignorant, because they want nothing to do with this kind of thinking and try to hide their own incompetence by acting as though they are privy to some big secret code that could not possibly be understood by anyone outside their profession. I believe it is important to think of medicine as an art rather than a science, and to remember that those who practice medicine do just that. They practice.

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One thing that has caused me considerable trouble is that during one illness there was an entire week in the hospital, when I was completely "out of it all," with no communication between those who administered my medical care and me.* Even after I woke up and Dr. Skolnick began his efforts to explain all that had happened, there was a great deal that simply did not register as it should have. I returned home from that hospitalization with a tracheostomy tube, or "trach,"f which I disliked with a passion, and a diagnosis of obstructive sleep apnea, which I disputed because I did not understand it. There had been neither time nor the proper conditions to give me the needed education. Months after these events, I asked Dr. Skolnick for a brief written explanation of why he felt so strongly that the problem was obstructive sleep apnea. He wrote one paragraph, citing the cineradiographic study showing the collapsing together of tongue and throat creating the obstruction. In that short paragraph, Dr. Skolnick cited convincing evidence. That was it! A light went on. To prevent something like that from happening again, especially as it related to my newer problems, I determined to study and learn everything possible about the trach. As so often happens, my actions did not keep pace with my intentions and I delayed, and Dr. Skolnick delayed, until I paid the price. I began having a great deal of difficulty breathing and went to the emergency room thinking I must have pneumonia. Tests showed that scar tissue had developed and 40 percent of my trach was blocked. I had not even learned that such an eventuality was possible! But, I know that now and plan not to forget it any time soon. A very nice, extremely competent ear, nose, and throat specialist had been introduced to me at the time the tracheotomy was performed. He returned to my care in order to remove the scar tissue. I am determined to become more involved with him so that he can check my trach from time to time to see what is happening in there. He told me he needs to do that since he believes the scar tissue will develop again, but I also want to be more diligent in my efforts to learn about the trach. As preparations were being made for removal of the scar tissue, I asked what I could do to be certain that a particular anesthesiologist, who * I talk about the background for this episode in the chapter on "Life in Intensive Care." I I used the word "trach" initially with dread, but later with appreciation. A technical description of its nature and uses is given in the Appendix; I talk about my tracheotomy and its consequences in the chapter on "Life in Intensive Care."

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Control

I felt had used extremely poor judgment when he had tried to intubate me some seventeen months earlier, was in no way involved in my care this time around.* I returned to my room to find an anesthesiologist there who introduced himself with a name that sounded very familiar. I asked if he was , he asked if I was , we both agreed that we were, so I told him that I didn't want him, thinking that he would bow out gracefully. Instead, he told me how good he was, that he had had no complaints from other patients, and that his patient mortality rate was nothing short of sensational. He pursued that line for twenty or thirty minutes, as I tried to tell him that I could not and would not trust his judgment. He then left, saying he would try to see whether anyone else would be interested. With no other option, I refused to sign the consent form and asked for the anesthesiologist who had worked with me when my gallbladder was removed. Dr. Skolnick backed me completely, and I got the doctor I had requested to be my anesthesiologist. Two hours before the time the surgery was scheduled, I signed the consent form. All this process caused a bit more hassle, but to me it was the essence of control. I went into surgery very relaxed and at ease. Usually I never give up one breathing aid until another is in place. This time, as Dr. Silk, my ear, nose, and throat doctor, was checking the cuff on my trach, I asked if he wanted to take my hose. He asked me if I felt sleepy, and that was my last memory until I woke up in the recovery room, my hose long gone and surgery complete. My life has been wonderfully blessed by physicians who have gone that extra mile in teaching me to participate as fully as possible in my care. Here I have tried to highlight two who have been especially helpful, brilliant, and nice, but there have also been many others who have contributed to the cause, knowing that for me control is an all-consuming issue. Not all my teachers have been doctors; rather, they have come from every segment of the medical community. They have been extremely helpful in providing large pieces in the solution of my individual medical puzzle. On those occasions when it has been my misfortune to encounter someone who is closed-minded and whose attitude is not compatible with what I perceive to be my medical needs, then that person, be he or she a student or a professor, is soon removed from my care and from my presence. I try to handle any necessary removals as diplomatically as possible, but when that doesn't work, then so be it. I learned early that diplomacy does not always work and that there are times when it is difficult to remove •The story of his incompetence is told in recollection in my chapter on "Dying."

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an individual from one's presence and even more difficult to remove him from one's care. The insurance system being what it is, such an individual sometimes wants to hang on even when he does nothing more than stick his head in the door and take a quick glance at the chart. I do not have time for games, and these issues must be setded as quickly as possible. I refuse to entrust my care to the incompetents of this world.

6. Life in Intensive Care

Recently I returned, for a week's stay, to the intensive care unit where I have spent my in-hospital time for the past decade. I feel a strong emotional association with this hospital and the people who make it what it is. This is because I have reached that stage of life where further rehabilitation in distant cities is no longer possible, and the remainder of my hospital admissions are likely to be at this one institution. It has become a friend and holds no fear or foreboding for me. The first time I was admitted here my medical problems were soon under control, but I was certain that my critical case of boredom would be fatal. Fortunately for me, Dr. Skolnick was attuned to my problem of being in something other than a teaching hospital and started sending the students from respiratory therapy over, so that I might "teach" them about my iron lung. Of course they did not really need to be taught by me, but talking with them helped to fill my time and I deeply appreciated Dr. Skolnick's perception and understanding. Some of the people I "taught" at that time are still there and I see them whenever I return to the hospital. They update me on their personal as well as their professional lives, along with explaining new equipment and new procedures to me. And then there are the nurses. As with any hospital, there is some turnover of personnel, but there is also a remarkable amount of stability. Many of the nurses who leave ICU stay at the same hospital, while others are content to remain in ICU. Whenever I am admitted, Dr. Skolnick tells the nurses, as he makes his rounds, that I am there, and they come to see me. The first couple of days are like a reunion of sorts and, although I am anxious to return to whatever I was doing before I went in, I genuinely enjoy seeing them. It makes the stay a pleasure rather than the unpleasant time that it might be. I watch them work with others who are critically ill and see the care and compassion they give so unselfishly to bring health and healing to the ill and hope and understanding to often-bewildered families. I have wonderful doctors and I am deeply appreciative of everything they do, but I think everyone, including the doctors, has to stand in awe

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of the nurses, their assistants, and the respiratory therapists, who are responsible for hour-by-hour, minute-by-minute care. Sometimes, when I am feeling great and pass this hospital on my way elsewhere, I look at it and, for some weird reason, the thought crosses my mind that I will probably die there someday. In my more morbid moments I wonder about the reaction of the staff. After such a long time, many of them are like friends, and I am just presumptuous enough to believe that they will honesdy care. Although most of my admissions have been for one to two weeks, there was one time when I felt as though I had moved in to stay with them, and that admission became the acid test of their caring. In 1987, after more than a year of problems with my sleep, I decided it was time to stop playing and go to Dr. Skolnick to find out why I was going to sleep anywhere and anytime, while doing anything. I was concerned because the sleep periods were becoming more frequent and lasting longer. Because I was not alert during these sleep episodes, I was also not breathing. My days of falling asleep in my chair were followed by nights in the iron lung, filled with fitful sleep, nightmares, talking, and screaming, until I finally woke with a terrible headache to begin another day of falling asleep. Eventually, as Gerry had feared and even predicted, I went to sleep one evening and she could not waken me. EMS was called, and I was intubated and rushed to the hospital. For the next week, during which there was a great deal of trauma, including cardiac arrest, I knew nothing. One evening I woke up, just like waking from a nap, to find tubes everywhere and feeling as though I had been hit by a truck. Dr. Skolnick was standing beside my bed trying to explain what had happened. He told me that I had been diagnosed as having obstructive sleep apnea and said that I must have surgery to perform a tracheotomy the following day. I could not comprehend and absorb everything fast enough. Then he was gone, and the nurses and my family were left to try and bring some sense to me out of the previous week. When these immediate problems were resolved and it seemed that I was ready to leave the hospital, I developed a stomachache, which turned out to be acute pancreatitis, and during that episode, although I was not even aware of it at the time, I became terribly despondent. It was the nurse who wiped my tears, worked to get a better response, and persuaded Dr. Skolnick to wait a few days before calling in a psychiatric consultant. The nurse who cared for me epitomizes all that is good and noble in nursing, and we came to be good friends, remaining so to this day. She did

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everything humanly possible to get me through that episode and spent long hours trying to reassure my doubting family. Once that acute episode was over and it was hoped that I would now leave, the nurses gave me a pizza party on Saturday evening, before I was to leave the next morning. This was a little extra something that was not required and had nothing to do with good nursing care, but it certainly meant a lot to me. The next morning I awoke to a terrible stomachache and Dr. Skolnick's question which came first, the pizza or the stomachache. I had seen no reason to tell him about the pizza party, but one of the nurses, who thought it was a fun thing to have done, had seen him in another unit and had told him. Luckily or unluckily, depending on the point of view, tests showed a gallbladder in need of removal, and surgery was scheduled. On the morning of the surgery, I talked to Dr. Skolnick and told him I was ready, but as soon as he left the room I began to cry. I never thought of actually backing out, but I had been in ICU for more than two months, I was very tired, and it occurred to me that I just didn't want to do that. Dr. Skolnick was soon back in my room, assuring me that he would not allow anything to happen to me, at which point I told him that he had better not. I later thought about what unfair burdens we place on our health care professionals. I have always assumed that it was some observant nurse who told Dr. Skolnick of my tears, because even though he can be quite sensitive on occasion, I really don't believe he can see through walls. With the surgery and my recovery from it complete, I was, after seventy-four days of a physical and emotional roller-coaster ride, ready to leave the hospital. The nurse who had spent so much time with me was scheduled to be off on the day that I left. A little thing like a day off couldn't get in her way, so she came in and got me out of the hospital before going on with her day of rest. It was only a few days before Christmas, and when I got into the van, there was a large, pretty package waiting for me. From my favorite nurse, of course. We parted only after a tearful goodbye. The people who work in and operate these units are so very special to me and give me such splendid care; yet I know my treatment is not the exception but the rule. I have watched with admiration as they work with a patient who is terribly ill and, as soon as their efforts are successful, see the patient moved away from them to be replaced by someone else just as

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ill and in need of the special skills they alone can provide. Often it is impossible to express the gratitude and appreciation that every ICU patient must feel for these wonderful, tireless people, but each of us hopes that they somehow know in what high esteem they are held by all those who pass through their corridors.

7. M a m a

For such a long time, really all my life, Mama had been my supporter, helper, and fan. There is no way to overstate her impact on my life. Any time I attempted to do something, no matter how large or how small, she was willing to give all to insure success and constantly encourage me by telling me that whatever I was doing was good, even when it was terrible and I knew it. I often wondered what caused her to develop so much love for others and to always place the wishes and well-being of others ahead o f her own. As the sixth o f eight children, she had grown up on a farm and, with her sisters and brothers, worked long, hard hours doing all those necessary chores that made a farm go. She had a passion for learning, which remained unfulfilled because her father had decreed that girls did not need to be educated. Girls, in his view, were to work at home until they married. Therefore once she finished the eighth grade she was not allowed to seek further formal education. Her father made many such arbitrary decisions that affected her adversely, and, Mama said, she had always wanted his love and approval but never believed that she had it. I sometimes wondered if she had been made to feel that she must always be second. Maybe the fact that she was between two brothers had a major effect on her attitudes. I never knew. Although by nature she was filled with love and giving, that did not mean that her patience had no limits nor that she would hesitate to fight back when that seemed to be the appropriate response. She was always ready and willing to take on anyone or anything that threatened her girls. She put in a great deal o f time and effort at our schools and church, making costumes for us and many o f our classmates; but if the time came that she felt the teachers were wrong in their handling o f any o f her children, blood or "adopted," someone had to pay. Many o f my schoolmates thought o f her as a kind of mother-protector. At the same time we knew that when she said no to something, that was the end o f the discussion.

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She never made a hasty decision, but once the verdict was in, there was no appeal. When I decided to try oil painting, Mama put my materials out, cleaned my brushes, and worked like a tiger helping me. No matter what the result was on any given day, she was there to tell me that it was pretty, even when she later asked me what it was. After painting for a few years and thoroughly enjoying it, I decided to quit, in part because I am a great starter but not much of a finisher, but also because both Mama and Gerry had breathing problems that were aggravated by turpentine. I had a lot of unopened supplies around, because it was my belief that, if only I surrounded myself with enough of the right tools, I would do a better job. Knowing that Mama would be terribly upset if she felt in any way responsible for my decision, I decided simply to say that I had played in paint long enough and, for no special reason, was ready to acknowledge that I was no Van Gogh and hang up my easel. I did need Mama's help in packing the unopened supplies that were to be returned. As we were packing, she asked why I was quitting and I gave her my song and dance about just quitting. It had been a painful decision for me and, while I had really enjoyed the attempt, I knew that it must come to an end. About midway through packing, obviously not fooled, Mama began to cry. That was so typical of her. Even though the turpentine hurt her breathing, what hurt her more, mentally and emotionally, was that she was physically unable to help me do what I wanted to do. Mama had provided my physical care just as long as she was able and, to be honest, long after she was able. When she could no longer do everything herself, she still rode herd on what was being done and conducted her own inspections to assure herself that my care was being handled properly. As I went to various hospitals, comments were often made about my skin and the fact that it had never broken down. Few knew of the time and devotion Mama had given to make that possible. There are so many examples. Mama had watched through the hall window and applauded when she saw that the lift on the van worked, even though she knew that it would take me away from her more and more. And we had spent so much time together. Many days there had been no one else around—hours spent with just the two of us together. Now, at age eighty-two, having lived a life of devotion to others, Mama was engaged in a desperate battle for her own life. It was January

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1987. My mobility, which she had cheered, now made it possible for me to go to the hospital and see her at least once every day. She was on life supports, was totally unresponsive, and looked so frail and alone. I wanted to be near, hoping somehow she would know, because I did not want her to face this battle without the support and comfort that I could give. She had given so much to me, and now it seemed there should be some way to give back. As the clock ticked away and she showed no signs of improvement, I watched her face and wondered if she knew I was there or if she could hear me, because I sometimes quite literally screamed at her, hoping to elicit some, any, response. I also wondered if she was having some kind of "experience" like those about which I had read. Watching her, I wondered what was going on inside. Was she hearing voices? Seeing bright lights? Was my Dad, who had died only five years earlier, calling her? Was he reminding her of the happiness they shared during the early years of their marriage when they lived a kind of nomadic life, traveling the South on railroad boarding cars? She was a devout woman who had lived a good Christian life—was she being comforted by the only true Comforter during this final struggle? Somewhere, probably on the farm, she had developed a deep love for nature and seemed to accept death as only a small part of the life cycle. She loved spring when everything was coming to life, but always said that she disliked fall, because everything was dying and she often said that everything bad that ever happened to her happened in the fall. Now the cold of January seemed to be closing around her. She was slipping away from me, even as I became more and more desperate to hold her. One evening when I went to see Mama, I saw Dr. Skolnick, who was attending her, before I got to her room. He told me that he had set the ventilator to be as sensitive as possible, but still she was not assisting at all. He said that if she continued this way for very much longer the medical people would be forced to reassess what they were doing. When I entered the room and checked the ventilator, I saw that the assist light was in fact coming on, meaning that she was making some effort, however meager, to take some breaths on her own. My spirits soared. I was excited and elated to think that maybe, just maybe, this was the turnaround for which I had hoped and prayed so fervendy. I watched, talked, and counted, telling Mama over and over that the machine had taken a breath, now for her to, please, take one on her own. I stayed for a long time that evening, but left feeling much better because of her small efforts to breathe. The next

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day she no longer made even those small efforts, and the turnaround seemed farther away than ever. Early on we had made the difficult decision that, should her heart stop, we wanted no further heroic efforts. She was so frail, had enormous breathing problems, and through the years had had trouble with spontaneous fractures of her ribs. We could envision what would happen during any attempt at resuscitation and wanted to spare her that final insult. But what to do? Mama had always been a "doer" and, as the years took their toll and her physical strength declined, she was very distressed that she could no longer "do" the things she considered necessary to make her life worthwhile. When we discussed this, I told her repeatedly that she did not need to do anything other than to be there for us to love. She always replied, as the tears began to flow, that she thought that was simply not enough. I had often heard of the beauty of old age, but I hated what it was doing to her. I knew from memories, from photographs, and from the accounts of friends that she had been a very attractive, well-built young lady of about five feet two inches. She had light brown hair, which was always neady styled and which in later years had grayed beautifully. Her hazel eyes looked happy, but she often stated that her life had been filled with more sadness than joy. She had always taken great pride in her appearance, exercising because she did not want a "turkey neck," trying always to look her very best. She was distressed at the way time had twisted her body, making her back crooked and shrinking her height to well under five feet. She was very upset by these changes of aging, and I hated them on her behalf, hated the frustration that aging brought into her life. Mama somehow felt, no matter how much we tried to convince her otherwise, that she was not doing enough to be needed enough. So what would she think about her present situation? I wondered. When I went to see Mama on Sunday, I was hoping against hope to see something positive, because she had by that time spent a week on life supports with her condition steadily deteriorating. A friend who had taken me to the hospital entered her room with me. We went through all our usual rituals, seeking some response, only this time I did not get so loud, because a sinking feeling deep inside told me that the only thing left to do was to try, no matter how hard it might be, to put aside my hurt, my hope, my selfishness, and, most especially, my fear and think only of one person and her needs—Mama. I asked my friend to leave the room and to try to bar others so that, as so many times before, I could be alone

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with her. For a long while I just watched her. When I was able to speak I found myself telling her that I did not want her to suffer any more and that I understood what she must do. Somehow we would go on. These were strange words coming from me, because there had been a time in my life when I was certain that I could not live without her, but now I felt that she had given me the strength to do exactly that. She would want and expect me to go on with my life. After telling Mama once more how very much I loved her and again looking lovingly at each feature, I reluctantly said goodbye and left her room. The short ride home was difficult and, in every possible way, I was spent. Early the following afternoon, with Lois, Gerry, and me beside her, Mama died.

8. Heroes

I had not been home very long after the onset of my polio before I began to learn about emergencies and those who responded to my calls for help. In the beginning the police were helpful in that they would drive-escort me and even supply muscle for lifting me when necessary, but they were soon forced, for a variety of reasons none o f which I ever fully understood, to end their helpful ways, refusing even to provide a much-needed siren. Civil Defense people were supposedly available to help hand-pump the iron lung in the event o f a power failure, but that proved to be a joke. On the one and only occasion that I called on them for assistance I was told that it was almost five o'clock, time for them to go home. From their reaction I assumed that all emergencies must be scheduled and approved. Emergency Medical Service refused to move me one time, the first time that we had ever called for help. On that occasion I was in the iron lung and unable to breathe out o f it. Dr. Skolnick had been called and had said he would meet me in the emergency room and would have a lung ready and waiting. EMS said they could not move me because this arrangement would be the equivalent of taking me to the doctor for a scheduled appointment and so my situation did not constitute a true emergency. They could not or would not understand that the emergency would be fullblown once the lung was opened. We had to make the decision to go for it by placing me in the back o f Gerry's station wagon and hoping that she could avoid a wreck and still be able to get me there in time. I was very frightened and felt that this placed far too much pressure on my family. My fear turned to anger and I was determined to pursue this—in my view—injustice once I returned home and felt up to a good fight. A frontpage article in the evening newspaper led to a fruitful dialogue and thereafter EMS became more helpful. Without question, they saved my life on at least one occasion when obstructive sleep apnea caused me to stop breathing. All the early misunderstanding and misgivings are stricdy a thing o f the past, and I now have a high regard for their willingness to help.

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The power company gave me a phone number to report power outages, but, beyond reporting, it was useless and proved not to be very helpful when the crunch came. I soon learned that the one emergency unit on which I could depend time after time after time, no matter what the reason, was the fire department. The firemen have been called many times for many reasons and have always responded with the greatest possible speed and efficiency. At times the fireman answering the call would ask for a moment to think, saying he knew they could do it, but he needed just a few minutes to figure out just how it was to be done. My experience has been that they tend to think fast, for there has never been any real delay. Most of my calls have been made because I needed to get to the hospital in a hurry and they were needed to transport my iron lung. On such occasions they have always created a lot of excitement for the entire neighborhood because the firemen cannot be separated from their equipment in case it becomes necessary for them to go directly to another emergency, and their standard complement for transporting the lung came to be a hook-and-ladder, two pumpers, a pick-up truck, and all the firemen that went with that equipment. When all these units came roaring in, with their lights flashing and sirens screaming, it did tend to wake up everyone within earshot. Because the firemen were not allowed to transport my equipment with me in it, I would be removed from the lung and transported separately, either by ambulance or in a station wagon. Nevertheless, the neighbors often reported seeing me, in the lung, on the back of the fire engine! Although I would love to ride with them, that has not yet been possible. For a good while, the captain of the hook-and-ladder company was a fellow with whom I had attended church and school, while living in the country long before having polio. When his dad died, he moved to the West Coast and I lost track of him, until he again turned up at my door, a fireman coming to the rescue. He became very good not only at moving my equipment but also at assessing my condition. After leaving my equipment and me at the hospital, he would call his mother, who was a good friend of my mother, to report that I looked pretty bad, looked better than last time, or whatever. After he was burned when a roof fell in during a fire, he was transferred to a quieter company, and I really missed having him near. When I wanted to attend my niece's high-school graduation in 1970, I called the fire department to get clearance, because that was sometimes necessary when I was going into a large crowd. They not only gave clear-

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ance but also sent a fireman with me to keep an eye on my electrical cords, making sure that they stayed in the oudets and that I was kept breathing. All these things meant that I could concentrate on the event at hand and not be distracted by thoughts about the security of my breathing. It was soon obvious to all why I began referring to them as "my heroes." On one trip I was very sick when I reached the hospital, and the firemen waited with my family just outside the emergency room. As time dragged by, one of the nurses took it upon herself to tell the firemen that they had to leave. They told her, politely but firmly, that they had been sent to assist my family and that they would leave when and only when my family said they were no longer needed. On that same admission I reached the point where I was well enough to be discharged but could not stay out of the iron lung long enough to travel even the few blocks to my home. Christmas was fast approaching. I had talked everything over with my doctor and he had agreed that, if I could find a way to make the transfer, he would let me go home on Christmas Day. Since the firemen could not move me this time because I had to remain in the lung, one of my best friends said he would get a generator and enough muscle to get me home. Another friend, who worked for a potato-chip company, said he would get a truck. On Christmas Eve my minister came by to see me and to tell me that he wished I wouldn't make such an effort, an effort that he considered to be very chancy, just to be home for Christmas. I tried to tell him that I thought I was really ready to leave the hospital and that I would not take any unnecessary risks just to be home for one holiday. In spite of his misgivings, he agreed to say a prayer for my safety. When he finished, I looked at him and started laughing, as he said that was the best he could do. It was the most pitiful prayer one could ever hope to hear. Nevertheless, on Christmas Day, with the generator puffing black smoke out the door of the potato-chip truck, I arrived home. This was one trip made without my beloved firemen. One bright spring day, there were storms all over the county and we had a power failure. I could breathe then longer than I can now, so I called the power company, told them that the power was out, and that I had about fifteen minutes to breathe before reaching the critical point. At that time I had no generator; my battery, which was supposed to provide my back-up power, was dead; and when they tried to remove the battery from my niece's car it proved to be corroded and could not be pried loose. It was one of those times when everything went wrong at once. My family got me into the lung because it could be hand-pumped, and some fellows

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from the drugstore came over to help with the pumping. One was a short, elderly, rotund man, and I was certain that when he started pumping he would have a heart attack and fall over on the floor, but he one-armed the pump and did much better than the younger guys. Things had happened so fast that, for various reasons, the firemen were not called as soon as they really should have been, but once they were called it was only a matter of minutes until I heard the welcome sound of sirens. The firemen rushed in, followed by an EMS team with all their equipment. Close behind them, was my doctor, who had been sitting in his office across the street, never thinking about anything being wrong until he heard the sirens. Because I had no generator, the firemen brought one with them, and in a very short time they had it going. They made certain that everything was working well and left one fireman to watch over the generator and me while the others went on their way. Two and one-half hours after I had called the power company, telling them that I had fifteen minutes to breathe, one of their men came to our door, asking if everything was all right. I couldn't understand what difference it made to him, after such a long time. The fireman who had stayed with me was quite angry and made him check every circuit breaker in the house before leaving. When all this was over, I asked about the wisdom of obtaining my own generator. The fireman said that they would always come to help me and that I need not be concerned about things like that. However, the fire captain later said that they certainly would always come, but, because the telephone lines could be down as well as the power lines, he believed it would be a good idea for me to have my own generator. Later, once my generator was installed, it was necessary to call the firemen from time to time to have them start it, because it was a pull-start type and there were times when there was no one here with enough muscle and know-how to do it. When such instances arose, it was back to calling my heroes, and they never failed me. Only recendy Gerry and I decided to go out to a store for a while and, when we got there, discovered that the cord to my lift had been cut; it would not budge from the up position. So there we were: I had no way to get out of the van, Lois and Allen were gone, and it was a holiday, so everything was closed. We drove around for a while, looking and trying to decide what was best to do. My first, second, and last opinion was that we needed a fireman, or two. Or a company. Finally, I persuaded Gerry to drive out to the fire station, where the captain, who was accustomed to moving my lung but not to seeing me out of it, told me that it wouldn't

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hurt me to sleep in the van one night. But he did put my cord back together. Afterward, we talked for quite a while, comparing notes, because we had discovered that we were originally from the same area and, when you are from a place that small, you tend to know a lot of the same people. With the coming of the trach and the move away from using the iron lung, my need to call the firemen has greatly decreased. I still see them on the street from time to time as they return from a fire, and speak to them, hoping they know what a positive impact they have had upon my life and how deeply I appreciate all they have done. They have done so very much, so very well, and they are, hands down, the best emergency unit in the city. They never gripe and never waste time asking unnecessary questions— only those essential to doing a good job—and then they go ahead and do it, asking for absolutely nothing in return. On those occasions when I have tried to thank them, they have shrugged their shoulders and said they were only doing their job. It would be nice if everyone did his or her job so well. They are, each and every one of them, proof that heroism is alive and well in the fire department.

9. Learning

Although I completed high school by means of a correspondence course, that method of learning is not something I would ever recommend to anyone who would not be content with facts but would want to move beyond to the challenge of exchange of ideas, both with the other students and with those special teachers who have the ability to teach their students to think and truly learn. As soon as I completed my high-school studies, I was off to a hospital in another state and there seemed always to be a reason, or an excuse, not to pursue further organized education. I did have a deep desire to learn anything that I possibly could. I had been a litde bit better than average student and had learned just enough to convince me that I had actually learned very litde. For better or worse, I was forced to become my own teacher by finding one subject that interested me gready and pursuing that interest by finding books I felt would help me better to understand the subject. There was nothing formal about such education and no credit to be earned, but that didn't really matter. My only interest was in learning whatever my brain could absorb. The simplest way to learn, using my method, would seem to be to go to the library and borrow those books appropriate to the study at hand. Right? Wrong. Even today only about one-third of our libraries are accessible by wheelchair. In an effort to obtain books from the library, I did call, and they sent a lady to my house to discuss my wants and needs. As I tried to explain what I wanted, she looked me square in the eye and told me that I could not handle books. That was news to me, so, while I insisted that I had read quite a few before meeting her, she ignored me and went on at length about talking books and the home-bound program. I told her that I did not want the home-bound program, because under that program I would have to check the subject matter of the books that would interest me as well as the number of books I would like to receive every four weeks. I felt that such a system would lock me into something that I

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might not like at all. There are long periods during which I don't want to read and, when that is over and I want to read once more, there is no way to predict what subject matter might attract me. In looking over their list, I found that most of my interests would probably have to be listed under "other." I did not want talking books, because it is too easy to let my mind wander when listening to something, and reading does not permit such wandering. The lady from the library left mumbling that I could not handle books, and a few days later the postman delivered a tape player and a large number of tapes, which were promptly returned. I never did understand how, if I could not handle books, I was supposed to operate a tape player and change tapes. At this time the entire library issue has still not been resolved, because I cannot convince the powers that be simply to issue a library card to me and allow me to get what I want when I want it, as other people do. That doesn't sound too unreasonable to me. I got the papers to apply for a card and was then told that the card could not be sent to me but would be retained in the library's files and that if and when I went to get a book, I could tell them how to find my card. I am currently working on ideas to change this situation. The one thing I have learned from all this is that remaining ignorant is certainly the easier of my options. I have learned nothing in depth but have skimmed the surface of some very interesting studies. I had a good friend who was a funeral director and, largely because of his influence, I became very interested in what exacdy was done to bodies after death. I well remember Dr. Rogers expressing relief when that study, which he termed macabre and I termed interesting, was ended. I had been traveling back and forth to a hospital two hundred miles away with my friend the funeral director and had joked that I liked traveling with him because it was a long and, for me, tiring trip and, whether we had a successful or unsuccessful result, I was traveling with the right person! What really bothers me about learning or not learning is that, in many ways, it all seems rather futile, because I know that no matter how hard I try, I can learn very little. I had a personal care attendant who was very good at what she did, but the fact remained that she was only borderline literate. One day I was thinking about her and wondering how she could be happy with only enough knowledge to survive and in need of help with that. Then I started comparing myself with others and decided that I too would be classified as no more than borderline literate. I thought of both groups of people who boggle my mind, those

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who know a lot about a little and those who know a little about a lot. And I am completely in awe of those who know a lot about a lot. As I was thinking about some of these people and how very much they know, I began to wonder how I could be happy knowing only the meager amount that I do. But I am happy. Perhaps that is the greatest thing that I have learned.

ίο. Dying

At the time I had polio, I knew very little about death and cared even less. Death had touched no one really close to me. Although the mother of one of my girl friends had died, I didn't really comprehend the foil meaning of death. I thought it must be something very strange and unusual that had happened to my friend's mother, and we never discussed such things. But, as I began to make my way through various emergency rooms and intensive care units, I began to see death on a regular basis. Sometimes it seemed as though everyone around me was dying, but on those occasions I was usually too sick really to care or to get involved in what was happening. I could not understand exactly what happened to bring about physical death. All the parts were still there, the cells were all there, and yet the body no longer functioned. I believed in life after death, so I thought maybe the only real change was that the soul had left the body. When I started to see books about life after life, I could not help but be interested. At first the sameness of the stories that were told caused me to doubt them, but later I decided that it seemed only reasonable for such stories to be much the same. There surely could not be a large number of radically different experiences. I had talked to my aunt about this and she had told me of a time when she had been very ill and seemed to be in a garden surrounded by such peace and beauty that she did not want to leave, but was forced, against her will, to return to her more familiar surroundings. Those who wrote the books about such places and about the bright lights might or might not be trustworthy, but I knew that I could trust my aunt. Without her my response probably would have been to dismiss reports of these life-after-life "experiences," but my aunt had enough influence to keep me wondering. Unconvinced, but wondering. I had watched my Dad die at home, surrounded by all those who loved him most. Mama had sat beside him and held his hand until his last breath had left him. Through much of his struggle he had reached into the air, but I took this to mean nothing more than a reaction to his desperate need for more oxygen. My sister said that at one point she thought

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he had called for his mother. That was a very difficult time to be objective and analytical, but I did not see or hear anything that would lead me to believe that he was seeing or hearing anything otherworldly. It was, as death goes, a fairly brief, not terribly difficult struggle. Or so it seemed from my point of view, but I had no idea what it was like for him. I was left to wonder what, if anything, had been there to help the dying through their struggles. Some of the people who had chronicled their own experiences had made dying sound like the kind of thing that one could hardly wait to do and, while none of the accounts had led to mass suicides, they did seem to be the kind of thing that, if believed, should relieve some of the anxiety associated with death. For my part I had decided that it really just did not matter and that I could wait a very long time to find out whether or not there was any validity to the claims I had read. The lights, the gardens, and all that had been related by others seemed to me relatively unimportant. All that really mattered was to live life in such a way that I would be ready to live or to die, and I also believed that I should keep everything as tidy as possible so that someone else would not inherit a mess of paperwork and a mound of unfamiliar problems. As usual, what I believed seemed totally unrelated to what I did, and when it abrupdy became my turn to die. I was completely unprepared and had no hint of what was about to happen. Perhaps if there had been some warning, I would have been better prepared to take notes in order to determine whether or not I was having fun and just how much, if any, of what I had read was true. On a bright Sunday afternoon in 1987, following several days of turmoil and stress, my heart, tired of the abuse and taking the easy way out, stopped. The nurse who was standing right beside my iron lung immediately began efforts to get various things started or stopped, or to do whatever was necessary to restore my heartbeat. When, a few days later, I was told that I had gone into cardiac arrest, the announcement just bounced off my head. While such events had always been a source of interest to me, this time my only reaction was one of interested amusement. My last conscious memory was of a week earlier, so I just thought, "so what?" The news only meant that I had survived one more episode of something that seemed to me a bit absurd. When, after a few more days, events finally started to register, I gave more thought to what had happened and to what my actual memories were, as compared with what my expectations had been. I had read all

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those books about out-of-body experiences, voices, lights, peaceful gardens, the dearly departed, and a whole litany of wonderful things. So where were they when I needed them? I had read and heard that, at the very least, one would be comforted and encouraged by family members who had recendy died. It had been only a few years since my dad had died and only a few months since my mother had died, yet nothing. I wondered. For a full week I had only a vague memory of a visit from a friend who had left before the arrest occurred. I was also told that there were three people, in addition to my nurse, who were in my room at the time of the arrest. When I learned of this, it hurt me, because I felt there was no acceptable reason for their being in my room. I had always believed that death should be shared only with the medical professionals who were there to do everything possible to prevent death from winning the battle. I wanted to be alone at such times. My only recollection of anything that happend while I was not conscious was that of seeming to be in a very large area like that of a train depot, with windows and a number of unidentifiable people. I remembered being very cold and feeling that I was injured and in a lot of pain but could do nothing about it. I have no way of knowing exacdy when anything actually took place, but my guess is that these feelings were very real and that they occurred the day before the arrest, when I was in fact being injured quite severely, as an anesthesiologist was trying without success to intubate me. At that time, I could do nothing to protect myself. Late Friday on early Saturday, someone had made the decision to intubate me again, and on Saturday an anesthesiologist was called to carry out that decision. After making several unsuccessful attempts and causing a great deal of trauma, he told my sisters that he would make no further attempts without benefit of anesthesia. He lied. Believing him, my sisters went to lunch and returned to find that he had made another unsuccessful attempt, without anesthesia, without even a relaxer, and that blood was everywhere, in my room and on me. The bleeding, which was substantial, probably led to shock, and in my opinion contributed mightily to the cardiac arrest itself. I was very cold and, most definitely, in a great, great deal of pain. So what really happened, or more precisely didn't happen, to me? One nurse who believed strongly in the "experiences" of death told me that they got me back fairly fast and that she thought perhaps it was too soon for everything to kick in, or out, as the case may be. Maybe. I am

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nonetheless grateful that the medical team did not stand around and wait to begin their resuscitation efforts until they thought I had had enough time to do a couple of spins around the ceiling or float down the hall to visit. Or just hang over the area to watch their efforts. (To see if I approved?) I had always hoped that, should something like this happen, I would be privileged enough to see and hear some of the things about which I had read. Because instead there was absolutely nothing, I felt very disappointed and somehow cheated. I felt that, if such things happened at all, there was no good reason why they should not have happened to me. Although my disappointment was profound, it was not sufficient to lead me to pursue a course of action that would give me a second chance to see and hear all those wonderful things. I felt that I could wait for that ultimate explanation! A few years later my dear minister friend and I were discussing the detailed accounts of out-of-body experiences, and I was wondering aloud why, even though I had been near death, I had never seen or heard anything. He informed me that, knowing me as he did, he could only assume that I was headed in the wrong direction. Another friend asked, after the arrest, if I was certain that I smelled no flames. For whatever it may be worth, my time during the cardiac arrest was spent in absolute nothingness. Maybe, as I sincerely hope, the experience means nothing. It has not altered my religious belief in life after death, and it has not given me a different view of death. I view death as an enemy to be fought with every resource that I can bring to the struggle. All in all, my only real conclusion is that the arrest happened and nothing else happened, and I come back to my original reaction. So what? Does it really matter? I think not. And it was no fun at all.

п. I Decide to Live

It was not difficult for me to understand that the seventy-four days I spent in the intensive care unit in 1987 was far too long. I nevertheless expected that my return home would be followed by a quick return to normalcy. The actuality was the first of many surprises! Being home for Christmas was good for me, and it was a very happy time, clouded only by the fact that it was our first Christmas without Mama. It was quite different from other years, because I had made only two purchases before going to the hospital and my family had been kept so busy with me that they had neither time nor energy to do any shopping of their own. Unlike other years, there were no greetings sent to friends and there was only time and space for a very small, very artificial tree. But Christmas was still Christmas, and this one was beautiful and especially dear in so very many ways, because during the previous three months we had not been sure we would have it at all. With the holidays and much of the trauma behind me, I fully expected everything to be much the same as it had been before my lengthy hospitalization. It wasn't. I really tried to get interested in various things but found that nothing, absolutely nothing, seemed important. That was true not only of things related direcdy to me but also of the interests and activities of others. It was difficult to participate in a decent conversation because there was nothing to discuss that meant anything. I tried desperately to hide my feelings or, more accurately, my lack of feelings, by being silent, a most unusual state for me. Often at night, after I had been placed in the iron lung, I could hardly wait for the room to clear before starting to cry. I cried because my mother was no longer there, cried because I disliked the trach so much, cried because I couldn't go outside, cried because I couldn't sleep, cried because I cried. Whatever the cause, I could find a reason to cry. I even told myself that this was good therapy, because so much had happened so fast that there had not been time and space for a good emotional response to the many changes. My usual pattern had always been to react to things that I did not like with an immediate emo-

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tional outburst; once that was out of my system, I could deal more objectively with whatever it was that needed my attention. For three months my emotions had been on hold and the outburst too had been on hold too long. Now it seemed to be locked up somewhere deep inside me—too deep to find its way out. Even when I cried, it never seemed to help, because it never seemed to be for the right reasons. We had a beautiful Saturday, and everyone agreed that it would be a good idea to go shopping. After all, if there was anything that had always made me happy, it was shopping. It sounded good to me because I believed that, if I acted normal, then I would be normal and things would be as they once were. There was a lot of new baggage to go along with me: the portable suction machine, a bag containing suction catheters, sterile gloves, an extra trach, a bag with which to breathe me if all those other things failed, and so on. Oh how I resented all that extra baggage! It represented all that I disliked so much about my new medical problems. With everything packed and ready, for the first time in five months, I went out the door under my own steam. As I inched my way down the ramp, absolute terror took over. Only a few months earlier one of my big thrills had come from seeing just how fast I could go down that ramp, often turning onto my short ramp and going down it at an angle, tilting my chair onto two wheels in order to reposition myself. Now I was going slow and straight and it had me scared silly. Worse yet, I had no idea why. Everything frightened me, and my confidence was gone. Fear now had control, and I couldn't understand what I was feeling. For the first time in my life, I became aware of the edges and therefore the limits of my iron lung. Instead of looking into my mirror and seeing the sky, the cars on the street, the people coming and going, I looked into my mirror and saw nothing but limits, limits, limits. The mirror that had reflected happy faces and happy times now reflected only gloom. The mirror that had been my window on the world now stayed cloudy and tearstreaked. The futility of it all overwhelmed me and, once more, the tears began to flow. I felt helpless and totally out of control. I had a severe case of the "I D O N T CARE's," whereas before, right or wrong, I had always cared with a passion. Whatever the cause, I had cared. I decided that maybe it was all right not to care, because I was in critical condition and had the equipment to prove it. I didn't really need to go anywhere. It would be better to stay at home and occupy myself with more important things, like feeling sorry for myself. Maybe the wonderful times I had spent after becoming mobile were some kind of aberration. Now things

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had changed and my condition was definitely hazardous, giving me the right to withdraw and become an observer. My family and friends were constandy asking me about getting out and going somewhere. Every time I called Dr. Skolnick he asked me about getting out, often suggesting places to go. It seemed that no one understood how drastically things had changed or that you can't go running around everywhere when you are in critical condition. The one thing that stuck in my mind that I really wanted to do was write to my friend and confidant, Dr. David Rogers. Because I had shared the good, the bad, and the indifferent with him for more than twenty years, I very much wanted to write to him and knew that he would want to know just how desperate I was. It took eleven pages to tell him what had happened, what had been done about it, and, in great detail, what my reaction had been to all the troubles that had befallen me. Through the years I had often used what I called "typewriter therapy" to explain exactly how a certain thing was affecting me, and often these treatises had made their way to Dr. Rogers. Now I felt that he was the one person with whom I could be totally honest and hoped that maybe he would understand where others obviously did not. I felt strongly that I needed to share my feelings with someone who knew me well, could be objective, and would be honest but not judgmental. As I began to write, I found that feelings were emerging on paper that I had not been able to admit even existed. Not to myself and certainly not to anyone else. For the first time I was able to tell someone that, while I did not feel suicidal, my feelings toward life were ambivalent at best. All my love of and interest in life seemed to be gone. I told Dr. Rogers, as he knew quite well, that through the years so much had been done to preserve my little space on this planet and that I had never questioned the wisdom of doing anything necessary to achieve that goal. But now it all seemed absurd. There seemed to be a terrible price to be paid by others and the grave question whether or not it was worth it. Nothing was important, and there was nothing for me to do. I felt so sorry for me, but would he? When all my "feelings" had been written, it felt so good that I decided to be completely honest one more time and write Dr. Skolnick exacdy how I was feeling and thinking, because, although he kept asking, I had always avoided the real issues. Of course, much of what was written to him was a restatement of what had been written earlier, but it still seemed to help. Two long letters appeared to be quite enough total honesty for a while and, with the letters in the mail, I returned to my song and dance of telling anyone who inquired that I was OK. One day, and only one day, I did

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venture outside just to look around in the yard and parking lot. I felt an overwhelming, though inexplicable, sense of sadness and loss. I felt that certain intangibles were somehow gone, and I returned to the house in tears with the assumption that I would be there for a while. The responses to my letters were very different, but both were helpful. Dr. Skolnick sought to change my thinking by expressing confidence that, based on my track record, I would find a way to deal with my new situation and tried to make me believe that I would be all right. He also suggested that I read Bernie Segal's Love, Medicine and Miracles, thinking that the emphasis on positive thinking would prove helpful. Dr. Rogers, while seeking to comfort, did not tell me that he felt sorry for me, did not say that there is anywhere a right to give up on life, but instead gendy pointed out a few things, gave me something specific to do, and badgered me until I did it. For years, as he had responded to my lengthy letters, he had suggested that I try to write something for publication. I had turned aside his suggestion with the reply that I wrote books to him. This time he simply would not give up, eventually making me an offer too good to refuse, namely, that if I would write, he would edit. He further suggested that I use my lengthy letter to him as a place to start. We went through many ideas and made many changes as we followed a rather convoluted path, but my sincere hope is that others will benefit from the fruit of his patience and persistence just half as much as I have. His response was kind and wise because it meant that at least one person believed there was still something for me to do. Although there was some foot dragging and bigtime procrastination, there was never any serious doubt about making some kind of effort because the old head-in-the-oven-for-Dr.-Rogers bit still held true. And does to this day. Through more letters, each of which helped to provide a much needed emotional release, it finally dawned on me that absolutely nothing would change as long as I maintained my position under my little black cloud and that there were choices to be made about living or not living that no one, not even Dr. Rogers, could make for me. After all, one of my major concerns during the whole ordeal had been that I felt I had lost control and that my decisions no longer mattered, but now the big one was clearly in my hands. Others could encourage, cajole, threaten, love, support, whatever, but they could not act for me. Without consciously saying a positive "yes" to life, I found myself slipping back into old and familiar ways. I began attending church once more. I returned to shopping, speeding down the ramp without fear, and became again more genuinely interested in the lives of others.

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On a return trip to the hospital, which lasted only two days—some kind of record for me—I made the change from sleeping in the iron lung to sleeping on the bed with my small machine attached to my trach. Dr. Skolnick had wanted me to make that change shortly after the trach was put in place, but at that time I wanted to return to normalcy, and normal, for me, meant sleeping in the iron lung. I don't regret having not made the move sooner, because it couldn't have been truly successful until I was ready. I still don't like the trach, but I definitely do not dislike it as much as I once did. The decision I made was simply to acknowledge that this is the only life I have and that whatever my condition, critical or otherwise, I will live it as well as I know how.

12. The Card

Once I had become mobile and tested the many new treats that mobility made available to me, I soon found that, while many things were interesting and brought a great deal of joy into my life, absolutely nothing could top shopping. Whereas I used to wonder how my sisters could go to a shopping mall and stay for three or four hours, I now started asking how they could think of returning after such a short time. My standard procedure was to leave as early as possible on Saturday afternoons and return only after the malls closed. On a few occasions, we failed to make our exit before closing time and, finding everything locked tight, had to find a security guard to escort us out. I soon found that financing was a major problem, because it seemed that every merchant wanted a check or a credit card. Although I had a checking account, I could not write well enough while in my motorized chair to use checks and, even if I could, I did not have a driver's license or a credit card to prove to others that I existed. Everyone told me, and I agreed with them, that it was not very bright to carry more than a small amount of cash, and these circumstances severely limited my choices. I solved that dilemma by carrying in my wallet the amount of cash that I felt I could reasonably spend on a given shopping spree. That amount was backed up by a little more cash, kept in a separate compartment of my purse, just in case I found that great bargain or the irresistible item that insisted on following me home. I bought another wallet to tuck away with just a little more cash in case the unthinkable, spending the contents of the other two, should happen. For some reason the unthinkable seemed to happen every time I went shopping! Although my litde system worked quite well, I watched with envy and longing as other shoppers took their purchases to the counter, whipped out a piece of plastic with their name on it, signed a piece of paper, and went on their way. It seemed to me that a few pieces of plastic would solve a lot of my problems, so I decided to apply for them. I applied and applied and ap-

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plied. I received rejection after rejection after rejection. Everybody wanted to know whether I already had a piece of plastic, but nobody wanted to be the first to let me have one. Eventually I accepted the fate of my being a nonperson without plastic and reluctantly concluded that my only means of paying for my purchases was by carrying the cash that nobody really wanted. Although it appeared that I was doomed to remain plastic-less, I continued making applications because I had discovered that merely making the effort could be quite rewarding, since many of the stores would offer a gift or a certain dollar amount off their merchandise to those who would fill out the forms. Now my priorities were rearranged: when I reached the mall, my first order of business was to check the stores, see which merchants were offering what deals for the day, and fill out any applications that would appear to help my cause. One nice store had such deals very often, and I filled out applications just as often as they had them. Through all that paperwork, I never received one piece of plastic and no longer even held out hope for that, but I did get a lot of very good discounts. As I shopped and looked at jewelry, I decided to get my ears pierced for the second time. They had been pierced earlier, but at that time I was sleeping in the iron lung and kept losing my earrings when I was being transferred. Alarmed by visions of tearing off an ear, I stopped wearing the earrings and allowed my ears to heal. After I began sleeping in bed, I decided that wearing earrings could be safe, so I once again had a couple of extra holes put into my head. I went into my favorite jewelry store to look for some earrings, hoping that I could put them on layaway and have them out by the time my ears healed. The people in the store were familiar with me because of my frequent trips there to visit the sapphires. They had also refused to give me a piece of plastic. On that evening I found the earrings that I wanted and was discussing my layaway plan with the saleslady when she asked why I didn't open an account and take the earrings home with me. Caught off guard, I asked if that was possible and she said that it was. She told another lady to write down everything. At one point the second went to the first to explain that I had no credit and to question the wisdom of being the first store to offer me such a privilege. The first lady just signed the paper and said that if she said it was all right it was all right. My kind of person. Within a very short time I had my first earrings bought on a charge account and, after so many fruidess efforts, my first piece of plastic. Granted, there was not a lot that I could do with

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it because shopping at a jewelry store does have certain limitations, but having the plastic was a definite moral victory and I could take the plastic out of my wallet and admire it from time to time. I continued my established pattern of filling out applications. One month the store where I had filled out coundess applications sent certificates to those who already had plastic whereby they could save a substantial amount on one day of shopping. Next time out, I went straight to the store to ask how I might obtain one of those certificates although I had no card of theirs. I was told to fill out a credit application and the certificate would be mine. No problem. Well, maybe one problem. While I sat there motionless except for the movement in my driving finger, the saleslady who was taking my application made repeated reference to the fact that I had no driver's license. Finally, unable to handle such an unusual situation, she inquired of her superior exacdy what to do about that shortcoming and was told to put my social security number in that box. I mumbled that my fervent hope was that no one would give me a driver's license, took my certificate, and left to do my shopping. About two weeks later I received my first piece of major plastic! There are no words . . . I can shop without money, I can even prove I exist, and, most important, I am told by those who are familiar with the workings of plastic that this could be the first of many. My horizons are unlimited. There are a number of theories as to why I was finally granted entrance into that exclusive universe. My theory is that they somehow checked their records, saw how many applications I had made, determined that they were losing money on me, and decided that it would be in their best interest to issue the card. They must have decided that would be cheaper than continuing to give me so many freebies on the merchandise. Or maybe they simply grew weary of processing my applications, only to reject them. What matters to me is that I am now armed with plastic and more than ready and willing to enter that magical world of CHARGE!

13. Dreams

From time to time various people have asked me about my hopes and dreams. Those who ask do not generally mean that they are interested in what takes place while I am sleeping. Rather, they are expressing an interest in some grand design that I either had or still have for my life. There are a number of responses that I believe they want and expect to hear, but I am stuck with the simple truth that I have no such dreams. For this, there are two primary reasons. One very important reason is that I had no grand design for my life before I had polio. I was a rather immature not-quite-fourteen-year-old and was content to spend my time living rather than planning. I had not even visualized a life in which I appeared as an adult. The nearest I had come to that kind of thinking had been through a chance meeting with a hobo when I was about ten. It did seem to me that he had a good thing going but, although the freedom of a hobo life was appealing, I had always been very partial to cleanliness. My more violent side seemed to think that wresding or a career in the Marine Corps would be nice, but each new day seemed to bring with it a new, never quite serious thought. I am convinced that as a devastating illness took control of my life and my physical health was laid waste, I was very fortunate not to have had dreams that died along with my nerve cells. Shortly after I was hospitalized, a girl, who was only three weeks younger than I entered the hospital. We became very good friends as we shared hospital rooms here in Louisville, and in other cities far from home. She did a lot to lift my spirits and encourage me when I was down, and I would like to think that I did the same for her. We were the same age, from the same area of the country, and had roughly the same disabilities. (She could breathe better than I could because she could do what is called frog breathing—simply gulping air and pushing it down the trachea with the tongue. I could never do that, because I always pushed the air right back out my nose, making the effort

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totally useless. I could move a hand, which she could not, so there was a great deal that we could share.) While we were away from home we relied on each other for support and spent our evenings together, because it was obvious to everyone and especially to us that we were not going to have visitors. At that time there was a respirator that was designed to be used by two people: when one person was breathing in, the other would breathe out. In the evenings we would go into the hall and practice real togetherness by using one of those machines. Our favorite thing to do while using the machine was to sing, so that when I was on the exhale cycle of the machine I would sing a few words and then, while I inhaled, she would sing the next couple of words. (I will confess to taking a great deal of license in using the word "sing" to describe our joyful noises.) Our other interest was in finding a cooperative nurse who would dial phone numbers at random and then allow us to ask silly questions to the person who answered. When we returned home I was certain that our close relationship would continue, and as soon as Gerry got her first station wagon she took me to see my friend. Although our phone conversations had been limited, making me unaware of her total circumstances, I was nonetheless shocked by her lack of responsiveness. She simply would not talk, while I kept talking and talking until I became choked. At that point I told her she simply must talk for a while, and she responded by asking me how I liked Vanderbilt. I told her that I had been quite impressed with the facilities and the care there and, since she had recently made two trips down there for treatment, I inquired about her impressions. She told me that she absolutely hated everything about it. Bit by bit I learned that the doctors there had said that they had never treated a post-polio patient who had been so completely devastated emotionally by her illness. The greatest contributing factor to her devastation had been that she had had her entire life planned and could not find a way to accept the total annihilation of her dreams. She gradually sealed herself away from everyone, including me, refusing to see or talk to me. She was very sad and cried a great deal, finding no relief until her death in 1979. From this and other such experiences, I concluded that I had been very fortunate not to have had dreams, because my circumstances would have dictated that I would have had either to destroy such dreams or allow them to destroy me. I know the more pleasing alternative is to overcome all obstacles that stand in the way of fulfilling dreams, but my experience has been that,

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more often than we care to admit, reality intrudes, forcing a much different outcome. Television, books, and movies never seem to show this side of life, perhaps because we do not find real life to be that pleasant. Reality has left me very litde time to be a dreamer. Dreaming means planning ahead, and that is a luxury that I simply have not been able to afford. When Sam brings me home from church on Sunday, I tell him that I will call later in the week to let him know what my plans are for the next Sunday, because I cannot plan a full week in advance. A second, more important, and strictly personal reason for my not having dreams has more to do with a basic philosophy of life. I gready admire people who make our world go round by doing, saying, writing, and thinking profound things that begin with a dream and create a better life and a more beautiful world for all of us. But I do believe and hope that somewhere in the scheme of things there is room for a certain number of people who are allowed to enter life with no extra baggage, just skip through it, having a few laughs, and then simply go to God. These people should not be expected to say, do, or think anything profound, and I want very much to be one of them. It is especially important not to think profound thoughts, because thinking leads to actions that can become exercises in futility, often leading only to frustration. If life were a bowl of alphabet soup, rather than a bowl of cherries, these people would not be a distinguishable letter. They would instead be a kind of blob, albeit an amusing kind. Not everyone can be comfortable with that, but some of us can. I say "us" with the sincere hope that there are others out there somewhere. That attitude keeps one from being overly serious about many things, especially oneself. When I was painting I wanted very much to share my efforts with my friends, but my greatest concern was that such sharing could conceivably lead to a situation where I would finish my earthly tour and my masterpieces would be brought out to illuminate the kind of person that I was or wasn't, and that would be terrible! I discussed those ideas with a friend who does some beautiful painting, and she told me that she would like her paintings to add a touch of beauty to the world and to serve as a kind of monument. That is fine for some people, but I happen not to be one of them. After I had polio, the big dreams simply did not come to mind. I was kept busy with very short-range plans, which consumed all my time and energy. It might be a mark of immaturity not to have dreams, for I will

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confess to being a kind of "eternal kid." I was so very young when my life was changed so radically, and from there on it became very difficult to grow up. I do not really understand all the reasons for that, but one reason seems to be that, at thirteen, not only did my physical growth stop but, as muscles atrophied, there was actual shrinkage, which caused me to become smaller. Because of my breathing problems and muscle weakness, my voice is rather small and nasal as well. I believe that these factors have combined with others—among them the desire by those near me to protect me—to keep me young, which, like most things, is a mixed blessing. No doubt my attitude of not being overly serious about a lot of things helps to reinforce the appearance of immaturity, an impression that not even my gray hair can erase. Also I must confess to having quite a lot of the "I refuse to grow up" attitude rooted somewhere deep inside me. No matter how hard I try—and so far I haven't really exerted myself—it will not leave. Dreams and those who dare to dream them contribute more than we realize to society, and when a dream, however small, is fulfilled it serves as a source of inspiration to everyone who knows about the dream and the dreamer. It would be wonderfully inspiring to say that, since early childhood, I had dreamed of soaring into the heavens and that, after overcoming tremendous odds, launch date has been set. The reality is that I am quite earthbound with neither the time nor the inclination to dream. To the extent that circumstances will allow, I am skipping through life, trying to keep my baggage to a minimum, while having fun doing it.

ΐ4· Church

Church attendance has always been a significant part of my life. When we lived in the country, the church was there to meet spiritual, social, and entertainment needs. There was a time to study and worship, as well as a time for picnics and other social activities. There were long Sunday afternoons spent singing with neighbors from nearby churches, in order to entertain and socialize. Activities were centered around the church or the school, but especially the church. After polio I lost touch with those simple pleasures that now seem to have all but vanished from our culture. When I returned to my home, I had no church or social life except that brought into my home by visitors. One of the very best at bringing the church to me was a young minister friend whom I had met when he was entering the seminary and I was a carefree kid, spending most of my time going up and down the tar-covered road on roller skates when it was not so hot that the tar melted and I was stuck in the gooey mess. We developed a very easy and comfortable relationship from the start, and his friendship has kept him at my bedside for long hours during my initial hospitalization. Once I was back home, he came and brought others, refusing to allow me to back away from life in general and church life in particular. That was one of the real turning points in my life, because I had no idea how people would react to me and it would have been quite easy to close the door and wallow in selfpity. I simply was not allowed to choose that destructive course. Most of my former friends were gone, but they were replaced with new friends who had never known me prior to my having polio and who were very accepting. For about five years my church life was brought into my home, but some of my new friends must have decided there had been enough of that, so they hired an ambulance to take me to church for the first time in approximately seven years. I was quite nervous, but it was a wonderful experience. When, only a few months later, Gerry got her first station wagon, we began attending church on a regular basis. In the beginning I

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was quite uneasy and even snitched a tranquilizer to help calm me enough to face the crowds. I talked to a friend about this little problem of nerves, and she pointed out that it seemed quite natural for me to be a bit apprehensive about going into crowds after such a long absence. With regular attendance a reality, Daddy and Lois's husband Allen built a chair that was easier to carry, and I was soon accustomed to the crowds and loving every minute of it. I became quite tranquil, and tranquilizer free. There were many new friends to be made as I became involved in some of the extracurricular activities of the church, but sometimes regular attendance as well as extracurricular activities led to frightening incidents. There was a very cold morning when I was hurriedly put into the back of the station wagon but not hooked onto my machine. After a few moments of not breathing, I was found before anything drastic happened, and went on to church, after a short period of catching my breath and convincing myself, as well as my family, that I was all right. There were machines that malfunctioned and batteries that went dead, but it seemed that, no matter what the problem, there was always someone around with a solution. There were those humorous incidents when visitors, hearing the sound of my machine but unable to see me, would ask why anyone would wait until the middle of service to vacuum the carpet. When told 'That's Regina," most seemed totally unimpressed and some even expressed the opinion that the brand name didn't matter. For years my family and I attended regularly, and when help was needed to get me there someone was always ready and willing to help. It seemed that, whatever the need, my friends were there to meet it. When, in the early seventies, my minister friend, who had done more than anyone outside my immediate family to salvage my mental and emotional wellbeing, announced that he and his family, who had become very dear to me, were moving to Houston, I was sure that I would die when they left. I showed him a letter he had written to me while I was in Houston, saying that he was sure it was a nice city to visit, but he, for one, would never want to live there. He still lives there, we see each other whenever possible, and, somehow, I didn't die. I continued regular attendance until 1983, shordy after I returned from Augusta, a trip that my friends at church had done so much to make possible. When my new mobility was all in place and ready to go, I was eager to get back into the groove because, due to some illnesses and other complications, I had been away for three painful years and there was a great big empty spot in my life. To my way of thinking, it would all be

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very simple, because all I needed was someone to drive me. I thought that was my only need, but there were more obstacles than I had realized. One was a very steep ramp that led to a narrow door. One of my friends helped push me up the ramp, but the door at the top of the ramp was too narrow for my rather wide chair, and he could do nothing about that problem. Although some of the guys had literally carried me in and out for years, they clearly could not do it now that I had a chair that, fully loaded, weighed some six hundred pounds. I was devastated. I hurt. I began to lobby for a decent ramp and many friends lobbied with me, but, like so many things decided by committee, it seemed that absolutely nothing was being done. In desperation and despair I began attending another church with a young lady who had come into my life as a caregiver and remained as a very close friend. I was grateful to have this church, with a good ramp, where I met many nice people, some of whom became my friends, but my heart really remained at the church that had been my first love. This seemed only natural in view of the fact that for more than thirty years of my life I had attended that one church. Somehow, my "incidents" followed me to the new church. There was the evening I hit the door frame, lost control of my chair, and climbed the wall, dislocating my shoulder in the process. Then, a year later when that congregation built a new church with elevators, I thought my problems were over, until the morning one of the fellows offered to help me get upstairs. As soon as I was in the elevator, he stepped back as the door closed and left me in there. Alone. Eventually, when my friend went looking for me, she decided to take the elevator and found me. Very few people knew about my efforts to climb the wall, but it seemed that everyone knew about and was amused by my problems with the elevator. Efforts to get a new ramp at my other church continued. There were those who felt it should be built only if I made a firm commitment to use it; those who felt it should be built even if no one other than me ever used it; those few who felt it should not be built at all; and the majority who felt it should be built because it was needed and building it was the right thing to do. I knew from experience how good the people were, and had confidence that they would do the right thing, but I had begun to wonder just when they would get around to doing it! While I waited to see what was going to happen I even went to one evening service and sat in the doorway I could not enter. I continued to attend and to become as active as possible at my new church with the elevators that lay in ambush.

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When I became very ill in 1987, and returned from the hospital so depressed that I despaired of ever going anywhere and certainly not to church, the issue of building or not building a ramp was not even a part of my thinking. Then, one day, one of the fellows who had not been overly excited about building a ramp in the first place told me that a new ramp had been built and inquired as to whether or not I planned to use it. Fighting back my tears, I replied simply that it had been built too late to help me. My thoughts, which remained unspoken, were that I was glad that it had been built and sincerely hoped that it would benefit others, but I honestly felt that it had come too late for me because I had no interest in doing anything and seriously doubted that I would have the wherewithal to live very much longer. I had no plans to go anywhere or do anything. As time passed and my depression subsided, I did venture back out and eventually returned to my church with the killer elevators. I also returned to my old love with its new ramp. It is quite a winding ramp, and one of my favorite pastimes became trying to negotiate all the turns without stopping or hitting the sides. I now attend just as much as possible and, while I am back to enjoying every minute of it, I do believe a degree of bravery is involved in making the effort because I have no idea what new "incidents" may be out there waiting for me.

15. Post-Polio Syndrome

After some thirty years of dealing with polio and its related problems, I thought I knew quite a bit about it. Then, just when I thought I had it all figured out, I found that I needed to add to my vocabulary the phrase "post-polio syndrome" and learn how it would affect me and the life I had painstakingly carved out for myself. Following the original onslaught of polio, my body was about 90 percent paralyzed. That was the bad news. The good news was that the 10 percent left to me was in my right fingers, hand, and arm, and that that was enough to create some useful motion. All other motion, except that which made it possible for me to turn my head and use facial muscles, was so scattered that it was useless. I set about to learn what, if anything, could be done with my minuscule muscularity, not knowing that the sinister nature of polio would allow me to develop certain abilities and feel secure with them, and then, some twenty-five or thirty years later, invite a relative calling itself post-polio syndrome to appear and attempt to take from me those few muscles left behind. My introduction to post-polio syndrome came in the 1980s, when my breathing had deteriorated to the point where I could no longer use my chest shell and receive adequate ventilation. Little was then known about the syndrome, but I was told that strange things were happening to people who were twenty or thirty years post-polio. Some had returned to wheelchairs after years spent free of them; some were using braces for the first time; others were using breathing aids, some for the first time since their original hospitalization and others for the first time in their lives. I thought quite a bit about the startling news, trying to relate it to my breathing problems and deciding that my breathing could not be sustained in such an abnormal fashion for so many years without some kind of unpleasant repercussions. I was no longer a kid, and none of my friends seemed quite the same as they had been thirty years earlier. They were no longer able to do certain things that they had once done with ease. I really didn't want to give serious thought to the idea that there was some kind of monster lurking out there waiting for an opportune moment to grab my muscles.

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Given my new equipment, with which I could breathe very well, I put syndromes of every kind out of my mind and went on my merry way, until other things began to happen. Before I returned home for the first time, I had been given certain basic knowledge about how to write and turn pages. With the help of a leather cuff suspended from an iron pole above my chair, I could swing my arm and control my wrist and fingers well enough so that turning pages was a breeze. It was difficult to see what I was reading because my material had to lie on a flat board across my chair. My Dad, who really missed his calling by not using his abilities to make various aids on a much broader scale, took care of that problem by making a slanted board to set on top of the flat one. It was the kind of board that is now readily available in many stores but was not in the early '50s. Postpolio syndrome notwithstanding, I can still turn pages rather well and try to keep in the back of my mind that, should all else fail, there are many fine books to be read. One of the big problems in my efforts to write was that my hand kept turning palm down, and I could not control a pencil with my hand in that position. One day, in desperation, the therapist who was working with me attached paper clips to the cuff around my wrist to keep it tight and prevent my arm from turning. It worked beautifully! Once my Dad saw that, he made much stronger clips and I began trying to develop my writing skills. I had never written well enough to win awards for penmanship, but now I made very large, scrawled letters. Eventually, after a great deal of practice, the letters became smaller and a bit more legible and even got clear enough so that I could write letters to friends and do my schoolwork. I had not been writing for very long when the March of Dimes director called to say that the Kiwanis Club was willing to pay fifty dollars to get a used typewriter for me, if I wanted it. If I wanted it! Of course I wanted it. I did not know exactly what to do with it, since I had never typed in my life, but it seemed only logical to try to learn to type. When the typewriter arrived it was one of those huge, heavy office types made by IBM many moons ago, and every time I hit the return lever the roller flew back with such force that I was certain it was going to knock me to the floor. I loved it! If my arm was lowered to the level of the typewriter, my fingers could not reach all the keys, but I found that if I held a pencil I could hit one key at a time with the eraser end as my arm swung by the keyboard. I could type. Yes, I could type. It was slow, but I had no deadline and could get quite a lot done. Then, in the early '60s, I began to see IBM ads for a new machine

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called a Selectric, which looked exactly like what I was sure I wanted and needed. I called for a demonstration and it was great. That typewriter was light years ahead of my old one. It was truly love at first strike. When the salesman came to pick up the demonstrator, he seemed to have doubts about the wisdom of my buying the machine, making it necessary for me to convince him that he had made a sale. Convincing done, I did get that typewriter, and a wonderful IBM engineer maintained it for years and also helped me to get many of the golf balls that provide different kinds of type. By placing a block behind the typewriter, I could put the paper into the machine myself, and once everything was in place I could type for hours unassisted. I was able to sell my old typewriter, and that Selectric lasted for years and years. To my dismay, the day came when my Selectric would no longer type and could not be repaired. I shopped around and soon learned that I could not afford a new IBM, but I found a Canon that appeared to be able to do what I needed. I had had it for less than a year when it met with an unfortunate accident, breaking it, along with my heart. I talked with a dealer about repairing it but was afraid it would never be the same. He said that, if I preferred, they would buy and repair my old one and give me its value off the price of a new one of the same model. He then told me about the next one up the line, which had a much higher price tag as well as a memory, a dictionary, and other new features. After calling the salesman to say that I needed none of those features, I purchased the typewriter and today can't understand how I ever survived without it. Some of these unwanted and unneeded features have proven to be real lifesavers, and I am constandy learning more about how to use them more effectively. The dictionary does tend to anger me because it beeps at me to tell me when my spelling is wrong but refuses to tell me what is right. Typing remains one of my greatest joys, but I can no longer insert my paper. Whatever I do takes longer and is generally more difficult than before. I recently put my typewriter away for a couple of months, and when I returned to it I could note a marked increase in the degree of difficulty. Post-polio syndrome must understand that typing is one ability that I will fight long and hard to maintain because it adds a dimension to my life that would be sorely missed should it be lost. One Sunday afternoon in the early '60s, I decided that it was high time I started making some kind of effort to feed myself. Gerry had gotten a sling made especially for that purpose, but it had remained in the closet for a very long time. We now put a box on my flat board and set a small

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bowl on the box. We tried a fork to be used on a banana and a spoon for ice cream. I swung wildly, hitting everything except my mouth. My nose was covered with ice cream and the banana kept sliding off my fork, but after a long, exhausting afternoon I did control my movement better and successfully hit my mouth with a bite of banana. That was the best banana I had ever eaten! For a number of years thereafter I was able to feed myself, but long before I ever heard of post-polio syndrome that ability was completely lost. At that time I attributed the loss to the fact that I had recently started sleeping in the iron lung and thought the tight collar might have done some nerve damage. I was troubled by that loss, but had no idea that it was to be the first of many losses. About the time I mastered feeding myself, I also went to work on dialing the phone. For all the previous years I had held onto the receiver while someone else dialed my numbers. With many other things to do, the person dialing my numbers often had to dial while on the run, and when one conversation was completed I just had to wait until someone could return and dial my next number. I accepted that the incessant beeping in my ear was a part of the price to be paid for making phone calls. When my nephew and niece were small, I could pay a small fee, violate child labor laws, and have my own personal dialer for hours, but I knew it would be much better and certainly more gratifying to do my own thing, unassisted. We put the phone on a small box and placed the receiver by my ear. When I began dialing, I found that I could dial only the first four digits. I had either to give up calling my friends or else find new friends whose phone numbers consisted only of numbers from one to four. But I still kept trying and told Lois what I was doing as I set about trying to reach her. The last digit of her number was an eight; time after time I would dial the first six digits and become very excited thinking I had it, whereupon perspiration would drip from my hand and the dial would slide back, short of the eight. That went on for a very long time, but finally, late in the evening, I dialed the entire number. At the end of three or four hours I was completely exhausted but exhilarated because I had dialed one whole phone number. Emotionally spent as well, I talked to Lois, hung up the phone, and cried, but I believed that somehow I was on my way, and I was. By practicing and learning the dial backwards, so that rather than looking at the actual number dialed I followed the hole in the dial to the proper location, I was soon able to dial with a remarkable degree of proficiency. There were those occasional wrong numbers, which sometimes led to rather lengthy conversations. Hey, I was dialing the phone; the person on the other end was incidental to the whole.

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My only real problem was that keeping the receiver perched precariously on my shoulder led inevitably to its falling to the floor, often in midconversation. I called the phone company to see what could be done about this annoying inconvenience. That was in the good old days when one phone call could actually accomplish something. In a very short time, customer service representatives and engineers were on the scene and decided that I would either have to lie on the floor, where my ear would be near the receiver, or get a headset. We agreed on the latter and it worked beautifully. But nothing good lasts forever, and I gradually lost the physical ability to dial numbers. However, I could hit the operator button on the new touch-tone phones, and the operators were willing to get my numbers for me. To prevent being billed for this service, I was told to give the operator my name and tell her that I was disabled. That procedure worked very well except for those times when the operators responded with, 'Thank you, Miss Able." When I heard that, I knew that call would be on the bill. In a more serious matter, it happened the girl who was staying with me needed to go upstairs to her apartment for just a minute and I assured her that since I had the phone I would be fine. Of course, the minute she walked out the door, my hose came apart. I breathlessly called the operator, giving her the number and the reason for the urgency. Her answer was "You can't breathe, or you can't read?" But I did get the number. The phone company folks had made many things possible for me, and they remain some of my very favorite people, because even on those rare occasions when they are unable to help they will, at the very least, entertain. When I tried oil painting, which was a real joy, everything was arranged in a certain order so that I could reach all my supplies. I could not clean brushes as I went and was never able to mix colors without making a mess, so that problem was solved by using more than one brush of the same size. I often put extra brushes in my mouth and kept them there until they were needed. When I began using the respirator with the mouthpiece, that was no longer possible, but now that the trach is in place my mouth is again free. When last I tried to paint, my arm had been sufficiendy weakened so that I could no longer reach everything, but I am hopeful that someday I will try again and find a way to make everything work, because painting brought some of my happiest moments. The prospects for success do not look good, but they are not completely hopeless. These are some of the things I learned to do that are being systematically altered or eliminated by post-polio syndrome. My list of accomplish-

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ments might seem rather meager to others, and indeed they are, but these activities, which have not come easily, have certainly meant a lot to me and have brought many happy hours. My vow to myself is that they will not be lost easily to post-polio syndrome or to anything else. The real problem is that I have absolutely no idea what to expect or how to prepare for batde because so litde is known about the syndrome. While there is interest among some physicians, especially those who deal with people like me, the urgency is not there because the number of people who are affected is quite limited and, thank God, our numbers are not growing. I hope that when those of us now struggling with this phenomenon are gone, the mystery of post-polio syndrome, if not solved by that time, will go with us. My greatest setback came with the loss of muscle tone that led to obstructive sleep apnea and necessitated the trach. Now, with time and distance between myself and those traumatic events, that no longer seems like the end of the world. While I wait, I am trying to do as much as I can as fast as I can. I just can't spend my time fretting about possible future damage, and surely there will always be a way to do something.

ιό. People

As my special world has sent me to hospital rooms in many different areas, I have had a number of encounters with some very interesting people. Some have been brief bright spots in my life, others have had a more profound effect, but each has been interesting and special. When I was first hospitalized and put into the iron lung, I was placed next to a litde girl who was only four or five and was simply beautiful. She was so very sick and her breathing was so difficult that she needed to have positive pressure used in conjunction with the iron lung. That meant that someone, usually her mother who was also a nurse, had to sit and time the positive pressure to coincide with the inhalation cycle of the iron lung. When I was moved away from my room, I kept up with her by making frequent inquiries as to how she was doing. I was always told that she was doing well. Because the epidemic of polio was so widespread, there were frequent news reports on new cases and fatalities. When, one afternoon as I was listening to the radio, I heard that she had died, I was very hurt and upset. I was hurt because she had died, even though I had only known her for a very short time, but I was also upset because my family had not told me of her death. When I asked why they had not told me, they explained that they were only trying to protect me. I understood, but certainly did not like it and said that I would rather be told the truth about anything that happened. That incident established a family policy of complete honesty in such matters from that day onward. The impulse to protect me from such brutalities of life was overruled by the obvious need for me to have absolute trust in those who had to answer my difficult questions about the lives of those around me and about what was happening to me and what my fate seemed likely to be. There were those who did not understand such total honesty and wanted no part of it, but it prevailed. I spent a great deal of time, during my initial hospitalization, with two guys only a little older than I who both had the same name. To distinguish between the two, we referred to them as Big Don and Little Don. After we returned to our homes, Big Don, who was very close to me, was

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the first of my polio kin to die. I talked to his nurse, who told me that he had a beautiful death. That phrase threw me for a loop, because at that time my views on death were quite different from what they eventually came to be. I viewed death, in every case, as an enemy that must be defeated no matter what the cost in suffering and had not come to see that there were situations where death could be a welcome friend. I knew that Big Don had suffered terribly with complications from kidney stones, but it was a very long time before I understood, or accepted, the idea that something that took him from me could be described as beautiful. Big Don's death forced me to rethink the whole issue of mortality, especially my own. I can think about it and see that death can be a friend. I can read about it and understand that there is and must be a place to stop the heroics and end the fight to delay death. But when I am involved, I will fight and fight to live. Litde Don moved to another city, but we corresponded until his death several years later. Litde Don was a sensitive, caring young man who had been very active in his church. Once I was having a particularly rough day because the nurse was opening my iron lung and forcing me to "free breathe" fifteen minutes out of every hour. Of course, I couldn't really breathe, so I just lay there and turned blue until she decided to close the lung, always just before I passed out. When Litde Don's mother came in to see him, he was in tears, saying the nurse was going to kill me. I was no longer responding to the cruel actions of the nurse, but Litde Don's report initiated action that put an end to free breathing for that day and probably saved my life. As the years went by, the harshness of the world took its toll on Little Don and he wrote saying he could no longer accept the faith of his fathers and simply could not understand the hatred that seemed to fill the world. He was especially upset over racial hatred and hatred directed at children, but he held onto his hope that man's love for his fellow man would somehow conquer the hatred that he felt dominated the lives of so many. He expressed these ideas eloquendy in long letters that took hours to type because he typed by using a mouth stick. Some encounters resulted in no friendship but left a sense of sadness. A tiny lady had been brought into the ICU because she was in the acute phase of alcohol withdrawal. There was also on hand a short nurse who worked the evening shift. Because the litde alcoholic lady had been quite wild, she had been placed in soft restraints so that everyone, including her, could get some rest. One evening, as I lay there half asleep, a short person, whom I assumed to be the nurse, reached up and took scissors from the

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shelf just above my head. I looked around to see the small patient, gown flying in the wind, turning to leave, scissors in hand. At that instant her intern, whom she intensely disliked, started to enter the room. Acting on impulse, I called to him and told him that she had scissors, without thinking that my head sticking out of the lung would have made a very good target and that I was totally defenseless. Luckily, she ignored me, choosing instead to go after the intern, who had backed out the door and found a linen cart to place between himself and his would-be assailant. For the next several minutes, which seemed more like several hours, they went up and down the hall, as he tried to calm her while she made pronouncements about surgically removing certain parts of his anatomy. I would not want to accuse anyone of cowardice, but the respiratory therapist who had been working in the unit ran into the blood room and locked the door, while all the nurses locked themselves in the conference room. Eventually security arrived and four huge men escorted the tiny woman, who could hardly be seen, into the room. Later that night she was removed to another, more private room, which gready relieved me and others. During that same hospitalization, I once saw something go by my window and asked what it could possibly be. I was subsequendy told that there had been a man on the floor above me who had been terribly confused and rowdy and had therefore been placed in restraints. In keeping with the state law, the restraints had been removed for a certain length of time, and, this time, when they were removed, the man had walked out the window to his death in the parking lot below. The important thing was that he had died with all his rights protected. Leaving the hospital after these events was especially gratifying. For a long time I had no exposure to an actual attempted suicide, but I had a lot of ideas, all of which had been formed in a vacuum. I believed suicide to be morally wrong, but I was certain that my sympathy for those who wished to take their own lives would be unbounded. I would surely have limidess compassion. Naturally, I eventually found myself beside a young woman who had attempted suicide. I was so angry! I felt no pity for her. I felt nothing but anger. She had failed on her third attempt to end her life. As on the previous attempts, she had taken a lethal dose of phenobarbital and then called her family to announce that they wouldn't have to be bothered with her anymore. Why? As before, they searched the city until they found her and rushed her to the hospital. Why? As she lay there, unconscious, her blood being washed through dialysis in an effort to remove the impurities,

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I watched her and wondered just how, when I had to fight so desperately to live, she could conclude that she was unhappy and therefore had the right to end her life. At first, I didn't say anything because I was surprised by my own feelings and felt sure that they were unshared by others, especially the medical people. One morning one of the professors came in with his entourage as they were making rounds. After asking for and receiving her history, he shook his head and declared that there was no excuse for her situation. A starded resident asked if he had joined the right-to-deathcommittee. He replied that, if she were really serious, all she had to do was go somewhere where she would not be found for forty-eight hours, wash her phenobarbital down with some wine, and have her wish. I agreed. I don't know what happened to her and, although time and exposure to other such incidents have softened my attitude somewhat, I have never reached the point where I have any understanding of such action. I have tried hard not to look at suicide in a personal way affected by the fact that I must fight and fight hard to live; but what gets me confused is that I hear over and over that the attempt is a cry for help. If that is true, then it seems to me that it would be much simpler and easier for everyone concerned if the person just asked for help—with words. I have watched many people with self-inflicted problems and could not help but contrast their situation with that of others who, apparendy through no fault of their own, seemed to have enormous problems. I know that we bring about health problems with overeating and other bad habits, but this does not seem the same as deliberately overdosing or putting a gun to one's head. I met a young woman in her thirties who was the mother of three litde girls and had done nothing to impair her health but nevertheless found herself in a terrifying situation. Her ordeal began with nothing more serious than flue-like symptoms, for which she was hospitalized. As her condition worsened, she was placed on a ventilator and underwent exploratory surgery. Repeated efforts to get her off the ventilator were unsuccessful because things just kept going wrong. When she was finally taken off the ventilator and moved to rehabilitation, she had spent nine months in ICU. It is difficult, indeed impossible, to reconcile some of these situations with the way things should be, but I stopped trying to do that years ago. I met a young, idealistic student, and a strong friendship developed between us. We had long, serious discussions about many things, ranging from whether he should or should not serve in Vietnam to the morality of

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killing a roach. I was not totally comfortable with some of my own beliefs, and, largely through the influence of the student, I had to decide which way I really wanted to go on a number of issues, among them pacifism (for) and capital punishment (against). After long periods of discussion, study, and serious soul searching, I came down in favor of preserving life, period. I think that largely because I had watched so many people fight so hard to maintain life, it simply became impossible to give support to the taking of life under any circumstance, be it war, punishment, or suicide.

17. Doing and Being

Many people have helped me do so many things, and without the help and support that have come my way I could do nothing. I am sure that without them not only would my life have been much different, but the difference would have had an ill effect. I believe those familiar proverbs about not looking gift horses in the mouth and not questioning the motives of others, and so on. Yet, while I try not to question motives, it is impossible to be completely oblivious to certain statements that often, intentionally or unintentionally, seem to convey a sense of motives. It is well known that the world is divided into two kinds of people: those who divide the world into two kinds of people and those who don't. Many of the people who come into my life can be separated into two groups: those who want me to do whatever I want to do and be whatever I want to be and those who want me to do whatever I want to do and be whatever I want to be so long as it agrees with their concept of what I should do and be. I can understand and even respect some of these reactions, especially when they are an outgrowth of legitimate concerns for what someone else perceives to be my well-being. Even though I become frustrated with what I consider unreasonable and overstated concerns, I do try to understand. As I tried to learn how to do certain things for myself, there were times when my Dad would try to discourage me from making the initial attempt. Although his outlook generally was negative, I sincerely believe that his central motive was to shield and protect me from any hurt and disappointment that would result from possible failure. He, for reasons of his own, chose not to take very many chances with his own life, and he wanted everything to go as smoothly as possible, so he sought to prevent me from trying things that, if successful, could bring great joy but also carried with them the risk of great sorrow. He really wanted me to be what he wanted, unhurt. Despite his personal feelings, once my decision was made to go ahead with whatever, he would subordinate his feelings and move heaven and earth to help insure a good outcome.

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My mother, whose attitude was much more positive, would encourage me to do and try anything, and if the effort resulted in tears, she would wipe them away and then try to give me the strength and the courage to try once more. Of course, she never failed to tell me when she disagreed with the implications of something that I planned to do, but once she had given expression to her thoughts, she always backed my effort. She truly wanted me to be all that I could be and to do all that I could do with no strings attached. Two elderly ladies from a nearby church came to see me quite often. While they were both very dear, one became a good friend and the other became so close that I referred to her as my adopted grandmother. The first lady would come by and announce that she came because that was her day to visit the shut-ins. She was lovely, but I always felt that she wanted me to be a project because that was what she needed me to be. The other lady never gave a precise reason for coming, but it was clear that she cared as deeply for me as I did for her. Wasn't that enough? We became very close, and I really loved her because she asked only that I be a loving friend. Some of my dearest friends and strongest supporters are people who are very strong-willed, and from time to time they feel compelled to tell me that I don't want to do a certain thing that I do want to do. Once I convince them that I do indeed want to do it, they are willing to give unselfishly of themselves to help me with its doing. Because my will is not exactly weak, these encounters can sometimes lead to the point of definite disagreement, but we make every effort not to become disagreeable in the process. Once these issues have been setded, they have often led to great joy. One of my dearest friends looked at my van when I was contemplating buying it and told me that, although she knew I wanted a van, I surely didn't want that one. A day or so later she called from a litde town to tell me that she had gone van shopping and had found one she thought was better. I insisted that I did want the original van and got it. Issue settled, she has driven me miles and miles in the van that she tried to convince me I didn't want. She and others like her clearly want me to do all that I can do, even when they disagree strongly with the way I choose to do it. When my mother died, I wanted to stay at the funeral home and watch as they closed the casket and then remain at the cemetery until the grave was completely closed. One of my friends, who said he could never do that, went to the funeral director and arranged everything so that I could do exacdy what I wanted. Two other friends, although unsure of

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the wisdom of what I wanted to do, stayed with me until the last piece of sod had been put into place. When I tried to learn how to paint, one woman who set out to teach me some basics told me a number of things and then watched as I tried to carry out her instructions. I was very slow and thought there should be clear lines, rather than blending; so she grew impatient and took the canvas board and painted what she had been trying to teach me to do. Though it looked very nice when she finished, the experience taught me very litde. Another friend sat beside me for hours and did anything I asked her to do in order to make it possible for me to put the paint on the canvas, but she did none of the painting. She would take a separate canvas and paint on it to show me certain things that needed to be done; but as I put the paint on everything near me she just smiled, gritted her teeth, and told me to try again. She wanted me to be everything that I wanted to be and did everything within her power to make that possible. My new mobility brought with it some very clear lines of distinction in some of my personal relationships. This was especially true of those who either regularly or irregularly came to visit me at home. For so many years, with the exception of Sunday mornings and certain rare occasions, I had always been at home. Anyone could come to see me at any time and have the assurance that I would be there. For the most part, that was fine and I would have had it no other way. Of course there were those occasional visitors who were not my friends but came by for reasons of their own and, finding a captive audience, decided to stay. And stay. And stay. When, only a few years ago, I got my motorized chair and, one year later, my van, that scenario was drastically altered. Now I might be home, but then I might just as easily not be. Some of my friends, those who genuinely want me to do all that I can do, sometimes tell me that they called, intending to come over and see me, or just came by for a while and, it seems, were elated to find that I was gone. They are especially amused when they call to find that my sister is there and I am gone and she doesn't know where I am. That is so completely different from the way things were for so many years. Then there are those few who obviously want me to be what they want me to be, and when they tell me that they called or came by and I was not at home, they say this in a tone that is completely different from that of my other friends. Their way of telling me lets me know that they are a bit perturbed by the fact that I was not there waiting, just in case they decided to come by and see me. I have been genuinely amused by the different reactions to the fact

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that my undivided attention can no longer be guaranteed. Most people understand the importance of my getting out whenever I can and applaud the fact that so much of the world has been opened up to me. There are only a few who seem less than thrilled by the idea that I can now be somewhere other than where they want me to be. When I first became aware of these reactions, there was a bit of a struggle within because I really didn't want to hurt anyone, but I definitely wanted to get the maximum benefits from my hard-won mobility. Eventually I decided that, if there were a few who did not understand, I was regretful, but that I could not waste my time worrying about that kind of thing when a whole new world was out there waiting for me. It would be nice if everyone were as understanding as my friend who built my ramp. He came by to visit a couple of weeks later, but I had made plans to go shopping with another friend. I said a quick hello and goodbye and left him standing on the back porch. When I later offered a less than totally sincere apology for leaving him that way, he laughed and said to forget it, because, he said, that was, for him, one of the most rewarding visits he had ever made to my house. Nowhere is the distinction between the two groups more sharply drawn than in the medical field. There are those wonderful physicians like Dr. Rogers who will readily acknowledge that my physical capabilities are severely limited but, realizing that my brain did not die along with most of my nerve cells, will work hard to plant within me the seed of knowledge that will inspire me to learn about and fully participate in my medical care. They will not allow me to be less than I can be. And there are those like Dr. Skolnick who are willing and able to cultivate that seed and make sure that I do not slide away from doing all I can do, even though they know this will take more time and effort on their part. But there are other doctors who insist that I be only what they want me to be, an easily pliable "patient" who asks no questions and has implicit trust in their every decision. For some strange reason I have yet to understand, the doctors and would-be doctors whom I have encountered with that attitude have been quite brilliant when dealing with "textbook" medicine, but when confronted by certain human situations they seemed to be at a loss as to how best to deal with them. I vividly recall one hospital admission when I asked the intern who was writing my orders to please keep a watchful eye on my bicarbonate level, because I felt that I was in a situation where it could easily drop, causing me to become acidotic. The following morning I was quite acidotic, but not too sick to have a fierce argument with him because I felt that he had been forewarned and there

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was no reason my condition should have reached that point. Later in the day a few interns and residents came by and talked to me about the incident, which had become hospital gossip, and, while they expressed a certain amount of glee that someone had finally taken him on, they were nonetheless quick to point out that he had been a 4.0 student. My reply to that was: So? Doctors who have that superior attitude are not going to help others be or do anything, not even get well, but those men and women of medicine who have an understanding attitude can do much more than simply dispense medicines. The people of medicine fall into two special groups. Some want me to be a docile, undemanding patient, content to sit in front of a T V and vegetate. After all, they gave me a bath, didn't they? What more could I expect? Others seem to understand, without being told, that if they are willing to exert a little more effort, they can help to make many things possible for me and help me to be a full participant in life, which is really all I want to do and to be.

i8. Caregivers

In 1954, after twenty-one months spent in three institutions in two cities, a period during which my world had been turned upside down and my life changed forever, I was returned to my new home in Louisville. My childhood was gone and, while I was far from being an adult, my illness had aged me in its own way. I could do absolutely nothing for myself, my freedom and independence had been snatched from me, and I was forced to depend on others for everything that I needed and wanted. I had to begin making decisions and dealing with problems that most adults never have to face. Someone had to assume the responsibility for meeting my every need. While my mother was willing to do all that, the director of the March of Dimes advised her that my care would be too much for her to handle alone, suggested that she find someone to help her for a few hours each morning, and said that the March of Dimes would pay for this. For the next seven years two different ladies, both motherly, matronly types, helped to provide my care. They were only on hand for a few hours each morning, so they were something like friendly visitors with whom I could chat for a while before they went on their way. If they failed to do something exactly as I preferred, or if for some reason they could not get here, it was no big deal because Mama fixed whatever needed fixing and did whatever needed to be done, and she did everything related to my care perfectly. While in those early years I was never concerned as to whether or not they came, in later years I became very concerned if a snowflake fell, and tried to impress upon the caregivers of the day that the only valid reason for not being here was death—their own, and that only by permission and a notice of at least one week. When the polio vaccine, for which we were all so thankful, was developed, there was a widespread myth that the polio "problem" was over. The result was that, during a period when the need for post-polio care decreased by 5 percent, contributions to meet those needs fell by 50 percent. Obviously something had to give, and the first something to go was financial help to provide caregivers. We could not afford to pay someone

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to come in every day, so Mama began providing my total care pretty much by herself. The other members of my family helped, but the everyday grind became Mama's alone. After fourteen years of constant care and vigil, Mama's age and her own increasing health problems had obviously caught up with her. She could no longer provide my total care, and it was obvious to everyone that something had to be done. But what? How? Who? My eyes told me to do something to find someone, but my heart told me that my mother could not be mortal and subject to the frailties common to the rest of humankind. Beyond that, we simply did not want or need some stranger to intrude on our special world, a world in which so very many things had been shared by just the two of us. Some of my dear friends solved the financial part of this dilemma by letting me know that they would take care of my need. Finding a competent person was to prove much more difficult. I even questioned whether it would be possible for me to continue living at home. I had always thought that, if and when the day came that such a move had to be made, I would know that it was the only option open and therefore would be able to handle it. Now I found that I could not even deal with the thought and certainly not with the deed. Thinking there had to be some other way, I reluctantly took to the phone in an effort to find someone, somewhere, somehow who could help. This was a very frustrating and lonely time for me. Even though Mama and I had shared so very much, I did not feel that I could really discuss the situation with her because she already felt as bad about it as I did. The last thing I wanted to do was add to her unhappiness. For reasons that were never totally clear to me, it seemed that no one in my family was willing to discuss the situation with me. I spent long afternoons on the phone in an effort to find the person that I really did not want, made notes and looked for other possibilities in the evening, and then cried myself to sleep. Eventually, when I felt totally exhausted and had run out of ideas, a nice lady was found who stayed with me for four or five hours a day for the next eight years. She was a dear person and was the first in a long parade of caregivers. Some were full time, some were part time; some lasted days, some lasted years; some became friends, some became enemies; some worked for agencies, some were self-employed. It was my task to choose the good ones rather than the not-so-good ones. I have never, after more than thirty years, found a formula for asking the right questions or making the proper observations to determine who will make a good

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caregiver. Some who appeared to have great potential have turned out to be real disasters, while others I thought would do only until someone better could be found have been rare gems. It seems there is always some question that is omitted. I have had caregivers who stole from me, but it never occurred to me to ask during an interview, "Do you steal?" My assumption was that they did not, but if they did they surely were not going to tell me ahead of time. Sometimes simple conversation can be a problem, because the agencies tell their people not to discuss anything personal. That is much easier said than done and is usually the first rule to be broken, because, when you share the same space for several hours a day, discussing the weather gets old in a hurry. Then there are all the things that drive me batty. There are the caregivers who insist on brushing teeth crossways, or leaving the seams on pant legs twisted, or combing my hair the way they want it, or leaving my blouse or sweater pushed up around my ears—and the list goes on. Usually, after being told, they will correct their ways, but I often wonder why they must be told. They know to straighten their own clothes. My greatest problem with the need for constant care has been the total loss of privacy. There is absolutely none! There is nothing that I can do without someone else knowing about it. It is not always the big things that bother me, because after so many years it sometimes seems that I could get my bath in the middle of the street and it would not bother me. But when I hang up the phone and find myself under interrogation about the who, what, and why of my conversation, or have something that I said repeated back to me, it drives me crazy. I fight to maintain the privacy of my mail, which is one of the things I hold most dear. It must be mine! There are certain matters that my family and I might want or need to discuss that simply have no reason to travel outside the family, and there are times when I just want to be alone with my thoughts aind feelings, or want to laugh or cry, without explaining my reasons to anyone. I am by nature a people person and love having people around me, but there is a deep desire, as well as a need, to have some time alone. Of course, that desire and need must be balanced with safety considerations. The frustration of always having someone breathing down my neck pales when compared with the hazard of not breathing and having no one near. Finding some way to balance these two needs has been one of the biggest challenges I have had to face. When my motorized chair became a reality, it was certain that it was the answer to this challenge. Although it has been an immeasurable help in certain ways, there are other ways in which it has

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added to the problem, because the added mobility makes it possible for me to get into added trouble and cause added stress to those looking out for my safety. Whereas caregivers were once able to "put" me somewhere and leave me with the knowledge that I would stay there, all bets as to my whereabouts are now off. Recently I had gone to visit friends at church and, when I returned from my wanderings, one of my friends who tries to look out for my safety told me she believed she liked things better when they could put me someplace and I would stay. Of course she was joking, but it does point up a problem to which I have reluctandy concluded there is no answer, unless I can find someone who will check on me only when I am in trouble. I can go outside alone, but if I stray too far my absence can create panic in those who are caring for me. Once, after I had strayed farther than my caregiver thought safe, she became very upset with me, telling me that I was going to die or get killed and that she did not want to be responsible for my demise. I countered by saying that I must have some room to breathe, meaning the maximum amount of freedom possible and, if I died in the effort, so be it. I have concluded that, given my nature, I would rather smother than be smothered. Some caregivers have been selfless, giving, wonderful people and have brought a great deal of joy into my life, whereas others have hurt me deeply. No doubt they would say that I have done the same to them. I am grateful to all those people who, for whatever reasons, have been willing to spend long hours with me and have done their best to meet my needs. For the most part they have been decent people trying to do a difficult job, and I try to remember that when, at times, I view them as nothing more or less than a necessary evil. The greatest of my caregivers have worked long hours, with no schedule and no pay, and they have done an absolutely fantastic job. They are, of course, my family.

ΐ9· Faith Healing

In 1988, because I had been despondent for several months and seemed to be getting worse, I decided to follow Dr. Skolnick's advice and read Love, Medicine, and Miracles. As I read, I became convinced that Dr. Skolnick had not completed reading the book before making his recommendation. He later confirmed my suspicions, saying that, at the time we discussed it, he had read only the beginning about positive attitudes and all those good things that we all know to be a vital part of any battle in which we engage. Although the book did include positive attitudes and other ideas that I could easily embrace, it went much further than that. Reading the book also helped in that it made me angry, and feeling anger is much better than feeling nothing. The anger helped to shake me out of my complacency and end what had been a total lack of caring. As I read about how the good doctor had helped his patients to selfhealing, my first thoughts were of two very dear friends, both of whom were named Bill. Both of my Bills had cancer, both had absolutely fantastic attitudes, both had the best available medical care, both were surrounded by loving families and friends, and both died. I think it is insulting to say of men like those who fought so hard, suffered so graciously, inspired so many, and represent many others just like them, that they died because their attitude or something else under their control was just not good enough. Such platitudes place a terrible burden on individuals who are already faced with overwhelming circumstances and usually feeling some degree of guilt, as they struggle with the question of whether they are responsible for contributing to their unhappy situation and trying to answer the unanswerable question "Why?" As I tried to understand exacdy what was being said and the attitudes behind it, I was immediately reminded of those who call themselves "faith healers," because the attitudes are identical. For years these people have barged into my life, unwanted and uninvited, always bringing with them the same message: (1) we will have a miracle; and (2) just in case we don't have a miracle, it is only because I lack faith. Although I had attended

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church all my life and had accepted Christ as my Savior at a very early age, there was nothing in my background to prepare me for these people. A few years after I had polio, a "healer" sought me out after reading a newspaper article about me. She told me repeatedly that I had been crippled long enough, and that sounded good to me. I felt that, if such things had some kind of time limit, mine had certainly been reached, because any length of time spent deprived of a normal life, whatever that is, is time enough. In the middle of her performance, my mother, who always wanted so badly for things to be different, had an asthma attack, so the "healer" turned her attention from me to my mother. She put her hands on her, which is the last thing people want done when they can't breathe. Mama asked that the doctor be called, and, with Mama gasping and me feeling hurt, frustrated, disappointed, and angry, the faith healer who had come to our door to bring healing went on her way, leaving a shambles behind. Much of my spiritual faith had been developed not in the classroom but in the emergency room, where I had watched as godly people had been brought in with terrible problems and handled them beautifully, in a way that gave eloquent testimony to the faith that strengthened them. Others entered cursing their fate and exited without change, even though their problems did not always seem that monumental to the outside observer. I was reminded of St. Matthew's words that God sendeth rain on the just and on the unjust. I had come to believe that we are creatures of an imperfect nature and that much of what happens to us is determined neither by God nor by our own actions. Not the original action but our reaction to it is, I believe, of paramount importance. I knew and deeply believed this; but when someone came along telling me that I could breathe, walk, and do all the things that had not been possible for years, I was ready to try it. Time led me back to my original belief that my faith was there to sustain me, no matter what my circumstances might be at any given moment. What it is not is some kind of magic wand to be waved about in times of stress, assuring that everything will be as I, in my finite knowledge, wish it to be. But knowing and believing did not take away the mental and emotional pain that came with my crippling. Neither did my "acceptance" end the wishful thinking that, somehow, things could and would be different. For long periods I would be at peace with my situation and then suddenly decide that it really should change. At times I would be feeling good and decide that, if I really was determined enough, I could

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force the issue and make my muscles somehow respond in a normal way. One day, as my parents were lifting me from my bed to my chair, I persuaded them to attempt to stand me. I told them I just wanted my feet on the floor, but I sincerely believed that I was going to be able to stand and walk. I wanted to surprise them, but, needless to say, the surprise was for me, so I tried to figure out what went wrong. My conclusion was that my parents did not get me straight enough, so that my muscles failed to respond. I never told them what I truly believed would happen nor how deeply I was hurt by the failure, because it would have hurt them even more than it had me. Hope dies slowly, but it does die. It has been years since hopes of total physical well-being have crossed my mind. For one thing, I probably couldn't handle such a drastic change. Once I got control of my beliefs and feelings on these matters, I found I could handle those who came to heal me through faith. As soon as they mentioned my faith, I told them that we were not even going to discuss my faith but would stand or fall by theirs. Very often that ended the conversation and I just sat back and watched as they squirmed and looked for a graceful way out the door. Some of the healers are so determined to make their point that they care very little about the feelings of the person they are supposed to be helping. One fellow told me that I obviously liked being crippled and that God wanted me to be perfect physically. This despite the fact that he wore glasses. One encounter was with a deputy sheriff, and in mid-discussion my brother-in-law came in to tell me that one of my best post-polio friends had died during the night. I was very upset and began crying. The deputy started telling me how wrong my reaction was, how my friend was in a much better place, and so forth. I had to ask him to leave. I relate all this only to show the similarity between the faith-healer and the self-healer and how devastating their promise can be to the individual who is unprepared. Often it seems that one's faith in oneself and in one's Creator is about all that is left, and the faith-healer removes both. I have had far more love than any one person would ever have the right to expect, and also the best medicine to be found. While my life has been filled with wondrous occurrences that to me have seemed miraculous, that big event classified as a true miracle simply has not happened. Before, during, and after all the love that has come my way from others, I have always loved myself, so I do not see a failure to love myself as a miracle blocker. It is good to be reminded, from time to time, that no matter what

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our circumstances might be, we owe ourselves, as well as those who love us, the best attitude that we can possibly muster. This should have nothing to do with our physical condition. If we have a problem, be it a headache or cancer, we have no right to vent our frustration on those who had nothing to do with it and who are often dealing with their own deep feelings about our problems. Some of my doctors have appeared to be quite righteous, as opposed to self-righteous, but none of them has ever brought God into my room for a friendly chat. That suits me just fine, because if one decided to do that, I believe I would request a different doctor, even though the author of Love, Medicine, and Miracles would have me believe that, when one of his patients fails to respond as he would like, God literally enters the room with him and sets the patient straight. Although the book puts a great deal of emphasis on help from the other side, none of my dearly departed have ever appeared to give guidance and help, not even during cardiac arrest. I read books and watched TV shows dealing with self-healing, because I wanted to satisfy my curiosity and because it would be wonderful if such feats could in reality occur. I came away from this short-lived interest feeling that some very unfortunate people were following a charismatic doctor who promised to love them and that, perhaps, this promise met their greatest need. I have been very fortunate in that I have never had to choose between the doctor who was caring and the doctor who was knowledgeable, but if it became necessary to make such a choice it would be made in favor of knowledge every time. I will do my best to find someone to love me and I hope my doctor will care about me as an individual, but he does not need to hold my hand while I die and expect this to be an acceptable substitute for using his brain to keep me alive. It is not necessary for my doctor to hug me because there are other indicators that let me know whether or not he really cares. What is really necessary is that he use the very best medicine he knows. Love and medicine do not a miracle make; the true miracle is life itself, which becomes miraculous when, and only when, we accept it fully, problems and all, without dictating conditions.

20. Small Battles

Throughout my life there have been things I wanted to do or to have that really had very little to do with needs. I do not easily take no for an answer, for I believe that life should consist of meeting needs, simply because they are needs, but should also consist of meeting some, certainly not all, wants. It is our wants that bring zest to life and play such a major role in determining who we are and what we are all about. Our needs vary only a little, while our wants can and probably do change quite often. Many of my wants have taken on the character of small battles, and the battles have helped because they have served as a good training ground for the true wars of life. When Elvis Presley first appeared on the scene, I wanted very much to see him and when, in the mid '50s, I learned that he was coming to our city for the first time, my desire to see him became a near obsession. I had a very nice physical therapist who agreed to look into the matter and see what could be done. Her first contact was with the promoter and Elvis's advance man. They said that my attendance would be no problem and went one step further. Because Elvis would be here for two performances, they said I would be his guest at the afternoon performance and, since the stage would be in the middle of the auditorium, they said I would even sit on the stage. I could handle that. We were off to a great start! At that time I could not enter a large crowd without obtaining advance clearance from the public safety officials, so my physical therapist's next contact was with the fire department. The fire chief said he would not only grant clearance but also do anything possible to help. Her next contact was with the police department, where the officer with whom she spoke said he could think of no valid reason to deny clearance but, as we all knew, the final decision on clearance had to come from the chief. I had been on cloud nine and, with everything looking so good, I was in heaven. When, a few days later, the chief returned my therapist's call, it was a new kind of hell. He said that, because the crowds on Elvis's tours had been so rowdy, he could not guarantee my safety and therefore could not give me

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clearance to attend. He further stated that he was assigning as many officers as possible to control the crowd but that he was just hoping his men would be able to hold their line. He argued that if the crowd ever broke through they would surely trample me. When we tried to debate the issue, he said that if my parents would sign my death warrant he would give clearance. I was ready and willing for my parents to sign, but they were not. Elvis came and went, and the concert was incident free, as well as Regina free. A lot of things changed and Elvis appeared here many times, but I never saw him in person. One of my real regrets. When I first learned that home instruction would be discontinued, I wrote a letter to the school board, which, I was told, brought tears to the eyes of those in attendance. The press became involved, but the authorities refused to budge, saying that there simply was not enough money to finance home instruction as well as certain other programs on the chop list. Long after my completion of high school, by correspondence course, home instruction was reinstated. Please don't think that all my causes are lost causes, because they are not. The above battles took place before I learned how best to use all the available tools and before I became my own commander-in-chief in charge of conducting such affairs. I developed a keen interest in armor and decided that a visit to the Patton Museum at the Fort Knox Armor Center would add a lot to my understanding. Since Fort Knox is only about thirty miles down the road, it seemed that a visit there would be a really good outing. One useful tactic that I had developed was to forget the chain of command and start at the top. My reasoning is that if there is a "no" at the top, I will eventually get to it anyway. Why not find out quickly and get it over with before investing a lot of time and energy for nothing? If, on the other hand, I ask the person at the top and get a "yes," there is no one who can reverse that decision. Following that strategy, I wrote a long letter explaining everything to the then commanding general of Fort Knox. He wrote back and followed with a phone call in which he offered to send an ambulance with nurse, helper, and escort. We didn't need the ambulance but gratefully accepted his other offers of help, and Gerry, a friend, my niece, and I headed for the Patton Museum. A very nice major had been assigned to be our escort along with a sergeant to help him and a nurse who would stay with us. I had no batteries to last the full time, so extension cords were run to supply power and the sergeant was given the task of making sure that the cords were secure. I was busy looking at the exhibits when,

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out of the corner of my eye, I spotted the sergeant running. I watched for a minute and saw that he was pulling the electrical cord from one socket and then running to the next one. Fearing that something awful might happen to him, I asked the major to please tell the sergeant that I could breathe long enough for him to take a leisurely stroll between sockets. Everyone involved made it an absolutely wonderful day, and before it was over we had managed to turn what friends had told me would be about a two-hour outing into a highly enjoyable and informative six-hour tour. For a good while I corresponded with the major who had been our guide and he suggested that, because of my interest in armor, I should try to see the movie Bridge over Remagen, then in our area. I called the theater manager, explained my machine and equipment, and, after thinking it over, he said that he could not allow me to come because the noise of my respirator would create too much interference for the other people in the theater. Now I might have understood that attitude if the movie in question had been a quiet love story, but with World War II being fought on the screen, it seemed utterly ridiculous for someone to tell me that my machine would make too much noise. I protested, but the manager stood firm. It was not long afterward that the movie Patton came to local theaters and I had to go to the same manager for the same answer, "no." I then called the local newspaper people, who said they could not do much but would follow up for me in exchange for the story if I did get to see the movie. Then the manager, after the reporter had a chat with him, called to say that he had rethought his position on the entire matter and that I could come to see the movie. One of my friends went to the theater to check out the seating and decided that the place where I would have to sit was so close to the screen that it would be better to wait and see the movie when it moved to a suburban theater. My friend also told me that the theater manager was very happy and became friendlier when he was told that we would not be coming. A short time later, when the film moved to the suburbs, I got to see it, the newspaper got its story, and we all lived happily ever after, until my next batde. That movie was near the end of my armor education, but I found the portrayal of the general difficult to forget. In the mid '70s I became interested in the Eagles, a now-defunct rock group, and wanted to see them when I learned that they were coming here for a concert. When I called for tickets and explained that I would also need to use their electrical power, I was told that I could not attend. (So

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very much changed when I got my motorized chair, because it was then possible for me to carry lots of power with me.) When the people who said I could not attend held their position, I called a reporter who said he would come by the next day, but my initial impression was that he simply did not seem very interested. He did come by, got his story, sent a photographer to get pictures, and called to say he should have some response in a day or two. He then called the managers of the facility who had denied me entrance, adding that he had his story, which would run the next day. He explained that they could decide whether the story would say that I would be one of many Eagles fans in attendance or that I was the one fan denied admission. Needless to say, the managers were soon on the phone saying that they had found that it would, after all, be possible for me to attend. I went to the concert—a most enjoyable but totally uneventful evening. One thing that never ceases to amuse me is that whenever I call the press, hoping they can assist me, they always tell me that they can't force anyone to do anything. While I understand and agree that this is true they certainly are a powerful persuader and a very helpful ally. They have surely been the deciding factor in a number of my batdes, and I am very grateful that they were there to help.

2i. Family

I always knew, even as a child, that I had a very special family, but then I thought everyone did. The kids I played with seemed to have nice people around who were their relatives, and all of us had large families and close relationships with aunts, uncles, and cousins. Although my grandparents were no longer living, some of my friends had grandparents who lived with or near them, and many of them were like a part of my extended family. There has never been a time when I have not felt completely secure and totally loved. So strong has been this foundation of love that I have been told that I do not understand or relate to those who feel, righdy or wrongly, that they have been deprived of a loving family life. There is a grain of truth in this because the thought of not being loved is totally alien to me. My immediate family circle was made up of my Dad, who grew up in the small country town where we lived, did farm work for others when he was only a child, worked on the railroad for a number of years, and, for most of his working life, after I was born, was a woodworker; my mother, who grew up on a farm about two miles away with a large number of brothers and sisters, and who never worked outside the home; and my two older sisters, Lois and Gerry. Before I entered high school, Lois had moved to the city, married Allen, and had three sons and one daughter. I was very proud of my nephews and niece and, when the first symptoms of polio appeared, in the form of a backache, I suspected nothing because much of my summer had been spent carrying my infant niece or being the "horse" on whose back the boys had ridden until they could be successfully thrown. Once I was hospitalized with polio, I began to get a glimmer of just how special my family was, and for the first time in my life started to realize that not everyone had such a family. I soon learned that, in this new and hellish environment so alien to me, the rule of thumb was that if you had a family to keep close watch over you, spending hour upon horrible hour in hospital corridors and waiting rooms where they could stay to be

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near, your chances of survival were much greater than they were if you had a family that could not or would not make such an extraordinary sacrifice. Of course that rule was not carved in stone. There were those who survived despite being utterly abandoned by their families, and there were those who died in the face of heroic efforts by devoted families. My Dad kept small books in which he wrote brief entries about a variety of subjects of interest to him. Only on reading them after his death did I find an entry that really summed up the love and devotion of all my family. The entry, which was particularly heart-rending for me, read, "Regina was in the hospital for 422 days and I saw her every day." My family was willing to spend day after frightening day at the hospital, leaving only to eat and bathe and, on especially difficult days, not leaving at all. They spent their time with me, doing whatever they could to help with my care and, on those occasions when they felt that my life was endangered by the very people whose duty it was to protect it, they were willing to engage anyone in order to be certain that I was protected. The first tears that I shed after learning that I had polio were not because of that fact, devastating though the news was; those first tears were shed because, fearing the highly contagious nature of polio, the doctors had decreed that I could not see my sisters. There has never been any doubt in my mind as to why and how it was possible for me to survive the original, terrible onslaught of polio. Nor has there been any doubt as to why, in the face of monumental odds, I have been remarkably stable for long periods of time and have lived for as long as I have. When I went to Houston for rehabilitation, I was less acutely ill, more alert, and therefore more mindful of what was happening to those around me. I became aware of the beautiful little four-year-old who was brought into the hospital paralyzed from the waist down and was totally abandoned by her parents, who said they simply didn't want her anymore, not like that. I became aware too of the lovely litde girl whose very wealthy parents, apparently overwhelmed by her serious problems, chose to spend their time worrying and complaining not about her paralysis and her chances of survival but about her gown or about the fact that a nurse, acting out of necessity, had cut off some of her hair. But I also became aware of the cute little two-year-old, of Mexican extraction, whose obviously very young, quite poor parents came to see her every night after working during the day and always brought her something. That something might be a cookie or a bag of potato chips, but they always brought her something. She was being given the foundation to be a true survivor.

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Once I returned home, the real devotion began. It is my sincere belief that people can put up with and endure just about anything for a limited time, especially when they can see that at a certain point it will end. My family could see no end. Oh sure, there were those original expectations and prophecies that my life would be rather short, but the years kept piling on and I kept right on living. There was daily constant care, given without complaint. There were the restrictions placed on everyone by my need to have someone always there with me. Whenever I could not go, it meant that at least one other person could not go either. Everyone seemed immortal to me, and I never considered the possibility that I might live longer than anyone close to me, especially my immediate family, because I too had bought into the short-life theory. But then a favorite aunt, who had spent nights at the hospital with me until her own health problems made it impossible, died. Her death stopped me in my tracks because that was not the way things were supposed to be. I was the "sick" one and everyone, including me, knew it. After grieving for her and thinking about how things got fouled up, I decided that her death must have been some sort of fluke representative of the kind of accident that must occur from time to time, taking someone to death out of sequence. When I have tried and sometimes succeeded at doing certain things, it has taken long hours of working with me as I tried to learn whatever it was, and more long hours of putting everything into place to make the doing truly successful. Gerry had spent coundess hours trying to decide just what kind of gadget could be made that would make a given activity possible. And, when something was finally decided on, Daddy would make it. He made so many things that, when he died and Mama asked me if there was anything of his that I especially wanted, I had to tell her that there was not because I had a house filled with things he had made, each of which had some special significance. For her part, Mama was willing daily to get my gadgets and me arranged in such a way that I could "do" something, rather than sit there and vegetate. There have been those who said to me that I must have a lot of will power, and I have been forced to reply, with total honesty and without false humility, that I cannot attribute anything I did to will power, because I have never willed a typewriter onto my table or willed myself out the door. I think the source of what I do could more properly be called something like love power. Unless someone is willing to put aside personal preferences, I do nothing! I was blessed with a family that was willing to do exacdy that. My family members have been willing to take me places where, I am

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sure, they did not really care to go. Mama might have been the exception to that rule. She, like me, was always ready and willing to go, perhaps because she, on my account, was at home so much. Daddy and Allen even constructed a chair to be used when I had to be carried wherever I went. They were always willing to entertain my friends, and I am certain that if they had not made them feel so comfortable and so welcome I would not have the many close, loving friends that I have today. The importance of their welcoming my friends was brought home to me, with force, one time when I went to see a friend who was post-polio. We had just had our annual Christmas party and I was especially pleased because thirty-two people had attended that year. I was excitedly telling my friend about it, when her dad, overhearing me, harrumphed that if and when thirty-two people walked into his house he would walk out. I took so much for granted. As the years passed inexorably on, the lines in Daddy's brow grew deeper, the bend in Mama's back became greater, and her breathing became more difficult. I watched, with anger, what time was doing to them. I also wondered, to myself, just how much of their failing health was due not to time and nature but to my demands on them. They had, quite literally, given their lives to care for me and, in that effort, had made sure that we went beyond mere survival to the point where I truly lived to the fullest extent possible, without regard to what that monumental effort was doing to them. Now they were slumped and tired, so very, very tired. Gerry had devoted so much of her time to me that she had seriously cut into time that could have been devoted to more personal pursuits. Because of that, she never married and shared her love with a family of her own. Lois and Allen moved next door years ago and have remained there because they know how badly I need them to be near. In my brooding moments when I tend to question everything, I have to question what I have done to my family. I must ask whether they might not all have been better off if those prophecies of a short life for me had been fulfilled. It is impossible to be in my situation and not at some point question what you are doing to the lives of those you love most dearly. This brooding is not something that I do long or often, and I believe that is because my family gave me total and complete assurance that they loved me and wanted me, unconditionally. This love and devotion and the many happy memories they gave me would not be well served by allowing negative thinking to continue for very long. Now Mama and Daddy have gone to their reward, where I am certain that Daddy has hair and a smooth brow, while Mama

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breathes perfectly and has a straight back. Gerry and I live in the house that our parents bought and made our home when they realized that we would not be moving back to the country. Lois and Allen still live in their too-large house next door, where their children, now with children of their own, grew up. While the love and devotion given to me have in no way diminished, our family numbers have dwindled sharply. At times I look around and think I must have dreamed much of what has been my life. So much has happened that those faraway days when Mama and Daddy were alive and well, when Allen and Gerry were working, when Lois spent much of her time at PTA meetings, when I was thin with dark hair and thinking that my family would live forever, must have been a dream. I know that all the things we shared did happen, and I can only hope and pray that I gave them a small part of the love and happiness they gave to me, and that nothing we ever did nor the precious time we shared together was wasted.

22. Summer

How powerful remembrance is. It gives form and hue to memory; it recalls the magical kingdom of childhood and its lovely unworldliness. It seemed impossible to believe, but summer was over and you had to go home and prepare for the beginning of another school year. Today, when I started to type, it took a while to get started because, before I could begin, I had to remove the words that you had painstakingly put into the memory of my typewriter. I had to remove the nursery rhymes and the jokes that I didn't understand but had laughed at anyway. As I cleared the memory of my typewriter, the thought kept crossing my mind that nothing must ever be allowed to clear my memory of the happy thoughts and images that you had put there during the time you were here on your summer vacation. A lot of things are different now that you are gone and it will take time to adjust to the quiet that you left behind. The front porch is vacant. It looked much better on late evenings when you were jumping all over it, playing charades and commercials. I never did completely understand the rules and exacdy how these games worked, but I only needed to understand that they were fun. Almost as much fun as going up and down the sidewalk while you blew that feeble horn on my chair and pretended that we were off to visit some exotic place you had chosen. Our television is very different now that you are gone. It no longer shows cartoons and ancient sit-coms at a volume that can be heard down the street. I know that I fussed and called you boring and dull because you wanted to stay inside and watch your cartoons, but that was only because I wanted you to go outside with me. I love watching the sun bounce off your shiny hair, and I love to see the bright sun reflect me in your eyes. I love to watch you run until you fall over in the tall, green grass. You know you could never be dull or boring. Other children are playing games on the machines at the litde grocery next door, but those machines took their share of your quarters. We made a lot of trips to that litde store and could have made more if my chair had

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not developed mechanical problems. It was so much fun watching you decide how many pieces of candy you could buy with your quarters. You must learn these things, and the best way to learn must surely be by buying candy. And bubble gum. You did a very good job of budgeting the money you brought with you. You planned your purchases carefully, and when you were ready to go home the "if-needed" money that you brought with you was carefully tucked inside your litde suitcase. You were a good steward. The marble kaleidoscope will now be taken off the high shelf where my attendant placed it. She didn't seem to understand that many of the pretty litde things that sit around in various places were put there for you to enjoy. I hoped that you would take good care of my "treasures," but, if they got damaged or broken while making you happy and you really couldn't help it, then the smile on your face would convince me that it was really all right. My supply of candy and bubble gum, which I had carefully built up before you came, has been depleted. I hope you enjoyed it because it was placed there for you and it will be restocked before your next visit with all your favorite things like that dark, rich chocolate. The game that we argued about went with you, even though you had to be reminded to take it. I hope you will enjoy it, although we didn't understand the rules until the last night you were here. You were right in saying that some of those rules did not make a great deal of sense. The dolls on my bed are now staying in their place, their clothes all neat and straight. I bet they liked it better when there was someone here to push them over and knock their hats to the side or pull them over their eyes. I know I did. The little squirrel that I had tried to befriend now walks boldly into the backyard because there are no loud shrieks to scare him away. I guess he didn't understand the happiness conveyed by your laughter and noise. If you could have stayed, he would have come to understand that you meant him no harm, and he would surely have been your friend. The songs of the birds that come to eat and bathe don't sound as happy as they did when you were here. The badminton bird lies alone in the backyard with no one interested in it. The big ball is flat and both the water pistols are broken. There are still small pieces of the water balloons scattered here and there. Although we tried hard to send everything you needed with you, there is still a lot of evidence that you were here. I'm glad, because it would hurt too much suddenly to remove all those litde reminders that you were here and that

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you had a good time. I hope you had a good time, because when you are all grown up I want you to have lots of happy memories of this time. Grown up. I can't believe how fast you are growing up and how you are changing. Even though you needed a little bit of guidance, you did a real grown-up job when you made copies of some of my typing for me, and I saw mature caring when you solemnly asked if I needed to be suctioned when you were feeding that Popsicle to me. Those were very good Popsicles and I know that you enjoyed them because you ate them all up the night before you left. I couldn't go everywhere with you, but I did enjoy the places we went together, whether they were real or imagined. And now you have gone home, leaving me many happy memories of your tanned happy face. I know you were anxious to see your mommy and daddy and the two new kittens that had come, to be yours, while you were away. They need you to take care of them, and your friends need to laugh and play with you. When the chilly wind starts to blow here, I will be warmed by the memory of the soft summer breeze that was you, as you blew away the stale air that had come into my life. You will be back in the fall and you will return when the winter holidays get here, but there will never be another time quite like your lazy summer vacation.

23. Mike

In the course of my long struggle to create a life meaningful in its emotional and intellectual satisfactions, many people have demonstrated concern for and understanding of my wants. It is probably to be expected but still curious that almost all these good people fit into my own patterns of beliefs and desires. Sure, we don't all vote Republican, but there is a kind of central basis for living upon which we both stand and agree. And yet, into everyone's life there sometimes enters a person of different character and persuasions, of less emotional stability and certainty. When this person appears, each of us will find pleasure in the difference and each of us will have to unbend our own ways in order to enter into friendship with someone who does not subscribe to some of our most deeply held notions of the way life and people should be. Such is Mike. Like so many others, Mike came into my life in an effort to deal with a specific problem. Although I had been quadriplegic and in need of constant ventilator support for years, a motorized chair had given me the freedom to move around my neighborhood, and one of the things that brought great joy was visiting the small grocery store located next door. One summer day, as I prepared to leave the grocery, my chair stopped directly in the middle of the door, blocking all traffic. The only people in the store were the cashier, who quickly stated that he would be glad to help but that he knew absolutely nothing about motorized wheelchairs or anything else mechanical, and one customer, a fair-skinned young man with blue eyes, freckles, and thinning red hair, who introduced himself as Mike and quickly prepared to go to work. My first impression was that he, like the cashier, had no specialized knowledge of motorized wheelchairs, but he understood that there are certain universal truths about things mechanical and, without question, he had that most essential of ingredients—the desire and willingness to help. Mike set his one grocery bag aside and began his efforts to find the reason for my sudden loss of power. The cashier, though feeling helpless, did offer to help pull me away from the door so that traffic could flow

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once more, and he further offered to call my sister to explain the reason for my delay. Mike began removing battery boxes, checking wires and connectors as he went, and eventually found a connector that had somehow been broken earlier but had waited until that day and time to fall off. My sister arrived and, after the necessary repairs were made, she and Mike walked me home. I thanked him for his helpfulness and gave no further thought to whether or not I would see him again. Throughout that summer I did see Mike quite often and soon learned that the nice, helpful, young man, who possessed one of the warmest and most appealing smiles I have ever found, was an alcoholic and, when under the control of alcohol, could and quite often would become so foulmouthed and obnoxious that I could not tolerate being near him. There were times when I would see him coming down the street, cursing and mumbling at some imagined enemy, often swinging clenched fists through the air, and I would retreat to peace and quiet, making my hasty withdrawal before he could see me. On those occasions when I felt strong and brave, I would stay and give him a brief sermonette on the way he was living, trying to explain that it would be wonderful to see him as he could be, the nice, helpful Mike, sober and smiling. He would loudly proclaim that I must understand that he was the meanest man for many blocks around, maybe in the entire city, state, or country, and that I should not come near anyone so mean. I realized later that I was then seeing him as a walking, talking problem, rather than as a warm, loving person who happened to have a monumental problem. For me the person was obscured by the problem, a problem that seemed completely overwhelming and one with which I had never had to deal. Although I saw Mike frequendy that summer, I concluded that he was no different from many nameless, faceless, often homeless alcoholics who wander the streets of every major urban area. I knew that, as summer ended and I retreated to the inside warmth for the winter, I would not continue to see him, and my feeling was that it would be good not to see him because, smile or no smile, he had too many problems for me! Through the long winter, I occupied myself with things that did not require my being outside in the cold and gave no thought to Mike and my other fair-weather friends. As the warm winds of spring began to blow, I sat reading my Bible one afternoon, when in walked . . . . It was Mike, and he was quite drunk. After trying without success to straighten my fingers, which are drawn tighdy and permanendy, he stopped only when I convinced him that I could not endure the pain. He then offered a few

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suggestions for my reading edification and went staggering on his way. My sister, my attendant, and I laughed about the incident and considered it over. With the sun getting hotter and my time outside becoming longer with each passing day, I began seeing more and more of my wayward friend and even found myself looking forward to his visits, which were usually in the late evening. I never knew which Mike would appear on a given evening, because there were three very distinct, very different people who came to visit on those hot summer nights. There was the soft-spoken, really quite shy and slighdy ill-at-ease Mike, who would always be totally sober and who talked, almost exclusively, about work—carpentry and remodeling of some of the old houses that make up our area of downtown. At those times he was quieter in every way and his visits were usually cut short, not because I wanted him to leave but because he seemed too uncomfortable to stay for very long and soon found some reason to go. Then there was the Mike who, although not totally sober, had been drinking only slighdy and was quite loose, talking about a wide range of subjects, including his need to stop drinking and somehow to devise a strategy that would enable him to express himself freely without first drinking to remove his inhibitions. He readily agreed that he was reluctant to communicate without some kind of chemical reinforcement. There was no question that he would not ask, and for some strange reason I found myself answering anything and everything he wished to know, something I rarely do. One evening he told me there was something he wanted to ask but was reluctant to do so because he feared it was too personal. I told him to ask his question, and if it was too personal I would tell him that it was and refuse to answer. He would start to pose his question and then stop, saying it was simply too personal. After going through that process three or four times, he had me wondering if his question might in fact be too personal, so I told him to please ask his question or forget about it. After a bit, he blurted out, "How long do you think you will live?" I was underwhelmed after the long build-up, and answered that it would most likely be until I died. Later we had a more serious conversation about the fact that my life expectancy might be less than that of some people. Mike told as much as he asked, and often wanted to discuss religion, philosophy, and psychology, frequendy reminding me that psychology had been his college major and that he well remembered how to use what he had learned. Through him I learned quite a lot about our criminal justice system and its treatment of our alcoholic population. We agreed

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that there was a great deal of room for improvement, but it seemed that we always ended these conversations with more questions than answers. Even though I wanted what was best for him, which meant total abstinence, I must confess that the Mike who had indulged just a bit was more fun, more entertaining, and in many ways more endearing—a fact that gready disappointed me in myself but made me more aware of the underlying personality problems that contributed so much to Mike's alcoholism. When drinking just enough to remove his inhibitions, he was so easy and interesting to be with, warm and affectionate, eager to express his affection through a hug or a kiss. Never mean or abusive, always gentle and kind, loving and lovable. He would be willing to share his deepest feelings, the hurts and the happiness that made up his life. Evenings spent with that very special Mike, soft and caring, were a real joy and seemed to end all too soon. During those warm, happy times, it became easy to forget about that third Mike who would appear much too often—that totally unloving and unlovable drunk who would be shouting obscenities and interested only in telling me how mean he was and how he could prove it. Although he was clearly in pain, there were times when he was so nasty and obnoxious that it was difficult to see the hurting human, with skin like everyone else, who was hiding somewhere deep inside. Often visits by that Mike were cut short because I had to insist that he leave. Those were very difficult visits, because it is not my nature to be unkind to anyone and it honesdy hurt to insist that the person I had come to think of as a true friend should leave. I could never predict which Mike would visit me, but one thing was certain: he was never dull. As our friendship grew and developed, I would come to learn just how different he was from most of my acquaintances. I learned that Mike was filled with contradictions; that he could tell me one evening that he loved me because I was so smart and, on the next evening, tell me that he could not stand me because I was so stupid. To these extremes I tried to react with equanimity, knowing that the truth lay somewhere in between. Part of his appeal was that he did not, as do many people, hesitate to be physical with me, insisting that he feed me a tomato, hold my hand, just be himself, a man who liked to touch. He possessed a boyish charm and wide-eyed innocence that could be disarming if I forgot that those same eyes could flash anger and bitterness, hostility and hatred that were chilling, although I never felt personally threatened by him, believing that underneath all the gruff words he did genuinely care for me. I often wondered whether there might be some way to bury forever the

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anger and bitterness and keep that gentle, kind, but frightened individual who tried so desperately to hide behind a veneer of bravado and belligerence. One evening, as he was trying to convince me that he was truly the meanest man on earth, I said, "Mike, you are such a wimp." He flashed one of his best smiles and replied, "I know, but don't tell anyone." Another evening he insisted that the streets would not allow him to be gentle, would not permit him to be the person that I was insisting he should be. At first I strongly disagreed, but later decided that my moccasins had not traveled the lonely paths that his had trod, so I would not try to make such judgments. As our conversations deepened, some of the reasons for the contradictions became apparent and others remained locked in darkness. Mike spoke of a childhood of problems and injustices, but for the most part it seemed to have been a happy time for him, growing up in a family of eight. He expressed great love for his paternal grandmother, who seemed to have been a source of constant support for him, living until just after the birth of his first child. Her death seemed to leave a void in his life, and he expressed genuine sorrow at no longer having her to love him unconditionally. His dad had died several years earlier and his mom, though moving to Arizona, had kept a house here to be used by any of her children who needed it. It is frightening to think where Mike would be without someone with such love and foresight. Probably the most destructive thing that happened in his childhood came at age eleven. He and some other boys in his Boy Scout troop had a little band playing country music and had become good enough to begin public performances. As they were preparing to go on stage for their first big show, Mike became extremely nervous, and in order to calm him and get on with the show, his scout master gave him beer. This became routine and to this day, beer is Mike's drink of choice. At eleven! Mike had big plans for his life and continued to chase his dreams, even though at a very early age he was married and the father of a beautiful daughter, while still working and pursuing a college education. The marriage ended early, but listening to Mike I had the distinct feeling that he never got over this first, great love. These are some of the many things Mike chose to share with me on those long, lazy summer nights. There were also evenings when very little was said. I recall vividly one evening when Mike arrived very drunk and equally loud and belligerent. I decided that, rather than insisting that he leave, I would find some way to calm and quiet him. For a long time I held his hand, after telling him that we

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must use nonverbal communication, and for a good while it worked. He was calm and quiet, and then he suddenly erupted, bringing our evening to an abrupt end. He was so volatile. I never understood. There were times when he would become angry because I was trapped in a wheelchair. He felt it was unfair that I could not travel with him, because he wanted to take me to see the ocean and the painted desert and many other places. It was a very intriguing thought, and I loved the way he expressed those ideas but had to explain that there were certain things in this life that I would just have to miss and there was no need to waste the time that we could enjoy together worrying about things that could not be. There were, however, things that we could do together. We learned early on that we shared a love for tomatoes, as well as many other vegetables. So, because we had many tomato plants in our backyard, if there was nothing else to do we could always eat tomatoes. Sounds simple, but it was a genuine joy. One evening Mike came over very late just ahead of an approaching storm. I said something about the time, and he said it was not too late to watch some lightning. By that time he had learned some of my weaknesses and knew that there was nothing that I love more than rainbows, butterflies, and those bright, beautiful pieces of jagged light that chase across the summer sky, so we sat in the backyard and watched a dazzling display of nature's fireworks until the rain that followed chased us inside. Those were happy moments when Mike escaped the inner turmoil that seemed to control and drive him so much of the time. At such moments he was a joy to be near, and I often wished that we could have been together more often when he was so happy and relaxed, filled with love and wonder. I often thought about what I truly wished for Mike. First, I would wish him free of addiction to a substance that controls him and ruins his body. Unless and until he finds a way to rid himself of alcohol addiction, nothing else is going to work for him, because now his mind is too cloudy, his judgment is too warped, and his body is fast becoming too weakened to decide or do anything of consequence. We spent a great deal of time discussing how to make him alcohol free but never seemed to be able to come up with a workable plan, in part because Mike, although saying that he desperately wanted to stop drinking and did not want to become an "old drunk," seemed unable or unwilling to find that inner strength and resolve to commit his total being to abstinence. He would go to AA meetings drunk and return even drunker. He understands the dynamics of his problem, so there must be a way to help him or, more correctly, help him to help himself.

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I would wish for him a person who would love him and share his interest in philosophy, religion, and all those things that would expand his mind and therefore his life. He would sometimes express anger at having to deal with the stupidity of others and he would become very impatient with the imperfections of the human race. I think much of this was triggered by anger at his situation, so I would wish him patience with himself and others, the capacity to love and forgive himself and others. Always, I wish him the closeness of children. He seems really to love children, and they, in turn, seem to gravitate to him. He says he tries always to give them options and never to ask them to do anything where their only choice is to say no. Whatever his method, it works beautifully and proves to me that he is one of those people who should always be near children, his own and many others. I wish him, too, the companionship of good books and the clearness of mind with which to comprehend them. Mike does not ask a lot from life in terms of material things, but he does love the beauty of nature, so I wish him all the lovely things of nature; the grass, the trees, the sun, the moon, and always enough lightning to keep his life bright and exciting. And I wish that he may always give and receive many beautiful smiles. As I write, it is winter and the cold and gloom of the season have setded over our city; the winds that cut and bite blow through those who walk the streets. I spend most of my time inside and do not see Mike, but I think of him, miss him, and hope that he is well and warm. My fondest wish for him, right now, is that he does not stray from warmth and protection. The streets are cold and hard, they are dangerous to those who attempt to stay on them. I wish him wise use of this time, wish him the strength to cultivate that warm, gende side of his nature. When spring returns, as it surely will, I trust that Mike will return to bring his unique nature back into my life to baffle and confuse, anger and entertain, love and hate me. When summer returns, I hope that he will come to visit, especially late in the evening. Maybe we can again see a blazing sunset together, split a tomato, share a good book, sit together in the warm summer air, and watch the lightning.

24- The Secret Self

As this book ambles slowly toward its close, I have tried to think of the one idea I should most like to leave with those who are physically impaired and those who care for them. An enduring value of life, but one that all take for granted, is privacy. It is a right granted to us by the framers of our Constitution, but physical disability is no respecter of constitutional rights. Hence privacy for the handicapped is a privilege that is cherished but must be fought for, and that fight never ends. Life as a quadriplegic has little room for privacy, and its lack can become deeply frustrating. When some small area of privacy can be found, it must be protected as a rare treasure. It is exactly that. A few things can be protected, but for the most part it often seems that the whole world is looking over my shoulder, and probably giggling at what it sees. I cannot scream at people to go away and leave me alone because it really is not good for me to be alone for any length of time. The choice seems often to be between being at wit's end or breath's end. There are times when I am desperate enough to take my chances on the latter. I cannot physically handle my own money, so I cannot make a single purchase without someone, usually more than one, knowing about it. I cannot slip back a few dollars, for whatever my own little reason might be, and have it be my secret. When I go shopping the salespeople do not like to handle my money, nor would I care for that, so the person with me must pay for each purchase, often questioning and counting as we go. Once my purchases are taken home, they must be put away without delay in order to avoid further explanations to those on the next watch. I recendy found some satisfaction in dealing with this problem by figuring out a new method. I found an item at the mall that seemed perfect for a certain friend. The friend, who was with me, helped with the purchase and knew exactly what it was and what it looked like. When we got home, I had her put it away in my drawer, without saying anything about my plans for it. A few days later I prepared an envelope and had my sister

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place my little gift in it. This strategy worked well in this instance, so well that I plan to use it again. If my finances are not in good shape at a given moment, that information is shared because my checkbook must be handled, and therefore reviewed, by others. Some are more blatant than others in their disregard for my privacy. My sister tries to be as discreet as possible, usually asking questions out of genuine concern, for she knows that if push comes to shove she will be the one who is asked to bail me out. There are others who have no reason to know anything about my finances but who ask probing questions, or count my money as they pay for whatever I have bought. I have no Swiss bank accounts and no big secrets, but neither do I see any reason to have every dime scrutinized by others. There is no chance to buy that special card for a very special person, slip a special message into it, and have no one except the receiver and me know anything about it. The entire area of communications is probably the one that gives me the greatest concern and frustrates me most when my privacy is violated. Frustration sounds kinder than anger, but this does generate anger. There are times when I will complete a phone call and immediately face questions that tell me someone was listening. A few weeks ago I was writing to one of my dearest friends, whose mother had died, when I noticed that my personal care attendant was reading the words on my monitor. I told her to stop reading my letter, but a few moments later, as I was checking my spelling, she volunteered that she knew which word should be used! I don't consider it improper to resent such invasions into what I am writing and thinking, but there seems to be some warped idea that licking the stamp carries with it the right to read the letter. Most of my life is happily shared with others. My every physical need must be shared with others because each physical need must be met by others. But no matter how much of my life is open to others, I find a degree of consolation in knowing that absolutely no one has access to my thoughts. No one can enter my mind without an invitation. There are many questions that I answer without hesitation, but when someone asks what I am thinking there is seldom an answer. If I had wanted them to know my thoughts, they would not have to ask. I spend time alone, usually outside, just thinking, fantasizing, letting my mind race or meander in any direction it chooses, knowing that no matter what thoughts might appear, no matter how wild or outrageous they might be, they are mine and no

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one needs to share them. My experience with psychiatrists and psychologists has been very limited, and I am glad that I have not needed their prodding techniques because it would be very difficult for me to allow anyone to invade my head and get inside my thought processes. They are mine. They can and must remain private. Good "keepers" learn to recognize the secret self in all for whom they care. Perhaps readers too will recognize that here I have revealed more about myself than I would have once thought possible, but this is not an invasion of privacy—it is a selftold tale read by invitation. HAPPY ENDING!

Afterword Jennifer L. Howse, Ph.D.

As a young teenager, Regina Woods dreamed of becoming a Marine. She did not fulfill that dream, but she did encounter a challenge that required the inner resilience and remarkable courage that have characterized her life as a polio survivor for the past 41 years. It was for children like Regina that the March of Dimes Birth Defects Foundation (then the National Foundation for Infantile Paralysis) worked so determinedly during the epidemic polio years of the late 1940s and early 1950s. Scientists like Dr. Jonas Salk, supported primarily by money raised by the March of Dimes, devoted full energy and genius to unlocking the mysteries of polio. Volunteers worked in hospitals caring for polio patients and comforting their families. Thousands knocked on doors to raise funds through the March of Dimes Mothers March. It was this unique partnership of scientists and ordinary citizens that resulted in the development of the vaccine that has virtually eliminated polio from this hemisphere. Never again will this viral disease generate the panic that led to closing public swimming pools and movie houses and made parents confine their children to home. Unfortunately, the vaccine came too late for Regina. She had already been severely disabled by the disease and had begun a life that would challenge her at every turn. But, as we have come to understand through her story, Regina Woods's body may have been paralyzed, but her spirit was unyielding. Those of us who are part of the March of Dimes today look back with pride at the foundation's commitment to Regina Woods and to the role that our predecessors played in helping her to help herself. Through the foundation, Regina was able to get the respirator she needed, transportation to special care facilities, physical therapy, and personal encouragement. As it had before the vaccine, the foundation continued to assume responsibility for patient care bills and to work in other ways to rehabilitate the many survivors of paralytic polio. Dr. Howse is President of the March of Dimes Birth Defects Foundation

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With the conquest of polio, the March of Dimes turned its attention to another threat to America's young—the more than 3,000,000 children with congenital abnormalities the foundation subsequently named birth defects. Like polio, birth defects can rob their victims of the simple capacity to move around easily and to carry out all those daily functions that the rest of us take for granted. In an effort analogous to that with polio, the foundation has supported the combined work of volunteers and scientists to mute the effects of, or, if possible, prevent these defects. The outlook continues to brighten for the conquest of birth defects. Someday, like polio, some of them will no longer threaten the life and health of our children. In the meantime, the life of Regina Woods will serve as an inspiration to all who suffer from disability—whether from polio, other disabling diseases, birth defects, or accidents. In fact, her courage, common sense, and ability to laugh at herself are model qualities for us all. Regina does, indeed, personify the indomitability of the human spirit, and she teaches us what that spirit can achieve when it is determined to express itself.

Appendix: About Poliomyelitis David E. Rogers, M.D.

Poliomyelitis, or "infantile paralysis," was formerly a terrifying and common disease of childhood in the United States. The infection occurs naturally only in man. Three strains of virus are capable of producing the disease. In most instances it is a mild, indeed inapparent, infection, but in some it invades the central nervous system and causes paralysis. Thanks to the Salk and Sabin vaccines developed between 1955 and 1961 it has been virtually eliminated from the United States, but it is still common in many parts of the developing world. The infection is highly communicable. As with measles, in households in which an infection occurred, 100 percent of household contacts would acquire the infection but in less than one in one thousand would paralytic disease occur. Infection enters the body via the mouth. The virus multiplies in the throat and gastrointestinal tract and is shed in stools. In some people it invades the bloodstream. In yet fewer, the virus invades the central nervous system and attacks the motor nerve cells of the spinal cord which make muscles move. Poliomyelitis has been a common, ever-present disease in most of the world for many centuries. In the first half of the twentieth century it became epidemic in highly developed countries of Western Europe and North America. In those years it was common for epidemics of poliomyelitis to attack communities in the summer months. Virtually all outbreaks of the disease occurred between June and September. In the pre-World War II era when sanitation was not as good as it is today, it was primarily a disease of preschool children and severe paralysis was uncommon. As indoor plumbing and sanitation improved, exposure to the poliomyelitis virus was delayed and the disease was seen with increasing frequency in schoolchildren and young adults. In these age groups neurological involvement and paralysis were more common. During the epidemics common before vaccination, the disease had an incubation period ranging from three to thirty days. The infection was totally without symptoms in over 95 percent of those infected. These in-

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dividuals developed antibody and were permanently immune to at least that particular type of polio virus. In some—perhaps 2 to 3 percent—a minor illness signaled the invasion of the bloodstream with fever, upper respiratory symptoms and sometimes some lymph-node swelling, nausea, vomiting and flu-like aches and pains. In yet another group, again perhaps 2 to 3 percent, signs of irritations of the lining of the spinal cord and brain called "meningeal" symptoms appeared. These youngsters developed stiff necks and headaches but no overt paralysis. In an unfortunate few the central nervous system and the central spinal cord were involved and paralytic polio appeared. These were the cases that caused panic in all communities. Symptoms, like those described by Regina in this book, were frequently fever, agonizing muscle and bone pain with severe cramping and spasm of the muscles, and paralysis. The younger one was, the less the likelihood of permanent damage. In preschool youngsters, commonly one leg or one arm was involved, often with complete remission. In older children, sometimes more severe symptoms with involvement of both legs—a condition called paraplegia—occurred. In a very few, paralysis of all four limbs and often the muscles controlling respiration and the nerves innervating the chest wall and the diaphragm were involved. This was known as quadriplegia. Most of these children were over age 16, and in this group mortality was high— ranging up to 30 percent. Despite swift involvement of the nerves, often with total paralysis of limbs and the muscles of respiration occurring within forty-eight to seventy-eight hours, complete recovery was the rule. In perhaps one in one thousand, permanent destruction of the nerve cells leading to muscles left individuals unable to move their arms or legs (quadriplegia) and the muscles of respiration, which required external assistance for those patients to breathe. Regina was one of these unfortunate ones. One of the particular tragedies of Regina's illness was the fact that she acquired her disease in the epidemic of 1952. In that, the worst polio epidemic in the United States, 57,879 cases of paralytic polio were reported to the Center for Disease Control. Thereafter two vaccines appeared. First the so-called Salk vaccine (1955)—a preparation of inactivated virus that combined all three types of the polio virus—was shown to be elegantly effective and protective. This was followed in 1961 by the Sabin vaccine, a vaccine prepared by special cultivation of the three strains rendering them incapable of causing paralysis and producing only mild inapparent infection that led to permanent protective antibodies. After wide use of the vaccines, particularly the Sabin vaccine, the cases of polio dropped

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dramatically. In 1968 there were only 66 cases in the United States, and the last case of "wild type" poliomyelitis occurred in 1979. Thus, poliomyelitis is a disease we have now eliminated from this fortunate country. Because of the paralysis of the muscles controlling respiration, Regina has gone through a series of technologies designed to help her breathe. The first was the use of the Emerson respirator (the "iron lung")—a massive cylindrical tank designed to alternately create negative and, if necessary, then positive pressure within it. The entire body of the patient was placed in the tank with a tight-fitting collar around the neck—only the head protruded. These respirators could be cycled to suck air into the patient's lungs fourteen to sixteen times per minute in those unable to use their respiratory muscles. Side ports permitted access to the patient. It is a frightening device to enter. The patient is totally at the mercy of those taking care of him or her. However, for those unable to breathe, it was a welcome, indeed lifesaving, haven. Later on Regina graduated to a "chestperator." Here a rigid turde-like plastic shell fit firmly onto her chest. It had an inflatable rubber seal that gripped her tightly below the clavicles and extended around the edge of the shell, which ended at her waist. Adjustable straps went around back and fit the sides of the shell making it airtight. A hose connected to the rigid shell could alternately suck air out again, creating negative pressure and allowing the chest to expand. Obviously this shell permitted patients to have considerably more mobility, but the chestperators were fraught with defects: often they blew hoses or gaskets or were ill-fitting. Regina used this during the day, returning to the tank at night. As Regina aged, a syndrome commonly seen in the few survivors of respiratory polio made her breathing increasingly difficult. In essence, her chest walls stiffened, making it harder and harder to create sufficient negative pressure to permit adequate ventilation. In addition, increasing curvature of her spine due to the lack of muscular support made it difficult to fit a chest device properly. At this time, when sleep apnea had become a problem, it was decided with some reluctance to do a tracheotomy and to try Regina on a positive pressure machine that delivers air direcdy into the lungs via mouth or tracheotomy tube. A tracheotomy is an operation done under local anesthesia to insert a tube into the trachea below the larynx. This is done so that a positive pressure apparatus can be connected to it to expand the lungs, and so that secretions (which Regina was unable to clear adequately) can be suctioned without triggering all the dreadful reflexes one gets by passing a tube down the throat and into the trachea (the windpipe). Positive pressure breathing has been a wonderful boon for Regina.

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At night the cycling positive pressure apparatus is connected to her tracheostomy tube and automatically breathes for her. During the day the tracheostomy tube can be plugged, permitting Regina to talk. She can clasp the positive pressure hose between her teeth, permit it to fill her lungs, and then talk on expiration as air moves through her voice box. This apparatus is much less cumbersome than the chestperator. It is attached to a pump that in turn can be attached to her motorized wheelchair. Thus, as she describes, Regina became quite fully mobile. With controls that can be manipulated by the two movable fingers on her right hand and with her pump under the seat of her chair, she can both breathe and move with reasonable ease through a mall or down a sidewalk. A van, which she also describes, with an elevator that permits her 4oo-pound chair to be raised into the van with her aboard has added to her mobility. A few additional terms used by Regina may not be familiar to the lay reader. Metabolic acidosis—acid-base imbalance. The acidity/alkalinity of the body fluids is kept within exquisitely narrow parameters in two major ways—by respiration and by the kidneys. Breathing is the most sensitive and swift of compensating mechanisms. If, because of food, exercise, or other causes of change in internal chemistry, the body fluids tend toward acidity, breathing is deepened to blow off carbon dioxide ( C 0 2 an acid) to return the body's acidity (pH) swiftly to normal. When changes of greater magnitude and over longer range are made, the kidney can either excrete a more acid or a more alkaline urine to compensate for those changes. For individuals unable to breathe on their own, maintaining the proper body p H is more difficult. Long trips or inadequate ventilation often changed Regina's pH, making her body fluids acidotic or alkalotic. Both produce profound symptoms. Sleep apnea. For the majority of us, respirations are an involuntary act governed without conscious thought. The brain triggers respirations from a fairly low subcortical level. Apnea means absence of breathing. In Regina's case, where some of the efforts to breathe were necessarily conscious and because the muscles of her upper palate and tongue were weak, sleep could result in her tongue and soft palate obstructing her airway, whereupon she would cease to breathe. The importance of the automatic Emerson respirator and, later, the connection of her positive pressure apparatus to her tracheostomy during the night is obvious.

Illustrations

ι, 2. Late summer of 1952, before I contracted polio. Life then was so carefree.

3. After two years of changes (1954; courtesy of the Louisville Courier-Journal).

4· Dr. David Ε. Rogers as I came to know and love him in the 1960s.

5. My first independently operated phone (1963/4; photo courtesy of the Louisville Courier-Journal).

9· Leaving the Medical College of Georgia with new and better equipment (photo courtesy o f M C G Medical Photography).

п. After twenty-eight years Dr. Rogers still listens and listens and listens (1993).

This book has been set in Linotron Galliard. Galliard was designed for Mergenthaler in 1978 by Matthew Carter. Galliard retains many of the features of a sixteenth-century typeface cut by Robert Granjon but has some modifications that give it a more contemporary look. Printed on acid-free paper.