Chronic Conditions 9780228017707

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Chronic Conditions

Karen Engle

Chronic Conditions McGill-Queen’s University Press Montreal & Kingston

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London

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Chicago

© McGill-Queen’s University Press 2023 isbn 978-0-2280-1673-1 (cloth) isbn 978-0-2280-1674-8 (paper) isbn 978-0-2280-1770-7 (epdf) isbn 978-0-2280-1771-4 (epub) Legal deposit second quarter 2023 Bibliothèque nationale du Québec Printed in Canada on acid-free paper that is 100% ancient forest free (100% post-consumer recycled), processed chlorine free

We acknowledge the support of the Canada Council for the Arts. Nous remercions le Conseil des arts du Canada de son soutien.

Library and Archives Canada Cataloguing in Publication Title: Chronic conditions / Karen Engle. Names: Engle, Karen, 1974- author. Description: Includes bibliographical references. Identifiers: Canadiana (print) 20220468389 | Canadiana (ebook) 20220468427 | isbn 9780228016731 (cloth) | isbn 9780228016748 (paper) | isbn 9780228017707 (epdf) | isbn 9780228017714 (epub) Subjects: lcsh: Chronic pain. | lcsh: Chronic pain—Psychological aspects. | lcsh: Chronic pain—Philosophy. | lcsh: Pain in literature. | lcsh: Pain in art. Classification: lcc rb127 .e54 2023 | ddc 616/.0472—dc23

This book was designed and typeset by studio oneonone in Minion 11/14

Contents Preface: On Being Ill and Otherwise Healthy xiii

Telling Stories, Chronically 3 Foot Notes 24

JAWS 43

Spin Cycles 58 The Waves 80

Postscript: Spirits and Floods 98 Acknowledgments 105 Illustrations 107 Notes 109

Bibliography 127

1.1 Above Betty Roodish Goodwin, Untitled, 1963 1.4 Opposite Wound Man from southern Germany, ca. 1420–30

2.2 Above Jean-Baptiste Regnault, The Three Graces, 1793 2.3 Opposite top Overlap between fibromyalgia tender points and Charcot’s hysterical zones 3.1 Opposite bottom Temporal bone, mandible, and temporomandibular joint

3.2 Opposite Lisa Nilsson, Head and Torso (detail), 2010

4.1 Above Paul-Marie Léon Régnard, photograph of Augustine during lethargic phase of hysterical attack, Iconographie photographique de la Salpêtrière, vol. 3

6.1 Betty Roodish Goodwin, Red Sea, 1984

Preface

On Being Ill and Otherwise Healthy z

How can something still appear to work from the outside when its internal systems are operating entirely through an ad hoc assemblage of garbled messaging, reroutings, and shaky foundations? And, how can this “working” be captured in language? These are the questions that have preoccupied me during the writing of Chronic Conditions. In 2015, I wrote a series of fragments exploring memory and pain for an academic conference; fragments that sat on my hard drive for five years before I began to imagine their metamorphosis into a larger, more sustained endeavour. As I went about the daily business of teaching and research, these themes dangled, loose threads that I sensed, but could neither cut off nor pick up. In 2019, my everyday life was interrupted by the effects of an unremarkable start-of-term virus, an interruption that lasted in its acute phase for six months and eventually morphed into a new kind of ordinary. It was this interruption of daily life that compelled me, finally, to pick up these threads and follow them into the snarl of scar tissue and time. I have lived with chronic pain my entire adult life but until this viral visitation, which rendered me horizontal with vertigo for months, I had never taken a hiatus in my studies or career. The strength of my faculty union and our collective agreement made the process of taking short-term leave easy, without any concern for financial consequences or loss of employment; security most people are not afforded. During this leave, the all-consuming experience of feeling my brain misinterpret my body’s location in space gradually brought me to the desire for writing. With each visit to my family

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physician or team of specialists, I was asked to describe the vertigo. Confusion between dizziness and vertigo is common among patients. Medically speaking these conditions are not identical, and to distinguish between them is not straightforward. Patients notoriously have difficulty describing the sensations of vertigo, and so I became obsessed with finding language to do just that. The challenge of attaching words to physical and mental pain has been a subject of interest among scholars and writers for some time, and as I experimented with language for vertigo, I began to search out other writers exploring the language of pain. Devoted fans of Virginia Woolf, or readers of contemporary writing on illness, will recognize the first part of the title to this preface as originally belonging to her. During an illness in 1925, she wrote “On Being Ill,” an essay which was then published in 1926.1 While its immediate impact was limited, the essay is now cited regularly in narratives of illness and in scholarly studies of pain and disease. More specifically, three sentences from the opening section of this text – the rest of Woolf’s essay eclipsed entirely – have become de rigueur as authors elaborate their own narratives of illness: “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare, Donne, Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”2 In contrast to many of Woolf’s winding, paragraph-long sentences, these are short, sharp, and eminently quotable phrases – perhaps one reason for their repeated reproduction by writers of illness. Tacit acceptance of Woolf ’s claims abounds; these sentences serve as a springboard for writers to leap into their stories or analyses, texts whose raison d’être is at least partially located in a desire to fill the supposed yawning void of such narratives throughout history. Woolf opens “On Being Ill” with the claim that “illness has not taken its place with love and battle and jealousy among the prime themes of literature.”3 After granting some small concessions with reference to De Quincey and Proust, she begins an investigation into why English literature does not engage with “this daily drama of the body.”4 She proffers some theories for its absence, suggesting in turn a lack of courage on the part of writers to face the devastations wrought by illness; she imagines a reading public complaining “that a novel devoted to influenza lacked plot”; and finally, Woolf

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charges the English language with an essential poverty, rendering it unfit for the task. It is at this point, only one third of the way through the essay, that the sentences in question appear. Among the writers who have incorporated this quotation, Elaine Scarry uses Woolf ’s sentences to set up the primary argument in her influential The Body in Pain: The Making and Unmaking of the World, namely, that pain can destroy language.5 Similarly, Valerie Gray Hardcastle uses these same sentences as an epigraph in a chapter of her book, The Myth of Pain.6 In Emily Rapp Black’s lovely autobiography, Frida Kahlo and My Left Leg, passing reference to Woolf suggests a similar acceptance of the limits of language: “Who determines the metrics of pain? How is it quantified? Virginia Woolf believed it was indescribable.”7 Melanie Thernstrom cites Scarry citing Woolf in a single sentence, using both writers to introduce patients’ descriptions of their pain (descriptions that I find harrowing and evocative).8 Hilary Mantel’s stunning, terse account of her hospital stay in Ink in the Blood spends more time with Woolf than most. She discounts the claim of a “poverty of language” as obviously specious, but does not imagine that Woolf may have had a rhetorical purpose: “What of the whole vocabulary of singing aches, of spasms, of strictures and cramps; the gouging pain, the drilling pain, the pricking and pinching, the throbbing, burning, stinging, smarting, flaying? All good words. All old words.”9 She concludes that Woolf is too proper, too formal to delve into the visceral realities: “She is seemly; she does not seep, or require a dressings trolley, she does not wake at dawn to find herself smeared with contact jelly from last night’s ecg. Virginia never oozes. Her secretions are ladylike; tears, not bile. She may as well not have bowels, for all the evidence of them in her book.”10 Mantel’s short memoir is bursting with leakage and gashes, but I think she dismisses both the nature of Woolf ’s illnesses, and the essay, too hastily. Quotation is a process of extraction that entails decontextualization and recontextualization, one practised by all writers.11 Decontextualization can be an effective rhetorical tool, but in this instance, the extraction of these sentences has been accompanied by a total occlusion of the rest of the essay, and in my view, Woolf ’s larger aims have been lost. As Sarah Pett asserts, “Rhetorical device or pseudo-historical proof: in these modes of citation, ‘On Being Ill’ is regularly invoked, but never engaged with in any sustained way.”12 For me, reading anything by Woolf feels like wandering around a

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mind both expansive and infernal, one that knows how to knit together the most complex themes and structures. When I allow myself to dive fully into her words, I feel as though I’m reaching for the edges of a universe that she consistently stretches beyond my grasp. “On Being Ill” is no exception. Each time I read through it, I submerge myself in paragraphs, only to realize at certain moments that I have lost track of where I am. I pop up above the surface by reading backwards in hopes of reorienting, and then descend once again into the flow of her words. It’s a waking fever dream, a moving in and out of focus, and an interruption of one reading experience by another. It’s like waking from flu-induced sleep in the middle of the afternoon and feeling how the line connecting you to the outside world has grown limp. It’s looking out your bedroom window at a world suddenly small and very far away. When I first read “On Being Ill,” those same sentences that grab everyone also grabbed me. Like Mantel, I wanted to debate Woolf immediately. A series of examples came to mind, all preceding the twentieth century, that would counter the ostensible meaning of her statement. What of Donne’s Devotions upon Emergent Occasions, and Severall Steps in My Sicknes, written in the wake of serious illness? Or Alphonse Daudet’s In the Land of Pain? Okay, this is not an English-language text, but Woolf referred to Proust, so I considered it fair game.13 Returning to the English tradition, what of Sir Walter Scott, or Fanny Burney’s description of her mastectomy performed without anesthesia, which took up immediate residence in my brain upon the first reading? Yet – when the dreadful steel was plunged into the breast – cutting through veins – flesh – nerves – I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision – & I almost marvel that it rings not in my ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp and forked poniards, that were tearing the edges of the wound – but when again I felt the instrument – describing a curve – cutting against the grain, if I may so say, while the flesh resisted in a manner so

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forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left – then, indeed, I thought I must have expired.14 Burney’s language is the opposite of impoverished; it overflows with visceral description that compels us to slow down and imagine just what air rushing into exposed tissue might feel like, or to picture the exhausted sawing motion of the surgeon “cutting against the grain.” It’s nauseating and brutal – just the kind of courageous writing that Woolf identifies as necessary to the subject. The more I dwelled on Woolf ’s claim, the more I began to question its purpose in the essay. She must have read most of these texts from previous centuries. I knew she had read Chaucer and Donne, and she had also read nineteenth-century fiction with all its consumptive heroines. From the books in her library, shared with husband Leonard, “a significant number of the texts on which studies on illness and literature have focused can be found.”15 Pett suggests an intriguing hypothesis: that Woolf is engaged in “an exercise in reverse psychology: a strategy that prompts readers to think first of exceptions to the rule with which they have just been presented, and then, through these exceptions, to begin reflecting on the status of illness in the literary texts with which they are familiar.”16 If this is true, then I had done exactly what Woolf intended: thinking up examples that then led me to explore previous characterizations of illness. Reading beyond those famous sentences, we travel with Woolf on a journey that begins with the laborious process of generating language and extends to the challenge of representing illness, and finally, towards “rash reading” – a mode of reading made possible by the singularity of illness and its alienating effects. Immediately following those famous sentences, Woolf, in fact, shows us how new words are formed by the patient: “But let a sufferer try to describe a pain in his head to a doctor and language at once runs dry. There is nothing ready made for him. He is forced to coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other (as perhaps the inhabitants of Babel did in the beginning) so to crush them together that a brand new word in the end drops out.”17 To write pain is a wholly embodied process, one combining the material and the intangible in a turbulent alchemy. Combining the word lump with the phrase “pure sound” is vintage

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Woolf; has anything pure ever come in the form of a lump? It’s a disorienting combination that seems to inject even the ineffable, the intangible, with a brute materiality. The sufferer may not find an extant lexicon for their experience, but they can invent one. For the person with chronic pain, the labour required to forge language is conjoined to the exhaustion of time. In his book The Culture of Pain, David Morris cites these same Woolfish sentences, not as simple repetition but rather to distinguish between acute pain and chronic pain. Accepting the degree to which acute agony reduces language to monosyllabic expressions like “ow!,” Morris maps a different relation between language and chronic pain. It’s the difference between being hit by a tsunami and being worn away by the tides: “Patients with chronic pain soon discover that their complaints (potentially endless, like their pain) often exhaust, frustrate, and finally alienate family and friends and physicians. Many patients thus learn to retreat into a defensive isolation … In many ways, the person in chronic pain might as well be standing on the moon.”18 The patient with chronic pain is not hampered by a paucity of language, but rather its excess. There is simply too much to describe, to respond to, to fail to treat. The silence of the chronic patient is due not to the failure of words but to enervation by the unending waves of utterance. This is one way in which the chronic conditions the person, an action I signal in the book’s title, Chronic Conditions: conditions transmutes between noun and verb, and acknowledges how the duration of symptoms transforms everything from the practice of daily life to how I see myself. Woolf ’s attention to reading and writing in this essay foregrounds the relation between illness and language. Not only does the task of linguistic invention fall to the patient, but so too does the task of learning to read and interpret otherwise, to sink into words and explore their resonances without relying on the physician’s description of how things are and what they mean. For the remainder of the essay, Woolf takes us on a journey of rereading a carefully selected group of poets and writers. She invites us to abandon conventional tropes and interpretive associations established by long literary tradition – another kind of interruption – and read without the filter of critical voices or established meanings. In Pett’s analysis, this call to invention, followed by the active reading and rewriting that Woolf takes on

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for the rest of the essay, constitutes a creative manifesto: “This manifesto calls on writers to explore and develop modes of writing that actively deconstruct the habits and preconceptions that readers bring to certain images and themes, and in doing so to open up the scope of meaning with which they are associated.”19 At stake is a kind of writing that does not instrumentalize illness or disease for allegorical or transcendental or mythic purposes. Disease is not a marker either of God’s blessing or condemnation; it is not an indication of guilt or purity; it is not an opportunity.20 I dwell on Woolf ’s essay, and the conventional adoption by many writers of those few pithy sentences, to position my own approach to life writing and illness here. Chronic Conditions is my memoir of a life lived with pain. It is also a book concerned with writing and reading. “On Being Ill,” with its shifting between writers and readers throughout, serves as a map to the kind of book I hope to have written; one that reflects the interweaving of reading and writing with chronic pain, and one that attempts to convey an experience that flickers in and out of focus and fluctuates over time. I seek to avoid instrumentalization, by which I mean “finding a silver lining” to my pain. Yes, I have learned hard lessons from the curriculum of chronic pain, and I have gained perspectives I might otherwise have deferred until later in life. And yes, the daily restrictions eventuated by these conditions have been part of the crucible of my formation, a formation that has certainly led to the writing of this book. But I would have preferred to go hiking or play tennis or just have the energy for ordinary tasks without considering how I’ll pay for it if I go to the grocery store and do the laundry and cook dinner all in one day. Returning once more to Woolf ’s essay: “To look these things squarely in the face would need the courage of a lion tamer; a robust philosophy; a reason rooted in the bowels of the earth. Short of these, this monster, the body, this miracle, its pain, will soon make us taper into mysticism, or rise, with rapid beats of the wings, into the raptures of transcendentalism.”21 While I cannot lay claim to a robust philosophy, I do ally myself with the intestines and the gut over the beat of angel’s wings. By contrast, Arthur Frank describes illness as a “dangerous opportunity” in his memoir of heart attack and cancer, At the Will of the Body: Reflections on Illness. Frank is a sociologist who has been writing and lecturing on illness since the publication of

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his memoir in 1991. That the book was reissued in 2002 speaks to the impact of his thinking. At the Will of the Body raises key observations about the relationship between clinician and patient, about the demands put on patients to behave in specific ways, about social and systemic failures, from the training of medical school professionals to stigmas around certain kinds of illness, and about the losses and strains that disease entails. These were novel and important observations in 1991, and they remain, for the most part, relevant today. Yet, he returns over and over to language that takes the subject out of their own body and into the abstraction of spirituality. Positing illness as a “dangerous opportunity” signals a loss of connection with the materialities of illness. Throughout his book, the solution to both inequities in our various systems and medicine’s inability to save every person is to place the responsibility onto the patient for finding meaning in their situation, and to have “faith” of some sort. For instance: “The only real difference between people is not health or illness but the way each holds onto a sense of value in life.” And: “Those who are ill and those who witness illness can only have faith in the wholeness of either outcome. Faith must displace will, just as struggling with cancer must displace fighting against it. Being ill is a perpetual balancing of faith and will.”22 While I understand the value a spiritual life holds for many people, to instrumentalize illness in this way is to abandon its specificity and risk its metaphorization. Illness can surely be a sign of something else, like a marker of toxic living conditions in a region characterized by unusually high rates of cancer, or an indication of systemic inequality such as we have seen with patterns of Covid infection in marginalized communities. But these are fundamentally material and human signs. There is nothing transcendental – no spiritual value to be found – in the fact that Indigenous people die more often from cancer than the non-Indigenous population.23 The writers I seek out for inspiration are not sanguine, are not preaching acceptance and faith, but are unflinching in their rage at their condition, at systemic inequities that distribute care unevenly, and at the changes both physical and emotional that such illness generates. Anne Boyer, for example. Or, for the times when rage dissipates, a voice like Lesley Sterns’s resonates with its love of chickens and gardens and just getting on with things. She called it “being chronically alive.”24 Or Lauren Berlant describing how this phase of capitalism has induced a situation of “crisis ordinary” for most of

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us, albeit in different ways.25 It’s a phrase that describes how “in the impasse induced by crisis, being treads water; mainly, it does not drown.”26 I’m not interested in writing transcendence or finding spiritual value in my condition. Nor do I think of my body as colonized territory, as Frank describes. In his account of heart attack and cancer, he writes, “I could imagine how native people felt when European explorers arrived on their shores, planted a flag, and claimed their land on behalf of a foreign monarch who would bring civilization to the savages. To get medicine’s help, I had to cede the territory of my body to the investigation of doctors who were as yet anonymous. I had to be colonized.”27 Colonizing the very experience of colonization, the metaphor abstracts everything from actual land theft to the history of medicalized genocide of Indigenous peoples and constitutes yet one more example of settler appropriation.28 My body has not been invaded by some foreign power. My doctors are not extractive industries seeking to deplete me and then keep me in thrall for the rest of my days. My body – this monstrous miracle – is mostly treading water, and medical professionals are generally trying their best to keep me afloat. I concur with Sontag that avoiding metaphor is neither possible nor desirable, but there are some metaphors we are better off abandoning. The notion of illness as a colonizing or invading force is one of them.29 z

If the “daily drama” of my body is not the result of colonization or invasion, then what words might start me towards a thicker description? Otherwise healthy – the second phrase in the title of this preface – begins to demarcate the weirdness of living with my particular conditions. As an adverb, otherwise denotes “in another way” or “in other respects.” It can also mean “in other circumstances.”30 In any intake meeting with a physician, I am asked to give a medical history. Whether I answer “fibromyalgia” or “chronic pain,” the common reply is, “But you’re otherwise healthy?” Otherwise in this context signifies “aside from that issue, you’re fine” or even “if it weren’t for this, you’d be well?” I hear the question and wonder, Other than this condition that has swallowed up my sense of the possible and rewired my nervous system, am I healthy? It feels like negation, like I’m a flickering hologram trying to gather my atoms into a more recognizable form for this world. I try to imagine a doctor saying this to a patient with end stage liver

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disease, but it seems absurd. Terminal patients have no “otherwise” left to articulate. In this respect, I am – essentially – fine. I don’t have heart disease or high blood pressure or any condition leading me more quickly towards death. Is this the definition of “healthy”? Having a statistically normal trajectory to death? I am perplexed by the meaning of these words: illness and health. Reading through recent work by disability activists and scholars, I find ongoing debate about the distinctions and meanings of these terms, and particularly their relation to the word disability. Many disability activists contest the label disabled altogether, arguing that human beings are a varied lot – naturally. They focus, rightly I think, on the need for our built environments and social systems to be attentive and responsive to human variation, such that individuals moving through the world do not face entirely avoidable obstacles. In this paradigm, people are not disabled; structural and systemic conditions make them so. Some writers use the acronym TAB – temporarily able bodied – to refer to individuals not currently navigating physical or mental health conditions.31 The phrase refashions the notion of “being healthy” into a contingent and short-term state: everyone will eventually face physical or mental health crises (assuming they live long enough). But where does chronic pain fit within these paradigms? My pain is not a natural variation, nor would it improve with modified architecture. If there was a pill without horrendous side effects that offered cure, I would swallow it and become otherwise.32 In combination with on being ill, the phrase otherwise healthy generates an aporia – in both senses of the word. On being ill describes both being and having: one can have an illness and one can be ill. The phrase “I have a cold” indicates a temporary state, one that does not permanently alter the subject but certainly interferes with her daily functioning for the cold’s duration. By contrast, “I am depressed” is a statement of identity for a condition that may persist, or not, but somehow alters the fabric of being forever. Being and having each register an interruption to everyday life, and this notion of disruption brings me back to Woolf. I think of interruption as the formal structure of “On Being Ill”: she begins one description or idea, only to jump into another.33 She signals her use of interruption explicitly towards the end of the essay, with one especially egregious non sequitur: “But enough of Shakespeare – let us turn to Augustus Hare. There are people

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who say that even illness does not warrant these transitions …”34 In part, this focus on breaking into her own narrative mirrors the short attention span of the ailing, but it also signals a disruption to everyday perspective and convention. For the ill, “the world has changed its shape.”35 Only the indisposed, Woolf suggests, have the capacity to look up and perceive the wondrous spectacle of sky, and “it is only the recumbent who knows what, after all, nature is at no pains to conceal – that she in the end will conquer.”36 It’s not merely a clichéd form of special wisdom that Woolf claims for the ailing, but a warping of everyday judgment. In one moment, the ill may reflect on the existential meaninglessness of daily routine, while in the next they might notice how “friends have changed, some putting on a strange beauty, others deformed to the squatness of toads.”37 Sickness, with its accompanying isolation and alienation, alters one’s ordinary perceptions. What happens, I wonder, when the interruption is not temporary but ongoing, such that it becomes the new ordinary? What of chronic otherwiseness?38 In the pages that follow, I explore this ordinary otherwiseness through stories of how an irascible plantar fasciitis evolves into a full body condition with the name fibromyalgia, of jaws clamping down, of how vertigo spins the world into a perpetual motion machine, of how it feels to cycle through years of treatments that don’t live up to their promise, and of a nervous system gone haywire. Together, these stories reconfigure the snarl of scar tissue and time into this memoir of being ill and otherwise healthy.

This book is for Patrick, who remembered the jawbone z

At ten, I couldn’t articulate much but I got the message: to be a true historian, you had to mourn amply and well. Karen Russell, Swamplandia!

Telling Stories, Chronically z

Finally, she left. Or else she told him to leave. Forty years they had lived in that house, raised a family, gardened, worked, retired. And then one day she decided enough was enough. He used to start fires in the house. Small ones, not big enough to bring out the fire department or cause permanent structural damage, but big enough so that she got the message. I bet he burned her things. I bet that, from time to time, he stalked about the house collecting objects she loved, a pair of earrings from the city’s annual Art in the Park festival, a sweater she was knitting for their deadbeat son listening to Led Zeppelin upstairs in the attic, a ceramic dog she was planning to put into the garden next spring, and then he lit a match. I bet he did it when she went out as a way to warn her not go out. She would come home, laden with groceries or a new knitting pattern, and she’d smell the smoke. She’d run upstairs and find the Holly Hobbie trash can in their daughter’s room hot with ash. It just went on like this. But then one day he locked himself in the house and said he had a machete, or else a gun. The Windsor Star seems definitive in their headline, “Machete-Wielding Senior in Police Custody,”1 but some of the neighbours are certain it was a gun. Anyway, swat arrived along with the fire trucks and more police cars, and they lined the block. People up and down the street came out of their houses and other folks heard about it and walked a few blocks over to see. The next-door neighbours were marched across the street where they could wait from a safe distance. The newspaper article is short on detail: “Police said the man had made threats against his wife

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and was eventually coerced by police to surrender without incident just after 3 a.m. He was taken to hospital for assessment and is facing charges of uttering threats and possession of a dangerous weapon.”2 It’s the absurdity of the phrase “without incident” that grabs me. I know the reporter is signalling that nobody died or shed any blood, but I wish they had written “without additional incident” instead. Forty years of pressures accumulating, exploding, dispersing, and re-accumulating are behind this three-hour standoff. And there was an additional incident, a final dispersal: she left. She moved to an apartment in the city and who knows where he went, after the hospital. The house remained behind as a witness. Afterwards, the for sale sign appeared on the front lawn. It stood empty for nearly a year, and then we bought it. We were surprised at how much of the old wiring was left. They’d had someone in to run copper about ten years back, but as we stripped the walls down to their studs, we found over half the house was spliced and patchy with knob and tube. In the guest room, an extension cord slid out of the floor on the southeast corner and slithered along the south wall until it disappeared under the baseboard on the north wall. Its head popped up in the adjacent room and plugged into an ungrounded outlet powering nothing. After we tore down the wood panelling and wallpaper in the kitchen, we found another extension cord underneath the strapping, running from the upstairs master bedroom all the way down into the basement. It was a giant serpent coiled around the insides of the house, ready to strike and spark at any moment. Even if you have a fire trap behind your walls, the lights will still work. There’s a door in the basement with a fist-sized hole punched in it. In the attic, secreted away in the insulation, our electrician found an envelope containing photographs of a woman and a love poem. It was addressed to the husband, from a woman with a different last name from theirs. We covered the basement punch with a cheap print from Winners featuring early forms of air transportation and gave the Holly Hobbie trash can to our realtor. She was nostalgic for the children’s doll and wasn’t much bothered by the scorch marks. I walked into the kitchen each morning for years to see burnt patches on the floor. Patrick says they could be anything – stains of one kind or another – but I think otherwise. These brown, rusty splotches are the scar tissue of rage and impotence.

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We had to scrap our plans for replacing that ominous floor when our beloved miniature schnauzer, Samantha, became seriously ill. The bill for easing her back to health was exactly the amount we had set aside to erase all traces of violence in the kitchen. So, each morning I’d stare, transfixed, as the biggest splotch resolved into a swirling pattern, like a gathering funnel cloud, and wonder, What does the whirling cloud have to do with me? The house bears witness, but not from a distance. It carries the traces of these lives in its bones and its tissues. I read the signs in the shape of a fist in a door, an envelope in a wall. I make up stories but have no way of knowing how true they are. I do know that somewhere along the way this brown stain morphed into a mirror through which I saw myself “through a glass, darkly.”3 I don’t start fires and I don’t threaten Patrick, but rage and sometimes impotence well up within me, too: one consequence of a life with chronic pain. Patrick has since pulled up this scarred layer of flooring – an early pandemic project – and revealed beautiful fifties-era linoleum underneath. It reminds me of the kitchen-floor lino in my childhood home; it soothes. One day soon, we’ll replace the door in the basement and that will be the end of all visible traces of one man’s anger. But the house is a nervous system; it keeps track. z

About a year after my initial fibromyalgia diagnosis, I met with a specialist. He was double-credentialed, with expertise in hematology and internal medicine, and I knew I was lucky my mother had found him and made the appointment. I arrived at his office prepared to recite my medical history. I had recounted the story of my injury and diagnosis so many times that I had a tidy little narrative ready to deliver at a moment’s notice. I sat down in the chair opposite him and waited for the conventional opening. This could take a few forms but was usually something like “How did you arrive at this diagnosis?” or “Where do you feel pain now?” Utterly pragmatic. Completely bloodless. Instead, this man looked me in the eyes and asked, “How long has it been since you felt well?” Something inside me imploded. My throat tightened and I felt water gathering behind my eyes. I was in my early twenties, and displaying emotion in front of anyone felt horribly embarrassing, so I mustered every last ounce of control, took a breath, and replied: I don’t know.

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I can still feel the weight of this moment today. I close my eyes and take a few breaths for this young woman who had already been travelling down the chronic highway for some time. She had no idea then what the decades ahead would hold, nor could she. By its very nature, something that is chronic can only be grasped over time. What this physician opened up in her – in me – was the first inkling of how this passage of time might feel. It wasn’t pleasant. I would spend much of the ensuing two decades working hard to conceal the situation, to present as a woman without limitations, untroubled by physical concerns. I had grown up during the eighties immersed in the cultural soup of shoulder pads and strong bodies. Advertising campaigns directed at women seeking equity in and outside the home were ubiquitous, like Secret antiperspirant’s “Strong Enough for a Man, Made for a Woman” and the Nike poster featuring a woman sitting at the edge of a weight bench, above the phrase “There Is No Finish Line.” I spent hundreds of hours during my early university years staring at that poster, which hung on my roommate’s wall, imagining my body could achieve that level of strength and endurance. Diagnosis made no difference to my determination to mimic these unstoppable women: I too would lift endless weights and shatter glass ceilings with my shoulder pads. Having thoroughly absorbed the message to never stop, I now had to walk a tightrope of denial. My objective was clear: never lose your balance in public.4 For the most part and until quite recently, I was successful. During the last few years, my ability to hide in plain sight has been undermined by two new chronic conditions. Temporomandibular disorder, or tmd, materialized with a vengeance five years ago. I was unable to eat normally and so I all but stopped attending work events involving food. I had birthed a monster in my jaw, born from years of grinding and clenching. Eating angered the monster, whose rages felt like so many arrows piercing masseter muscle. If friends came over for a barbecue, I’d shave my corn from the cob and watch with envy as their jaws opened wide to tear the kernels off. Over the years, the beast has spent most of his fury, but he remains a malcontent, striking out each time I yawn, or neglect to cut my carrots down. The second condition to take up residence was vertigo, the subject of “Spin Cycle,” an affliction debilitating enough for me to take my first ever medical leave. Vertigo was equally invisible, but its effects had me describing symptoms to my direct supervisors, my union, and my hr department: goodbye all sense of

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privacy. Word travels fast in a university, and suddenly I had colleagues backing away from me while asking, “Can I catch this from you?” By the time the pandemic hit, I had already been under my own stay-athome order for five months. It has now been three years of living with daily disequilibrium, and I have spent much of it in my reading chair in the living room. On the days reading is impossible, I look out the window. I have seen the leaves change, fall off, and leave their branches exposed to winter. I’ve watched those same branches awaken from their seasonal slumber as new buds sprout and cluster in luscious thick bunches. Time to think. Time to feel. I write about my experiences with the chronic to better understand them, perhaps to take stock and reorient my approach to the future. I learn through writing. Writing and thinking are time-consuming occupations, and thus bear some relation to a chronic temporality. Not all things chronic are detrimental. Lesley Stern advises us to get on with it, not to dwell in our chronic conditions. In the final chapter of this beautiful and wrenching story of her life, her chickens, her garden, Elvis the cat, and her cancer, Stern writes, “I have been deflected from this guiltless journey toward death and paradoxically had to inch slowly into living, into the question of how to live and how to rejig my understanding of the word chronic: How to nudge the notion of a chronic illness off from center stage and how to accommodate, somewhat grudgingly, to the idea of being chronically alive.”5 Living with a terminal diagnosis is not the same as living with a disease that won’t kill you. Research on the long-term impact of fibromyalgia suggests that my overall life expectancy is likely reduced; a terminal diagnosis delivers the certainty of a death sentence in brutal ranges like two to five years. The stakes are different. What each of these diagnoses share, however, is the absence of cure, the challenges of navigating treatments designed to manage or reduce pain, and the uncertainty of each day. Like Stern, I seek to more deeply understand this idea of being chronically alive by reflecting on how it feels to live through and with chronic conditions. My conditions do take centre stage here, not as a “fortress armed against death” but because pain plays a starring role in my life.6 Yet pain is only part of the story. Literature and visual art have been like air and water through the years, both as sites of relief and as entry points for deeper reflection, and they figure prominently alongside pain throughout this book.

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Chronic Conditions z

The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”7 Chronic pain is generally defined as persisting beyond three months. Beyond the passage of time, the other difference from the general definition of pain is its multifactorial nature: “biological, psychological and social factors contribute to the pain syndrome.”8 Taken together, these two definitions represent important developments in pain management for people like me. For instance, the acknowledgment that pain is not necessarily associated with actual tissue damage has only been possible through recent advances in neurological research. I address some of what this means in “Foot Notes” and in the postscript, but suffice to say that historically, women (usually women) reporting pain where no physical damage existed often received diagnoses of malingering or hysteria.9 The recognition that pain is subjective and influenced by cultural assumptions, social determinants of health like racial and economic demographics, and individual biological and psychological makeup, goes some distance towards communicating the fundamental complexity of pain experiences. Yet, these definitions leave me wanting. Medical research provides me with the latest studies and protocols, but utterly fails to capture what any of this feels like. I am reminded of Avery Gordon’s discussion in Ghostly Matters: Haunting and the Sociological Imagination. Maintaining that conceptual abstractions like racism and capitalism are crucial semantic tools addressing both lived and historical experience, Gordon knows that they do not convey the affective depth or breadth of what they seek to describe. In her words, One day, the students and I in my undergraduate course on American culture made a thorough list of every possible explanation Toni Morrison gives in The Bluest Eye (1970) for why dreams die. These ranged from explicit externally imposed and internalized white supremacist standards of value, the nature of white man’s work, and the dialectics of violence and hatred to disappointments, to folding up inside, to being put outdoors, to the weather, to

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deformed feet and lost teeth, to nobody pays attention, to it’s too late, to total damage, to furniture without memories, to the unyielding soil, and to what Morrison sometimes just calls the thing, the sedimented conditions that constitute what is in place in the first place.10 We need conceptual and diagnostic terms, but we also need scorched Holly Hobbie trash cans and “furniture without memories.” In my case, medicalized details like itemized catalogues of symptoms have long since lost any emotional significance; they resemble nothing so much as grocery lists in their banality. Reading about the common complaints and correlations associated with fibromyalgia – widespread pain, sleep disturbance, irritable bowel syndrome, tmd, depression, anxiety, fatigue, headache, etc. – now generates the same perfunctory response as noting that we are out of milk. In this book, I have written my own case history; it encompasses medical research data but tries to translate scientific definitions into individual meaning.11 It’s a story of injuries as hauntings, of bodily disintegration, and of growing into a body that persists – albeit chronically. I am, at heart, a student of language. Prior to my current position teaching art history and visual culture, and before completing a doctorate in sociology, most of my university experiences took place in literature departments during a time when theory became as prominent as poetry and fiction. The language of theory was often just as enticing (although for different reasons) as a good novel, and I have retained this dual interest in theoretical analysis and poetic imagination ever since. When I read in the medical literature that fibromyalgia is a disease with an uncertain etiology, I think: Of course! How deeply I absorbed the lesson as a graduate student that we must abandon the quest for clear and definitive origins in history, that no single person or event is deterministic.12 At the very same time that I recognize the intellectual affinity between my condition and my understanding of history, I think: But there must be a reason for this. If I can find the reason, I can change it. My training tells me that I should not seek an original cause for my disease; my body urges me to try. This book is, in part, my attempt to dispense with the pursuit of clear origins and clean endings at the level of desire as well as at the level of intellect. The only way I know how to do this is through an exploration of language. I begin with the word chronic.

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Chronic Conditions

Chronicling I try to follow the word’s history back in time and find instances of confusion, mix-up, and dropped threads. Chronic comes to us from the ancient Greek χρόνος, and according to the Oxford English Dictionary, its first two meanings are “of or relating to time; chronological” and “of diseases, etc.: lasting a long time, long-continued, lingering, inveterate; opposed to acute.” Chronic is also associated with χρονικός, which means “of or concerning time.” The Latin word chronicus takes on a medical signification to designate persistent diseases (as opposed to acute). In French, chronique traces back to the Old French cronique, and then medieval Latin’s cronica, chronica, and chronicae. Designating “a chronicle, narrative of events in order of date,” chronique takes us back to an early conception of history. I find, in other words, the bundling of disease, history, and time. Western visualizations of Time start off on quite a different foot. From Erwin Panofsky’s chronicling of the representation of time in Western art history, I learn that in ancient art, time (always male) has none of the attributes we have come to recognize as properly his: an hourglass, a scythe, crutches, or even old age: “Ancient images of Time are either characterized by symbols of fleeting speed and precarious balance, or by symbols of universal power and infinite fertility, but not by symbols of decay and destruction.”13 Panofsky explores how contemporary figurations of Time as Father Time emerged from the identification of Chronos with Kronos (Saturn in the Roman pantheon): King of the Titans, eater of children. Plutarch, in the second century ce, was the first writer to identify Kronos with time, but writers and philosophers since have built on this identification, ascribing “new attributes like the snake or dragon biting its tail, which were meant to emphasize his temporal significance.”14 Kronos’s conventional implements, like the sickle or scythe, shifted from signifiers of agriculture or castration to marking “tempora quae sicut falx in se recurrunt” – time repeats itself like a curved scythe (or sickle) – and the mythology of Saturn devouring his children morphed into the trope of Time consuming “whatever he has created.”15 Hourglasses, zodiacs, winged figures eating infants, and old men on crutches are among the conventional symbols that emerged to represent “both the abstract grandeur of a philosophical principle and the malignant voracity of a destructive demon.”16 Knowing this

1.1 Betty Roodish Goodwin, Untitled, 1963

fusion of Chronos with Kronos, I look at Goya’s Saturn Devouring His Son and think: how a past can swallow up a future. I also think: not necessarily. Historical figurations of time in Greco-Roman or European conventions are too violent, too dramatic – too patriarchal – to capture my understanding of the chronic. I want an image rooted in uncertainty, an image that features fragility and deterioration but also endurance. I want something provisional and material, something bound by gravity that can also float. I find a kindred spirit in Canadian artist Betty Goodwin. Her monoprint Untitled, 1963, depicts an unfinished figure emerging from “a swirl of marks.”17 The line work is deceptively simple; scribbled texture generates a sense of movement and density from the shoulders down. Dark splotches throughout the legs and torso are ambiguous. Are they nodal points holding the figure together? Or are they zones of deterioration, eroded by the daily wear and tear on a body? It is a body in process, marked by time as a chronic condition. Monoprints, as the name implies, are singular works. In photography – whether analogue or digital – infinite copies can be produced from a single negative or shared code. With a monoprint, each print made from an inked

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surface is unique. Susceptible to the vagaries of time, a monoprint is analogous to the situation of embodiment: each person has only one.18 In Untitled, 1963, the paper’s material vulnerability finds an echo in the figure’s ephemerality. Goodwin emphasizes intense scribbling and horizontality; the form is suggested but also partial. Both arms are rendered only by outline, and only one extends into a hand with fingers. The other arm stops just short of the wrist, its empty socket resting beneath the outline of what could be an ear or the figure’s head. We see childlike eyes, nostrils and mouth sketched in, and what seems to be tears flowing from her eyes. Compared with the density of the torso and legs, the figure’s head appears weightless. The scribbles write her body down; the head and arm counter with lightness. The longer I stare at this print, the more I get lost in its lines and splotches. I see a clothesline like the one Mom used in the backyard of my childhood home; a tangled mess of yarn; a spiderweb whose fragile threads together create a springy, tensile strength; and nerves lit up by pain signals. I see a pen scratching out words on foolscap and ink blotches that could double for black holes. I see a galaxy of constellations and a figure who may be falling but who equally may be floating. Floating represents a suspension of our ordinary boundedness; it’s a temporary liberation from the forces of gravity. Chronic pain is heavy, but not exclusively so; there are moments of lightness and humour within the grind. Goodwin’s ungrounded figure holds open the possibility that gravity might be held at bay, even if only temporarily. To write the chronic entails attending to how pain interrupts life, but also to how pain can sometimes be interrupted. In 1992, Dr Dre released his now-famous album The Chronic, which had become a slang term for hydroponically grown marijuana. Snoop Dogg, who is featured on the record, explains the origin of the term to Seth Rogen during an interview on ggn News. It was all a dope-fuelled, linguistic misunderstanding. He was smoking weed at a party in 1991 when someone told him that it had been grown hydroponically. Snoop Dogg was so high, he thought he’d heard “hydrochronic,” and it didn’t take long before the term was shortened to “the chronic.”19 According to Snoop Dogg, this linguistic misunderstanding metamorphoses into a new term thanks in part to the language of Ebonics: “In Ebonics we always got our own way of sayin’ shit and translatin’ which we thought we heard and that’s what the way we thought we heard, it was

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chronic.”20 As Snoop Dogg relays the story to Rogen, Rogen is rolling a cross joint and giggling, thoroughly enjoying this vernacular history. A few minutes later, Snoop Dogg clarifies that “the chronic doesn’t mean the same thing as chronic illness.” Weave them together, though, and moments of convergence emerge. “The chronic” can induce lightness and hilarity in addition to solemn contemplation. Sometimes, when I look back at the decades of treatment attempts and remember bizarre or humiliating moments in front of clinicians, I just burst out laughing. It’s the kind of laughter that comes with a good buzz. Weed warps one’s perception of time; slows it down and speeds it up independent of linear clock time. Chronic illness compels a dogged focus on temporality, from the daily (How long will it take to walk to X and what level of pain will this provoke? or How long will it take to recover from the next crash?, etc.) to an accounting of a lifetime: How have these decades been lived and how might they have been lived in the absence of pain? Snoop Dogg’s origin story also nicely grafts on to another usage of chronic from the forties and fifties onwards: “a habitual drug user.”21 Chronic pain patients like me are encouraged to develop habits of care: regular exercise, consistent sleep schedule, and daily medication, which may now include habitual cannabis use. We know that marijuana can reduce pain, generating the utterly tautological observation that the chronic can ease symptoms of the chronic. Weaving all these senses of chronic together, I remember the French chronique and its connection to history via “chronicling.” I think of history – and storytelling is a form of history – as replete with mixed messages, and as a drug that sometimes heals, sometimes harms.22 It can generate paranoid delusions, a gentle high, or sometimes nothing at all. Outcomes cannot be known in advance and conclusions don’t constitute the end of the story.

There Is No Aftermath At the end of Karen Russell’s extraordinary novel Swamplandia!, the protagonist Ava Goodtree reflects on all she’s experienced over the course of the story: “But things can be over in horizontal time and just beginning in your body, I’m learning.”23 The novel opens in the family’s alligator-wrestling

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theme park, located on an island off the Gulf-side of the Florida coast. Over the course of the story, Ava loses her mother to illness and death and the family splinters apart, leaving their home behind as each contends with their own challenges before reuniting in the bleak city of Loomis. Ava’s journey takes her on a trek with the mysterious and possibly magical Bird Man who turns out to be a sexual predator. Once reunited, the family begins the process of rebuilding their lives by narrating their stories. Ava’s reflection on the difference between horizontal and bodily time, cited above, swirls in my mind. It makes me wonder at the relation of time to telling, of time to understanding. It makes me wonder whether there is such a thing as aftermath at all. “Horizontal time” designates conventional linear time: there are sixty seconds in a minute, sixty minutes in an hour, and years proceed in only one direction: forward. But Ava understands that her body is not located in horizontal time, and that no punctuation can make it so: “Sometimes the memory of that summer feels like a spore in me, a seed falling through me.”24 Experiences embed themselves, and bodies prove rich soil indeed. Spores germinate, stories bloom. Curiously, Ava uses the continuous present here: the seed falls through her body in an unending now, the material of experience pulled by gravity into a story without end.25 This same temporality catches me in Ava’s distinction between horizontal and bodily time. Awareness of impact comes after the comma, after the events. The things that are over in linear time are only just starting in her body. It’s a weird temporality she maps here, and one that speaks to my understanding of chronic time: things unfold, rear up, settle down, change shape. What things don’t do is end. I think of this quality of ongoingness and metamorphosis as the chronic tense. Things that are chronic mutate over time; their meanings shift as the years accumulate, but they never disappear. Nor is it possible to locate a distinct point of origin; discord was brewing in my body long before I realized. My pain is not the result of a single event I can trace, nor has it been a static condition. Different components flare up in both predictable and unpredictable circumstances. More conditions accumulate. The flare-ups generate varying responses within me as well. At times full-body pain is just something happening; it’s no big deal. I rest; I recover; I move on. Other

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times the impact materializes as despair that seeps through everything, casting a pall over past and future. Either way, recurrence is guaranteed. Having pain recur over decades becomes a matter for anticipation, and hence another temporal feature of the chronic takes shape: waiting. Waiting for pain or vertigo to rear up is like watching tropical storms develop into hurricanes: you never know whether they will fizzle out or swell. The waiting makes you cautious. Knowing what’s coming becomes its own form of conditioning: you adjust your life to prevent the next storm from gathering. Physicians prescribe rituals of management to control for flare-ups. Go to bed at the same time; don’t drink; exercise regularly but not too much; reduce your stress; practise mindfulness; stretch. Repeat. The chronic conditions the person to regulate. Spontaneity becomes synonymous with danger. You attune yourself. Sometimes you break the rules and walk longer, or drink more than you should. You wait for those mornings when you wake to find your hip has shattered into shards of glass, those evenings when the lightest brush of a finger initiates a bloom of agony in your bones. None of this shattering and blooming look like anything from the outside. By way of describing the ongoing impact from their respective ordeals, Ava imagines that the family’s alligators have now moved inside their bodies, “thrashing inside us in an endless loop.”26 Ava’s alligators live within her, imperceptible to outside observers. Likewise, my pain doesn’t come with observable markers.27 If you pay attention, you might see me lean against a nearby wall; maybe you’ll notice how I transfer the weight between my feet to give one leg a break. Most likely, nothing will appear unusual unless it’s a particularly bad day, in which case you won’t see me at all. In a visually obsessed and empirically oriented world, invisibility is a curious experience. I teach the history of photography, and one of the themes we return to repeatedly is the nineteenth-century Euro-American belief that outsides reflect insides. The development of composite photography, for instance, famously reflects the insidiousness of this belief with examples like Francis Galton’s anti-Semitic composites of the Jewish type, which claimed to distinguish between white Europeans and the Jewish Other by attending to certain observable traits.28 In early analog photography, a composite image was made through the trick of multiple exposures: photographing several images onto the same photographic plate and then printing as

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a single picture. The pseudo-logic at play here – racist, sexist, classist, and certainly ableist – suggests that by gathering enough images of one type of person or group, we can detect physical similarities believed to denote something essential about the inner character of these individuals. For many people with chronic pain, their conditions look like nothing at all, either to the naked eye or in the diagnostic image. I wonder, What would a composite image of chronic pain sufferers look like? My instinctive answer to this question is that such an image, like all its forebears, would tell me absolutely nothing. If the who’s estimates are correct and over 30 per cent of the world’s population live with chronic pain – a number guaranteed to be on the rise with the phenomenon of long Covid – then a composite portrait would simply depict an ordinary human doing their best to struggle through. Composite photography can’t help. I narrow my focus. Is there a way to visualize the chronicity of my own pain? How does one capture duration? I think of all the intake forms I have filled out over the years, those sheets of paper asking patients to indicate sites of pain on simple line drawings. Each of these forms can be traced back to “The McGill Pain Questionnaire,” first developed by Ronald Melzack in 1975, which was “designed to provide quantitative measures of clinical pain that can be treated statistically.”29 The questionnaire features a list of words divided into categories along with frontal and rear diagrams of the body. Patients are asked to check off only one adjective in each category and mark the location of their current pain on the figure drawings – a snapshot of what the patient feels in that moment. The significance to pain research has been monumental. Whereas pain had conventionally been measured primarily in terms of intensity – mild, moderate, or severe – Melzack recognized the insufficiency of this linguistic stinginess. Writing that “the word ‘pain’ refers to an endless variety of qualities that are categorized under a single linguistic label,” Melzack built a lexicon designed to convey the complexity and variation of pain experiences.30 Beginning in 1939 with a list of forty-four words, Melzack continued to pay attention to the descriptors used by pain patients in their conversations with physicians and developed a final list of 102 words.31 Working with physicians, students, and patients, he then categorized the words into three major classes and twenty subclasses, an organization designed to capture

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the sensory, affective, and evaluative aspects of pain. Finally, each word was assigned an intensity value and ranked accordingly. The resulting list appears as a cascade of words. When I was first presented with one of these charts in the late nineties, it felt like hope. I believe in words, and through the combination of linguistic descriptors and careful mapping of the figure illustrations I could make my pain intelligible. And if I could do that, then surely someone could help. What imbued me with even more confidence was that single horizontal line of mysterious letters at the top: pri, a, e, m (s), m (ae), m (t), pri (t). Each set of letters is associated with a range of numbers and a blank line waiting to be filled in by the physician, who takes my marks and performs mysterious computations. As the physician completes these calculations, she can derive one final number: ppi. Standing for “present pain intensity,” the number tells a story about the patient’s pain in that moment.32 Language and illustration transmuted into math through secret statistical formulas. An alchemy of promise. But the question “What does it feel like right now?” is tricky; the now is always inflected by what has come before as well as our imagination of what might yet be. Each time I fill out a version of these forms, I feel fragmented, partially erased. I’m asked to imagine that a precise moment can be excised, that the isolation of a pain experience can generate a useful picture for treatment. If a composite photograph of me layered over time would show nothing so much as subtle shifts in anatomic structure, then one of these forms feels akin to a cadaver slice. I remember Avery Gordon’s list of why dreams die from The Bluest Eye. One by one, each reason can be considered carefully, handled intellectually. Massed together, they overwhelm. I begin to imagine a different kind of composite form, a form that violates Melzack’s intention by superimposing each of the diagrams I have filled out over the years. I imagine checking off every adjective that has ever applied to get a picture of accumulation. I crosshatch almost thirty years of pain on these hollowed-out figures and watch the image change into a story of how things pile up over time, of how pain acquires density. The exercise feels shitty. While I appreciate how the waterfall of checkmarks depicts pain as a shape shifter – how it can flicker, ache, pierce, nag, and jump all within a day – my focus returns always to those figures. I look

1.2 Above Melzack Pain Questionnaire, from Varoli and Pedrazzi

1.3 Opposite Melzack Pain Questionnaire, completed by author

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at them and project forward into the future: in ten years, will any white space remain? Each scribble reminds me of a time before I had become aware of that particular body part, and I begin to realize the extent to which pain has made me conscious of having a body. I play one of those endless bargaining games: If I could choose to have just one region rendered miraculously pain free, which body part would I choose? I put the form down and walk away. I return to it repeatedly over the ensuing days. Something about the structure of the inventory begins to neutralize its impact. From a distance, my waterfall of checkmarks could be an organized grocery or to-do list. Similarly, my attempt to represent the spread of agony over time with those line drawings is hindered by their passive, deadening neutrality. They feel akin to corpses on a slab awaiting autopsy: full of information without feeling. Taken as a whole, the form is too ordered, too contained. The clinical detachment of those line drawings circumscribes my scribbles, and the structural separation between the box of language and the figure illustrations divides what Melzack was trying to connect: the linguistic with the visceral. I need a different model, one that tells a story of accumulation and ongoingness, a story that exceeds the boundaries of a single page and extends in all directions. I turn to the strange but captivating figure of the Wound Man, a recurring character in several late medieval manuscripts as well as numerous early modern print books. In his earliest iterations, the Wound Man functions both as an illustration of all manner of injuries and maladies, and as a guide to potential cures and treatments.33 This guiding role is literal: in many of these early surgical books he functions “as a human table of contents for the cures contained within the relevant treatise.”34 He is both a text to be read and an index pointing beyond himself. In images of the Wound Man, this relation between text and image is paramount. Like much medieval medical illustration, text contributes to the aesthetic rendering of bodies and in turn the creation of medical knowledge.35 In this southern German example from around 1420, the Wound Man’s arms extend out in a gesture of excitement and invitation; his legs are engaged and active. In contrast to the utter passivity of the figures on Melzack’s questionnaire, a passivity that reminds me of medieval representations of

1.4 Wound Man from southern Germany, ca. 1420–30

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the crucifixion, I see liveness. Blood is flowing, the plague-carrying flea is biting, and somehow there’s a toad in his belly. Knives, spears, and arrows penetrate his flesh; buboes are swelling.36 As I watch that little puppy nip at his ankle, Wound Man looks to be shifting his weight to shake free of the dog’s teeth. Brief descriptive sentences surround this scene of bodily assault, each accompanied by a specific number.37 All of this happens in colour, adding to the vitality and energy of the image. The blue of his Speedo-like briefs is the same blue of the knife blades. The green of the buboes could be a sign of pus or necrosis. Blood, of course, is red, as are those small numbers accompanying each section of text. Each bloody number directs the surgeon to a specific section in the related medical treatise containing detailed information on treatment.38 Despite all this violence, Wound Man gazes out at us without any indication of agony written on his face. Much like a person with chronic pain. His outstretched arms seem invitational and active. I imagine he’s teaching a class using his body as the source material, and the more I read about his history, the more convinced I am of his status as pedagogue.39 Art historian Jack Hartnell tells us, “The Wound Man … becomes the person to whom the reader should look for good guidance in giving health, allowing for the dynamic possibility of a two-fold reception of the figure as at once a bookish diagram and a real living being, a body that inventively categorized nuanced information for the medical practitioner by presenting a vivid, animated patient who was himself meant to be read like a book.”40 What does it mean to be read like a book? In part, the answer depends on the genre of book being read. As a living diagram, Wound Man is uncontained by the rectangle of the page; he points beyond himself to other bodies and other texts, each of which encompasses their own histories of treatments, failures, miracles, and wonders. If this is a genre, then I picture it as diaphanous and resilient as a spider’s web. I weave with filaments extending out from zones of pain through tissue, bone, and muscle, filaments making nervy jumps between synapses, picking up memories and weird connections along the way, all to reach these fingers and soon after, this page. I never seem to reach the end of these strands. Each day, they push at my fingers from the inside, pressing for inclusion in this strange crystalline structure that is my textual body. I pull at them and think again of Goodwin’s monoprint; of how her scribbled lines loop and circle to make a body without origin or ending

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point, an entangled, swirling mass. And I’m no Theseus: each thread I follow leads me further in and more tangled up with a body that just accrues more filaments, gossamer, sticky, enduring, hoping to catch you up in a story still spinning out.

Foot Notes z

But I want to think about walking once more: Hermes’s winged feet, Oedipus’s swollen foot, Achilleus’s heel, Christ’s pierced feet. Walking is not easy. Teju Cole, Blind Spot

First Steps The good ice only formed in certain places.1 Never on the road or the sidewalk, but just between – that narrow grey strip dividing sidewalk from road where the rising concrete gave the ice a shape to become and cling to. We would try to run past one another to reach the parts that hadn’t been cracked yet. It was on grey days, when the light was flat all day long, but at its flattest just after school, and on our walks home we wouldn’t speak, just walk one winter boot in front of the next in order to hear the satisfying sound of the ice giving in. The sun was always dropping below the rooflines and all around was a silence that seemed to be waiting for our arrival, like it was waiting for us to break it up. This was our trajectory, up this narrow strip; sometimes I led, sometimes he did. When he led, I tried to be selfless about it, to let him crack the new ice joyfully, but apprehensive that his feet would get the last of it, or the best of it. The pleasure I felt when the pressure of my foot released that crisp snap was always followed by the worry that there was nothing else up ahead to break.

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At sixteen I realized we hadn’t broken the ice in ages. We had been growing up and not noticing the weather, talking instead about important things on our walks home from school (ex: Could Tiffany be considered a musician even though she was manufactured pop? What was the nature of authenticity in artistic practice? Which Peter Sellers movie should we watch next?) and forgetting those childish games. Then one year he went off to a different school and for the first time in my life, I trudged home without him. On one of these solo walks, made before iPods and even Walkmans were de rigueur, I noticed the ice. I heard in my memory that joyous snap. I wanted to feel that craaaaaack again, so I raised one boot onto the glassy surface, anticipating that perfect aural connection between foot and ice. But the ice was muted; its response to my pressure dull and flat. At the time, I thought I had just misjudged the ideal spot for my foot to make contact, but of course the difference was his absence. Without him, there was no communion of silence and desire to generate such reverberations. It was an early lesson in mourning. At fourteen, I owned cherry red Gloria Vanderbilt heels with alchemical properties. When I put them on, I became impenetrable, like Sigourney Weaver in Working Girl. The name – Gloria Vanderbilt – sounded so fancy. I thought she must be like Barbie, living in a mansion somewhere wearing the exact same shoes while she did grown-up things like wear glamorous dresses and make phone calls. At age five, I was the Wicked Witch of the West for Halloween. The crowning jewel of my costume was a pair of matte black pumps. I clomped around the school fully in possession of my temporary evil. Early on, I learned that other kids mistook me for the teacher, because of the sound my shoes made in the hallway. Sneakers or little black plastic soles – it didn’t seem to matter – something about the way I walked in all those shoes sounded to them like the roundness and solidity of authority. Each footfall was deliberate, one after the other generating a rhythm on repeat. If the teacher was already in the classroom and they heard that sound, they knew it could only be me. I had liked the sound my heels made until I heard how it marked me as me. I knew immediately that it would be better not to stand out like that, so when I found myself alone in a hallway, I walked on tippy-toes. I don’t remember the year I got my first pair of cowboy boots. Growing up in Calgary, I had been riding horses for years at summer camp in the

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foothills of the Rocky Mountains and at some point, these leather boots replaced the rubber ones I had begun with as an eight-year-old. They were black with white stitching, and I rode tall in the saddle with them. I wore those boots when Snort, the seventeen-hand-high wall-eyed horse, tried to buck me off in the middle of a pond. I was so short that I couldn’t bridle him myself, but I was strong enough to stay on and stay upright. The stacked heel kept me in the stirrup while my thighs squeezed tight. I knew Bryn – the cowboy guiding us through the mountain – was watching from the other side of the pond, so I wouldn’t let myself hold on to the horn for fear he’d lose respect. I heard him laughing so hard during the bucking, but when Snort and I made it across the water and my hands were calmly holding the reins, Bryn just looked at me and nodded. I fell in love with Snort that day, and for many years after I daydreamed about the two of us together. I imagined a life in which Snort and I just lived and rode in the mountains; it was a modified Thoreau-style existence in the woods, just as peaceful and pure as the one written about by that New England walker. I never felt as though I “mastered” Snort. Rather, I tried to show Snort that I could learn his rhythms, that I understood his strength. In that slough, we established trust. I was wearing those boots when I learned to ride bareback. I fell off and landed – hard – straight on my head. It was the eighties and we were in the mountains, so I stood up and got back on the horse. Nobody thought about checking for concussion or calling it a day, least of all me. There was an unspoken pact among our small group of girls that we would outride anybody and never complain about cold or pain or fear. When we came to a part of the terrain so steep that the horses had to sit and slide down because they were afraid of the angle, we white-knuckled our way through it and laughed at the bottom. We took to waking earlier than the rest of camp, to go and get the horses out from pasture for feeding and bring them back to their stalls ready for the day. One morning, we had a little time to kill before breakfast, and we lingered around the fencing. It was electrified. We decided to form a chain holding hands, and the one closest to the fence would touch it. We wanted to feel the current run through us. We hypothesized that it would gain in strength with each body it passed through. We took turns at the front of the chain and at the rear. We laughed to stave off the fear. Hands holding hands

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would jerk upwards with increasing speed and force until the current reached, or was presumed to reach, the girl at the end of the line. Her body would shudder, and she would flail her free arm about, dispensing the charge. I remember enacting those same gestures when it was my turn at the tail, but I’ll be damned if I can recall whether the charge was real or imagined. Had the electricity really affected us? Or had the first girl at the end exaggerated the sensation, and had we all privately agreed to mimic the performance of the first, not to be left out of such an experience of extremity? It has taken years for me to understand that the real and the imagined coexist and cocreate all the time. When I picture that scene today, I see a group of girls convulsing and shaking like a cowgirl version of mass hysteria. Now, I read those cowboy boots as a sign of growing up. The rubber boots were fine for trail rides or trotting around in the ring, but these leather-stitched beauties were a visible affirmation of leaving childhood behind, of being able to stay upright in the face of all sorts of rearing up and falling down. This desire to stay upright and supercharged would return, disconnected from the memory of Snort and all the other singular, beautiful beasts I loved during those summers. Those camps I’d been going to had been Christian camps. That fact had always been incidental to me, and yet somewhere along the way, I came to associate the warmth and love I felt there with a Christian God. For most of my adolescence, I was a born-again Christian. It took years before I figured out it was Blaze and Ryder and Winnie – and finally Snort – with whom I had actually established a connection. In retrospect, it’s as though someone pulled the plug out of my horse-receptor and inserted it into a new, God-shaped receptor. The story I tell at parties is that I mistook my love of horses for love of God. People laugh, and I laugh, and we move on. But it’s true. I got my wires crossed and the boots were disconnected from those beasts and from that glorious group of girls. I was wearing those boots in high school biology class when Dave laughed at how I walked. He never could explain what specifically was peculiar and different, but he maintained that my feet carried my body in a way that was strange and worthy of attention. I thought it might be the boots, but he said I walked weird in any old shoe. It was good-natured ribbing, but I think back on those days and wonder if he had lit on something secret going on inside my body, something that the kids in elementary

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school had gleaned as well. Did they all recognize something that I – and later all the doctors and physiotherapists and massage therapists and chiropractors and acupuncturists and New-Agey prophets and nutritionists and healers and naturopaths – just could not see? In the first two years of my undergraduate degree, I walked. Sometimes hours per day. I walked either with K, or alone. More than twenty years later, I remember those walks with K as a time I unloaded despair after despair on to her, how she bore it and endeavoured with so much love to relieve it. I’ve forgotten the precise nature of each anxiety, but the shape of it all was theological doubt that threatened to destabilize the structure of belief I had erected after the horses, and that shook me to my core. I walked in hopes of resolving my skepticism, of putting to rest once and for all that most toxic thought: doubt. The two of us, like a teenage Virgil and Dante, trudged through Ontario falls and winters seeking release, seeking answers. Somewhere in the midst of these wanderings, K’s feet began to hurt. She changed boots, more than once, but nothing helped. Her feet became enemies. They screamed at her each morning and harangued her through classes and dinnertime and even into her dreams. Her pain was unforgiving and brutal. For so long – longer than she should have – she kept walking with me. We learned eventually that K had developed bilateral plantar fasciitis. She woke each morning with that telltale stabbing through the heels and since she had it in both feet, there was no escaping the build-up of scar tissue with each and every step. Centuries of memoirs and walking essays have established a romantic link between walking and thinking. In writings by Rousseau, Wordsworth, and Thoreau, the body disappears on a rural walk: the poet’s imagination, or glorious Reason, or transcendent Nature feature prominently while the body seemingly dematerializes.2 In more city-based writing about walking and observation – flânerie as it came to be known – a solitary man (usually a man) drifts aimlessly through the city, noting his observations down for posterity. Marcel Proust describes his two childhood walking routes – the Méséglise and Guermantes Ways – as providing him with “poetic pleasure” for contemplation of all manner of people and objects. These routes took him through both town and countryside, such that his observations extended from encounters with the gunsmith to study of a “neurasthenic” water lily.3 Page upon page of detailed ruminations about hawthorns, or the

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angle of the sun as it strikes the steeple at Combray, take us deep into the maze of the narrator’s memories, but we float through these memories without any sense of a body attached to them.4 Similarly, in Virginia Woolf’s glorious “Street Haunting,” the writer’s observing gaze is central to the narrative; her body is not.5 Even Rebecca Solnit, who lovingly traces an idiosyncratic history of walking, rarely describes pain during her thousands of hours on the trail.6 Walking is like riding a bike – once you learn how, it’s automatic and mostly unconscious. It allows you to get from A to B, or to think through a question, or to watch the passing of everyday life. It’s by turns romantic, poetic, artistic, a form of protest against urbanism, or, simply, a means of transport. But the feet, and by extension the bodies, of these writer and artist walkers, are elusive. K became a detective of pain. She scrutinized each part of her foot, wanting to crack the code of which movement made it worse, which better. Could she walk on the edges of her feet, or on the balls? If she iced them morning and night, if she took anti-inflammatories, if she rested (how can you rest as a student getting to class then work then class again) – would any of this bring relief? She began cycling everywhere, even through Ontario freezing rain, to save her feet from the pressures of carrying her. I remember the first time she uttered the word chronic. I was eighteen and lucky – I had no reason to understand that word. Quietly one day, she asked, What if it’s chronic? She sat on her bed; the sun poured through the window behind her and made lines on the quilt. She traced the lines and whispered the word. I could tell she’d been holding on to it for a while, that it had been weighing heavily on her. It hung in the air between us, charging the atmosphere like a black hole or an opening into a new world, unmapped and unwalked, but with a baleful gravitational pull. Later, I would be able to trace its contours, to map its terrain of uncertainty and thwarted futures. But in this moment, with the sun filling the room and the lines on K’s quilt and her fingers tracing those lines, I felt only a vague danger. My father had also suffered from bilateral plantar fasciitis when he was training for a marathon. In high school, I had watched him return from training runs and put his feet on ice after dinner, watching the hockey game and suffering in silence. He eventually found a skilled massage therapist who ground the scar tissue out of his feet, but pain never stopped him from running. It seemed normal, to run through pain. Eventually, we convinced

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K to move to Calgary and live with us in the summers so that she could see this same massage therapist. And, eventually, this therapist helped K recover. Over time, we discovered that the issue wasn’t restricted to her feet; some kind of referral from a hip was to blame.7 K’s experience was my first lesson in how the source of pain may not be identical to its site of emergence. It was a lesson I would need to learn many times before understanding how a pain signal can get garbled because a network is overloaded. But for K at that moment, the news was good: her feet weren’t chronic. She returned not only to walking, but also to hiking, to capoeira, to all sorts of movements that demanded harmony with her feet. As K healed, my body began talking to me. About a year earlier, I had done a number on my hip while swimming breaststroke. It had always been my strongest stroke, and I went at it that day with unbridled enthusiasm. I kicked out hard and felt something shift in my left hip. Pain was not intense or immediate – the joint just felt off. I finished my swim, walked home, and noticed over the next few months that it became harder to put weight on that leg. The day I couldn’t put my jeans on without sitting down, I arranged a physiotherapy appointment. The physio declared nothing was wrong, so I limped home. For the rest of the school year, I gritted my teeth until I could return to my hometown to find better health care. The first specialist diagnosed a hypermobile and extremely irritated left sacroiliac joint. Her prescription was a long rehab process that would take months, and I should start out by walking for brief periods back and forth across the shallow end of a pool. Water, she explained, would take pressure off my joints. I found this utterly absurd. I was not remotely interested in committing to a several months-long rehab plan; I was certain I could heal more quickly. Part of my impatience was due no doubt to being eighteen, but more significantly, I am a product of industrial and late modern capitalism: faster is always better. I visited my father’s massage therapist, who suggested I try a chiropractor. After one treatment with him, I felt just about normal. After one week of seeing him daily, I had no pain in my hip. This didn’t last. Next, I started receiving messages from my feet. A stabbing through my heels each morning convinced me I had caught K’s pain through some occult form of contagious magic.8 I went back for massage, I got orthotics. I learned that I pronated – a lot. Once again, bilateral plantar fasciitis was the

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diagnosis. Time passed. I changed all my shoes. I wore anything that could hold my orthotics: hiking boots, Doc Martens, men’s dress shoes, runners. All the shoes were ugly. Other people recover from plantar fasciitis. Almost everyone in my immediate family and many friends have had it and healed from it. But no matter what I did, I couldn’t exorcise the demons in my feet. My hip kicked up regularly too, sending twinges and punches, reminding me that it was still present and irritable. I was told that my hypermobile left hip was complemented by a hypomobile right hip, and the two of them together created a compensatory dance that was sending asymmetric pressures down to my feet. Back at school, I stopped walking and relied instead on my bicycle, that most rational of inventions. As Angela Carter, that glorious fantasist who pulled me through my undergraduate degree, writes, “To ride a bicycle is in itself some protection against superstitious fears, since the bicycle is the product of pure reason applied to motion.”9 Reason took me places in those days, but it always left me just outside where I needed to be. I’d lock it up and then face the few remaining steps to class. Those steps had a soundtrack: I’d walk with Annie Lennox’s “Walking on Broken Glass” running through my head. I imagined tiny shards of glass embedded just underneath the skin of both soles. Each step dug the glass in deeper. I told people I had “bad feet.” I dreaded grocery shopping. Returning to Calgary for another summer, I narrowed my perimeter. I drove to work, to the pool, to massage and chiro, and then home. I’d sit at my desk and spend hours anticipating the agony of standing up to leave. I ruminated on feet. I watched the feet of others. I saw people pay no attention to how their feet could play tennis, rollerblade, jog, or chase a soccer ball. I saw how feet kept them standing at parties and going on weekend hikes. I saw people kick their shoes off at the end of the day and walk around barefoot and oblivious. I could no longer walk without orthotics; I began to resent all the shoes I could not wear, and the feet that could: anyone in Birkenstocks, platforms, jellies, flip-flops, heels, anything without a strap or a lace, anything for sale at the mall. I envied those feet; I hated mine. I fantasized about cutting them off. One night in 1996, I lay sleepless in bed, unable to get comfortable. It was summer in Calgary, and I was home from school. I tossed from side to side. I blasted Sarah McLachlan’s Solace, trying to drown out my throbbing feet.

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I kicked the duvet off; I watched the clock. I sensed something distant coming closer. Something was becoming palpable, if not tangible. The cd player shut off. I looked to my feet, a knee-jerk response to anything that seemed strange or unwelcome those days. Jamming my knuckle into the fascia, I tried to discharge some pain by grinding it out. Scar tissue popped and crunched under my thumb. Following the contours with my knuckle, I tried to find the edges of it, a ritualized demarcation of good territory from bad: the place it didn’t hurt. I couldn’t find the boundary line: the map had changed. Katie Stewart describes this kind of moment as an “atmospheric attunement”; Lauren Berlant calls it a “situation.” In Stewart’s words, it’s a “pause, a temporal suspension animated by the sense that something is coming into existence.”10 For Berlant, a situation “is a state of animated and animating suspension that forces itself on consciousness, that produces a sense of the emergence of something in the present that may become an event.”11 In that suspended animation of a summer evening, I came to sense that something had taken over my body and replaced it with this aching, despairing flesh. I had only been seeing my body in pieces; I had missed the moment that I became a chronic condition. z

There’s a never-painted Kahlo rolling around in my head: a woman stumbles down a broken city street. The air is lousy with the smell of fermenting yeast. Flat, grey sky presses down on her; store windows coated with grime and despair. Trash blows about the street in a silent dance with the woman’s brilliant white skirts, giving form to erratic and invisible gusts. Trailing from her stomach and extending in a wave behind her, a ragged, bloody umbilical cord strikes the pavement, shooting city signals back through her belly. There’s a red current of pain travelling from ground to abdomen, from woman to ground. It takes her measure; it measures the number of steps she’ll need to take before rest and how far she’s come. It calculates the hardness of the concrete with the accumulation of shocks to her system. It makes a calculus of her pain. The cord is a disinterested accountant, tracking the compounding cost of each step. If she reels the umbilical cord in towards her, she finds only the frayed ends of desire. z

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Tender Points In 1996, at the age of twenty-two, I’m told I have a syndrome that can’t be cured, whose reasons for emergence are shrouded from view, and that the symptoms themselves are largely invisible and unverifiable. I’m told that this syndrome usually affects middle-aged, or older, women, and that I’m a relatively uncommon case. I’m told there’s no reason for tears (which were leaking out of my eyes by then), and that at least I have a diagnosis. I drove directly to my gym, jumped in the pool, and swam as hard and fast as I could. As the tears erupted again and then again underwater, I dug in and swam harder. I swam to deplete myself. I swam to forget. When I was spent and felt only the exhausted endorphins shooting around my brain, I got dressed and drove home to the computer. I began to research this new word: fibromyalgia. It didn’t take long – not much was digitized at the time – but I did find confirmation that my set of symptoms was now being recognized as a syndrome with no cure. Today, the Mayo Clinic describes fibromyalgia thus: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Women are more likely to develop fibromyalgia than are men.”12 That summer night in bed, I became aware that my entire body ached. I had been laser-focused on feet for so long that the rest of my body had dematerialized, like an inversion of all those writers whose feet disappeared from consciousness as they walked. In 1996, the procedure for diagnosis was twofold. Doctors would rule out other autoimmune conditions through blood tests, and then conduct a Tender Point test. My blood came back clean: nothing to see here, it said. Clean blood leaves me feeling simultaneously grateful and crazy because I have no proof, no alibi. It’s the second diagnostic component that renders “positive” results. Tender points, first described by Scottish surgeon William Balfour in 1804 and elaborated upon by F.L. Valleix in 1841, are “painful points in various parts of the body.”13 Theories of these tender points evolved over the next two centuries in relation to myriad rheumatic conditions. The first

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contemporary description of fibromyalgia in 1972, by Smythe, included a description of tender points. In 1990, the initial criteria were established both for research and for clinical diagnosis: if the patient reports widespread pain, as well as tenderness from pressure applied to at least eleven of the eighteen tender points, and those points are distributed both above and below the waist, and on both sides of the body, then a diagnosis of fibromyalgia could be made.14 To illustrate the location of these special points, the authors of the 1990 criteria include an image that stops me in my tracks. Based on Jean-Baptiste Regnault’s 1793 painting The Three Graces, the authors have altered the image to suit its new context. Alternately transfixed and bemused by the presence of this threesome in this context, I am compelled to look again at the original from which this drawing was made. Their hairdos have been

2.1 Left The Three Graces adapted to demonstrate fibromyalgia tender points 2.2 Opposite Jean-Baptiste Regnault, The Three Graces, 1793

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modified and their voluptuousness curtailed, but that figure on the right still gazes straight out at the viewer, and the neoclassical nude form is retained, if abstracted. In Regnault’s precise style, the Three Graces with arms linked together can also be viewed symbolically as a single figure depicted from three different angles, and this may be one reason the authors chose the image. In the medical version, the nymphs’ positioning enables the authors to depict all eighteen tender points, pictured here as black orbs, in a single frame. I find myself obsessively counting the points, coming up short, and starting again. I explore their figures, hunting only for this one specific marker: the correct number of black points. The process interpellates me into a clinical gaze: I ignore everything but those dots, those imaginary signifiers for an illness with no signified. It’s a compulsive calculus: the Graces have been reduced from three to one, and the one has been split into three.

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While her/their pains have multiplied, I keep count. When I reach eighteen, I seek to verify and start again, like a good empiricist. Sometimes I find seventeen, sometimes only fifteen. I start the count again, like a doubting Thomas. I am looking at this drawing for reassurance, for concrete certainty that my pains match up to this map, and thus achieve a certain existence beyond my own perceptions. But somewhere between the image and my brain, the points flicker in and out of my field of vision; I lose faith in the entire enterprise. The Three Graces, or Charities, come to us from Greek mythology. They are sisters, daughters of Zeus and Hera, named Euphrosyne, Thalia, and Aglaia. Together they signify “charm, grace, and beauty”; they are eternally beautiful and eternally young.15 Artists have drawn inspiration from these classical sisters for millennia, from Botticelli’s Primavera to Kehinde Wiley’s Three Graces (2005) and Yinka Shonibare’s headless Three Graces (2001). In Regnault’s neoclassical version, conventions of idealized representation are on full display; the sisters’ effortless contrapposto emphasizes a sense of ease and a dynamic liveness. Maybe the authors of the 1990 article are art lovers, maybe they admire Da Vinci’s anatomical drawings or paintings of operating theatres and vivisections. For whatever reason, they borrow Regnault’s Graces and install them into a situation of chronic pain. Charm, beauty, and creativity are made to occupy a black-and-white world entirely abstracted from their joyful existence. Those opaque blots start to look like bullet holes on a shooting target, and I search for any indication that their bodies have been impacted, but these tender points seem not to have affected them. Like the Wound Man, there is no grimacing, no subtle lean from one foot to the other, no cradling of a bad shoulder. Even the figure on the right, who gazes out so mysteriously in the Regnault, seems utterly impervious to these holey impressions. These three beauties are now eternally youthful and eternally in pain, but you’d never know it from looking at them.

Walking after Diagnosis Diagnosis kicks off a new set of relations to the medical and paramedical establishments, and a new kind of research that much later I will come to identify as analogous to that of the religious seeker. In the immediate after-

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math of diagnosis, I learn that fibromyalgia requires a specific approach to bodily discipline: routine sleep and waking times, careful attention to diet, and the correct amount of exercise. Exercise must be consistent, but not too intense. If I overdo a workout, I will pay for days. If I fail to maintain a baseline level of activity, I will ache like I’m ninety. High-impact exercise is verboten, but cardio is important. I begin with walking. I find the courage to do this from my father. This marathon man gathers me into the car every night after dinner, drives us thirty seconds down the hill to a short, flat stretch of road, and we walk for ten minutes. Five minutes out, five minutes back in ugly running shoes taking their time. Once a day, ten minutes silence eighteen points. My feet, still in agony, begin to trust the security of fiveminute arcs and ten-minute loops.

Hysterical Echoes Unless it’s accompanied by an external signal like blood or a broken limb, pain does not present itself to outsiders. Chronic pain is often invisible: to be in pain like this is to be split between the howling immediacy of an interior state and the necessity of getting along in the world. I might wake up with a hammer in my hip. As the day progresses, I could find a knife in my heel or witness the spread of a dull, diffuse ache in my legs and shoulders. I will smile at you on the street while my feet weep in their shoes. I think of my body like a crime scene – I look for clues that might point me to reasons, or even a culprit. If I could find a reason, I think, then I could find a way to change it. Some days I wake up and can’t move my neck. It might last for days. So far as I can tell, there is no reason for any of this; it just comes and goes. The medical literature describes this particular pain experience as nomadic: “the pain may move – a process called the migratory phenomenon – from one part of the body to another over time.”16 For anyone familiar with the history of psychoanalysis – and the broad history of hysteria in the West – the reverberation between fibromyalgia’s description and this most “protean” of illnesses is palpable: migratory pain, tender points, the uncertain role of trauma, symptoms without obvious causation … each of these elements shows up in the medical literature on hysteria and neurasthenia.17

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Had I been born twenty years earlier, I may have been diagnosed as having fibrositis, or as being just another hysterical woman in need of valium; 100 years earlier – malingerer or drug abuser; 150 years earlier – hysteric or neurasthenic; early modern period – witch. The tender points described by Smythe in his 1972 discussion of fibrositis (an earlier term designating fms) coincide uncannily with what nineteenth-century French physician Jean-Martin Charcot called “hysterogenic zones,” discrete areas on the body that Charcot asserted could elicit pain under palpation. The clinician can either stimulate or arrest a hysterical attack by applying pressure to these zones.18 In a 2015 issue of the journal Neurology, three physicians republished the fibromyalgic Three Graces in order to compare it to a nineteenth-century illustration of hysterogenic zones from Charcot’s case histories. The location of these points, they exclaim, overlaps perfectly.19 They make a composite image by way of illustration, and I find myself, once again, getting lost in all these dots. I notice how different the bodies are in this comparative figure. Regnault’s Graces exude a breezy, feminine sensuality in contrast to Charcot’s hysteric with her blocky, wide-hipped and bald body. She reminds me of medico-scientific photography of the period, in which medical subjects, colonized and enslaved peoples, and criminals were all framed using this pseudo-scientific, matter-of-fact frontal view. Regnault’s beauties, who are primarily interacting with each other, seem as though they have just arrived in this intimate circle. I imagine them walking from disparate points in a secret garden to meet each other – the contrapposto of the central figure suggests they have all stopped, mid-step. They step gaily, without worry, without guile. Charcot’s hysteric, by contrast, is rooted and stationary. I can’t imagine her walking anywhere, ever. While the Graces seem not to even notice their tenderness, the outstretched arms of Charcot’s hysteric call attention to her hysterogenic zones. The longer I look, the more she reminds me of paintings of St Francis of Assisi with arms extended, displaying his stigmata. St Francis had five miraculous wounds to echo the ones Christ received from the crucifixion. I count seventeen on Charcot’s figure, and those points over her pelvic zone challenge Charcot’s rejection of gynecological etiology: in women with ovarialgia, hysterogenic zones over their ovaries, Charcot would press on these points to arrest a hysterical attack.20 When I press on my ovary points, nothing happens.

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2.3 Overlap between fibromyalgia tender points and Charcot’s hysterical zones (detail)

Charcot’s attention to this part of the female body was not random. The word hysteria derives from hyster, Greek for uterus. For the ancient Greeks, nomadic uteruses were the sensible explanation for migratory pain. The wandering womb was believed to travel around the body, particularly affecting respiratory health and causing an impressive range of other symptoms. The Greeks seem not to have used the word hysteria to designate a recognized disease, but they certainly referred to an erratic womb kicking up all kinds of trouble inside women’s bodies.21 As one Hippocratic text states, “the womb is the origin of all diseases” in a woman.22 Symptoms vary depending on whether the womb is deemed to be lacking in essential moisture or suffering from an excess of heat. In one case history, for instance, the womb of a woman lacking moisture “‘throws itself ’ on the liver because this organ is full of moisture. This causes sudden pnix, by interrupting the route of the breath through the belly. During this pnix, the whites of the eyes are turned up, the woman is cold, and her complexion is livid; she grinds her teeth and has excess saliva … If the womb stays on the liver or in the area of the hypochondria for a long time, however, the sufferer will be choked; if it moves to the mouth of the bladder, it will cause strangury; or it may go to the limbs or side.”23 However absurd this description sounds to twenty-first-century ears, what emerges most forcefully for me in these case histories is twofold: (1) the writers’ assumptions that all these strange

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symptoms have a physical, or organic, cause: the womb moves around in search of better conditions; and (2) that men’s bodies are the silent standards against which women’s bodies are measured (as being too wet, too dry, too hot, too cold, etc.). As King eloquently concludes her history, which begins with Hippocrates but wends its way to the early modern period, “the message remains the same: women are sick, and men write their bodies.”24 It was the nineteenth-century translators of the Hippocratic texts who generated the myth of a recognized and unchanging disease called hysteria extending from ancient times to modern days.25 Charcot’s rejection of the uterus as the etiology of hysteria distinguishes him both from two millennia of medical writing and from the majority of his contemporaries.26 In his view, hysterical symptoms of all sorts were believed to result from an overexcitation of nerves. Even more significant: Charcot insisted that male hysteria not only existed, he provided over sixty case histories of men he diagnosed as hysterical at the Salpêtrière. Despite this neurological approach to etiology, the symptomology Charcot describes subscribes to recognizable gender divisions of the time: female hysterics were discussed in terms of their emotional/mental states, while male hysterics tended to be described in terms of their observable physical symptoms.27 In Charcot’s visualization of hysteria through photography, female patients played the starring roles and commandeered the visual imagination.28 And, though wombs seem to disappear, ovaries emerge as significant hysterogenic points in women and in some men.29 Despite the significance of Charcot’s insistent broadening of the category of the hysteric, women were understood to be more prone, at a factor of 1:20, and they were believed to be the parental transmitters of the disease.30 In any discussion of hysteria, it remains important to state that this was a disease attached not just to femininity, but to errant femininity.31 Charcot’s illustration, with those points on the hysteric’s ovaries, reflects the staying power of the idea of the errant womb, despite his rejection of hysteria as gynecologically induced. So too have stigmata been tangled up with hysteria’s long history. Conventionally, stigmata signify the wounds of Christ and affirm the religious purity and fealty of the supplicant. St Francis of Assisi was the first to claim them in 1224, and centuries since have witnessed hundreds of such declarations, many of which allege only one or two wounds. Others claim scratches on their foreheads as imitations of Christ’s crown of thorns.32 For

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believers, they commemorate the pain of the crucifixion, but also God’s blessing and the mark of faith. Like hysteria, they beggar belief: evidence for the reality of genuine God-given stigmata is “sketchy at best.”33 Some cases have been attributed to fraud, others to psychological conditions like “low self-esteem” or a “tendency toward self-mutilation.”34 In several instances, people have confessed after the fact to self-inflicted wounds rather than divine damage. Contemporary analyses of the veracity of these claims are steeped in the medicalization of religious experience. During the early modern period, the bleed between medical and religious discourses ran both ways. Physicians of the time referred to hysterical symptoms as stigmata, steeped as they were in a demonological model and a cultural belief in witches.35 Most stigmatics have been women, and most hysterics during this early modern period were also women.36 As Mark Micale traces in his history of the illness, early modern physicians saw female hysterics “alternately as a victim of bewitchment to be pitied and the devil’s soul mate to be despised.”37 The physical manifestations of hysteria, its “anaesthesias, mutisms, and convulsions,” were deemed “stigmata diaboli, or marks of the devil.”38 In Charcot’s nineteenth-century analysis, Greek wombs recede and early modern witches morph into modern hysterics with sensory stigmata. Their bodies are the surface on which the language of ecstasy and unchecked passions is reinscribed into yet another configuration of female fragility.39 I dwell on this history to emphasize the accretion and erasure of meanings over the years, and to highlight how the discourse of a stable disease entity emerges from centuries of manuscripts travelling between “East” and “West” and being translated again and then again.40 Through all these twists and turns, the organically caused “suffocation of the womb” gets hooked up to demonology, to excitable nerves, to the emergence of psychoanalysis and the idea of repressed memory, and to women whose complaints are “all in their heads.” It gets funnelled through feminist histories, where it comes to stand for women’s silencing under patriarchy, or women’s responses to their subjection, and it becomes an adjective to describe troublesome female patients. It appears in adjectival form in twentieth-century medical discussions of a syndrome that comes to be known as fibromyalgia. Hysteria is not identical to fibromyalgia, but their points of contact, those tender points of overlap, superimpose wandering wombs and devil-marked

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witches with malingerers and nervous-nellies. The chronic pains of fibromyalgia patients, widely dismissed until recently as self-generated and psychosomatic, are sensory stigmata: symptoms for which no organic cause can be identified. I had all eighteen tender points when evaluated in 1996. My bullet holes; my stigmata; my fraudulent body. But also: my constellation. Now, twenty-five years after diagnosis, I think of Walter Benjamin’s conception of ideas as constellations. Distant lights in the sky become meaningful as we link them together into patterns, and from patterns into stories. After gazing at these black stars on Regnault’s Graces and Charcot’s hysteric, I feel my tender points, finally, as a constellation of black holes whose gravitational pull has dragged me into the density of storytelling. z

Thirty years after biology class, I roll over in bed and try to avoid brushing against the shins that shy away from touch, or the hip that has hollowed itself out from decades of sorrow. I work my way up to a careful sitting position, slip my feet into a pair of thick-soled, electric pink running shoes and wonder how it will feel when I stand. Chronic pain, for me, is a structure of anticipation. I keep the laces loose, so I can slip them on and off easily enough, and I schlump around the house. My pink albatross is the only external sign of a nervous system lit up like Vegas. The genealogy from Wicked Witch pump to pink runner can’t be traced with a straight line. At fortyfive, I walk through university hallways in squeaking winter boots – wellmade, sensible Sorels that accept my orthotics – and colleagues joke they always know I’m coming.

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His teeth felt strange in his head, tiny tombstones set in pink moist earth. Stephen King, The Gunslinger

I get this dental supply magazine delivered once a year now. I must have been placed on a list after an Amazon order for cotton rolls. I had misread the listing and accidentally ordered a package of two thousand pieces instead of twenty. Since no single individual could possibly need two thousand cotton rolls, the manufacturer must have concluded that I was a dental office, and so Dental Brands catalogue now shows up each spring, selling everything from instruments for periodontal scaling, to x-ray viewers, and perforated impression trays. I had noticed an aching in my jaw in 2016. Over the next several months, the aching intensified and began to bother me while eating. My dentist noticed a tightness in my masseter muscles and advised me to insert cotton rolls, those absorbent little cylinders used to soak up saliva and other fluids during dental procedures, between my teeth. She said it could encourage my jaws to relax. “If you’re driving to work,” she said, “just slip two between your teeth, one on each side. Do this a few times for twenty minutes a day.” And so, I ordered those dental rolls and drove around town with cotton in my mouth, feeling like my twelve-year-old self casually dangling a few candy cigarettes between my lips, pretending to be James Dean. Catching sight of myself in the rearview mirror, my James Dean fantasy evaporated.

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At stoplights I lowered my head in case people in adjoining cars might glance over and see this lady all slack-jawed and dopey looking. The cotton sucked all the moisture from my mouth. The aching persisted. z

I used to be able to stuff my entire fist, including all the knuckles, into my mouth. This little trick was part and parcel of fun things I could do with my body. As a child, I could wrap both ankles behind my head while in a sitting position. I could limbo lower than almost everyone around me and I could beat a significant number of elementary school boys in arm wrestling. After seeing Cirque de Soleil in grade eight, I was determined to be a contortionist when I grew up and travel with the circus. I was strong and flexible and fearless. There were lots of things I couldn’t do: I couldn’t manoeuvre my tongue into a U-shape or a cloverleaf; I never could whistle; nor could I flip my eyelids like Mark M. in grade five. But I could make a fist and stuff it in my mouth. I didn’t have especially small hands either. When comparing hand size with friends, I always won. Even today, my hands often match those of an adult male. Thinking back, I imagine I once had a jaw like Fevvers, the glorious and mysterious aerealiste at the centre of Angela Carter’s fantastical novel, Nights at the Circus. When we first meet this mythical bird-woman, everything that Fevvers does is larger than life, such that a yawn transforms her from winged woman into a full-sized shark: “Fevvers yawned with prodigious energy, opening up a crimson maw the size of that of a basking shark, taking in enough air to lift a Montgolfier, and then she stretched herself suddenly and hugely, extending every muscle as a cat does, until it seemed she intended to fill up all the mirror, all the room with her bulk.”1 Fevvers is indelicate and raucous. She revels in her bodily difference, promoting herself as the “only fully feathered intacta in the history of the world,” and exuberantly capitalizes on her advertised hybridity.2 For me, the image of her magnificent jaw signals Fevvers’s capacity to control her own narrative. Though she resembles a shark during this marvellous yawn, it is a sleepy, luxuriating shark. The point of her giant maw is not attack but self-articulation. As she recounts the story of her birth, “Hatched out of a great bloody egg while Bow Bells rang, as ever is!” to Jack Walser, a journalist sent to deduce the truth or falsity of her human-avian identity, Fevvers’s narration comprises

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nearly the first third of the novel.3 Choosing which details to elide and which to mislead, Fevvers’s story unfurls, like her wings, in such a way as to keep the reader guessing. My parents tell me I could really spin a tale as a child, that they were fooled into credulity every time by the seriousness of my tone and the gravity of my expression, until I gave the game away by bursting into laughter. In those days, my jaw was like Fevvers’s: it engendered worlds. Until I got to university, I never thought much about jaws beyond this fist-swallowing party trick. During undergrad, my friend K described persistent clicking every time she chewed. It didn’t hurt her, but it was an oddity. I would listen for it as she ate breakfast and sometimes, she would reproduce its sound for amusement much like Jockoo, her African Grey parrot, liked to mimic the sound of a bomb dropping. K’s father had taught Jockoo the whistling sound of a plummeting explosive followed by a blasting detonation, but the parrot developed two iterations of his own. Sometimes, he’d decide the bomb was a dud, and the whistling deployment was followed by a hollow “click.” Occasionally, he’d keep us hanging by going mute after the whistle. It was a silent treatment full of menace, as the bomb’s descending pitch was arrested by an absence so palpable, it shifted the air in the room. We waited for an explosion that could arrive at any time. During graduate school, I became aware that my own jaw had begun to click, like K’s before me or Jockoo’s dud. As I yawned, I would hear a click and feel a thunk as my lower jaw opened wider to accommodate the movement. This same thunk occurred upon closing. Like K, I felt no discomfort, but the sound I heard each time intrigued me. I would open and close repeatedly just to track the movement and test for the presence of pain. For years, that sound was both novel and ordinary: a daily occurrence of something that hadn’t been there before. Around this same time, I learned that I was a grinder. “Sleep bruxism,” my dentist explained. She had noticed a wearing away of the enamel, a classic indication that while I slept, my mouth was hard at work chewing on the remains of the day. “Stress can cause bruxism,” she said, “so just reduce your stress.” She tossed it off reflexively, unthinkingly. Her casualness enraged me. I wanted to scream, to spit my rage at her. I wanted her to feel the burning affect her words had ignited within me. Just, as though it’s the easiest thing in the world, like breathing, like sliding into the water for a swim. Even in the moment, I was aware that the intensity of my response

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was disproportionate; this woman had not earned my rage. Instead of lashing out, I held my tongue. I chuckled and said, “Yes, I should really work on this.” More practically, the dentist also recommended a mouthguard at night to avert additional damage to the enamel. While I was prevented from eroding the surface of my teeth any further, nothing could stop the clenching and gnashing, which continued under cover of darkness, wearing down muscles ever more exhausted by their perpetual contraction. At night I would grind out the days, having the same dream on repeat: my mouth kept filling up with a strange substance that I came to identify as sticky, caramelized excrement. Over and over, I would insert fingers into my mouth, sweeping the material out so that I could speak. Each time, more of this viscous, never-ending substance materialized to replace what I had removed. This remorseless cycle of sweeping and filling felt like a perverse inversion of Tantalus leaning down for ever-receding water. In this recurrent nightmare, I was caught perpetually between the desire and the incapacity for speech. Within the dream, each time I realized I was stuck back in this same scenario, a creeping panic took over. I sought out water to no avail. I swept and spat and swept again. It was futile. The arc of the storyline was established; it proffered no escape from the waste erupting within. I was deep into psychoanalytic theory at the time, reading all the Freud and French feminists that I could. Freud’s Interpretation of Dreams was bedtime reading, like it has been for so many other students before and after me, and I waved away my nocturnal horror story each morning by rationalizing the nightmare as nothing more than my weird brain working its way through his case studies of patient teeth dreams. Being silenced and panicked by something bubbling up from the inside signified nothing more than my literary love for the grotesque chewing its way through a patriarchal history infernally obsessed with detailing the depth and breadth of women’s deviance. A literal – by which I mean clichéd – study in abjection. In my rush to domesticate the dream, I had forgotten a fundamental element of abjection: the collapse of meaning.4 In Julia Kristeva’s hands, the abject is that which “disturbs identity, system, order. What does not respect borders, positions, rules. The in-between, the ambiguous, the composite.”5 In dissolving the boundaries between self and other, in illuminating the

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otherness of the self, the abject locates me at the nexus of a desire to reject this body in pain (it’s not the real me; it won’t always be like this) and a fear that yes, I am this alien creature who resembles herself, but only on the outside. Remembering the steady flow of that repulsive substance, oozing like magma, I begin to see it as an assertion of this emergent state, for which no consolatory symbolization or significance exists. Yes, this is you. No, there is no meaning to impose that will make you feel better. If this dream interpretation captures some aspect of my psychic life in those days, then I understand better the intensity of my response to the dentist’s offhand recommendation. In the face of such a fundamental battle over the perception of self, the instruction to manage my cortisol levels feels akin to treating an amputation with a bandage. This prescription, to reduce your stress, is commonplace today both in and out of the medical clinic. It’s common because stress has become habitual, a kind of chronic ordinary. Experienced in this way, stress is dangerous: “The long-term activation of the stress response system and the overexposure to cortisol and other stress hormones that follows can disrupt almost all your body’s processes.”6 Stress attacks our nervous systems, our organs, our muscles. It interrupts sleep, impairs memory, assaults our mood. Everyone I know is walking around stressed out and talking about it. Conversations with friends often land on discussions of anxiety levels at a pitch, of pressures mounting, and always the feeling that there isn’t enough time. We tell each other, Give yourself a break. Don’t take on more than you can handle. Talk to a therapist. Go for a walk. Give yourself a treat. Sometimes in the moment, advice like this feels helpful, even possible. Yes, I think, if I just organize my life so that I’m never in a rush, so that I have enough time for everything, so that I’m not asked to do more than I can produce, if I meditate every day and count my blessings, then, I can reduce my stress and feel better. Tomorrow, I’ll set my alarm thirty minutes earlier. The inadequacy of such correctives lies in their purely individual nature. Never have I heard a doctor tell me that we need to break the stranglehold of late capitalist neoliberal practices to help people lower the surging levels of cortisol in their bodies. I wonder what it would be like to have physicians treating capitalism. But our doctors live in the world with us, desiring security and contentment while bumping up against the same structures that impede our own ability to thrive.7

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Like the chronic, stress expresses a relation to time. Feelings of stress spill out from worries that I’m running late, that I haven’t done enough by the time I reach a deadline, that the news I’m waiting for will be bad. In my job, anxieties that I haven’t read enough or written enough are rooted in an abstract sense of what I should have accomplished by this moment in time. Catch up! I tell myself. I’m always running behind my sense of where I should be. Keep grinding through and maybe one day … All through graduate school and the first ten years of my job, I wore the mouthguard by night and click-thunked by day. One day, I noticed a strange silence: the clicking had stopped. Its disappearance seemed strange, as did the cessation of clunky jaw movements. The quiet left me uneasy, like air hanging heavy before a storm. Things deteriorated. I began to feel sharp jabs of pain upon chewing. Each yawn was a hammer finding its nail. My jaw, this extraordinary machine once admitting an entire fist, refused to open wider than a finger’s width. Through all the other pains and incurable conditions, eating and cooking have been sources of refuge. I’m no Alice Waters, but I was attempting soufflés at ten and designing menus by grad school. Eating bone marrow for the first time imbued me with the solemnity of a novitiate. Learning to make a perfectly curd-like scrambled egg made my heart leap up like Wordsworth contemplating a rainbow. If the day had been awful, Patrick’s carbonara always pacified. “We keep the wolves outside by eating well” had been a mantra for years, but the onset of jaw pain deepened my understanding of this refrain.8 As mealtime initiated a different kind of anticipation, I realized that eating functions not simply as solace from the “slings and arrows” of daily life; in a certain way, it’s also a reprieve from thinking about the body. Taste and smell had been silent allies, muffling so many bodily cries over the years. How miraculous, I think, that the smell of onions frying in butter can mute barking feet or wailing hips. That a garden tomato can make the world disappear. For a healthy jaw, chewing is both a reliable and instinctive activity. Prior to the emergence of these mouthy pains, I was deeply aware of flavours and textures, but never the actions of mastication or grinding. With its onset, I descend into a new reality. Food becomes animate, populating a world of menace. I am Alice in Wonderland, wondering how those glori-

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ously chewy pieces of pancetta in the carbonara have turned to stone. A bowl of popcorn, which I used to shovel into my mouth by the fistful, masses itself into a rocky mountain too craggy and rough for ascent. Summer carrots metamorphose into evil sprites laughing at my feebleness. I dread hunger. At some point, the headaches begin. Once or twice a week the cranial throbbing breaks like a summer hailstorm, shattering what’s left of my equilibrium. Having abandoned those useless cotton rolls to the back of our bathroom cabinet, I ask to see a specialist. A gentle, soft-spoken dental surgeon takes x-rays, case history, and turns to me with kind eyes. “You have temporomandibular disorder (tmd),” he explains. “Eat nothing tougher than a hard-boiled egg. Watch your stress.” This time, the recommendation does not elicit rage. Instead, I feel a familiar sinking, as though the tension wires holding my skeleton in place have slackened, and tissues, organs, bones all slump downwards. The feeling is just this side of nausea. But there’s something else too, a sensation of folding up inside. It’s like curling up around a stomachache, but internally; the stomachache folds itself around me. I close in on myself. I sit composed and attentive as though I can compartmentalize my feelings from his speech. “For how long?” I ask. “Well, it’s chronic,” he replies. That word again. “Take these muscle relaxants. They may help.” “How often?” I ask. “As needed,” he answers. I understand that now I must face up to jaw pain shooting out into an extended present. The sinking and folding intensify. His compassion heightens my despair. Compassion is all he has to offer, and it strikes me as profoundly out of tune with the ravages I feel, with the betrayal of a jaw that has finally had enough. Temporomandibular disorder is “an umbrella term for pain and dysfunction involving the masticatory muscles and the temporomandibular joints.”9 Symptoms include pain in the face and around the front of the ears, restriction of jaw movement, noises from the temporomandibular joints, and headache. Over the course of its development, my tmd included each of these symptoms. Like fibromyalgia, tmd primarily affects women, and the two are considered associated conditions.10 My mind instinctively wanders back into the long history of hysteria, a protean diagnosis that nevertheless includes recurring references to symptoms of mouth pains and mutism. Tooth grinding and loss of voice were “features of nineteenth- and

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twentieth-century hysteria.”11 Ancient Egyptian and Greek physicians blamed a nomadic womb for “many women’s afflictions, including choking, mutism, and paralysis.”12 While hysteria did not become a disease category until the nineteenth century, something called hysterikē pnix was identified in later antiquity: “suffocation caused by the womb” leading to symptoms such as “suffocation, tooth grinding, loss of voice.”13 My reading of psychoanalysis tempts me to draw a direct line from patriarchy and its silencing of women to symbolically symptomatic occurrences of mouth pain. Misogyny is hardwired into all our systems, including our nervous systems. Am I a contemporary hysteric registering her oppression by grinding on herself? Yet I know it’s not that simple: not all women have fibromyalgia or tmd. Nor do all women respond to patriarchy by keeping quiet. My tmd is not simply symbolic of gendered relations, though misogyny likely plays a role. The complexity of tmd disorders is unambiguously reflected in the literature: “Using conclusions from the oppera study [a major multisite study], self-rated general health conditions (ie endocrine, cardiovascular, haematologic, somatosensory and respiratory conditions, as well as sleep apnoea, cigarette smoking, and previous surgeries and hospitalizations), general chronic pain disorders (e.g., low back pain and genital pain, irritable bowel syndrome, migraine and tension-type headaches), age, study site, ethnicity (e.g., African or Asian descendants) and psychosocial and genetic factors seem to play an equal or more important role than gender.”14 On their own, each item in this list contains galaxies. If a dentist is up to date on this research and understands the multiplicity of potential factors at play, how on earth can they be expected to treat patients presenting with jaw pain? Our health-care system is not set up to address the role of epigenetics or intergenerational trauma in ten- to twenty-minute appointments. The phrase “psychosocial factors” encompasses both psychological and social conditions; in other words, everything. Given the constellation of factors at play in the emergence of tmd, the most convincing etiology I can propose for my own troubled jaw is this: it must result from the ways in which the world outside gets tangled up with the world inside. In other words: it must be me. Jaws are notoriously strong. Humans are estimated to exert around seventy pounds per square inch when they chew, although that force diminishes towards the front of the mouth.15 Clenching produces about double

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the force of chewing, and people who grind while asleep exert even more force, possibly six to ten times more.16 People with sleep bruxism are like industrial grinding machines without any material to pulverize. And so, we abrade ourselves. At the best of times, jaws don’t take many breaks. They help us breathe, eat, talk, and sleep. They structure our faces and hold our teeth in place.17 I think of them as workhorses, like the ones that used to grind out grain or pump water at horse mills before industrial machines stepped in. In a typical nineteenth-century example, four heavy beams connect a central axle to four horse shafts and the axle is powered by the horses walking around the mill in a circle. Their walking creates a path, smooth and hard-packed without friction, while their shoulders carry the burden of grinding. Under ideal conditions, this describes the mechanism of rotational movement at the temporomandibular joint.18 A joint connects. In the body, joints are the meeting place for bones. At the very top of the lower jaw, close to the ears, we have a bony prominence called the condyle. Akin to the central axis of a horse mill, the surface of the condyle articulates with a cartilage disk nestled between the condyle and the temporal bone. This soft, cushioning disk operates as a hinge, so the temporomandibular joint can glide smoothly. Each time I open or close my mouth, this articulation enables smooth rotation. Like four horses walking halfway around the axis and then reversing course along that same smooth track. I pause to consider the temporal bone, this compound bone on both sides of the skull, as a structure named for time. It looks like the map of some unknown country, with irregular coastline and jutting peninsulas. Temporal, referring primarily to earthly time as opposed to eternity, signals that which is “lasting or existing only for a time; passing, temporary.”19 A yawn has a beginning and an ending, as does chewing (unless you’re a cow). This mortal bone is designed for activities that terminate. Even breathing. Associated with the secular, rather than the sacred, the temporal concerns the “material interests of this world,” like eating or screaming.20 I think of these bones like second hands on a clock. Connecting past with future, each articulation with the condyle counts down another second. The muscle relaxants do nothing. I return only once more to the specialist, who repeats the initial diagnosis and prognosis, with that soft-spoken voice that by now sounds flaccid to my ears.

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3.1 Temporal bone, mandible, and temporomandibular joint

Later that week, my chiropractor tells me about Dr. Z, a local dentist specializing in tmd. He advertises, like those injury lawyer billboards and strip club signs lining the roadways here. “Injured? Call Joumana” pops up regularly across the border in Detroit while multiple versions of “New Girls New Effort. Leopard’s Lounge & Broil” shot up around Windsor several years ago. I had driven by Dr. Z’s sign a thousand times on the way home without ever really clocking it. “Have Jaw Pain? You Might Have tmd. Call Dr. Z!” It wasn’t even a true billboard. Dr. Z had rented one of those black, portable signs where neon letters click in. They remind me of the alphabet fridge magnets we had as kids: brightly coloured plastic letters we’d rearrange to express the thought of the moment while grabbing a snack. Ordi-

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narily, I would dismiss any physician with a sign: advertising health care smacks of confidence-man hucksterism. But my ordinary had shifted sufficiently, and I was willing to grit my teeth and call the number. Silver-haired and clean-shaven, Dr Z looks like Santa Claus in the offseason. With a twinkle in his eye, he prances into the room and it’s like he somehow materializes from the sunbeam streaming in through the window. I find him enchanting. He runs through the same testing and x-ray procedures as the specialist. He pronounces that yes, I have tmd and yes, he can help. He claims a 90 per cent success rate with compliant patients. He confesses that he is expensive. I am fully aware that this might be a snake oil situation. Having travelled down this road with health-care workers who attribute failure to progress to patient resistance, I am attuned to the psychic pitfalls. Still, he’s offering hope. z

For someone with a chronic condition, hope can be noxious. It rushes into situations like floodwaters. When the waters recede, the landscape is bereft, devastated. Normally, I try to keep hope dammed up but plans and protocols plug into my desire to be otherwise and my belief that disciplined searching will eventually yield something. I make a silent compact with myself to allow a smidge of optimism through, but I determine to keep most of it behind the retaining wall by sheer force of will. This is a fool’s bargain. I know that I haven’t really got any control: once a little hope flows in, the dam is bound to burst. I decide that I’m game, while readying myself for impending disaster cleanup. After all, the dental surgeon with a beautiful new office space and in-house surgical suite, the dental surgeon without a billboard, proffered nothing but muscle relaxants for life. It’s worth a shot. “How’s your stress level?” I am ready for it, and something about the sunlight bouncing off his cherubic cheeks softens me. “Not great,” I reply. He explains, once again, that tmd is a complex condition resulting from multiple factors. It’s not only the sleep bruxism, he says, but elevated stress levels likely mean I am clenching during the daytime. I think about this. I think about how I catch myself contracting constantly, not just masseters but muscles all over the body. Gastrocnemius, rectus abdominus, iliopsoas, quadriceps. At night when Patrick and I watch television, my entire body is loaded for bear. “Yes,” I reply. “I am clenching all the time.”21

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When I tell Dr. Z that my once clicking and thunking jaw has become silent, he explains that this is due to disc displacement: my condyles are no longer lining up with their discs. My workhorses have been forced off the track. Pain strikes each time the joint fails to glide smoothly, which is every time I try and move it. “Your poor jaw muscles need a break,” he says. “Can you talk less?” I consider the strange relations between speech and silence, where silence could be a defensive response to perceived danger, a strategic decision, or a sign of repose. The noise from clicking and thunking does not necessarily augur bad things to come, but its disappearance does. Each time I open my mouth to speak, I stress the muscles further. On the surface, silence does seem indicated. But Dr. Z’s suggestion to talk less does not account for muteness deployed as defence. My chronic clenching results, in part, from the accretion of moments over time I have decided not to speak. These instances are different from other occasions of deliberate silence advocated by my Great Auntie Pat years ago: “Hold your tongue and grow your soul,” she advised. Hers was a lesson in kindness, in not rushing to judgment of an other. Her form of quiet did not constitute a suppression of self, but rather its expansion into generosity and curiosity. Defensive silence also differs from strategic decisions to hold back. As Fevvers spins out her story for Jack, she chooses to omit some parts and obfuscate others. Her narrative decisions do not restrict her capacity for self-expression; they protect what she prefers to keep private. What I’m calling defensive silence constitutes an altogether different form of reserve, the kind I engage in when speech seems risky. This kind of silence is an act of muscular contraction, and it wears. In such moments, my instinct is always to defuse or avoid and so mostly, I listen. I wonder, What do these jaws hold onto when I hold speech back? Each time I clamp down, things build up. Any muscle that gets used to contracting begins to hold that pattern automatically. It’s the nervous system at work. My jaws are taciturn. Dr Z’s treatment protocol is simple. He takes impressions of my teeth and makes two occlusal splints, a repositioning splint for my bottom teeth and a stabilization appliance for my upper. When I am not teaching or eating, I am wearing the lower splint. For one hour each day, I switch it out for the upper. While the upper splint is designed to help the muscles relax, the

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lower appliance is engaged in a long game of encouraging the jaw to realign and to coax the condyles back into alignment. Talking is difficult with the lower splint and impossible with the upper. Grinding, shear-stress, erosion – these are the terms I encounter in the medical literature on tmd.22 It’s a language of geology, of tectonic plates colliding and separating, of quivering fault lines and earthquakes. Of the formation of mountain ranges. Since this all began, my teeth have shifted their position in my mouth. What once was an even crescent now features outcroppings and indents. Small extrusions of muscle tension – “chipmunk cheeks,” according to one doctor – have restructured my jawline. I am craggy. I wear the splints. I return to Dr Z every few weeks for splint adjustment. I notice a reduction in pain. He’s almost dancing with delight. Still, things plateau, worsen, circle back, and stabilize. At a certain point, I realize I can insert two fingers into my mouth and then, just barely, three. Five years later, I wear the lower splint every night, but only use the upper when I feel the tension wires tightening up a notch. The time of smooth crescents and tranquil masseters is long past, the muscles wince under palpation. Biting at the wrong angle still jabs like an uppercut, and wearing the splint has no effect on grinding. I wake most mornings with an ache deep in my jaw. All of this is endurable. Hope and I are at a détente. That sinking and folding in the specialist’s office feels distant, not because I’ve made peace with these jaws, but because I’ve finally agreed to listen when they bark. They have stories to tell, of their status as both tool and weapon, of clamping down and jutting out, of a desire for release following contraction. Of how it feels to have this desire denied. I search for a way to picture this complexity and I find a new image, one that transforms folding in from despair into something more layered, more intricate. In her Tissues series, US artist Lisa Nilsson applies the technique of paper quilling to the human form. Quilling is a decorative art transforming paper into exquisite objects. Small strips of paper are rolled, looped, twisted, and curled into detailed designs. The finished product can mimic much more expensive materials like gold, silver, ivory, and wrought iron.23 In Tissues, Nilsson uses strips of Japanese mulberry paper along with the gilded edges of old books, folding them into intricate renditions of human anatomy. I catch my breath at a detail view of her Head. Intricately

3.2 Lisa Nilsson, Head and Torso (detail), 2010

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placed paper rolls and swirls combine to form this sagittal cross-section of a skull, but a skull defamiliarized. Sinuses loop and the brain appears wormy, labyrinthine. I zoom in on the mouth and jaw region and, as I stare, the mandible (I think it’s the mandible) starts to resemble spaghetti. Sedimentary layers of red abut a half circle of white iris-looking objects nestled in turn into a crescent of peach folds. My first instinct is to play a matching game with my anatomy text. I check and recheck cross-sectional diagrams for axial musculature. I think the red-white-peach folds are tongue muscles – genioglossus; hyoglossus; styloglossus. Those two white swirls towards the lips could be teeth, one upper and one lower just kissing the white dorsum of tongue, but I’m not sure. Each time I try and map the medical drawing onto this paper mystery, I lose track of where I am. The folds are hypnotic; their inner swirls perform a kind of mesmerism. I sink into the image and remember the drying cotton rolls I once used to try and loosen the grip of my jaw from itself. These quilled paper rolls cannot be inserted or extracted, but if I shrink down like Alice in Wonderland, perhaps I can wind my way through them and read their hidden messages, like I used to unfold secret notes in grade school. I remember all the diaries I destroyed along the way, all the things I’ve never said, and imagine my own tissues as scrolls of parchment. I see chipmunk cheeks as the storing up of language. I want to follow the looping and the layers, to read the unarticulated things. To find the untold stories and, perhaps, a means of expressing them.

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I should have been inured to climatic changes; but I again felt I had moved out of ordinary life into an area of total strangeness. All this was real, it was really happening, but with a quality of the unreal; it was reality happening in quite a different way. Anna Kavan, Ice

To be in possession of a story or an experience is in some sense to own it, to control it: a writer makes decisions about what to build up with adjectives and what to slice out. At the same time, to tell a story is also to be possessed by it: writers describe feeling compelled to write. Toni Morrison was haunted for three years by the idea of Beloved before she even began to write the novel, which took her another three to complete.1 Virginia Woolf needed To the Lighthouse to exorcise her mother.2 Morrison and Woolf did the writing – they made each decision about language and form consciously, deliberately. And they were possessed by something – an idea, a feeling, a history – that drove them. Possession and being possessed are simultaneous states for a writer. Not for all writers, nor for the same writers each time – sometimes deadlines or matters of economy and pragmatism just override everything – but for those interested in the aesthetics of writing, this entangled state is elemental. Subject the writer to an x-ray or mri and look for the boundary line dividing story from writer, the line demarcating a battle for control between the two. You won’t find it.

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In the case of memoir, to remember and re-tell a story is also, always, a re-writing. A story is never identical to the experience it describes; details are unreliable, timelines confused. As a child, I had a vivid memory of driving along a coast road during a tornado. If I shut my eyes now, I can still call up the scene with remarkable clarity. Off to my right, in the distance, a swirling gray funnel cloud rampaged over the water as our car clung to the hillside. Silence inside, all passengers stony with fright and Dad’s grim focus on the road. Years later (was it years? months?) I asked Mom, “Do you remember that tornado we drove by?” “What are you talking about?” she said. “We never drove through a tornado.” Growing up between the mountains and the prairies, I am a child of the foothills. As such, I was aware of the threat posed by tornadoes, never of hurricanes. I guess that explains why I remember a tornado off the coast of British Columbia, a place where tornadoes never touch down. Was it a dream? I have no recollection of waking up from this dream. The image persists in my brain as memory, along with the feelings first associated with it: dread of what I saw, just off to the right, and the desire to move beyond this scene into a future that didn’t swirl grey with fear. Memory at once makes us who we are, and memory is a kind of trickster that will shift and change without telling us. We know from neurological research that each time we recall a specific memory to mind, we are in fact rewriting it, re-membering it.3 This is not something we do consciously or wilfully. We cannot rely on the facticity of our memories, but we also must. Our sense of who we are is constituted in large measure by the stories we tell ourselves about our history. And so, I hold this paradox in my hands: my memories ground me, and my memories do not spring from solid ground. I first became interested in the workings of memory in the last year of my undergraduate degree in literature. My favourite professor of all time had introduced me to the writing of Angela Carter, and her weird, violent, intertextual, comedic symphonies. Carter isn’t everyone’s cup of tea – our graduate assistant insisted that she was much too salivary a writer, that one needed a shower after finishing a Carter novel. But I loved her excess, her unflinching imagination, and the way so many of her characters are formed by the stories they tell about themselves. In her short story “The Scarlet House,” Carter’s protagonist describes the impact of trauma on her

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memory. Held as a captive by an evil Count who is “dedicated to the obliteration of memory” and tortured beyond all imagination by the dreaded Madame Schreck, the woman struggles to retain a sense of herself by creating “certain precious mnemonics.”4 The veracity of her recollections is of no matter. It’s her ability to establish her own system of connections that enables her to survive: “Can’t I, in the systematic randomness of my connections, control the Game?”5 As a graduate student in English, I was riveted by the pairing of memory with trauma. These concepts were in vogue at the time; it was sexy to immerse oneself in the study of trauma. We read Derrida and Blanchot, Freud and Nietzsche. We impressed each other with our theoretical erudition and made jokes about Proust. While these intellectual interests fascinated me, it was a real-world encounter with inevitable loss that brought the importance of memory home to me in a painful and material way. Early in my PhD, my oldest and dearest friend was diagnosed with terminal cancer. As children we had walked to school together for years, and we always reunited over Christmas and summer breaks once we reached university age. When he wrote to me that something was wrong, that the doctors were looking through his body, I experienced a kind of telescoping. While we were separated geographically, I woke up and fell asleep to thoughts of him. I became desperate, for what I don’t know, just desperately unable to do anything that didn’t involve thinking about him and thinking about what life would be without him. I began to prepare by committing to memory all that we had done together. Memory became inextricable from mourning. This conceptual duo was also in fashion in post-structural literary departments, and so I readily found the academic rationale to explore grief and the things that bind us together. Over twenty years later, my attachment to this concept is as strong as ever, though I think about it from a different angle. For starters, my own memory is now terrible. Growing up, I could remember conversations word for word. I could recite poetry and tell my sister stories about the teachers she had in elementary school, stories she had long forgotten. But now I am a beach whose sandy ridges and depressions have been worn away by the tides. Today, as I reread “The Scarlet House” alongside what I have already written, I find that this image of myself as an eroding beach is not my own.

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In the narrator’s words, “I am eroding, I am wearing away. I am being stroked as smooth as stone is by the hands of the sea; the elements that went to make up my uniqueness fall apart …”6 I had thought that it was a recent immersion in Virginia Woolf ’s The Waves that brought the sea inside my body, but it turns out Carter has been there all along. Now they mingle together along with all manner of things I’ve forgotten. It matters less that a memory be accurate, than the feelings it generates and what it can teach us. Like Carter’s captive narrator, I am interested in the connections my brain builds between things. These connections are teaching me how experiences linger in the body. Memory is the stage for these current explorations of embodiment and the hauntings of history, but I am not an actor off-book with a thoroughly rehearsed character. Each time I make a swipe to grab hold of the meaning of these events, I’m trying to hold water in my hands. But water won’t be held; it always finds invisible cracks and fissures. It streams through my fingers and falls to the ground.

The Incredible Boris The shock-receiving capacity is what makes me a writer. Woolf, Moments of Being

Grant Hall is full. Our group sits up in the balcony, just over the stage. It is September 1993, orientation week at Queen’s University and I am a Gael – the name given to a second-year leader for incoming arts and science undergraduate students. Frosh week at Queen’s is infamous and has been for decades. Engineering students are put through ordeals like shimmying up a greased pole in a mud pit (in 1984, a frec – the name of the engineering leaders – added “urine, vomit, cow heads, assorted animal guts and rotten tomatoes” into the pit) and commerce students walk around campus chanting, “That’s alright, that’s ok, you’re gonna work for us one day!” There are house crawls, where frosh leaders make purple Jesus – a concoction of close to 100-proof alcohol and grape Kool-Aid – available in giant quantities; car washes for charity, face-painting; and chanting, so much chanting. Midway

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through the week, on Wednesday, 8 September 1993, frosh leaders bring their first years to Grant Hall to watch the Incredible Boris, entertainment hypnotist extraordinaire, perform. I am there under duress. Hypnosis, to me, is tantamount to inviting the devil in. I am a solitary pilgrim amidst the excited buzz of hundreds of bodies hungering for entertainment. I had picked up stakes and travelled across the country to study. My goal above all else is to honour God in this journey. Each situation presents itself as a potential temptation or danger. My task is to remain awake and alert, to keep the lines of communication with God open at all times. And so, when faced with the dangers of opening up to a force that is not-God, I steal a glance at the man who walks onstage, and then turn my head away in an attempt to tune him out. He is The Incredible Boris, and he wears a shiny purple suit. He counters a receding hairline with too-long curls that reach glossily to his neck, and his shoes are pointed at the toe. He is a flashy devil. What is hypnosis? Its history encompasses both medical practice and carnivalesque delight and so it occupies a particularly liminal zone between science and not-science, between theatre and therapeutics. It poses the question of theatre as therapeutics, and of therapeutics as theatrical. It asks about the relation between hypnotist and participant, about complicity, submission, deception, and about what transpires invisibly between the actors during a scene. It dares you to believe that people can be taken over and controlled, and so it not only belongs in the histories of medicine and carnival hucksterism, but also in military and political histories, in cinematic histories (The Manchurian Candidate highlights the political interest most brilliantly), and in religious histories of trances and other miracles. But for me, at that time, hypnosis signified an invitation to demon possession. I was steeped in narratives like This Present Darkness, a Christian novel describing a satanic plot to take over a college town in the US. I did not want to be taken over. My resistance to Boris was borne of spiritual desperation. Orientations are designed to capitalize on an individual’s sense of disorientation. When we bring in a new crop of students, we spend time introducing them to the rules and structures of their new institution. We give them identities, both micro and macro. Their student numbers identify them for the purposes of institutional classification, but we also give them departments to belong to and faculties that designate the intellectual and

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philosophic orientations they will adopt during their time at university.7 Humanities students will view the world differently than engineering students, business students, or law students. During my undergraduate orientation, our sense of belonging to the Faculty of Arts emerged out of our sense of difference from those animals in engineering and those assholes in business. As scholars have been observing for decades, identity is a process of becoming through a series of exclusions. I am this because I am not that. Orientations are billed as fun and informative sessions to get to know your new colleagues and the university at large. But they are, at heart, rituals initiating newcomers into the rites and beliefs of the group, pulling on the desire to belong. Looking down from above, I see row after row of students getting settled in their chairs, whispering with their neighbours, laughing, and charged up for the night ahead. I feel invisible and invisibility feels safe. The direction of my gaze is pivotal to my plan for the next two hours: all I need to do is avert my eyes from him, and I will be impenetrable. What I had not considered was the possibility of aural contagion. To solicit volunteers, Boris performs a mass attempt at hypnosis that enables him to identify certain pliable bodies in the crowd. Those bodies are invited up to the stage, so the show can begin in earnest. The basic structure of the program is to command these newly forged automata to perform certain acts for the amusement of their non-hypnotized peers. I recall only two of the many scenes from his show. In one, Boris activated the group to dance around like raisins from the California Raisins commercial. It was a playful trick, not relying on sexual or physical humiliation jokes, but instead an enactment of pure silliness. In the second scene, two chairs were set up, back-to-back but several feet apart. Boris commanded a young woman to stand up straight and then told her that she was stiff as a board. Her body could not move or bend in any way. She went ramrod straight. He beckoned two young men on stage to pick her up and lay her across the chair backs so that her shoulders and calves each rested on the slender backs. As the young men returned to their seats, she lay rigid and suspended between the chairs. Next, Boris brought a third chair forward and set it just behind her stomach. He stepped up onto the chair, and then onto her body. He looked out at the audience, triumphant. She lay there in passive submission, her thoughts and feelings entirely unreadable.

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Thinking back on this scene now, I remember a photograph of Augustine, one of Charcot’s famous hysterics oft featured in his photographic explorations of hysteria and hypnosis at the end of the nineteenth century.8 She is suspended across two chairs, frozen stiff. Her hands rest on her belly while her head arcs downwards, bereft of support. She makes a gentle parabola. One corner of her apron reaches down for the ground. Her throat is exposed. The photograph, which appears in volume 3 of Iconographie Photographique de la Salpêtrière, illustrates the lethargic phase – one of three phases in a hysteric’s hypnotic trance. Lethargic and also somehow hyperexcitable. The words don’t belong together in my brain: how can she be both lethargic and hyperexcited? The state seems to name a mind/body split, one in which her muscles and nerves obey sensory commands, while her sleepy brain sits back to watch the show. During lethargy, the patient’s eyes are closed, “the pupils of the eyes are convulsively turned upward. The body is almost entirely without sensation, or power of thought. Especially characteristic of lethargy is the hyper-excitability of the nerves and muscles … which manifests itself at the slightest touch of any object.”9 Touch generates the muscular and nervous contractions, like a light switch. The clinician gently rubs an arm or a leg, and the patient responds, automatically, involuntarily, by contracting that body part and holding it in that contracture. The repetition of this same touch tells the muscles to release their hold, returning the hypno-hysteric to a more relaxed state. The body that consents to hypnosis (and Augustine did consent, insofar as someone at the Salpêtrière could voluntarily do anything) then consents to a certain automation: her body can be bent and moved into multiple positions – all for medicine. Augustine has been hypnotized into lethargy and touched into her parabola. Clinical notes accompanying the plate tell us precisely where she was rubbed: “We place her head on the back of the chair, then we rub the muscles of her back, her buttocks, and her legs, and we place her feet on top of the second chair: the body, rigid, rests in this position for an appropriate length of time (We have never prolonged this experiment beyond four or five minutes); it is possible to place a weight a of 40 kilograms on the stomach without making the body bend.”10 Charcot did not invent this trick. There were myriad public demonstrations during the nineteenth century across Europe by itinerant animal magnetizers, mesmerists, electrobiolo-

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4.1 Paul-Marie Léon Régnard, photograph of Augustine during lethargic phase of hysterical attack, Iconographie photographique de la Salpêtrière, vol. 3

gists, and so on. Most likely, he read about the human plank trick, or he saw it in one of these public events.11 I want to change the story. I want the picture to be of Augustine levitating. With the brocade curtain in the background, the scene looks more like a spiritualist seance than medical documentation anyway, so I can imagine that Augustine has been taken over by spirits who want to free her. The only thing keeping her fixed to this earth are these two chairs and that damn camera. Without them, and without the forty-kilogram weight that Charcot imagines placing on her belly, she could just float away like a balloon. It’s a scene of possession (by medical authority; by the ghosts of her traumas; by the resurrection of symptoms now dormant within her) and a fantasy of escape. The photograph fixes her in this moment before flight.

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Charcot believed that hysteria and hypnosis were bedfellows. Hysterics were extremely suggestible, so much so that for Charcot, “to be suggestible to hypnosis became synonymous with hysteria.”12 Given this inherent and pathological suggestibility, Charcot could use hypnosis to investigate the “basis of hysteria.”13 Charcot contended that hypnosis contained stages akin to the phases of hysteroepilepsy, and that he could induce both catalepsy and lethargy hypnotically, thereby enabling him to observe aspects of a hysterical attack.14 These experiments, which were not therapeutic but purely in the interests of science, were conducted publicly, constituting both medical observation and entertainment.15 Charcot the exorcist. Hysteric patients were placed on stage in the Salpêtrière amphitheatre and hypnotized for medical students, members of the general public, and celebrities. Hypnosis allowed Charcot to raise the demon and make it show itself.16 A patient could be commanded to adopt various poses, hysterical attacks could be induced and arrested, and through these experiments, Charcot endeavoured to identify the often confusing and variable somatic signs of hysteria (is it hysteroepilepsy, or just epilepsy?).17 All of this performance was well and good, but Charcot sought to document his investigations more permanently, and so he employed an in-house photographer to render these theatrical performances eternal. Images from all three volumes of the Iconographie Photographique were made by Paul Regnard. He used the wet plate collodion process, a method faster than the daguerreotype at capturing an image, but still requiring the holding of poses.18 I look at Augustine laid across those chairs and travel back to the late twentieth century where the very same trick is used on stage in Kingston. The figures merge in my mind: Augustine and the young student. Boris stands on her belly, somehow diminished to playing the role of Charcot’s forty-kilogram weight, while she exhibits hysteric symptoms of lethargic hyperexcitability. It’s an uncanny re-enactment of Regnard’s photograph. Was the young woman worried when her body was set atop these narrow rails, and she saw Boris’s foot moving towards her belly? I wonder this in part because of the history of feminist scholarship asking readers to consider the experiences of female patients (Dora, Anna O, Frau von Emmy, H.D., etc.) under male physicians’ care,19 but also because while this woman became stiff as a board, her mind must have been whirling with thoughts.

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I know this because while all this was happening, I sat at one corner of the stage unable to move, acutely aware of my surroundings, terrified by what was happening to me. I have gotten ahead of myself. I am sitting in the balcony of Grant Hall, looking down on the audience below while Boris begins the show. I am determined to direct my attention away from Boris for the duration and so I gaze with the purpose of shutting out his voice. It’s a tactical error. As I note the details of T-shirts bearing Queen’s slogans, “Queen’s: The Harvard of the North,” and faces orienting towards the front, I become aware that I am leaning forward. My body begins to fold, slowly, over and down. The chair back ahead of me comes into view. I fold and lean until my head comes to rest on it. And then I wait, immobilized. My frosh group is whispering. They have noticed my body. What should they do? They yell down: hey boris our gael collapsed! He looks up, registers the scene, and commands me to wake up. Nothing happens. He tries again. I do not move. He leaves the stage and runs up the stairs to find me. Again, he attempts to lift the trance; again, he fails. Boris orders me to stand up and follow him. I stand and walk down the stairs, reach the stage, and sit down. This is the last time I will follow his instructions. The trance (is that what it is?) surprises me. I am a mind that has been severed from its body. I can hear, think, reason, worry, imagine, but I cannot move. Except when I do. Do I feel my body? I walk down the stairs and it’s like I’m floating. From balcony to stage, I wonder how his voice penetrated my defences, and I question why I stood up at his command. Equally confused by my collapse the moment I come into view on stage, I sit away from the others, mostly catatonic. It’s a body I inhabit, but distantly. I sit there, downstage at the right, in full possession of my mental faculties. I hear laughter from the audience and see figures on stage moving to Boris’s directives. I feel the warmth of the lights shining down and the rigid floorboards underneath. I worry about what people are thinking when they look at me. The show goes on. Each time Boris gives a global command to the group to sleep or to wake, I perform the opposite action. If the hypnotized bodies on stage lie down and close their eyes, I sit up and stare wide-eyed at the audience. If they sit up and open their eyes, I lie down and close mine.

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Mostly, Boris ignores me. I sit up and lie down in oppositional form, getting my wires crossed, and I am both like clockwork and broken clockwork. He approaches me once, quietly, while the others are performing (was this the California Raisins sequence?), and asks, “Have you ever had polio?” Somehow, I shake my head no. How do I do this? How can I move in this moment and not others? He walks away without a word, and I am left wondering, What does having or not having polio mean? Time is an elastic, slowly stretching to its breaking point. I am tired. I both want and do not want it to end because I have a new worry: I will not wake up. At last, I feel the end approaching. I look up to the balcony where the organizers are observing, and I try telepathically to communicate these worries. The message is not received. Back on stage, Boris commands his bodies to wake up. I hear people stand up, laugh, and walk off stage. I hear the buzz of the audience as they gather their belongings and begin to stream out. I sit there, feeling like cement, knowing that I have to move. With an effort I have never been able to explain, I drag myself up to standing, stumble off stage, and collapse again. I have what can only be described as a fit: weeping, shaking, hysterical. One time, they couldn’t wake Augustine up. They had accidentally left her lethargic in a trance and a nurse had put her to bed. Once discovered, they tried several times to awaken her. They tried cold water on the face, ovarian compression, and, of course, electricity. Faradization – the stimulation of muscles and nerves with electric current – was common at the time. It was of a piece with Charcot’s interest in magnetism. By the time Charcot arrived to observe her the next morning, she had been deeply asleep for twenty-two hours: “Her body was limp; her pulse was 28–32; her breathing very slow (3–6 per minute); her temperature was below 36 degrees; her face was cyanotic. In a word, we were faced with an extremely serious situation.”20 Charcot managed the resurrection: his touch to her hysterogenic zones initiated several attacks after which Augustine regained consciousness. Exhausted, she stayed in bed for two days. The doctors had discovered “artificial sleep.” Someone sees my delirium and signals to Boris. He is angry. “Wake up,” he says. I hear him and do nothing but shake and weep and cry out. “wake

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up!” he yells. Nothing. Finally, his exasperation grabs hold of my intransigence: “Don’t wake up then. Stay like that.” And magically, like he has pressed on a hysterogenic point, I open my eyes. I sit up. Speaking to those who have gathered around, Boris says, “She always had the power to wake up. She was never under my control.” And he stalks away. Augustine was incredibly suggestible. She could respond to a camera flash or a loud sound. She could induce herself into hypnosis by ringing a gong.21 During the period when Augustine’s photograph was taken, she was in a period of remission. For sixteen months Augustine had no hysterical symptoms at all, and she transitioned from patient to employee at the hospital. She was a ward girl without authority, and so when she consented to continue being hypnotized for purposes of photographic documentation, I don’t know whether she had any real ability to say no.22 Many of these photographs of Augustine in the third volume of the Iconographie were likely taken during this period of in-between-ness when she was not sick but not precisely healthy either.23 A hysteric in remission is like a dormant volcano: something is always simmering beneath the surface.24 The hypnotic experiments were already depicting simulations of symptoms rather than genuine hysterical attacks. Add Augustine as an asymptomatic hysteric exhibiting the “somatic signs” of hysteria through the mechanism of hypnotic suggestion, all before the camera, and it’s turtles all the way down. Is a symptom triggered by hypnosis still a symptom? Can a hypnotic performance induce a traumatic event? When she relapsed, something had changed. She became agitated and, once, violent. Charcot could no longer hypnotize her. They treated her with chloroform, ether, ovarian compressions, and one time, when she was beyond control, they locked her in a cell. After several failed attempts at escape, one day she dressed up as a man and walked out of the hospital.25 I don’t know how I got home that night.

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Dis-Orientations I am a porous vessel afloat on sensation; a sensitive plate exposed to invisible rays; and so on. Woolf, Moments of Being

My hand reaches out to touch the wall. It’s habitual now, this reaching. Even when I don’t need it, which happens more these days, still my fingers extend out, palm flattening against the surface. It’s cool to the touch. I feel the slight imperfections of the plaster as my fingertips travel along, and I know this wall has stood the test of gravity and time. Its coolness, its hardness, its scars and divots all reassure: this wall knows where it is in space. It gets me up and down stairs, along corridors, around corners. It provides a reprieve from anxious palms and the hot sweat of panic. z

It’s Tuesday, 10 September 2019. I’m preparing for the start of term. I contracted a virus at the graduate orientation I had run the week before and spent Saturday and Sunday mostly asleep. Now, a day before class, I’m working on my first lecture for History of Photography when the vertigo hits. I know what it is, having had spells since the mid-nineties, and so I try to work through the spinning, expecting it will pass. But it’s no good: this episode is persisting and there’s nothing to do but give into it. (So much of this story is a battle between submission and resistance.) I take a Serc – a betahistine commonly prescribed for vertigo – and go to bed. A few hours later, the earth’s quickened rotation has finally slowed, and I return to work. I wake the next morning and feel fine. Sitting in my office before class, I review the syllabus and my notes. I feel a bit off. I can’t keep simple details in my head, like the miscellany of announcements I must remember or the assignments I’ve devised, but I chalk it up to pre-class nerves. I look at my watch: it’s time. I make my way down to the classroom and begin setting up. I see students I know from other classes and feel happy at the sight of friendly faces. As I begin going through the syllabus, something happens. I am both talking and watching myself talk. I am looking at the PowerPoint on screen, struggling to make sense of the words, and I’m watching myself look at the

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PowerPoint. My voice sounds strange, like I’m hearing a recording of myself. I can measure in seconds the time between forming words in my mind and speaking them out loud. I’m not sure that I’m making any sense. My brain is glitching. For a moment I wonder, Am I having a stroke? I’m aware of students staring at me (of course they’re staring at me – it’s the first day of class and I’m the professor). I’m worried they can tell something is wrong. Can they tell something is wrong? My fingers have turned white from gripping the desk to keep from falling. A troubling thought is scratching at the door of my awareness: What if I can’t deliver this lecture? I don’t know how much time passes between the cognitive slow-down and the moment I turn to the class and ask them for a ten-minute break. I stumble over to a chair and text Patrick: “I nearly keeled over in class just now.” I don’t realize that my computer is still connected to the screen, and students can see my text chain until one of them tells me. The line between public and private has been skirted twice: a disturbing physiological experience and a message of distress both on full display. As a teacher, I want to be both present and absent in the classroom. I want students to connect with my excitement over the material, maybe laugh at a few of my old jokes. What I don’t want is for them to think of me as embodied at all. I’d be happy to exist for them as a Futurama-like head in a jar. Instead, here I am next to students who can now see that I have moved on from texting to calling Patrick to say I think I’m in trouble. Whatever it is that I’m feeling, it isn’t settling down. Thought feels just out of reach. Time slows, noises amplify. The whirring of the projector, the humming lights, the hushed whispers of students trying not to notice, or trying to protect me from their noticing. That tiny, scratching thought is getting more persistent. Usually, I just push through. If it’s aching feet or a fiery hip, I detach from those body parts until I’m done with the day. It hasn’t been ten minutes yet, but the thought has swelled in size and is winning out over the assumption that I’m likely overreacting and I should just get on with it. I stand up, holding on to the chair back, and apologize: I can’t continue. There’s an awkward feeling in the room as students slowly file out, telling me in hushed tones to feel better soon. I look at the clock: it’s been about twenty minutes since class started. As the room spins, I gather my computer and papers. I have an hdmi cable that I need to return to a colleague, and I can’t fathom how I will do this. I’m not sure how I’ll manage

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the two floors back to my office. I make my way to the door and lean against it as I shuffle through. Now in the hallway, I glue the right side of my body to the wall and begin to move forward. I make my way along the hallway, around the corner, and finally reach the elevator. I step in and lean against the wall. When the doors open two floors up, I’ll have to walk about ten steps, open a door, and then about thirty more steps down to my office. I’m a tightrope walker for those first ten steps, using only my damaged sense of balance to make it across this space with no walls or bars to hang on to. I make it to the first door and open it to find S standing there talking with someone I’ve never seen before. She hasn’t worked with us for very long, but long enough to recognize me. I instinctively reach out, placing my hand on her shoulder. I can see her wanting to back away but she must have seen something on my face and so she stays, letting my hand rest where it is. I’m not well, I explain, and I have this cable I need to return. Would she mind, would it be a major imposition, for her to see it returned? I’m fixating on the cable as a strategy of misdirection. I know I must seem odd. I’m trying to behave like a normal person, not like someone accidentally hypnotized or in a trance or drunk. God forbid she think I’m drunk. We keep up the façade. She accepts the cable and says she’ll return it. I thank her and say I’m going to walk to my office now. She asks if I need help. I’m fine, I tell her. My hand leaves her shoulder and reaches for the wall. Thirty steps to go. Students teem around. The light, exceedingly bright, bores through me. I try to melt into the brick. One of the students is looking at me. I pretend my slight listing is entirely normal. He gives me a grin, which I return with a weak smile. I keep walking through Jell-O. At a certain point, I become aware that S is following me down the hall, just two steps behind. Inwardly, I am grateful. She opens the door for me and waits as I drop into the rigid, black stacking chair meant for students. And then she leaves. This is not a story of snapping awake out of a trance. There is no Professor Charcot or Incredible Boris to awaken me from my fits. Instead, this is a story of weird relations between bodies, viruses, orientations, time, and weather. These are not things you can wake up from. I sit in that chair for what feels like years. My initial relief at reaching my office dissipates as I realize that the symptoms are not. My chest feels tight and hot, I can’t catch

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my breath. The whirling in my head competes with the thumping of my heart. Nausea, that most tyrannical of symptoms, erupts without mercy. I’m dying. The nausea crunches me to the floor in a fetal position, my head by the garbage can. Outside, sirens come screaming up the street. I’m convinced they are coming for me. I’ll be loaded onto a stretcher and carried out in front of everyone. Somehow, I think, Patrick has called an ambulance. He has not. He arrived sometime earlier and has been sitting quietly in the chair I tipped out of when the nausea became all-consuming. He sits, frightened and watchful. Panic is an extraordinarily common reaction to the onset of vertigo. Not having had a panic attack before, I don’t recognize it. Eventually the nausea recedes, my heart slows, and I’m ready to escape. The effort to stand is monumental. Patrick stands by, ready to catch me if I fall. This vertigo feels unlike any of the episodes I’ve had in the past. Mostly, it has been transient. My brain would tilt on its axis and I would lose my place in the world, usually for a few seconds. Although it once lasted intermittently for two weeks, shortly after I completed my master’s thesis, it has never possessed me so entirely as now. My brain feels detached from its skull casing, free to roll around at will. Vertigo inspires new kinds of posture, new anatomical alignments oriented towards fixity and immobility. This, of course, is not good for the body, but that won’t become clear for several more months. When I finally see my doctor later that week, she looks in my ears and sees bubbles. The bubbles are caused by the movements of tiny cilia in a fluid-filled sac. Most likely, my symptoms are due to a viral infection that inflamed my inner ear. The condition is called vestibular labyrinthitis. My mind explodes with the literary, cinematic, and architectural resonances of labyrinths. From Borges to Guillermo Del Toro, to Ariadne and that lethal Minotaur, to hedge labyrinths of the Renaissance and Chartres Cathedral, labyrinths and mazes (their close cousins) have transfixed us for millennia. It turns out, we each have two inside our bodies: one in each ear. Three components are responsible for our balance: proprioception, visual cues, and the inner ear. When my hand makes contact with the wall, that’s proprioception. My hand derives tactile information about its position in space and sends that information to the brain. Concurrently, visual information travels from the optic nerve in my eye to the brain, which

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participates in the body’s balancing system. And the third partner in this elaborate dance is the inner ear. Our inner ears contain vestibular organs – fluid-filled tubes and sacs collectively named the labyrinth. The labyrinth consists of the semicircular canals, the utricle and the saccule, and they each relay information about head movement to the brain. Transmission of this information occurs via the vestibulo-cochlear nerve, one branch of which transmits from the hearing organ while the other travels from the balance organs. This happens in both ears, but if one ear is infected, the signalling malfunctions and the brain cannot determine where it is in space.26 Vestibular labyrinthitis results in a breakdown in communication. When transmission is interrupted, “vertigo, dizziness, and difficulties with balance, vision, or hearing may result.”27 When Daedalus built the labyrinth at Crete to contain the Minotaur, he nearly didn’t find his own way out. Ariadne provides the guiding thread to Theseus so that he can follow its line back to safety. I think of Ariadne’s thread as a form of ancient telecommunication cabling: she gifts the material that connects Theseus back to the world. As I study the anatomy of the inner ear, following the Fibonacci swirls of the cochlea and the U-shaped sacs of the utricle and saccule, words and ideas I played around with in graduate school – viral transmission, communication breakdowns, endlessly deferred signification – take on new layers of meaning. Now, instead of Lacanian impossibility and Derrida joking about the dead letter office, I see Ariadne laying cables from my inner ear to my brain while I am still in utero. I see her hiring hundreds of tiny letter carriers, charged with walking this cable line to deliver messages. Despite the infernal structure of the labyrinth, there is only one route they can take, and for years these microscopic homunculi follow the cables and deliver the mail, mostly on time. But the virus throws everything into chaos. The cables are dislodged, and the homunculi thrown up into the air. They hang on for dear life. When the storm settles, they find the route dangerous and stormy. The cables are no longer buried but sit precariously aboveground, and my little postal workers are forced to balance like tightrope walkers. With every wobble, the messages they carry shift, and the shifty messages turn my cryptographer brain on its side. If you think about it, the inner ear is mythic all on its own.

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I’m excited by the bubbles; they represent a visible, organic explanation for the vertigo. I picture a profusion of tiny spheres, delicate as Chardin’s Soap Bubbles, floating around in there. But in my doctor’s classic forthright manner, she denies me the certainty I seek; the bubbles likely explain the vertigo, but not necessarily: some people have bubbles without vertigo. “Also,” she says, “we had a significant pressure drop over the weekend so that probably didn’t help.” I am back in familiar territory where the uncertainty principle reigns. Invisible pressures and unknowable bubbles: these things swirl and penetrate, pop and circulate, without my detection. My doctor tells me that this should clear up in three weeks. And so, with that definitive timeline I set myself the task of getting up every day and making it into work. I sit down to teach, which is not how I usually work, and so I need to find new pathways between my brain and my voice now that they aren’t circuiting through my legs. Much of this experience will be about finding new pathways. It’s exhausting. I drag myself home at the end of each day and sleep. Each morning I wake up, I check the calendar to see how close to three weeks I am. Teaching with vertigo is like having cotton in your head. Everything is muffled, slow, except for an acute sense of how far thought must travel from my brain to my mouth, by which I mean the mouth that utters words no longer feels immediate or proximate. I am distant from myself. After three weeks I return to the doctor. I don’t feel any different. She looks in my ears again, sees the bubbles again. She says: you’ll feel better in three months. I am undone. The thought of keeping up my efforts for another twelve weeks breaks something in me. For the first time in my life, I say that I can’t. I say that these tiny little vibrations in my inner ear have so upended my days that life is now no more than reaching out for walls and finding fixed spots to stare at to settle my waving brain. Each moment is geared towards making it to the next moment. So, I take a leave. I’m lucky, with employment benefits that allow me to do this with ease. I have never felt relief like this, the relief of sending in a medical letter agreeing that vertigo is just too much. And I begin another count: three months. Things improve, incrementally. If September is the month of nonstop amusement park rides where my brain slashes like a pendulum inside my

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skull, sometimes like the boat rides, other times like the Gravitron, then October is the month my brain begins to float on an air mattress in the Aegean Sea. It bobs there for weeks, on waves ranging from gentle lapping against the shore to fifteen-foot beauties for surfers. But always, my brain stays on that mattress on the sea. I sleep all the time. In November, I wake to a velvety covering wrapped around my brain. Each time I move my head, the cover rubs across the dura, creating a gentle friction. A velvety friction, both soft and nauseating. By December, I am feeling hopeful. The ebb and flow of my waves has ebbed some more. Sometimes an hour passes without thinking of vertigo. These small packets of time are never consciously experienced, only latently, but I know that to have any break must indicate healing. It must indicate that my balance centre is rewriting itself. And yet the spins persist. Reduced in intensity, yes, but still with me nearly every waking moment. The first moment of consciousness in the morning is a consciousness of motion. Going to sleep at night, my brain falls through the mattress to the floor. These are all things I get used to. At three months, the waves, the velvet, and the falling are still with me. I have an appointment with an ear, nose, and throat doctor, for which I have been waiting since this began. The ent confirms my doctor’s assessment of vertigo induced by viral labyrinthitis. He has no timeline for recovery: “This could be months or years.” Unlike my doctor, he denies the presence of bubbles. “There’s nothing there,” he declares, peering into my ears. “But my doctor saw them,” I insist. “A lot of family physicians think they see bubbles, but they don’t.” He dismisses her so quickly, so surgically, I picture the bubbles popping in my head. As the months pass, the symptoms shift again. For most days, the amusement park rides, the Aegean, and the velvet are memories. Now, what I feel mostly is pressure. Someone or something is blowing up a balloon inside my skull and with each breath, the balloon presses further into my cranium. There are days with more pressure and less pressure, but all the days are balloon days now. I begin to track atmospheric pressures with my balloon. If the barometer kicks up fast or drops suddenly, my balloon expands.

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These days I blame the atmosphere for everything. My brain tells me I’m in motion. It’s lying. Errors in perception are now the norm. Because I exist in a state of perpetual spatial disorientation, I’m acutely aware that I cannot presume to be experiencing the world as it is. On amusement park days, if I attempt a walk outside, the surface of the earth appears convex. It’s as though a surgeon has snuck into my bedroom at night and implanted fisheye lenses into my eyes. To know that what I see cannot be trusted is profoundly disorienting. In order to walk on this sidewalk, I require Patrick’s arm, a disciplined slowness, and a refusal to believe what I see. Weather will fuck with you, and you won’t even know it’s in the room. Vertigo turns me into a “weather body,” by which I mean that weather and climate impact more than the surface of my skin. I understand more fully, more materially, what Neimanis and Walker, mediating Karen Barad, mean by intra-action when it comes to the environment: “The ebb and flow of meteorological life transits through us just as the actions, matters, and meanings of our own bodies return to the climate in myriad ways … Weathering, then, is a logic, a way of being/becoming, or a mode of affecting and differentiating that brings humans into relation with more than human weather.”28 I am weathering. At first I orient myself to the air pressure as though it’s a prophecy. If I just pay attention to the barometer, to shifts in temperature and humidity, maybe I can predict the swells. I search the skies for signs of disturbances to come and explanations for waves that have passed. But my physician is right; pressure changes have an impact, but there are more forces at work. There is the atmosphere, the climate writ-large, and the seasons that no longer resemble themselves. And there are viruses and receptivity and the month of September and chance and too much heat and standing up too fast and the ordinary weirdness that is my body. Lesley Stern tells me that “you are mostly not you.”29 What she means is that human beings are implicated in a “web of associations,” that we are who or what we are because of relations between climate, microorganisms, other critters, and humans. Our bodies do not just happen to be penetrable structures: they are alive in the ways they are alive because of our permeability. A virus stole into my ears. It set up shop because I had not fortified

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my defences sufficiently. But is such militaristic language appropriate? A virus is not seeking to conquer; it simply wants to survive and extend itself through reproduction – if I can even use the language of desire in this context of automatic processes. As we have all been learning again, a virus does best when it doesn’t kill its host too quickly. After nearly twelve months, I see the ent a second time. I am not an interesting case for him. He is dismissive and condescending, but he does make one useful suggestion: vestibular rehabilitation therapy (vrt). We happen to have a private clinic in the area specializing in exactly this kind of rehabilitation. Why he waited this much time to recommend it, and only after I press for meaningful help, I don’t know. What I do know is that this represented the first tangible hope I had for recovery. vrt is based upon a theory of neural re-education, or retraining the brain, as so many recent books and studies refer to it.30 The goal is not cure but adaptation, and the protocol is about moving the head across multiple planes repeatedly to allow for compensation: the point at which the brain is able to adapt to and compensate for “the altered signals resulting from the labyrinthitis.”31 A chronic condition demands disciplined compliance and ongoing attention. This is a protocol that appeals to my inner Protestant: it demands disciplined and faithful adherence. It places the onus on the individual to achieve redemption. In all likelihood, the battle will continue for the duration of my life. It will require constant vigilance to reduce the effects of this possession on my spirit. So now I throw my head around as much as possible. I walk up and down steps, navigate around obstacle courses, bounce up and down on balls all while shaking my head left to right, up and down. I’m helping my miniature letter carriers to wobble a little less. Every few weeks, I have an acute episode that throws me right back into the amusement park on an all-day pass. On those days, I watch the ceiling spin and sleep when I can. But those days are fewer and further between, and mostly I live with the balloon, the swirling as I walk up and down stairs, and the gentle swaying of the waves as I make my way around the block. In Moments of Being, Virginia Woolf writes, “The lemon-coloured leaves on the elm tree; the apples in the orchard; the murmur and rustle of the leaves makes me pause here, and think how many other than human forces are always at work on us. While I write this the light glows; an apple becomes

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a vivid green; I respond all through me; but how?”32 Things happen when bodies, microorganisms, atmospheres, and ideas surge and come together. A virus, a pressure drop, a certain susceptibility, an orientation. The memory of a tornado takes root and grows and gets hooked into a hypnotic possession, and then there’s something called God or maybe just belief in the Devil. It’s not a matter of finding a distinct origin for the vertigo. The hunt for origins will only ever be futile. Instead, it’s a matter of walking while wobbling, of understanding the ground beneath as a tightrope that slackens and contracts unpredictably. Of weathering the storms.

The Waves z

An exhausted body almost always provides the wrong information. The wrong information is also the right information: things can’t go on like this, and so they do… Boyer, The Undying, 251–2

I’m Not Jesus The osteopath dismissed me from her practice because I could not feel the water moving in my body when I walked. She had been encouraging me to become more attuned to myself. Each time we began a treatment, she would say, “Okay Karen, you are in the room watching the scene. Stay in the room.” This is something alternative practitioners say, and usually I pretend to understand that being physically and materially present in the room does not necessarily mean that “I” am in the room. This kind of instruction is rooted in a system or treatment method characterized by a belief in spirit/body division, a modification of Descartes but one that captures psychological or spiritual detachment rather than a division between a rational mind and a sensuous body. Depending on the practitioner, the detachment can signify anything from daydreaming to a departure of the soul from the body. The osteopath was directing me to a kind of focused detachment. I tried to project myself into the chair by the door and imagine a spectral self, sit-

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ting and watching my body on the table as she worked. Sometimes, I projected this apparition onto the ceiling, floating a few feet above the table and looking down on the body below. It took focus to generate these projections, and always I had the feeling that I was doing it wrong, that I wasn’t able to keep myself in the room in the right way. After several weeks of visiting the osteopath, I asked her for clarification. How should it feel? How much energy should it take to maintain this focus on a projection? Am I impeding the treatment if I’m not doing it correctly? She became exasperated. She asked if I could feel the water flowing through my body each time I took a step. I said, “You can feel water moving in your body?” “Oh yes,” she said, “we are all walking around full of water all the time; you just have to pay attention.” I came home and looked it up: depending on age and body composition, “up to 60% of the human adult body is water.”1 To walk and feel the water sloshing around is an exercise in attunement or what some practitioners would call mindfulness. When I returned to the osteopath for my next appointment, I reported that I was no closer to my inner waves than before. Likely, she sensed my intransigence. She knew she had not been helping my pain and probably felt she had reached the limit of what she could offer. We knew where we were. And so, at the end of that session, she very firmly but also kindly told me that until I could really connect with my own embodiment, she could not help. My pain could not be eased due to my failure to be in the room and to walk on water. The truth is, I never even tried to feel the water. I had reached my limit for compliance. I was sensing an old pattern creep into the room: the pattern of a clinician-patient relationship beginning to sour. The basic structure of the relationship goes like this: patient meets new clinician and hopeful suggestions for treatment are made; patient and clinician together generate an atmosphere of optimism and commitment; time passes; patient begins to sense the incursion of doubt, the absence of change in her condition, and the unravelling of hope; clinician begins to tire from lack of progress; some talk about the patient being a more complex or mysterious case; relationship dissolves. The dissolution is always subtle, like the turning of the tide. Sometimes a slow fade-away by the patient is all it takes: they exit and simply do not reschedule. There are no hard feelings;

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the patient’s body is merely resistant to treatment. Responsibility always lies with the patient. In my case, I could neither detach from my body sufficiently to watch the scene nor inhabit it intimately enough to feel the flow. From the start, the osteopath laid the groundwork for my culpability. During our first session, she noticed my navel ring and suggested this piece of jewelry was inhibiting my healing. Using language from both the registers of science and New Age philosophy, she suggested the scar tissue was inhibiting fascial connections, and that if it were her, she wouldn’t want to put a piece of metal at the centre of the centre of her energy source. She regularly jumped the tracks between science and what gets called “a holistic approach,” a technique common among New Age practitioners. I am allergic to talk of chakras and lost souls, but as a genuine agnostic, I reserve a small piece of real estate for the “maybe who knows” club. However, it’s her talk of fascia that draws me in. I know enough about this physical, material substance to give credence to the rest of her statement. Fascia, a crystalline fractal connective tissue all but ignored until quite recently, has emerged in the last decade or so as a significant component in human health. Massage therapists, physiotherapists, and chiropractors all tell me that fascia never used to be taught in school, that they learned to think of it as inert, irrelevant material through cadaver studies. When the French hand surgeon Jean-Claude Guimberteau filmed living fascia with an endoscopic camera and released it as a film called Strolling under the Skin in 2005, manual practitioners took note.2 The film is spellbinding, revealing fascia as a shock-absorbing, flexible architecture that responds to pressure in systemic and unpredictable ways; it’s a spiderweb shimmering in the sunlight, absorbing the force of a breeze by stretching or twisting, and then returning to its original structure. No doubt the use of Strauss’s Blue Danube, Op. 314 as soundtrack to the movements of this diaphanous web enhances the poetic association with dancing and gliding, but even without sound, watching the geometries expand and contract induces wonder. Fascia displays “no geometric regularity, no linearity; just fractal chaos.”3 It’s also a structure of care, surrounding and holding every “organ, blood vessel, bone, nerve fibre and muscle in place.”4 Ideally, it glides freely over muscles and absorbs pressures through “dynamic fractalization,” but injury can interfere by generating adhesions, or scar tissue, that impedes this gliding.5

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And so, when the osteopath suggested I had caused my own adhesions with this offending piece of steel, that my fascia was stuck around my belly button and just maybe that was an explanation for ongoing pain, I came home and removed my navel ring. I would try almost anything to feel better. Of course, it didn’t work. Recently, I recounted the experience to my current physiotherapist. He shook his head and said, “But there is no fascia around the navel.” I thought of Alexander Pope: “A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring.”6 I thought of all the things I don’t know combined with the few things I do that make me vulnerable to quackery dressed up as science. But the osteopath experience also highlights the complexities of language and atmospheres in these rooms we go to for healing, how practitioners can muddy the waters and how patients desperate for help will suspend disbelief and hand over money. For nearly thirty years, I have worked with naturopaths, rheumatologists, physiotherapists, chiropractors, massage therapists, acupuncturists, shiatsu practitioners, myofascial release people, general physicians, ear nose and throat doctors, orthopedic specialists, sports medicine doctors, hematologists, Pilates and yoga trainers, dental surgeons, social workers, psychologists, hypnotherapists, reflexologists, audiologists, and podiatrists. I use the term work purposefully to emphasize that for the chronically ill, trying to heal is labour oriented towards self-management, and that this labour constitutes an expenditure without any guaranteed return on investment.7 The irony of David Harvey’s observation in Spaces of Hope is inescapable. Under late capitalism, he writes, sickness is defined as the “inability to go to work,” and yet chronic illness is nothing but work.8 I reread this list of practitioners visited and feel the years piling up in my bones. If you were to cut into me and look at a cross-section of my body, you would see rings like those tracking the ages of trees. The rings are composed of the reams of exercises assigned and followed, the notebooks filled with symptom tracking, the splints braces mouthguards and orthotics, the recipes cutting out yeast sugar gluten dairy inflammatory foods high oxalate foods high glycemic foods, the year I cut out chocolate, the buying and not wearing of so many pairs of shoes that felt not too bad in the store but turned out to be lying, ginseng msm glucosamine melatonin, the three years

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I spent on antibiotics, sleeping on a magnetic mattress, learning Pilates, learning yoga, learning tai chi, going swimming but not swimming for too long or too hard, the years since I’ve been able to ride a bicycle, not running. Geneticists use the phrase “diagnostic odyssey” to describe the inordinate length of time it takes, and the intensity of challenges patients face, to receive diagnoses for complex conditions.9 It’s an epic term, conjuring visions of Odysseus, sirens, and lotus eaters. It’s also a term that implies an eventual end point: the end of an odyssey signals the end of a journey, as though patients arrive at the end of their quest once diagnosis is achieved. But the moment of diagnosis, be it congenital, chronic, or terminal, is no ending at all. As Anne Boyer writes, “Now you don’t have a solution to a problem, now you have a specific name for a life breaking in two.”10 Once my diagnostic ship came in, I undertook a therapeutic odyssey, riding the waves of treatment, abandoning ship at points of despair, only to reboard and set a new course once the desire to try hummed back into life. But I am no Odysseus, and this is not a hero’s journey: it is an elegy for the exhausted if an elegy can be said to contain rage as well as grief.

How Space Becomes Time Different treatment rooms give off different vibes. Some are deliberately sterile and clinical, emphasizing a cold empiricism, while others are all mood lighting, cozy blankets, and nature soundtracks designed to get you relaxed and receptive. Some combine the cozy and empirical traditions, pairing big windows and the gleaming light of rationality with warming wall hues to distinguish from the austerity of medical white. Certain therapists have anatomy posters pinned up and others display large-format prints of serene ocean scenes. One rmt displayed a massive photograph of a lighthouse beset on all sides by raging waters, meaning either that her room was a safe port in a storm or that client bodies were at the mercy of smashing waves. In the nineties, I returned repeatedly to a woman who wore Bohemianstyle dresses, used essential oils, and talked about witch hazel and milk thistle. I’d walk into her treatment room and feel the world slough off. It wasn’t just the dim lighting or the piles of quilts in wintertime, it was also the pro-

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cess of reaching her. In every kind of weather, I would cycle to her office, located in a nineteenth-century red brick woolen and cotton mill. Four stories of stability and solidity. The original hardwood floor creaked underfoot, incorporating the rhythm of my feet into its century-old score. The passage between the building’s main entrance and her office door was a portal to another dimension. I lay on the table and knew that her interest lay not in fixing me but in providing temporary succour. Time melted in that room. Time is an active partner in all client–patient relationships, and it manifests both directly and atmospherically. All massage therapists have clocks, more or less conspicuously placed in the room, and patients are billed according to time. Most physiotherapists and chiropractors have small timers they set after inserting acupuncture needles or placing heat on a sore spot. Ultrasound machines, tens (transcutaneous electrical nerve stimulation), laser, and other electronic devices have timers built in. I lie and watch the time count down. I get bored or irritated by the waiting. If a chiropractor has drop-in as opposed to scheduled appointments, I might wait to enter a treatment room and then wait again once I get into the room while they manage four or five other patients at the same time. I am captive to the streaming pop music or the news broadcasting from the tv on the wall. I count the number of songs I have to hear before someone comes to remove the needles from my body or take the heat off my neck. I wish my phone was closer to hand to give me something to do, and then I castigate myself for this thought because really, I should be focused entirely on the treatment. Physiotherapists always book appointments, and they have different strategies for managing multiple patients at once. The “old school” approach, as I think of it, consists of reproducing the factory assembly line: beds are lined up one next to the other, maintaining a few feet of distance between each. Sometimes patients are separated from those on their left and right by a thin curtain, but more often they can all watch each other’s treatments while they wait for their own. Usually, staff come to greet you first and apply ice or heat, tens or laser. They set timers for each of these things, and often it will be at least half an hour before you even see the physiotherapist. Once I discover that a physiotherapist is old school, I lose faith. I can put an ice pack on at home, and despite the posters they pin up indicating the efficacy of these treatments, I have never found healing through

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ultrasound. When the physio arrives, they stretch you out, assign some exercises, and send you on your way. What with the other ten or fifteen people in the room, you get the sense they’re just too busy to really pay attention. With a “new school” physiotherapist, you are delivered into the privacy of a room with four walls and a door. It feels personal and focused; it engenders confidence. You wait less. I can spend one and a half hours at an oldschool physio clinic but only five minutes with the actual practitioner. With a 2.0-style physio, I may have twenty minutes face-to-face and I never spend more than forty minutes at a single appointment. With physiotherapists and chiropractors, I am always aware of the time. Time gets spent, passively, profligately, in treatment and waiting rooms. Boyer describes how “in pain, the spatial becomes temporal, as in pain is the experience of a location that exists only as desperation for its end.”11 This temporality also encompasses boredom, worry, ambivalence, frustration, along with hope for better days ahead. Waiting in a treatment room, I think about all the things I could be doing; I imagine all my colleagues occupied by productive tasks while I fritter; I wonder if reception has forgotten about me; I flip through old magazines looking for recipes; I pull out my phone every three minutes to see new posts or check the news. A person pays double as a chronic pain patient: in money and in time. This tends to get categorized as privilege, I know, because I have the kind of job that allows me to spend these resources. It’s just that I am beginning to think of all these rooms and all this time as my own pharmakon: the remedy that is also a poison.12 Boyer writes of her experience as a cancer patient: “The exhausted are exhausted because they sell the hours of their lives to survive their lives, then they use the hours they haven’t sold to get their lives ready for selling, in the hours after that to do the same for the other lives they love.”13 Fibromyalgia is not cancer; it does not constitute a degenerative or terminal disease process. Its ongoingness generates a different relationship to crisis and urgency, one that resembles what Lauren Berlant terms “crisis ordinariness.”14 While the moment of diagnosis may be traumatic, the daily management of chronic pain inducts the patient into a state of constant, and therefore ordinary, hypervigilance around her body. Without a cure, careful and constant management is the key to navigating chronicity. The rheumatologist who diagnosed me offered this advice: “This is not a disease; this is a pain

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in the ass.”15 The key to dealing with pains in the ass is disciplined regularity. The patient must become manager of herself, splitting off her desires from her realities with a ruthless rationality. Insofar as she is able, she must create an atmosphere of homeostasis around and within her. She must become as stable and solid as a 200-year-old woolen mill.

Being a Good Patient All my chiropractors could have doubled as high school gym coaches. Their jocular and informal enthusiasm generates an energetic optimism, a “cando attitude” for healing that I always want to match with a sporty attitude to life. One March, a new chiropractor asked if I was enjoying the madness. I had no idea what he meant, which was apparent from the look on my face. He had formulated the impression that I was a sports fan from my talk of yoga, swimming, and cycling, and this impression contributed to an atmosphere of relaxed ease, a shared sense that my body would respond to his manipulations. When he realized I couldn’t talk the language of March Madness (or any sports, really, unless we are talking late-eighties Canadian competitive swimming), we chuckled together, but I felt an atmospheric shift in the room, like the lightness had fallen away and now what I felt most palpably was gravity. With my basketball ignorance revealed, I could no longer play the role of someone who heals (because in my mind and despite all evidence to the contrary, sporty people get better). With any practitioner, I want to present a good face. I never lead with my fibromyalgia diagnosis; I want to be seen as something other than an impossible case or a malingerer. There is an energy that leaves the room when you use that word, like air escaping a balloon. It makes everyone tired. So, I focus on a localized issue: jaw pain, calcific tendinopathy, vertigo, plantar fasciitis. Depending on how the room feels, I may venture to say that I have received a chronic pain diagnosis while reassuring the practitioner that I don’t actually place that much stock in the label fibromyalgia. In every single instance, practitioners have agreed with me that this word, fibromyalgia, designates a cluster of symptoms rather than naming an identifiable disease process. Everyone concurs that we – mostly women – are experiencing something, but that treating this something is tricky. And, if we achieve a

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sufficient sense of harmony in the room, if they really feel that I am receptive, they go on to say that patients who identify too strongly with the diagnosis are poorly positioned to get better. The water-obsessed osteopath suggested at one point that I see a respected physiotherapist in the city but counselled me against using the F-word since the physiotherapist in question refused to treat clients with that label. “They can be more comfortable with their diagnosis than with doing the work necessary to recover,” the osteopath said. This goal of presenting as an ideal patient likely took root shortly after my fibromyalgia diagnosis in 1996. I had been attending a clinic devoted to treating chronic fatigue syndrome and fibromyalgia through a multimodal approach. During each visit, I would see a massage therapist, a physiotherapist, and a social worker. The massage and physio treatments were mostly conventional; it was my time with the social worker that proved noteworthy. I sat in an old Chippendale-style armchair, donned a pair of dark-shaded goggles wired up to a computer, and watched as the social worker hooked up electrodes to my head and ears. She always joked that my earlobes were too small for the clip. I’d wonder what other people’s earlobes were like, and then we’d sit and chat about nothing in particular for twenty minutes. (Later I learned that most patients used their time with the social worker to talk about feelings and fears around their diagnosis and prognosis. I was still too young in this illness to have formed any understanding of its future import, and so I stayed focused on the flashing light and banal chitchat.) She kept watch on the computer screen, while a tiny light emanated from the goggles and flashed into my eyes. The light pulsed in response to rhythms that she set across the room; its flashing an entreaty, asking my brainwaves to shift gears. We each have four different waves rolling through our brains: beta, alpha, theta, and delta. Each wave is associated with a particular speed and amplitude. Our beta waves are the fastest of the four with the lowest amplitude, and speedy beta is associated with higher-level cognition function. Vector calculus requires beta. At the other end, we have the delta waves. With the greatest amplitude and slowest speed, these are the waves that roll us through dreamless sleep at night. Theta waves are slower than beta and alpha but move more quickly than delta. Ideas and creativity flow in theta.

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Theta dominates in moments when you don’t have to pay attention to your surroundings, or you zone out because your body knows how to do what it’s doing. All four waves are active all the time, but different ones dominate depending on what you’re doing: multitasking (alpha), daydreaming (theta), mathematical calculations (beta), deep sleep (delta). Fibromyalgia patients have consistently shown altered brainwave patterns on eegs. While researchers do not understand how or why this happens, quantitative eeg tests reveal that our slow waves dominate in ways that deviate consistently from the general population. Research on this has developed since the late nineties, but in 1997 I was told that I was stuck in theta.16 My brain, in other words, had been idling on the beach, just watching water lap gently at the shoreline, tired out from its long journey across the ocean. This stuckness is associated with brain fog, fatigue, and pain. Each time I asked my brain to do something like thinking, the effort required was akin to tire wheels spinning in the sand. The electrodes, with the goggles and flashing light, were an entrainment device designed to encourage my beta and alpha waves to pick up their socks during wakefulness. Entrainment refers to a body’s capacity to be affected, and its meanings range from the fields of neurology to meteorology. Atmospheric changes can affect sinus pressure just as a flashing light repeated over time can kick your brain out of its slow equilibrium. Called eeg-driven stimulation, this treatment is a form of classical conditioning that “drives” responses in the brain, responses made possible by neuroplasticity. After nearly three months of almost daily visits to the clinic, I had energy and focus like I hadn’t felt in a long time. My theta waves had lowered their amplitude and I was imbued with a heightened state of energy, which lasted only until I moved to a different city for grad school and lost access to the electrodes and the flashing lights. What did endure from that clinical experience was one remark by the massage therapist. She told me that during their weekly staff meeting, someone commented, “Why can’t all patients be like Karen?” She was trying to be complimentary, to let me know that everyone there appreciated my upbeat attitude, that they enjoyed treating me. Most of their clients were middle-aged women, she said, who had lived with this for so long that their language was thick with the accumulation of time and despair. These women wanted relief, a desire that

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generated an atmosphere of intensity for those seeking to provide care. But the message received by my twenty-two-year-old self was: nobody likes those middle-aged ladies. Entrainment works on all sorts of levels. Fast forward nearly three decades and I am now one of those middle-aged women. I know that sometimes, desperation gushes out of me in waves.

Credulity Yeast was everywhere in the early part of the century and candida treatments were all the rage. You could walk into any health-food store and see remedies for candidiasis front and centre. The local Chapters prominently displayed candida-related books. Friends had friends dealing with candida overload and going sugar-free. One day, I visited a naturopath who used a wand to test my levels and reported that I had enough yeast in my system to kill a horse. I nodded and agreed that so much yeast can’t be good. Obviously, I said, we must kill it. Remembering this scene now, I wonder, How much yeast does it take to kill a horse? I google “Can horses die of yeast infections?” I learn that candidiasis is rare in horses, much more common in birds and cattle. Pound for pound, having “enough yeast in my body to kill a bird” seems far less impressive than that required for a horse, and nobody but Nietzsche ever wanted to be a cow, so I understand the naturopath’s rhetorical strategy. I look at images of hooves inflamed by thrush, which produces “black, necrotic … foul-smelling material,” and bellies painted over with skin lesions.17 I start to picture my body oozing and necrotic. Later I go for a walk and see flowers bursting out of tree trunks. Glorious purple floral extrusions, called cauliflory, spring out of redbud trunks and into my yeasty imagination. I worry the tree is suffering from fungus (it isn’t); I picture floral cauliflory on horses instead of weeping lesions. I picture me, sitting across from the naturopath with blooms sprouting from every inch of my body. The naturopath’s wand was one component of the Vega testing system, a protocol first developed in Germany several decades ago to detect allergies, environmental toxins, and other infections. The wand is actually a

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probe designed to record changes in skin resistance when exposed to various substances.18 Measurements are recorded in microamps, and the naturopath translates each patient’s microamps into diagnoses of allergies and sensitivities. I think of that probe now as a magician’s wand, one that transforms the language of electricity and electrodes into quackery like a rabbit can transform into a scarf or a bouquet of flowers. The two studies conducted on the efficacy of Vega testing conclude that the protocol is so much hokum.19 I think about the relation between desire and credulity, and how the language of electricity can be deployed equally for empirically based eeg-driven stimulation or fungal nonsense. We are, after all, charged up as human beings; the human body at rest “produces around 100 W of power”20 and pain is only experienced with sufficient electrical changes in individual neurons. We are born wired. But, short of having training in neurology, anatomy, physiology, and biochemistry, how is a patient to understand where the logic frays? Yeast is everywhere. It lives in the gut and the genital tract, but also circulates in the atmosphere. It’s sitting on top of your cheese in the fridge and probably your grapes too. Beer, bread, and wine would not be possible without those floating yeast cells carried hither and thither by the winds until touching down to ferment. The yeast that makes your bread (S. cerevisiae) is different from the yeast in your body (candida). This latter category, and more specifically Candida albicans, is the yeast that gets naturopaths excited and the kind that needs to be reined in. They talk about yeast systemically – not just a problem restricted to women’s vaginas – but of course women’s vaginas are the primary association with rise of yeasty problems. I first became aware of this “problem” watching tv commercials as a kid, where I learned that Monistat was there to help women wanting carefree ways to cure their vaginal yeast infections. Spend a few days with Monistat, and you could be dressed in billowing white skirts riding an Arabian horse along the beach again as though it had never happened. Just exactly what “it” was remained vague, as did the actual contents of the Monistat box and the process it entailed. To kill yeast the naturopathic way, you need money and access to healthfood stores that sell such things as yeast-free (again, not candida but the other kind that doesn’t live in your gut) bread and stevia. You must replace all the jam in your fridge with sugar-free versions and avoid processed or

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prepackaged foods from the grocery store. Forget about eating white rice. If you are in a relationship, then you also need a willing partner. The naturopath informed me that Patrick must adopt the same yeast- and sugar-free diet so that I would not catch any sugar from him while I was clearing out my system. Being the eternally good sport that he is, Patrick agreed immediately to this de-yeasting adventure. We tried little experiments, like making our own preserves with stevia. After dumping giant cans of unsweetened orange marmalade into a pot, we added two or three drops of stevia. Then a few more. Then the whole bottle. It was inedible. Later we discovered we needed bottles and bottles of that sugarfree sweetener to make the orange rinds palatable. The naturopath told me to expect sluggishness during the first days, “but you’ll pick up and start to feel so much better in the next couple of weeks.” This turned out to be incorrect. I was perpetually irritated by the time required to learn new recipes and source new ingredients, and my energy and pain levels were unchanged. Patrick felt worse all the way through, headachy and fatigued, leaving us to conclude that his system operates better with a steady supply of sugar. Yet at the end of this experiment, I felt that my body had failed to respond, not that the diet was a flawed prescription. Implicit in the naturopath’s prescription is the assumption that bodies are connected, that they affect each other. This assumption aligns with my own understanding that humans are not self-contained monads but exist in complex networks with other human and nonhuman beings and environments.21 Limiting the discussion to transmission between humans, we know for example that chemical and hormonal entrainment exists.22 Pheromones represent one form of chemical entrainment; they “signal and produce reactions by unnoticeable odor in many hormonal interactions, including aggression, as well as sex.”23 When women move in together, their cycles align. However, the scientific merit of the naturopath’s yeast transmission theory – catching sugar from your boyfriend – is beyond dubious. For Patrick to pass yeast on to me, he would have to have an infection already (he didn’t), and for me to pass something on to him and then get it back again, I would have to have an active infection (I didn’t). If we expand our discussion to include nonhuman life, then we can explore how candida affects its human host.

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Under normal conditions, candida contributes to digestive and immune system health. In certain instances, too much candida can exacerbate gastrointestinal conditions like Crohn’s disease or ulcerative colitis. To diagnose such an overgrowth, physicians perform an endoscopy to biopsy a piece of stomach lining. Wands and probes only work if they are inserted into the body, not pressed on the surface of the skin. There have been no studies confirming the existence of “yeast syndrome,” one of the labels used by naturopaths and other wellness practitioners. Moreover, medical research shows that dietary changes do not constitute an effective treatment for diagnosed yeast overload. Instead, physicians prescribe antifungal medications.24 Why have so many people reported feeling better after a candida cleanse diet? Eliminating processed foods and sugars while introducing whole grains into your diet translates into food with more nutritive value. It has nothing whatsoever to do with yeast.

A Soul in Pieces After one particularly intense massage experience a few years ago, my myofascial release practitioner explained that I had just managed to reclaim pieces of my soul. I don’t know what a soul is, but when I hear the word, I can only ever think in dramatic terms, like Foucault describing the soul as the “prison of the body” or Dante clambering around all those tortured souls in purgatory.25 Or my teenage self, worrying about the fate of nonbelievers. This practitioner, who had introduced herself to me as evidencebased and a believer in science, also believed in past lives, spiritual suffering as etiology for physical suffering, and the evils of pharmaceuticals. The book she recommended to me as we began treatment spoke about past life regression, power animals, and drumming circles in Sedona.26 One day I mentioned that I was considering a cortisone shot to deal with a long-term calcific tendinopathy in my shoulder. She did not approve. The frustration spilled out of her as she told me that if I was truly serious about healing, I would do no such thing. “Cortisone,” she said, “is just a way to mask the pain rather than address it head-on.” Moreover, she said, “cortisone will permanently damage your tissue.”

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This last statement was a wild oversimplification. It is true that too many cortisone injections in the same areas can cause permanent damage, but most people do just fine with appropriately spaced injections over the course of a single year. It is also true that injecting cortisone into certain sites just a single time may result in permanent tissue damage. My current rheumatologist was happy to inject my shoulder (I did eventually choose to receive two injections, about six months apart) but did not want to touch my elbow for this very reason. Science becomes slippery in the mouths of some alternative practitioners, and their remedies are often delivered with a heaping portion of guilt. If you cannot feel the water in your feet, if you dare choose the cortisone, then you are not a genuine seeker.

Meat, or How Fascia Is Put in Its Place I flew across the country several times to lie on a table and get beaten with a mallet. Inspired by new research into the fascial system, like Guimberteau’s Strolling under the Skin, a physiotherapist in Victoria, British Columbia, began 3D printing his own tools for breaking down adhesions so bodies could glide again. I was in a fallow period, having arrived at the end of another treatment attempt gone nowhere, when my father called one day and said he had just seen a new physiotherapist. “Who knows?” he said, aware of just how many things I’d tried over the years, “but this guy is different. He’s not your average physio.” I filed away the information, and during my next trip out west to visit my folks, I made an appointment. I didn’t feel any particular optimism in the waiting room, nor expectation. I had decided to offer him my feet, and nothing else. He was the first “new school” physio I encountered, with a private treatment room designed for one patient at a time. Gone was the assembly-line feel and the sense that I was being compared to textbook descriptions. His examination spanned skull to toes, a reassuring sign that this practitioner understood connective tissue. Then, he pulled out an instrument that looked like a hammer, but with a head made of rigid plastic rather than steel. The hammer is accompanied by a disc that he placed at various points along my body. And then he hit me. Rather, he placed the disc against my flesh and hammered the

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disc. He hit my thighs, my feet, my pectorals, my head, my glutes, my hips, my shins, my hamstrings. The sound reverberated off the walls. They could hear the pounding in the waiting room. After about twenty minutes, he said, “Well, let’s see how your feet feel. Try walking without your orthotics.” I got off the table and walked. Emily Dickinson writes, “Pain – has an Element of Blank – / It cannot recollect / When it begun – Or if there were / A time when it was not –”27 She is right, but I have learned that the absence of pain also has an element of blank. As I walked back and forth across the treatment room that day, I fumbled for words to describe what I was feeling, which was in fact what I was not feeling. Like a vacuum, but not. Like a hole, but not an empty one. A nothing adding up to something. The shockwaves hit later, after my last appointment that week. Sitting at a Starbucks patio with Dad trying to describe how I felt, the tears began to flow. I would be returning home the next day, far from the hammer and the disc, and what if the change was not permanent? Nobody near me was doing this kind of work, and I sensed a new kind of chronic anticipation: Would the pain return? Less than a month later, I had my answer: whatever magic the physio had performed reached its expiry date. The rhythms of pain reasserted themselves and I hatched plans to return west as soon as possible. For the next two years, I booked two-week journeys to see him. Again and again, I lay down and consented to being tenderized. Make no mistake: the hammer hurt. At the end of our first full week of treatment, my body began to dread these trips to the clinic. And still, I went. Like a monk practising daily flagellation for the purification of his soul. Miracles are temporary. Never again did I experience that same glorious nothing, that sun-dappled vision of a body that could be a friend. The hammer and disc metamorphosed from therapeutic tools to weapons. The physio got weird, and the beatings intensified. New instruments were introduced, resulting in intense bruising and, finally, bleeding. He was experimenting with a style of dry needling, a style consisting of multiple quick stabs into a single area. From the corner of my eye, I could see his arm swinging down in repeated arcs. I watched the blood bloom from my hip and silently determined never to return.

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Abandon Ship There is a thin line between suggestibility and gullibility, where one is the capacity to be affected while the other designates an openness to believing things that are not true. I learned from The Incredible Boris that I possess suggestibility in spades. But what of gullibility? How many snake oil salesmen have I fallen prey to, albeit temporarily, out of a misguided willingness to believe? And if we are rooting out culprits and figures for blame, what of the fractured system that we call health care? How much did my physician learn about chronic pain in medical school? According to the Canadian Pain Task Force, education in chronic pain for health professionals is scarce. From its 2019 review of prelicensure curricula, the task force reported these findings: “In a review of 10 Canadian Universities across seven provinces, involving the health science faculties of medicine, nursing, dentistry, pharmacy, physical therapy, occupational therapy, and veterinary medicine, 68% of programs were unable to specify any designated hours for pain education and veterinary students were shown to receive 2 to 5 times more pain education than that of health science students.”28 This despite the statistics showing that, prior to the emergence of post-Covid condition, known more colloquially as long Covid, one in four Canadians suffered from chronic pain. Prospects are bleak for these new casualties of the pandemic, whose symptom lists keep growing and who frequently get compared to sufferers of myalgic encephalomyelitis/chronic fatigue syndrome as well as fibromyalgia.29 One physician I began following on Twitter last year caught my eye with this tweet: “Many out there are about to discover how marginalized those with fibromyalgia and chronic fatigue are. Long covid will be a significant medical and social issue that will likely be largely and purposely ignored. Living with covid may not be the life we expected.”30 To what extent do those of us weathering our chronic conditions either abandon hope or pursue endless dead ends because of the lack of will by a system or systems to organize around the best possible outcome for patients? As Boyer observes, “The system of medicine is, for the sick, a visible scene of action, but beyond it and behind it and beneath it are all the other systems, family race work culture gender money education, and beyond

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those is a system that appears to include all other systems, the system so total and overwhelming that we often mistake it for the world.”31 All these years spent in countless treatment rooms have consisted of, more or less, crime scene investigations: my body a site for something or some things gone wrong. There are clues to track down and leads to follow up, but after more than two decades I am essentially a cold case file. Memories fade and evidence gets misplaced; I have fewer resources to spend on the hunt. The expenditure of time, and of money, that has flowed through my hands has amounted to a compulsive repetition of hope and hopes dashed, of waves crashing against a lighthouse. I am tired. And still, something in me insists that this body I inhabit doesn’t have to feel this way. The temporary Miracle of Victoria showed me this. No matter how deflated I am after leaving a clinician, there is always a moment when the current shifts and the cycle recommences. I may enter a new office reluctantly, cynically, and with the bad attitude conventionally assigned to teenagers, but still: I enter. Boyer again: “The exhausted rise each day, or at least most of them do. That they rise most days is testament to the distance between how a person feels and what they do.”32 I imagine creating a different kind of distance from myself, the kind that doesn’t require me to detach in order to continue. I imagine deleting all my clinicians’ phone numbers and just subscribing to a mailing list for the cure. I imagine getting on with things. I’ll grow new tree rings that tell different stories, stories of magnolias blooming next to strip clubs in Windsor and of making the neighbourhood schnauzers bark, of how the ants come inside every May, and how the Detroit River still shimmers, but now it’s not only because of chemicals. I’ll have stories about conversations with friends that do include symptom updates, but only those marking the entirely prosaic experience called “aging,” and I’ll have stories about plans for the apocalypse, the persistence of woodpeckers, and how a transplanted prairie girl still dreams of sky that goes on forever.

Postscript

Of Spirits and Floods z

Chronic pain is an experience of haunting, and the ghosts are nervous. By contrast, the spirits of injuries that heal rest quietly in their coffins, waking only under specific conditions, like when the weather changes. In the early 2000s I strained my knee but was able to rehab it back to nearly perfect function. My knee phantom calls out occasionally in the wintertime, or when I’m walking downstairs, and goes silent again once I’ve shaken off the stiffness. This is a ghost that knows where it came from and is content, for the most part, to slumber in place. For other conditions, the ones that are chronically enigmatic, the phantoms are restless; they have no resting spot. I once had a Czech massage therapist who speculated that I had a trickster in my body. She named him Plivnik, after an impish character in Czech folklore, and she transformed massage into a hunt: find and eliminate Plivnik. Since Plivnik moved around – some days in the hip, some days in the shoulder, often in the feet – the therapist was both tracker and hunter. It’s not so far from early thinking on hysteria, that movable condition running up to the throat and down to the womb. Plivnik: my prey; my own imp of the perverse.1 I enjoyed the detection process, but not the hunt. She began with “muscle testing,” a practice whereby she would fling my limbs around, ask me to resist against pressure, and each time I failed, gleefully announce, “Nobody home!” I was a house, vacant and without power. Once the therapist located Plivnik, the hunt began in earnest and enjoyment morphed to torment: an elbow grinding into my hip elicits agony in me, not some detached being. If therapeutic pain leads to healing – as it can in situations of injury – the

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agony is worth enduring. In my case, devilish Plivnik could not be captured and subdued; he was feral and nomadic. Not so very long ago, my ongoing and inexplicable pains would have been met with skepticism and derision from physicians and friends alike. This is due to the pain model that dominated Western understanding up until the 1960s. Referred to as specificity theory, this model describes ordinary neural processes for encoding noxious stimuli. Descartes is credited with formulating the beginnings of this concept. Believing the brain to be a “passive recipient”2 of signals sent from an injured part of the body, Descartes theorizes that pain occurs “just as when you pull on one end of a cord you cause a bell hanging at the other end to ring at the same time.”3 As a model of communication, it is causal, linear, and rational: “When we are hurt, our pain nerves send a one way signal up to the brain, and the intensity of the pain is proportional to the seriousness of our injury.”4 Specificity theory became the standard model of pain taught in US and Canadian medical schools and thus the dominant paradigm through which to understand any pain experience.5 In the absence of damage to the tissues or the presence of disease, persistent pain should be impossible and therefore only understandable as irrational, hysterical, or fraudulent. Such pain patients belong in psychological treatment, not under medical care.6 The tide has turned. Over the course of the twentieth century, a more complex approach to understanding and treating pain developed, particularly aided by the study of soldiers during both world wars. The introduction of gate-control theory in 1965 represented a breakthrough in pain research. Melzack and Wall, the authors of gate-control theory, argued that the sensation of pain derives from “patterns of impulses, a sort of pain matrix.”7 Far from passive, the brain and spinal cord are now understood as gatekeepers actively controlling our perception of pain. The body is a power grid; damage to the grid can light up the system, but the system can also flare without any acute threat.8 In 2016, the International Association for the Study of Pain introduced a new term into the pain lexicon. Building on research over the past three decades, researchers described nociplastic pain, as opposed to nociception or neuropathic, as “pain arising from the altered function of pain-related sensory pathways in the periphery and cns [central nervous system], causing increased sensitivity.”9 Also referred to as neuroplastic pain or central

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sensitization, this model tells me I am stuck in a loop, that my nervous system is spitting out danger signals repeatedly, compulsively, for no good reason, and that my pain maps are colonizing ever larger swathes of territory.10 It’s nervous system as infernal machine: “The cns can change, distort or amplify pain, increasing its degree, duration, and spatial extent in a manner that no longer directly reflects the specific qualities of peripheral noxious stimuli, but rather the particular functional states of circuits in the cns.”11 Fibromyalgia is now categorized as nociplastic, and imaging technologies have illuminated changes in the brain “originally thought to represent atrophy, [but] now believed to be indicative of neuroplasticity.”12 My circuits have been rewiring themselves, flooding the system with evermore connections to keep the lights on. This research on sensitive nervous systems is both life-changing and not: I have answers, unavailable thirty years ago, that describe the mechanisms behind my pain. But a definitive cure remains out of grasp. Physician and writer Norman Doidge has been documenting fascinating case studies of neuroplasticity in which patients have found miraculous relief through neural retraining exercises. The now-famous mirror-box protocol for phantom limb pain has opened the door to other forms of neural remapping, and this seems genuinely promising. In his latest book, Doidge even recommends a retraining program available for purchase from the Neuroplastix group.13 It’s only US$48 and takes six weeks, but as I describe in “The Waves,” I’ve been down this road before. For now, I’m waiting. An earlier version of me would have been gratified to know that my condition isn’t psychologically based, but that Karen still believed in dualism even though her feminist theory training told her otherwise. This Karen has read enough medical research to understand that the distinction between physical, or organic, and psychological is specious. In the meantime, I search for ways to translate the medical language into how this all feels. Thinking about neurones working overtime and brains going haywire, I remember Emily Dickinson. Dickinson wrote about brains, as well as “veins, arteries … nerves, lungs, cells, muscle, and bone,” and she was well versed in anatomical science of the day.14 More than twenty of her poems reference the brain and as Barbara Baumgartner writes, Dickinson’s brain was not a synonym for the mind as it was for most other poets of the time; it was pro-

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foundly material.15 When I think about the emergence of nociplasticity, this is the poem that fires up my circuits: The Brain, within it’s Groove Runs evenly – and true – But let a Splinter swerve – ’Twere easier for You – To put a Current back – When Floods have slit the Hills – And scooped a Turnpike for Themselves – And trodden out the Mills –16 Here, the entire brain advances through the system like a train in its tracks. I picture a pink squishy wormy mass rolling like a bowling ball down its gutter. The image is ambivalent: moving smoothly without friction can feel like a gold medal–winning luge run, or it can describe being stuck in a rut. All it takes is something small, a splinter to throw things off course and upend the entire structure. We experience this upending both imaginatively and through language as Dickinson switches the metaphor from tracks and splinters to currents and flooding. Water overflows its banks, engulfing the land and altering its contours for good. There is no putting the current back or undoing the damage. Dickinson scholars suggest the poem describes how an idea can spark a paradigm shift and destabilize some dominant mode of thought, or perhaps it describes the creative process itself.17 For me, the splinter is the enigma of pain that does not fit within the grooves of conventional medicine, forcing researchers to recalibrate. At another level, the poem elucidates how chronic pain develops. One tiny splinter, a hip injury that doesn’t heal, can lead to a flooding of electrical impulses overwhelming the brain and remapping the entire territory. I think once more of Betty Goodwin, this time of Red Sea, a work from her Swimmer series. Two figures are suspended within a washed out, watery environment, one ascending, the other descending. The figure on the left has red lines running up the body, as though Goodwin has rendered the

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6.1 Betty Roodish Goodwin, Red Sea, 1984

figure transparent, allowing us to peer inside at an activated nervous system or blood pumping through arteries. From the knee down, the lines reveal themselves to be part of the figure’s outline, perhaps an earlier location for the legs as Goodwin was working up the image. Making visible traces was a significant part of her process: “Nothing ever comes for me on the first lines or effort. It is the erasing that is as much a part of the work as the pencil or oil stick.”18 At the figure’s mid-back, these lines form a kind of wedge

Postscript: Of Spirits and Floods

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shape. Goodwin began experimenting with the wedge around this time to evoke a sense of loss and fragmentation.19 As this figure rises, we remain unsure whether they will crest the surface and find air. The descending figure occupies the centre of the image. With a line running vertically down the length of the image, this figure is split in two. This time the wedge is white and external to the body, extending from the chest down to the chin. The figures are touching, but their relation is ambiguous. Goodwin explains, “The series came slowly. It has to do with the fact that water certainly is a giver of life, but it’s also a taker of life. In many of ‘The Swimmers’ there’s struggle between moving out or being pulled down.”20 The colours she uses for water are literally washed out. Reds and greens fading to dissolve, suggesting the passage of time and how things wear away. Chronic pain has this fading effect: the world seems distant and blurred around the edges, hazier. Red Sea is made on vellum, or parchment, a paper made traditionally from animal skin. Skin is a body’s boundary between organism and world, but it is a permeable boundary and as such a site of passage. The title of this piece echoes this notion of passage: the Red Sea is an inlet between the Mediterranean and the Indian oceans. It connects to the Suez Canal – the busiest thoroughfare for global commerce – and divides Africa from Asia. Biblically, the sea is famous for splitting apart. Under Moses’s direction, the waters divide, allowing the Israelites to pass through during their escape from Egypt on their quest for Canaan. As soon as the Israelites clear the far shore, the waters crash back to become a single body and drown the pursuing Egyptians. From a contemporary, late-capitalist geopolitical perspective to an ancient myth, the Red Sea is freighted with meaning as a region of the in-between. I don’t know whether the two figures represent two distinct beings, or whether they represent alternate fates of a single being. The nervy figure pulses up to the surface while the bisected body reaches for the bottom. Ultimately, it’s unknowable, just like Dickinson’s flood is not the end of the story. Closing with a dash instead of a period, Dickinson leaves the reader in a corresponding state of suspension. We do not yet know how the landscape will look once the waters recede. We do not know if the rising figure will reach oxygen, if the descending figure will touch down and use the ground to kick off for the surface, or just root down in the watery depths.

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Still, they are swimmers: they are actively “seeking a place to breathe, rising, trying to move out.”21 I have swum all my life. My parents enrolled me in competitive swimming as a child and though I quit racing decades ago, I have maintained the practice. Except for the last few years when vertigo and then Covid made pools unthinkable, swimming has been a sanctuary. I swam after my initial fibromyalgia diagnosis. I swam through graduate school and into employment. I have written essays, prepared lectures, had imaginary conversations, wept, and felt renewal – all underwater. In a pool, I swim in loops and count laps. My only destination – my land of Canaan – is the point of exhaustion, that blissful state of depletion I feel after pulling off my swim cap, dunking my head, and hanging off the edge before returning to land. My senses are attuned to the reverberations of sound bouncing around the pool deck; the thick smell of chlorine mixed with humidity; the anticipation of goosebumps on my walk to a post-swim shower; and that sepulchral moment when the sun sets early in winter, and I’m watching it through a window wearing only a bathing suit and goggles. I remember moving through water and think now of nervous systems. I imagine myself as an action potential travelling up to the cns. Flip turns are like the first burst of chemicals entering the neurone, propelling me forward, while the butterfly, with its glorious expression of arising, makes pain visible while concealing all the transmission work going on below the surface. Breaststroke is a form of neural relay: shoulders and legs echoing each other in an endless cycle of call and response that mirrors dendrites releasing potentials into synapses, only to be taken up by the next dendrite in line. Backstroke is my system overload: I flail, take on water, and sink. Every time. From the place of sinking, I kick off from the bottom and restart with freestyle – my piston stroke. It sets me into a groove like Dickinson’s brain. In freestyle, I find a zone of autofocus in which the world is reduced to the sound of an inhale and the bubbles of an exhale; the air on each cheek as I rotate my neck to breathe; the feel of gliding through liquid resistance. Goodwin’s Red Sea swimmers exist in a nebulous environment with no land in sight: they have no destination beyond surfacing. Chronic pain is just such an environment: amorphous and interminable. Progress is less about finding a cure for all time, and more about the balance of good days versus bad days, and of kicking off from the bottom with each sinking. Sinking is part of it, but so are the flip turns and the freestyle.

Acknowledgments z

This book only exists thanks to the support of family and friends. First and foremost, I’d like to thank Patrick Fowlow for all the years of unwavering encouragement, patience, joy, talking through ideas, and reading every word (including the ones that didn’t make it). I would not have begun this project without you, let alone have seen its completion. Lindsey Freeman, the most amazing reading and writing friend I can imagine. How do I thank you enough for the ongoing, thoughtful, and perceptive comments? You always find the things! Catherine Heard, for your enthusiasm over the final year, for talking about art and pain with me, and for designing this gem of a table of contents and also the book cover. It’s perfect. Yoke-Sum Wong, brilliant friend sharing in daily dog observations and unwavering capybara admiration. Someday we will find our yuzu bath. Lee Rodney, for finnan haddie and boosts of confidence when needed. Ann Sprague, for all the hours of conversation that helped give shape to feeling. Talysha Bujold-Abu, who read some early bits and some rough bits and understood what I was doing. Rashmi Chikarmane, who gave me the term “diagnostic odyssey,” acted as my best science sounding board, and listened to my (occasional) kvetching. Everyone thanks their editor, but in my case, Jonathan Crago has truly been the Editor of my Dreams. I don’t know how you do it, but I’m so thankful for your incisive brain and your willingness to help me through the tough parts. I can’t imagine working with anyone else. As always, working with McGill-Queen’s University Press has been a fabulous experience. I’m especially grateful to Kathleen Fraser for her

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quick answers to all sorts of questions. Huge thanks also go to Ellie Barton, who copyedited this story with such care and attention. The book is better for it. The chapter Foot Notes was originally published as “Foot Notes: Retracing the Steps towards Diagnosis,” The Sociological Review 70, no. 4 (2022), 744–61, doi:10.1177/00380261221106519. The artwork in the table of contents is On Being Ill (v.2), 2022 © Catherine Heard (licensed by Copyright Visual Arts-carcc, 2022).

Illustrations z

1.1 Betty Roodish Goodwin, Untitled, 1963. Monoprint, printed in blue, 45.6 × 61 cm. Art Gallery of Ontario. Gift of Betty and Martin Goodwin, 1999. 99/695. © Gaétan Charbonneau / Estate of Betty Goodwin 11 1.2 Melzack Pain Questionnaire. From Fernando Kurita Varoli and Vinícius Pedrazzi. “Adapted Version of the McGill Pain Questionnaire to Brazilian Portuguese.” Brazilian Dental Journal 17, no. 4 (2006): 328–35. https://doi.org/10.1590/s0103-64402006000400012 18 1.3 Melzack Pain Questionnaire, completed by author 19 1.4 ms 49, folio 35r, depicting the Wound Man, ca. 1420–30, southern Germany. Paint and ink on parchment. 40 × 30 cm. Wellcome Apocalypse. Wellcome Collection 21 2.1 Figures representing fibromyalgia tender points. Image adapted from The Three Graces by Frederick Wolfe and Peggy Whitney. “Tender Points,” The Fibromyalgia Perplex (blog), 28 January 2013. https://www. fmperplex.com/2013/01/28/tender-points/#comment-6 34 2.2 Jean-Baptiste Regnault. The Three Graces. Oil on canvas. 204 × 153.5 cm. Musée de Louvre, Paris, France 35 2.3 Overlap between fibromyalgia tender points and Charcot’s hysterical zones. From Hélio A.G. Teive, Francisco M.B. Germiniani, and Renato Puppi Munhoz. “Overlap between Fibromyalgia Tender Points and Charcot’s Hysterical Zones: A Historical Curiosity.” Neurology 84, no. 20 (19 May 2015): 2096–7. https://doi.org/10.1212/WNL.000000 0000001592 39

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3.1 Temporomandibular disorder vector illustration. VectorMine/ Shutterstock.com 52 3.2 Lisa Nilsson, Head and Torso (detail), 2010. Mulberry paper. 9 × 13 × 1 inches. Courtesy of the Artist and Pavel Zoubok Fine Art, New York. Photo by John Polak 56 4.1 Léthargie. Iconographie photographique de la Salpêtrière: service de M. Charcot / par Bourneville et P. Regnard. Wellcome Collection 65 6.1 Betty Roodish Goodwin, Red Sea, 1984. Oil pastel, dry pastel, oil and charcoal on velum paper, 304.8 × 213.3 cm. Gift of Charles S.N. Parent. Photo: Richard Max Tremblay. Collection Musée d’art contemporain de Montréal. © Gaétan Charbonneau / Estate of Betty Goodwin 102

Notes z

preface 1 Literary scholar Sarah Pett notes that the essay appeared in “various forms” – an observation that becomes important in relation to the erasures and wilful disregarding of significant portions of this text. Pett, “Rash Reading,” 26. 2 Ibid., 34. 3 Woolf, “On Being Ill,” 32. 4 Ibid. 5 Scarry, The Body in Pain, 4. 6 Hardcastle, The Myth of Pain, 145. 7 Rapp Black, Frida Kahlo, 67. 8 Thernstrom, The Pain Chronicles, 148. 9 Mantel, Ink in the Blood, Kindle ed., n.p. 10 Ibid. 11 See Derrida’s “Signature Event Context” in Margins of Philosophy. 12 Pett, “Rash Reading,” 28. 13 Nietzsche clearly doesn’t fall under the English literature tradition, but he does write about gastric distress and all manner of bodily troubles in his letters. 14 See Burney, “Letter.” 15 Pett, “Rash Reading,” 35. 16 Ibid., 36. 17 Woolf, “On Being Ill,” 34. 18 Morris, The Culture of Pain, 72–3. 19 Pett, “Rash Reading,” 44–5. 20 Sontag has written definitive analyses of the metaphorization of illness. See Illness as Metaphor and Aids and Its Metaphors.

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21 Woolf, “On Being Ill,” 33. 22 Frank, At the Will of the Body, 134 and 89. 23 For more on regions like cancer alley in the United States, see Larty and Laughland, “Almost Every Household”; for one report on Covid infection among marginalized communities: Kantamneni, “Impact of the covid-19 Pandemic”; and a recent study of cancer among First Nations communities in Ontario: Cancer Care Ontario, “Cancer in First Nations People.” 24 Stern, Diary of a Detour, 340. 25 Berlant, Cruel Optimism. 26 Ibid., 8–10. 27 Frank, At the Will of the Body, 51. 28 A recent newspaper article provides a synopsis of this history, which includes forced sterilization, forced starvation, and a refusal by the medical profession to address the spread of tuberculosis in residential schools. Shaheen-Hussain, “A History of Canada’s Medical Colonialism.” 29 Sontag, Illness as Metaphor, 93. 30 Oxford English Dictionary, s.v. “otherwise, n., adv., and adj,” accessed 5 September 2022, https://www.oed.com. 31 Kafer, “After Crip, Crip Afters,” 418. 32 Activist Eli Clare occasionally interrupts his ranting (his word) against “the ideology of cure” to acknowledge that his “anti-cure politics has all too often shut out chronically ill people.” See Brilliant Imperfection, 61. Similarly, disability scholar Alison Kafer writes, “People with chronic illness, pain, and fatigue have been among the most critical of this aspect of the social model, rightly noting that social and structural changes will do little to make one’s joints stop aching or to alleviate back pain. Nor will changes in architecture and attitude heal diabetes or cancer or fatigue.” Feminist, Queer, Crip, 7. 33 In Beyond Words: Illness and the Limits of Expression, Kathlyn Conway similarly suggests interruption as method in “On Being Ill.” Opening this section of her book with reference to that famous quotation (which she does not examine), Conway proceeds to suggest that “Woolf actually captures the way in which the demands of the body are insistent” (114). 34 Woolf, “On Being Ill,” 43. 35 Ibid., 34. 36 Ibid., 39. 37 Ibid., 34. 38 oed: a rare derivative of “otherwise” meaning “the condition or quality of being otherwise; difference.”

Notes to pages 3–12

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te l l i n g sto r i e s , chron i c a l ly 1 Kristy, “Machete-Wielding Senior.” 2 Ibid. 3 This phrase originates from the Christian New Testament (1 Corinthians 13:12), but my favourite occurrences are in the writing of Angela Carter, literary-allusionist extraordinaire. 4 Or, in the phrasing of another antiperspirant advertising campaign of the era – this one for Dry Idea – “Never Let Them See You Sweat.” 5 Stern, Diary of a Detour, 340. 6 Stern writes, “How to shift or at least shake up the idea of living with a chronic illness, to think about living itself as a chronic condition, not a fortress armed against death?” Ibid., 5. The title for this book, Chronic Conditions, has been in my head since 2015, before Stern’s Diary was published, but her writing has been so important for my own thinking that I want to acknowledge her use of the phrase here. 7 Raja et al., “Pain Definition of Pain.” 8 World Health Organization, International Classification of Diseases. 9 Woolf notes that general acceptance of the concept of central sensitization was initially slow, “particularly by physicians who believed that pain in the absence of pathology was simply due to individuals seeking work or insurance-related compensation, opioid drug seekers, and patients with psychiatric disturbances; i.e., malingerers, liars and hysterics.” “On Being Ill,” S4. 10 Gordon, Ghostly Matters, 4. 11 David Morris’s book, The Culture of Pain, traces how the “meaning” of pain shifts across time and within various cultural traditions. 12 Foucault’s essay, “Nietzsche Genealogy History,” was a pivotal part of this education. 13 Panofsky, Studies in Iconology, 73. 14 Ibid., 73–4. 15 Ibid., 74. My thanks to Stephen Pender for the Latin translation, email correspondence. 16 Ibid., 81. Taking us from the early modern period through the Baroque period, paying some scant attention to non-Western sources, Panofsky paints a complex and layered picture of this figure as a geographically and temporally hybrid trope that shifts and changes over time. In the section I am quoting here, Panofsky details the significance of artist illustrations of Petrarch’s Trionfi in the emergence of these conventions. 17 Michaels, Racine, and Ninacs, The Art of Betty Goodwin, 18. 18 The most famous of monoprints, at least among scholars of critical theory, is Paul Klee’s Angelus Novus (1920), regarded as an ancestor of Goodwin’s

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Untitled. As the editors note in the catalogue for Goodwin’s exhibition at the Art Gallery of Ontario, “The freedom of the marks, reminiscent of the soft touch of then-contemporary artists such as Mark Tobey or Wols or, further back, Paul Klee, suggests the freedom of the unconscious” (18). Benjamin’s discussion of the “angel of history,” represented by Klee’s print, has been cited and re-cited countless times and for good reason – it remains one of the most compelling descriptions of historical time and the nature of progress. See Benjamin, “On the Concept of History,” 392. See conversation between Snoop Dogg and Seth Rogen, “Cross Joints & Chronic.” Ibid. See Dictionary.com, “The Chronic,” accessed 22 June 2021, https://www. dictionary.com/e/slang/the-chronic/. This was one of Derrida’s observations in his essay “Plato’s Pharmacy.” Russell, Swamplandia!, 395. Ibid. I have written elsewhere about falling, its indeterminacy and its ongoingness. See “Tumbling Woman,” a meditation on Eric Fischl’s 9/11 memorial sculpture, and “Falling Man,” an exploration of the search for the identity of one man who jumped from the North Tower, both in Seeing Ghosts. Russell, Swamplandia!, 397. There is tremendous variation in people’s experiences with chronic pain. Low back pain, for instance, represents significant and debilitating pain preventing people from living and working with any degree of comfort. It can profoundly impact mobility. This is not my story. See, for example, Sander Gilman’s “Black Bodies, White Bodies.” Melzack, “McGill Pain Questionnaire,” 277. Ibid., 278. Main, “Pain Assessment in Context,” 1388. Melzack, “McGill Pain Questionnaire,” 282. Hartnell, “Wording the Wound Man.” Hartnell, “The Many Lives of the Medieval Wound Man.” Hartnell, “Wording the Wound Man”: “It is in this context, where illustrations performed a careful tension between image and text, and between the diagrammatic and naturalistic qualities of the body, that the Wound Man emerged.” Buboes are swollen and inflamed lymph nodes. This could be a sign of plague, which was caused by flea bites transmitting the Yersinia pestis bacteria into the human bloodstream.

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37 See Hartnell, “Wording the Wound Man,” for a fulsome exploration of these figures. 38 As Hartnell describes, “Each catchphrase links a particular debilitating representation to a specific paragraph of a short treatise that preceded the Wound Man on the book’s previous two folios.” Ibid. 39 He reminds me of Mr Slim Goodbody, a more contemporary example and one that certainly reflects the late twentieth century’s equation of a slender body with health. First appearing on television to children in 1976, Slim Goodbody wore unitards painted with anatomically accurate tissues, organs, and organ systems. His character taught “young viewers … good hygiene, nutrition, and healthy exercise.” Slim Goodbody’s function is different from the Wound Man’s, but the mapping to scale of the inside on the outside seems related in my mind. See Nesbitt, “Maine Actor Reflects on Time as Mr. Slim Goodbody.” 40 Hartnell, “Wording the Wound Man.” fo ot notes 1 Titles are my nemesis. I must acknowledge that numerous suggestions for titles of this piece were made by Patrick, my first and most important reader. I chose none of his suggestions, but wish to note them here, for posterity. First, and most compelling: heel turn (a wrestling term, he explained, designating when a good character turns evil); anklesaurus; footbedridden; and another pun with the word sole but I’ve since forgotten the exact invention. This note serves as a reminder to write things down as soon as they happen. 2 In Rousseau’s Reveries of the Solitary Walker, the body is explicitly disavowed: “My body is nothing now but a trouble, an obstacle, and I disengage myself from it before-hand as much as I can” (153). Nevertheless, his body finds a way to intrude on these walks. From the description of being bowled over by a Great Dane in the second walk, to an account in the fourth walk of how his fingers were crushed in an accident, Rousseau’s body materializes, but only to serve Rousseau’s narrative purposes: the illumination of his moral and ethical philosophy. Werner Herzog references physical pain several times during a walking pilgrimage he made from Munich to Paris in 1974. The references are brief, and the pain never stops him from pushing forward. Herzog, Of Walking in Ice. It reads as a classic Herzogian Man Against Nature tale, and Man wins. The body is either something to conquer, to disavow, or to use as an object lesson. 3 The gunsmith encounter takes place at the start of the Méséglise Way,

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while the water lily, which reminds Proust’s narrator of neurasthenics, emerges during a walk along the Guermantes Way. Proust, The Way by Swann, 136 and 169. In roughly sixty pages of description of these walks, here is one of the few references to the narrator’s physical being: “I was dragging my feet, I was ready to drop with sleep, the fragrance of the lindens that perfumed the air seemed to me a reward that one could win only at the cost of the greatest fatigue and that was not worth the trouble.” Ibid., 116. By contrast, mental (as opposed to physical) anguish does pair with walking. Of thousands of examples, I think of the doctor from Djuna Barnes’s Nightwood, watching a destroyed Nora walk the streets of Paris, hunting for Robin. He observes, “There goes the dismantled – Love has fallen off her wall” (60). Solnit, Wanderlust. To blame. I notice how the body becomes a crime scene through this language, how practitioners look for clues to find culprits; how the parts responsible are guilty of misbehaving and need disciplined correction over time. Thanks to Lindsey Freeman for drawing my attention to this. Foucault, of course, famously traces the interconnections of medicalization and disciplinary practices in Discipline and Punish (1995) and The Birth of the Clinic (2003). Freud, Totem and Taboo, 103. See Carter, “Lady of the House of Love,” 97. Stewart, “Atmospheric Attunements,” 446. Berlant, Cruel Optimism, 5. Mayo Clinic, “Fibromyalgia: Symptoms and Causes.” Inanici and Yunus, “History of Fibromyalgia,” 369. Wolfe et al., “The American College of Rheumatology.” Cartwright, “Graces.” Mayo Clinic, “Mayo Clinic Q and A.” In histories of fibromyalgia, both neurasthenia and hysteria are identified as likely candidates for a contemporary fms diagnosis. George Beard, the famous physician of neurasthenia, identifies the symptoms of this illness as widespread pain, fatigue, mental disturbance, and digestive issues. He attributes the cause to the stresses of modern life. See Inanici and Yunus, “History of Fibromyalgia.” Charcot describes these zones as “more or less circumscribed regions on the body on which pressure or simple rubbing produces quite rapidly the phenomenon of the aura, and which, if you persist, may be followed by the hysterical attack. These points or patches may in addition be the site of

Notes to pages 38–40

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permanent hypersensibility and before an attack, of spontaneous painful irritation.” See Charcot, “De l’hystérie chez les jeunes garçons,” in Clinical Lectures, vol. 3, lecture 21, 331. Following Charcot, Freud and Breuer will link these zones with erotogenic zones in Studies on Hysteria. In Freud’s account of Fraulein Elisabeth von R’s hysteria, he writes, “If one pressed or pinched the hyperalgesic skin and muscles of her legs, her face assumed a peculiar expression, which was one of pleasure rather than pain … [this reaction] could only be reconciled with the view that her disorder was hysterical, and that the stimulation had touched upon a hysterogenical zone” (137). Teive, Germiniani, and Munhoz, “Overlap between Fibromyalgia Tender Points,” 2096. Charcot refers to “ovarialgia” in his Clinical Lectures. In his 7 February 1888 lesson from the Tuesday Lessons, Charcot describes how ovarian pressure can distinguish between an epileptic and a hysteric attack: “In no way is epilepsy influenced by the ovaries, whereas in this [hystero-epilepsy case] the opposite proves true. You have seen that the attack ceases with pressure applied to the ovarian region.” Charcot, the Clinician, 9. Helen King’s important history suggests that “hysteria” as a disease category was not used in the Hippocratic writings at all. The Hippocratic corpus does refer to “a real and organic condition: the movement of the womb (hystera) to other parts of the body,” but it is the “nineteenth-century translator of [this] corpus” that diagnoses hysteria among the ancients, and not the ancients themselves. See King, “Once upon a Text,” 7–8. In later antiquity, there was a reference to hysterikē pnix, “a condition thought to originate in the womb and to cause symptoms of suffocation, tooth grinding, loss of voice, and so on.” Ibid., 15. Importantly, King shows us that for the ancients, womb migration was an organic event – not at all the psychosomatic or psychogenic condition that nineteenth-century hysteria came to indicate. See also Micale, “Hysteria and Its Historiography” (September 1989), 230. King, “Once upon a Text,” 12–13. Ibid., 19. Ibid., 64. Ibid., 8. There are a few exceptions. In the seventeenth century, Charles Lepois, Thomas Sydenham, and Thomas Willis all acknowledged that men could suffer from hysteria. See Micale, “Charcot and the Idea of Hysteria,” 366. As Micale notes, “Now, aetiologically, Charcot rejected [the gynecological theory of hysteria’s origins]: however, in the realm of symptomatology, and

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in this new, theoretically updated ovarian version, he accepted a gynaecological view of hysteria.” See Micale, “Charcot and the Idea of Hysteria,” 363–411, 403. See Bourneville and Regnard, Iconographie Photographique de la Salpêtrière. Another physician at the Salpêtrière, Gilles de la Tourette, named these points “les zones pseudo-ovariennes.” See Micale, “Charcot and the Idea of Hysteria,” 403. Again, Micale’s introduction of socio-medical context is crucial here, for current practices by surgeons and gynecologists to remove ovaries, perform clitoridectomies, and other brutal gynecological procedures horrified Charcot. His insistence on neurological etiology can be viewed as one attempt to challenge these violent practices. Following Charcot’s death, male hysteria was in large part occluded or transmuted into other labels, like shell shock. In Micale’s book-length history of male hysteria, spanning the seventeenth to the early twentieth centuries, the almost total negation of male hysteria was accomplished by a medical establishment intent on preserving its sense of the male gender as wholly rational: “The medical history of male hysteria … is the story of repeated and ritualized silences. As a formal discourse, it is marked by the usual continuities and ruptures; but, in striking parallel pattern, it is also troubled by countless omissions, resistances, and ambivalences.” Micale, Hysterical Men, 281–2. The “shell shock” of World War I was another name for nervous exhaustion. During World War II and after, “a high occurrence of fibrositis among soldiers drew attention,” and although many were dismissed as “psychogenic rheumatism,” medical historians today view these cases as potential fms diagnoses. See Inanici and Yunus, “History of Fibromyalgia,” 372. Vietnam veterans, Gulf War soldiers and, of course, soldiers returning from Afghanistan and Iraq have described widespread pain where no obvious injury exists. I have read interpretations that the Old Testament/Hebrew Bible’s Job may have had fibromyalgia. See Stetka, “Fibromyalgia.” But the insistent representation of female bodies as hysteric or fibro-ridden effectively occludes male experiences with persistent and mysterious chronic pains. Where might we be if a primarily male medical establishment had been capable of taking its own gender as an object of study? Micale, “Charcot and the Idea of Hysteria,” 406. He proceeds to observe, “Both of these beliefs, it seems to me, reflect the enduring belief that au fond hysteria remained a female affliction.” Ibid., 406. Given this context, Charcot’s linkage of tender points to the ovaries, and particularly his assertion that exerting pressure on these points would halt

Notes to pages 40–8

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an attack, follows in a long line of men worried about excitable wombs. Even after physicians rejected the theory that wombs could move, femaleness represented the strongest indicator of being diagnosed with hysteria. In the seventeenth and eighteenth centuries, for instance, the wandering womb was replaced with women’s essentially weaker nervous systems. See G.S. Rousseau, “A Strange Pathology.” Dash, “Mystery of the Five Wounds.” Ibid. Ibid. G.S. Rousseau tells us that “in the Renaissance and again in the nineteenth century, these somatic dysfunctions were often called ‘stigmata’ by physicians searching for the ‘stigma’ of hysteria.” “A Strange Pathology,” 111–12. Most stigmatics we hear about are male. In a curious inversion, however, women stigmatics have outnumbered men by a factor of 7:1. See Dash, “Mystery of the Five Wounds.” Micale, Approaching Hysteria, 20. Ibid. This quotation refers explicitly to the period from the third to the thirteenth centuries. See also G.S. Rousseau’s extensive history of hysteria from the Renaissance through the Enlightenment period. Discussion of the “demonological” model and its relevance to hysteria in this period demonstrates the protean (as Rousseau repeatedly asserts) nature of this mysterious ailment. Charcot insisted on the existence of male hysteria and wrote extensively about men in his case studies. And yet, his photographic documentation of hysteria consisted entirely of women. See Iconographie Photographique de la Salpêtrière. My point here is simply to reassert how the figure of the hysteric, and the visual documentation of this illness, came packaged as distinctively female. See both King and G.S. Rousseau in Gilman, Hysteria beyond Freud. jaws Carter, Nights at the Circus, 52. Ibid., 71. Ibid., 1. Kristeva, Powers of Horror, 2. Ibid., 4. Mayo Clinic, “Chronic Stress Puts Your Health at Risk.” I am thinking very directly here of Lauren Berlant’s argument in Cruel Optimism. Carter, “The Company of Wolves.”

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9 List and Højland Jensen, “Temporomandibular Disorders,” 692. 10 A meta-analysis from 2018 confirms that “in the global prevalence of tmd … all studies have shown higher tmd prevalence for women. Depending on which diagnostic group studied, women are around twice as much at risk of developing tmd then men.” Bueno et al., “Gender Differences in Temporomandibular Disorders,” 724. On the co-occurrence of tmd with fibromyalgia see, for instance, National Academies of Sciences, Engineering, Health and Medicine Division, et al., Temporomandibular Disorders, 1. 11 Helen King, “Once Upon a Text,” 15. See “Foot Notes” for a more extensive exploration of hysteria. 12 Ibid., 15. 13 Ibid., 15. 14 Bueno et al., “Gender Differences in Temporomandibular Disorders,” 725. 15 “If all jaw muscles clenched with the same force, our teeth would exert a bite force that’s at least 40% greater than any of the other primates, save the gibbon.” Yong, “Human Jaws Are Surprisingly Strong and Efficient.” 16 Ray, “Checking the Chomp.” 17 See Saint Luke’s, “Understanding Jaw (Orthognathic) Anatomy.” 18 Jaw movement is comprised of both rotational and translational movements of the mandible. Occurring in three planes (horizontal, frontal, and sagittal), these movements occur “as a complex series of interrelated three-dimensional rotational and translational activities.” Pocket Dentistry, “Mechanics of Mandibular Movement.” I am not describing translation here, but suffice to say most jaw movements involve simultaneous rotation and translation. 19 Oxford English Dictionary, s.v. “temporal, adj. 1 and n. 1,” accessed 3 September 2022, https://www.oed.com. 20 Ibid. 21 Clenching during the daytime is referred to as “awake bruxism” in the medical literature and is “associated with psychosocial factors.” Commisso, Martinez-Reina, and Mayo, “A Study of the Temporomandibular Joint during Bruxism,” 116. 22 See, for example, Emshoff et al., “A Logistic Analysis Prediction Model”; and Commisso, Martinez-Reina, and Mayo, “A Study of the Temporomandibular Joint during Bruxism.” 23 See Barnes, “Learn How Paper Quilling Started.” spin cycles 1 In an interview with Claudia Dreifus, Morrison describes the difficulty of writing Beloved because the story she was recounting was so harrowing.

Notes to pages 58–63

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Not only did she have to submit to facing and feeling the horrors, but she also had to live with the story for several years before she could begin to write it: “I had never been so frightened. I could imagine slavery in an intellectual way, but to feel it viscerally was terrifying. I had to go inside. Like an actor does … When I wrote Beloved, I thought about it for three years. I started writing the manuscript after thinking about it, and getting to know the people and getting over the fear of entering that arena, and it took me three more years to write it.” See Denard, Toni Morrison: Conversations, 105–6. In an earlier interview with Eugene Redmond, Morrison recounts, “Beloved, from which I will read tonight, uses a story that nagged or haunted me as its code of departure.” Ibid., 30. Woolf writes, “It is perfectly true that she obsessed me, in spite of the fact that she died when I was thirteen, until I was forty-four. Then one day walking around Tavistock Square I made up, as I sometimes make up my books, To the Lighthouse; in a great, apparently involuntary, rush. One thing burst into another. Blowing bubbles out of a pipe gives the feeling of the rapid crowd of ideas and scenes which blew out of my mind, so that my lips seemed syllabling of their own accord as I walked. What blew the bubbles? Why then? I have no notion. But I wrote the book very quickly; and when it was written, I ceased to be obsessed by my mother. I no longer hear her voice; I do not see her.” Moments of Being, 81. As Siri Hustvedt writes, “Neuroscientists now know that when we retrieve a memory, we find not the original memory but, rather, the one we summoned to consciousness the last time we remembered it. In this process, memories mutate. They are not only kept, consolidated in memory, they are re-kept, reconsolidated.” The Shaking Woman, 108. First reference: “The Count is dedicated to the obliteration of memory. Memory, says the Count, is the main difference between men and the beasts …” Carter, Burning your Boats, 418. Later, the protagonist states, “Nevertheless, I have certain precious mnemonics. The hawk; a man without a mouth; and eyes without a face. As long as I retain them in my memory, even if I forget any kind of context for them, then I can keep back something of myself from the Count’s dissolving philosophy.” Ibid., 425. Ibid., 428. Ibid., 423–4. I am thinking here of Sara Ahmed’s discussion of the word in which she explains, “Orientations shape not only how we inhabit space, but how we apprehend this world of shared inhabitance, as well as ‘who’ or ‘what’ we direct our energy and attention toward.” Queer Phenomenology, 3. Ahmed

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is interested in exploring how our bodies take and make space, how we not only “find our way” but how we come to “feel at home.” Ibid., 7. For a brief history of J.M. Charcot’s work with hysterics at the Salpêtrière Hospital in Paris towards the end of the nineteenth century, see the chapter “Foot Notes.” For more extensive writing on hysteria and Charcot, see references in the bibliography for Mark Micale, Elaine Showalter, and Georges Didi-Huberman. Dessoir, “Hypnotism in France,” 543. Bourneville and Regnard, Iconographie Photographique de la Salpêtrière, vol. 3, 192, my translation. Original French: “On appuie sa tète sur le dos d’une chaise, ensuite on frictionne les muscles du dos, des cuisses et des jambes, et on place les pieds sur une deuxième chaise: le corps, rigide, reste dans cette situation (PL. XIV) pendant un temps assez long (on n’a jamais prolongé l’expérience plus de 4 ou 5 minutes); il est possible de mettre une charge de 40 kilogrammes sur le ventre sans faire fléchir le corps.” One particularly famous performer around the same time that Charcot began studying hypnosis and its therapeutic potentials was Carl Hansen, a Dane who travelled from Sweden to Russia, from France to Germany and beyond. He received publicity from the media, so much so that he also was known among the scientific community. There are accounts of Hansen performing exactly this human plank feat along with other now clichéd hypnotic suggestions. See Gauld, A History of Hypnotism, 303. Charcot, Charcot, the Clinician, 110. Note that this belief was not universally shared by physicians, and the question “would polarize French neurology in the coming years.” Ibid., 110. It is also important to state that Charcot would eventually change his mind and regret his work with hypnosis, not because it was an unscientific method, but because his influence had inspired so much interest in hypnosis that doctors were now focused more on public spectacle than on scientific investigation. Ibid., 111. For these crucial years of his practice at the Salpêtrière, however, hypnosis played a significant role in the visualization of hysteria. Ibid., 110. Ibid., 110. Entertainment extended to the Bal des Folles. Each year, there was a “Madwomen’s Ball,” during which members of the Paris elite were invited to meet the hysteric women. The hysterics were given money to sew their own costumes for the event, making it a full-fledged immersive performance. See Polansky, “Madwomen’s Ball.” Charcot had identified stages of the hysterical attack. These stages were experienced differently by different patients. Charcot describes those

Notes to pages 66–77

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patients experiencing “a prolonged stage of disordered movements” as akin to “demoniacal attack,” given the similarity of their convulsions to “those of hysterical possedées.” Gauld, A History of Hypnotism, 309. See Pichel, “The Backstage of Hysteria.” As Asti Hustvedt writes, “There are photographs of women in their beds, asleep and awake, seated in chairs and standing up, indoors and outdoors, in street clothes and in hospital gowns.” Medical Muses, 164. I have read conflicting accounts of where most of the photographs found in the three-volume Iconographie were made. Pichel writes that during these years, Regnard was a camera roaming the hallways for attacks to photograph (see “The Backstage of Hysteria”), while Asti Hustvedt contends exactly the opposite: that the “hysterics were brought to him in the fully equipped studio, with its bed, screens, lamps and darkroom.” Medical Muses, 178. Charcot famously introduced photography to the Salpêtrière, but he also drew upon painting, illustration, and sculpture to illustrate different phases of the hysterical attack. The visual culture of the Salpêtrière has been the focus of multiple studies, notably Georges Didi-Huberman’s Invention of Hysteria, Asti Hustvedt’s Medical Muses, and several articles by Beatriz Pichel. See, for example, Bernheimer and Kahane, In Dora’s Case; Showalter, The Female Malady; Wilson, Psychosomatic. My translation. Bourneville and Regnard, Iconographie Salpêtrière, vol. 3, 193. Hustvedt, Medical Muses, 198–9. Ibid., 195. Augustine’s remission spans from December 1878 to April 1880. We know that Charcot began serious research into hypnotism in 1878. See Gauld, A History of Hypnotism, 310. Volume 3 of the Iconographie, which covers the years 1879 through 1880, contains the section on hypnotism. The photograph of Augustine performing “stiff as a board” appears in this section, and the clinical notes documenting this event are dated 1880, although they were written sometime after the fact. It appears Augustine was hypnotized repeatedly during the year 1879 until she relapsed on 6 April 1880. See Bourneville and Regnard, vol. 3, 197. In Charcot’s own words, “contracture is always imminent with hysterics.” Didi-Huberman, Invention of Hysteria, 111. Bourneville and Regnard, Iconographie, vol. 3, 197–8. Shupert, “Vestibular Neuritis and Labyrinthitis,” 2. Ibid., 1. Neimanis and Loewen Walker, “Weathering,” 560.

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Stern, Diary of a Detour, 254. See, for example, Doidge, The Brain That Changes Itself. Shupert, “Vestibular Neuritis and Labyrinthitis,” 5. Woolf, Moments of Being, 133. the waves Water Science School, “The Water in You.” UKyOrtho, Strolling under the Skin. Ibid. Johns Hopkins Medicine, “Muscle Pain: It May Actually Be Your Fascia.” N2 Physical Therapy, “Fascia: The Mysterious Tissue.” Pope, “An Essay on Criticism,” 24. I think of anticapitalist forms of spending that Bataille describes in “The Notion of Expenditure” in which nonproductive expenditures like mourning and sacrifice find their value in absolute loss. Bataille was interested in how human activity under capitalism is assessed by the degree to which it contributes to the “conservation of life and continuation of individuals’ productive activity.” Visions of Excess, 118. For one example of how “management” of fibromyalgia can become a full-time occupation, see Lynch, More Than Tender Points: A Fibromyalgia Memoir. Harvey, Spaces of Hope, 106. Wu, McMahon, and Lu, “Ending the Diagnostic Odyssey.” The Lancet reports that “in one survey involving 900 patients in Europe and Latin America, it took an average of 35 months and interactions with 4.5 physicians before a diagnosis of fibromyalgia was made, with the mean duration of symptoms being 89 months (longer in Latin America).” Fitzcharles et al, “Nociplastic Pain.” Boyer, The Undying, 15. Ibid., 220. In this early discussion of the status of writing, Derrida explores the suppression of the Greek word pharmakon’s internal ambivalence: “the word pharmakon, even while it means remedy, cites, recites, and makes legible that which in the same word signifies, in another spot and on a different level of the stage, poison …” See “Plato’s Pharmacy,” 127. Boyer, The Undying, 248. Berlant, Cruel Optimism, 10. Fibromyalgia is now listed as a disease in the International Classification of Diseases, but when I was diagnosed, it was labelled a “syndrome”: a cluster of symptoms with no definitive cause. In scientific terms, “the most powerful electrical activity of the brain is

Notes to pages 90–9

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placed improperly in the slower waves (slow eeg), with the relative deterioration of the alpha rhythm … and beta sensorimotor rhythm.” Navarro López, del Moral Bergós, and Marijuán, “Significant New Quantitative eeg Patterns in Fibromyalgia,” 279. Oke, “Fact Sheet: Thrush in Horses.” See Sundardas Naturopathic Clinic, “Vega Testing.” See Katelaris et al., “Vega Testing in the Diagnosis of Allergic Conditions,” 113–14; and the 2003 study by the bbc, “Food Sensitivity.” Water Science School, “The Water in You.” My teachers in this area are Donna Haraway, Teresa Brennan, Lesley Stern, and Karen Barad. Teresa Brennan explains this kind of entrainment: “The form of transmission whereby people become alike is a process whereby one person’s or one group’s nervous and hormonal systems are brought into alignment with another’s.” Transmission of Affect, 9. Ibid., 9. See Bauer, “What Is a Candida Cleanse Diet?” Foucault, Discipline and Punish, 30. See Barnes, Myofascial Release, Healing Ancient Wounds. Dickinson, The Poems of Emily Dickinson, vol. 2, 719. See Canadian Pain Task Force, Chronic Pain in Canada. Patients with cfs, dubbed the “yuppie flu” in the 1980s, continue to be dismissed as malingerers. Even physicians suffering from long Covid have been dismissed by other physicians (Frangou, “Chronic Exhaustion, Derailed Lives”). The research on the condition itself is very new and extremely partial, but what we’re seeing with respect to treatment so far is a familiar split between the very wealthy, who book time in exclusive and expensive Covid clinics in beautiful locations, and those struggling through daily life who are forced to wait up to six months (in Canada) for appointments, and who frequently must travel long distances to access treatment. See Frangou, “Chronic Exhaustion”; Tait, “Covid Clinics.” Darren Markland (@drdagly), Twitter, 17 April 2022. Boyer, The Undying, 66. Ibid., 251.

p osts c r i p t 1 Poe’s story “The Imp of the Perverse” describes a character whose inner compulsions betray him. 2 Doidge, The Brain That Changes Itself, 190. 3 Descartes, “The Treatise on Man,” 117.

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4 Doidge, The Brain’s Way of Healing, 4. 5 See Meldrum, “A Capsule History of Pain Management.” 6 In the nineteenth century, physicians had been receptive to and interested in treating chronic pain sufferers who experienced “pain without lesions,” and they developed diverse theories of etiology and treatment for these patients. As the century progressed, however, neurologists began shifting their focus away from pain without any obvious pathology and researching instead more straightforward cause-and-effect pain experiences. As neurologists refocused, psychoanalysts and alienists took over treatment and interpretation of intractable chronic pain, viewing the pain as a signifier for mental and emotional unease. Causation doesn’t disappear but gets rerouted through a process of conversion: traumatic experiences are converted into physical symptoms, and the analyst is tasked with the job of matching signifier (symptom) to signified (originary trauma). As Freud writes, “hysterical symptoms are mnemic symbols” (On Psychopathology, 91). Even as fibromyalgia, a descendant of hysteria, gained acceptance over the final decades of the twentieth century, Inanici and Yunus confirm that the “organic versus psychogenic polemic continues to persist today” (“History of Fibromyalgia,” 372). Whereas once “hysteric” was reserved for diagnosed cases of hysteria, whether that term was aligned with a wandering womb, witchcraft, or excitable nerves, women who presented with inexplicable persistent pains over the course of the twentieth century were often dismissed out of hand as being hysterics, “worry warts,” and mentally ill. Halliday, in 1937, refers to those suffering from “muscular rheumatism” as manifesting a “chronic psychoneurotic state”; in Graham’s 1949 chapter on fibrositis, the syndrome’s etiology is defined as “infective, traumatic/ occupational, weather factors, and psychologic disturbance”; in 1968, Traut refers to women complaining of fibrositis as “worry warts.” For references to each of these, see Inanici and Yunus, “History of Fibromyalgia,” 372. 7 Cervero and Wood, “A History of Pain Research,” 1. 8 In the event of injury, sensors inside of my nerve cells (neurones) open, resulting in the flooding in of positively charged particles into the neurones, effectively generating an electrical impulse. See Butler and Moseley, Explain Pain, 30. Next, this electrical current, called an action potential, travels to the spinal cord carrying a specific message: danger. This process is called nociception – it means, literally, “danger reception” – and it happens inside of us all the time. Nociception does not necessarily result in pain. First, sufficient neurones must be charged up to generate electrical messages of danger, then enough of these messages must reach the spinal cord before the spinal cord opens the gates. There are multiple “gates” running

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from the spinal cord to the brain. As Doidge tells us, “These messages ascend to the brain only if the brain gives them ‘permission’ to do so, after determining whether they are important enough to be let through.” (The Brain’s Way of Healing, 5). The spinal cord is like a passport officer: it reviews your documents at multiple checkpoints and only allows you to proceed if everything is in order. At this point, the brain performs all kinds of analysis before it decides whether pain will occur. Gate control theory fits nicely with acute pain, the kind of pain that warns us of injury or disease, but falls short of explaining how pain can persist in the absence of injury or disease. Fitzcharles et al., “Nociplastic Pain.” From Melzack and Wall’s research, we know that “chronic injury can make the cells in the pain system fire more easily – a plastic alteration – making a person hypersensitive to pain. Maps can also enlarge their receptive field, coming to represent more of the body’s surface, increasing pain sensitivity. As the maps change, pain signals in one map can ‘spill’ into adjacent pain maps, and we may develop ‘referred pain,’ when we are hurt in one body part and feel the pain in another.” See Doidge, The Brain That Changes Itself, 191. Early proponents of this model include Clifford Woolf, who wrote about central sensitization and hypersensitivity in the 1990s. The first books I bought on the subject, The Sensitive Nervous System (2000) and Explain Pain (2003), were crucial in helping me understand the mechanisms of my own hyper nervous system. C. Woolf, “Central Sensitization,” S3. For more on cs, see Explain Pain. Fitzcharles et al., “Nociplastic Pain,” 2100. See Doidge, The Brain’s Way of Healing, and The Brain That Changes Itself. As Barbara Baumgartner tells us, Dickinson wrote to her friend Abia Root that she was “much interested” in anatomy. Baumgartner, “Anatomy Lessons,” 57. Ibid., 57. Dickinson, vol. 2, 561. As Baumgartner writes, “In her brain poems, Dickinson locates the source of her poetic creativity within this organ. She depicts an intense struggle behind the opaque walls of the skull and deep within the recesses of the brain, one that defines the creative process as a violent, consuming ordeal involving brain and body.” “Anatomy Lessons,” 58. Michaels, Racine, and Ninacs, The Art of Betty Goodwin, 58. From an interview with Goodwin in Canadian Art: “This notion started small, with Goodwin leaving a wedge-shaped area white on a painted

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figure of a swimmer. Next, she coloured in a black wedge on a horizontal swimmer, and drew a corresponding wedge beneath the figure.” Freedman, “Swimmer,” 39. 20 Enright, “A Bloodstream of Images,” 48. 21 Morin, Betty Goodwin, 116.

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