The clinic was open once a week. It saw patients in a borrowed space near enough that I could walk to it, even on a bad day. Walking slow in my cognitive fog, only once did I have to pause, leaning over the curb, to vomit discreetly between parked cars. Nausea and migraine washed over most of that year. Since May I’d been enrolled in a taxpayer-funded, city-run public health program for uninsured, low-income residents who made too much income to qualify for Medicare. Late that spring, I’d taken the bus to my intake appointment with the health department; I’d provided the required proof—identity, residence, income—and I’d been enrolled; I’d immediately begun paying the modest income-adjusted quarterly fees, despite the fact that the soonest I could get an appointment was August.
Over the summer I’d continued to work as an adjunct professor and freelance book reviewer. During those months, my partner and I accumulated the hope that in August I’d at last get the help I needed. Despite temporary relief provided by weekly acupuncture treatments at a sliding-scale practice, my symptoms remained the same: occipital migraines, cognitive fog, facial flushing, nausea and bloating, and alternating diarrhea and constipation. I was always tired, always in need of more sleep; I could never get rested. My face and scalp were red and hot. Even brief touch left white prints on my swollen skin. The heat was painful and distracting. When I worked from home, I wore a big ice pack on top of my head while I graded papers or wrote. Curving around my face as it thawed, it made me look like a Puritan hausfrau, and my partner joked it was drag: the famous American poet Man Bradstreet. I took it off only long enough to freeze it again. My hands, however hot my face, were always cold.
This essay is featured in Repair.
The clinic carved its borrowed hours out of offices in a brutalist building of pebble-textured concrete and big glass windows, offices with dark tile floors that got colder as the season wore on. Its operations were obviously makeshift, from quickly taped-up, thinly laminated intake signs to shoddy xeroxes I was given on a chipped clipboard. Given my own precarity, I recognized a shoestring budget when I saw one, and I had sympathy for working under those conditions. When I finally saw the doctor—a pleasant enough middle-aged butch whose partner, I would find out, was looking for adjunct classes, and did I have any leads for her?—we had twenty minutes. Her back to me, she looked up my symptoms in a digital database. At the time, the facial flushing caused me the most immediate distress, so that’s what she focused on. After cross-referencing her database, my family history of autoimmune disorders, my own history of celiac disease and osteoarthritis, and my litany of unexplained complaints, she found plausible causes in three diseases, and said that we’d do a series of tests: first for Sjögren’s syndrome, then for lupus, and finally for carcinoid syndrome.
Then came the worst part: the doctor would have to order the equipment to perform the lab work, and was only allowed to order one test at a time. I’d have to come back the following week, when the kind and handsome phlebotomist, Jesse, would have one butterfly needle and one tube waiting for a good vein. I’d get the result the following month, at which point, if it was negative, she’d have to order another test and we’d start all over again. It was, at best, a farce, at worst, a bureaucratic allegory out of Kafka. While the doctor acknowledged the absurd, cruel inefficiency of the constrained clinic, she nonetheless remained its diligent and perfunctory functionary. Even when offering me a handshake at the end of the appointment, she remained behind her outdated desktop, a boxy model the same stained beige color as the public architecture from which the clinic cribbed its limited care.
And so we waited, my partner and I. We waited to hear the story about my body we thought Western medicine was going to tell us, the story of restitution that we’d been promised only it could tell, the familiar one that goes: illness, diagnosis, treatment, health. We also waited for my story about bad capitalism to end—exploitative labor, low income, chronic illness, and a health care system that at that time denied insurance to people with preexisting medical conditions—and for another, better story offered by taxpayer-funded public health care to begin.
As in a fairy tale, I was tested three times. The first time, we waited, I went back to the clinic, Jesse drew my blood, we waited, I went back to the clinic, and I did not have Sjögren’s. The second time, we waited, I went back to the clinic, Jesse drew my blood, we waited, I went back to the clinic, and I did not have lupus. The final time, we waited, I went back to the clinic, Jesse drew my blood, we waited, I went back to the clinic, and I did not have carcinoid syndrome. In this way, months passed. It was December when the doctor told me I did not have carcinoid syndrome—an illness associated with advanced liver cancer—and because it was our final appointment together, she offered me a diagnosis—anxiety and depression—accompanied by two prescriptions, an anti-anxiety drug and an SSRI.
Though it would be another three years until I received adequate medical care, and though this would not be the worst I would receive, it was the first time I was betrayed by my own GP. She didn’t say the phrase It’s all in your head, but she might as well have. Given the historical mistreatment of women and queers who’ve entrusted body and mind to the clinic, I was especially galled to find a butch colluding with patriarchy’s classic strategy of gaslighting. So much for queer solidarity! I was galled, and then I was angry.
That final appointment also happened to be the only one my partner was able to attend. We’d waited together through all three tests and there he finally was, listening to the doctor imply It’s all in your head. I was angry because I could tell he wanted to believe her. I was angry because of course I was anxious. Since May, I’d been waiting to receive care. Since August, I’d been tested for a series of diseases that escalated in seriousness from debilitating to terminal. Since my blood was last drawn, we’d been living with the fear I had advanced cancer. All along, I was always already ill, dealing with the dailiness of that while teaching four adjunct classes at three different schools. She shook my hand and handed me the scripts she wished me to follow.
My partner walked out of the clinic and I followed into a disagreement that began the end of our marriage. We didn’t even celebrate the news that I didn’t have cancer. I can’t believe I’m with another crazy person, he said, as though to himself, Why am I always with a crazy person? This only made me angrier. He implied that if I did have a psychiatric disability, I wasn’t worthy of his love, that being with me would be a mistake.
I’m not crazy, I’m sick, is all the language I had just then. We’d been together for six years. I was too stunned to argue. This was my love, after all, the man who just that summer had helped me assess the limitations that had accrued during my illness. We sat at the kitchen table while I worried over an invitation to submit work to an anthology of disability poetry—I don’t really count as disabled, right? I asked him. He was silent so long that I had my answer, even before he looked me in the eyes and listed the abilities I had lost in the years we had been together, physical and cognitive limitations that I had learned to live with. What choice did I have? But through his eyes I saw that my illness looked like disability, and I saw, too, how it had impacted him. Though we never settled on how best to talk about our divergent experiences of my illness, the conversation brought a new level of intimacy and trust between us.
How then could I make him see me again as a person whose word he could trust? The doctor’s scripts were in my pocket; I knew I would never use them. In the coming year, I’d begin to suspect my love would never again take my side, and by the end of our marriage I’d realize that, indeed, he never did.
I’m not blaming chronically underfunded public health care for the marital problems created by exploitative labor, low income, chronic illness, and lack of health insurance. But neither am I absolving it of its part in exacerbating and complicating the preexisting conditions of capitalism. I keep imagining what it would have meant to have encountered a doctor who said, I’m at the end of the care I can give you, and though I couldn’t diagnose your illness, I believe you are ill and you need more comprehensive testing than public health can provide. What would it have meant for my partner to hear those words at that crucial moment? I won’t pretend that turning this experience into narrative is healing. The damage done to my life can’t be undone.
If my life had been structured like a fairy tale, I would have been the protagonist abandoned once upon a time at the edge of the woods of illness, and, after I entered by a narrow path between thick dark pines, I would have been tested by experience. I would have been tested three times and each time prevailed over a figure of evil intent and the threat of mortal violence. I would have lived happily ever after. The fact that I lived to write this means that I did, in the sense that matters, prevail, but I didn’t leave the woods of illness by dint of a simple heart and clear moral vision.
Fairy tales are known for their narrative expedience and relative brevity: all action is external, suspense is brief, and soon the mortal threat has been vanquished. But in the woods of illness, time stopped moving in a linear fashion, and the compass supplied by stories of the ordinary world no longer pointed north, pointed true. The language of narrative—protagonist and antagonist, conflict and denouement—couldn’t orient me in that landscape. No witch would perish in an oven of just revenge; no good woodsman would split the skin of the wicked wolf to find me inside. In the woods, all action turned internal, suspended in what seemed an eternal gloaming. In the woods, my sense of self became the unmoving atmosphere of the deep shade cast by the thousand thousand branches overhead. A thick carpet of dropped needles soaked up all sound save for distant wind high in the canopy. Cut off from the world outside, I might have thought I was dreaming, but I knew the sound my mind told itself was wind was really the unrelenting hum of chronic pain.
The woods of illness were wordless, though they burgeoned with sound, texture, sensation, atmosphere. The somatic experience of illness wasn’t narrative: it was place. It was a place my body made out of its chronic disequilibrium, its migraines and nauseas, its gastrointestinal distress and joint pain. There was no story and no map, either. I didn’t know how to bring anybody there.
In Arthur W. Frank’s foundational text for narrative medicine, The Wounded Storyteller: Body, Illness, and Ethics (1995), the ill, Frank suggests, need “to tell their stories, in order to construct new maps and new perceptions of their relationships to the world.” Frank posits three common narrative structures for the experience of illness: restitution, chaos, and quest. In restitution narratives, the healthy person becomes sick and then they become healthy again, a quick, clean plot that reifies health in ways too naïve to be meaningful. This, of course, is the arc popular culture prefers.
In chaos narratives, the unlucky ill suffer without plot, their nonnarratives untouched by restitution or even just movement toward suffering in a more agentive way. Frank seems genuinely freaked out by so-called chaos. In his account, chaos strains the limits of caregiver empathy and institutional capacity because the chaotic body is nonnarrative—which, for Frank, is in effect to be a non-self, one who cannot effectively communicate or connect with others.
In quest narratives, the plot Frank prefers, the ill person finds the strength and agency to turn their experience of illness into allegory, a journey of insight gained from suffering. As opposed to the pro forma performances of restitution and the nonnarratives of chaos, quest narratives feature a “communicative body” that models for others that patients can “accept illness and seek to use it.” So central is this narrative structure to Frank’s conception of illness that he claims, “Becoming seriously ill is a call for stories.”
Is it, though? What if serious illness doesn’t or can’t call for anything? Or if it can, it’s only the body’s call for the restoration of equilibrium?
Frank’s view is implicitly Christian: it presumes bodily suffering has a higher purpose, and that redemptive meaning not only can but should be fashioned out of pain. His strong preference for reading illness as a quest shows that Frank’s “wounded storyteller” is a patient in both the sense of “a person undergoing medical treatment” and of “enduring hardship without complaint.” Dutch theologian Thomas à Kempis played off this same ambiguity in De Imitatione Christi (1500) when he counseled readers to “studie to be pacient in suffring.” Christ was himself nothing if not a wounded storyteller, and Frank pressures the ill to make a minor miracle happen: to transfigure bodily pain into linguistic meaning that can be shared with others.
I find that pressure pretty sadistic, to be honest. Let’s say you become seriously ill and seek medical care: What is it you’re really called to do? You’re busy dealing with symptoms on your way to see a doctor. You’re trying not to shit your pants on the sidewalk, vomit on the bus, or migraine beneath the waiting room’s unfriendly, unrelenting fluorescents. The whole time you’re worried because you’ve taken time off work, you’re losing wages, and you can barely afford the appointment, let alone what testing or treatment might come after. Your whole body hurts and you just want it to stop. Imagine what it feels like for some angel of medicinal meaning to show up just then and ask you to turn the situation into some fucking quest.
I admit to being unfair to Frank, whose chapter on what he calls “chaos narratives” allows: “The truth of the chaotic body is to reveal the hubris of other stories. Chaos stories show how quickly the props that other stories depend on can be kicked away.” And if I seem to relish being unfair, it’s because of the next sentence in that paragraph: “The limitation is that chaos is no way to live.” No shit, Doctor Obvious! And though I will continue to be unfair to Frank and kick away his props, it’s not for lack of gratitude that he, like other proponents of narrative medicine, insists that the longsuffering, uncomplaining pacient should finally speak. And I’m grateful too that he insists that doctors and caregivers must listen, even to so-called chaos narratives that “are hard to hear” because “the anxiety these stories provoke inhibits hearing.” I remember well the doctors who found my language an irritant or inconvenient delay in diagnosis and treatment; I remember well the examination rooms in which very brief appointments played out with so little human contact they amounted to the barest pantomime of care; I remember well my lack of surprise when their diagnoses faltered upon treatments that did not work.
Though Frank’s narrative medicine appears patient-centered, ultimately it underplays the fact that it’s the medical–industrial complex and its caregiving archons who allow patients to speak and who decide whether to listen. Nothing ensures that they actually can listen, or will understand what they hear. Though narrative medicine encourages patient speech, trusting as it does that even the pain of serious illness can be transformed into language, when it listens it insists on hearing only a certain kind of narrative—even after acknowledging that the requisite authorial distance is often impossible for a patient with a “chaotic body” whose only story “is a non-self story.”
Here we see the catch-22 of narrative medicine in the free market. On the one hand: “The need to honor chaos stories is both moral and clinical. . . . To deny a chaos story is to deny the person telling the story, and people who are being denied cannot be cared for.” On the other hand: “Exercising responsibility requires a voice, and the chaotic body has no voice. . . . The chaotic body is disabled with respect to entering relationships of care.” In other words, patients who can “pay” for care with narrative will receive treatment, while those who cannot “pay” will not receive adequate care despite the moral and clinical imperative not to deny them. The word responsibility is the dog whistle here; it calls up a classist and ableist neoliberalism that shifts the burden of “earning” and “deserving” adequate care onto the patient. It’s an ideology that writes off poverty and illness as personal irresponsibility that “unfairly” burdens the caregiver and the system. Not only does this alleged irresponsibility result in so-called chaos for the patient, but it afflicts the medical establishment with the anxiety of hearing about it. After all, “the very poor and the very sick have only a marginal place in the case load of the professions,” Frank writes, “which prefer what can be fixed.”
The impoverished, the marginal, the uninsured, the unfixable—all of Western medicine’s non-selves—do invariably, inevitably speak of their experiences, though too often they go unheard. And if their language creates discomfort, it is not because it is nonnarrative or irresponsible or chaotic, but because it requires a more generous and ethical interpretative framework than can be offered by the neoliberal clinic. In her landmark study The Body in Pain (1985), Elaine Scarry remarks, “Physical pain does not simply resist language but actively destroys it, bringing an immediate reversion to a state anterior to language.” Because physical pain rends language, renders it in tatters, Scarry argues, “the success of the physician’s work will often depend on the acuity with which he or she can hear the fragmentary language of pain, coax it into clarity, and interpret it.” Scarry acknowledges the patient whose pain makes them incapable of narrative: what language such a patient might offer is necessarily fragmentary. In the situation Scarry imagines, it’s not the patient who, through miraculous ingenuity and fortitude, transfigures their pain into story. Rather, it is the doctor or caregiver, who listens with acuity to what language the patient’s able to offer and interprets it with nuance and care. In such a scene, nonsemantic experience is made meaningful, not only by the patient but through collaboration with the doctor or caregiver. It’s no longer the patient’s job not only to suffer but also to interpret that suffering adequately for others and thus “earn” their care.
The thing I resent about Frank—which I also resent about Christianity—is the pressure to suffer correctly, meaningfully, and usefully. One must strive to be the kind of patient rewarded with adequate care, the one who redeems bodily experience from itself. But in the context of neoliberalism, Frank’s preference for the quest risks becoming a requirement, a form of responsibility-centered narrative medicine: the patient must not only suffer illness, they must also labor to make that suffering into a narrative with value commensurate with the care they must prove they deserve.
It’s not that I didn’t want to make narrative sense of my body during the years I lived in the woods of illness. It’s why I ventured to the clinic; it’s why three times I submitted to the doctor’s tests; it’s why I grew sadder each time I failed; it’s why my love believed it was all in my head. Like him, I wanted Western medicine to give us a map of the woods. Indeed, I desperately wanted language I could follow like a trail out of my illness and into the ordinary world of stories. I wanted to be able to bring my love back with me and show him where I’d been living all this time. Instead, when asked to account for my situation, I would say, as is the custom, I had fallen ill. An easy shorthand as well as an implicitly Christian idiom, suggesting the realities of bodily life were bestowed on us by our fall from grace and expulsion from Eden.
But had I fallen as decisively as Eve and Adam? Hardly at fault by dint of sin, I could never pinpoint the moment I found myself on the path between the trees: one day, I looked up and saw nothing but branches. I found myself equally far away from everyone, loved ones and strangers alike. When I talked to my partner, I talked to him over the din of the wind far above my head; when I talked to the doctor, I talked to her through a screen of trees. What I wanted more than anything was for someone to join me in the woods: I craved a language of care as perfect as my mother’s wordless hand rubbing my back when I had the croup and she bent me over a hot bath to inhale the steam that would ease my cough. I waited, but no one could come near; I waited and brooded over the way I had no narrative and no map; I waited until it seemed pointless to suffer also wanting to suffer correctly. I allowed myself only the suffering I could know: pain’s rich and fragmentary language.
Over time I realized that, other than bodily disequilibrium, illness has no intrinsic meaning. It is neither moral nor metaphysical unless we wish it to be so. Like a koan offered to a Zen novice, illness reveals, more than anything, the desire to make meaning and the lengths to which we will go to make it.
Thus a meeting between a seriously ill patient and a doctor or caregiver is always a scene of reading: in the book of a fraught body, the text is pain. But if physical pain destroys language, and the ill patient can offer only fragments of that experience, then the text produced by physical pain, as Scarry would have it, resists conventional modes of literacy: “physical pain—unlike any other state of consciousness—has no referential content. It is not of or for anything.” It’s nonsemantic—it communicates no meaning—and what grammar it has is entirely somatic. How to articulate experience that remains physical?
This is another reason why I distrust Frank’s evangelical faith in story: even if the social and personal contexts in which I experienced illness were relentlessly narrative, the somatic experience of illness was not. In the woods, nothing ever happened except pain, richly various, suggestive, yet endlessly repetitive. Sometimes, like at the kitchen table with my partner, narrative could briefly bring me out of pain’s essential privacy—but try as I might, I couldn’t find a way to bring anyone into it, no matter how far I ventured out into the ordinary world of stories. As Scarry notes, pain is an acutely anomalous state, and “comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed,” a situation perhaps made most poignant by the meeting between patient and doctor or caregiver, when so much depends upon language.
Frank’s insistence that illness must be converted into story has always struck me as genre chauvinism, given that my own experience of illness was largely nonnarrative. Any attempt to convert what he reductively calls chaos into quest feels false, a wholesale betrayal of the somatic, nonsemantic experience of illness. And though I can’t in good faith agree that serious illness itself is a call for story, I can concede that illness nonetheless contains a “complementary call for stories” in the need to tell “medical workers, health bureaucrats, employers, and work associates, family and friends” about the experience of illness. Indeed, the ill are so often asked to account for themselves that most of us eventually perfect the affected patter of an elevator pitch, a pithy account of a harrowing experience rendered less threatening: I’ve fallen ill.
But in what sense, and to what extent, can these stories crafted for the benefit of others be said to represent the experiences of illness and of pain? If physical pain renders language fragmentary and leaves narrative inadequate to the task of representation, then, as Scarry argues, “A great deal . . . is at stake in the attempt to invent linguistic structures that will reach and accommodate this area of experience normally so inaccessible to language.”
Given what Scarry calls “the practical and ethical consequences” of expecting each ill person to possess the wherewithal and agency to become the protagonist of their own quest, I believe we must distinguish between a narrative that recounts the social experience of illness and a nonnarrative language that registers the somatic experience of pain. We must value them both, and in doing so, learn to read nonnarrative language produced by an ill patient, not as chaos, but as language made by a specific experience of physical pain and psychological distress situated in a specific socioeconomic context.
We must also reframe the meeting of patient and doctor or caregiver as a project of inventing, together, linguistic structures that don’t predetermine the shape or meaning of a patient’s experience. In the same way that it can feel devastating to have one’s experience of chronic illness reduced to “chaos,” it can feel unfairly punitive to have to refashion one’s daily experience of physical pain into a quest. And certainly we must take the burden of interpretation and narrativization off of the ill and place it in the space shared between them and their caregivers.
I want to be clear: I’m not against narrative, which can indeed be useful, and in most medical situations is essentially compulsory. And I’m not against an ill patient narrating their own experience, which can be a complex and important gesture of agency over events whose ultimate meaning and sequence often remain elusive. The truth is that no genre is intrinsic to the experience of illness, and medical narrative can be a form of hegemony that ensures that illness is made meaningful only in ways that reify both Western medicine and capitalism as redemptive forces. It is for all these reasons that I make the case for nonnarrative medicine. I want us to acknowledge the somatic experience of serious illness, which doesn’t take place in language, and when it does produce language, can be ambiguous and hard to interpret.
For a patient like myself who couldn’t make narrative out of physical pain, it was easy to become disillusioned by Western medicine’s structural inability to interpret nonnarrative language as anything but chaos. It was easy to become disillusioned by medical encounters constrained by neoliberal corporate capitalism, which measures care in efficiency and reduces patient–doctor contact to mere minutes. It was easy to become disillusioned by repeated encounters with doctors and caregivers who didn’t have the time to listen to, let alone interpret, the nonnarrative language of chronic illness and pain, and whose diagnoses and treatments were thus doomed to failure.
And I was lucky. The doctor who misdiagnosed my chronic illness and pain as anxiety and depression damaged my life. But I survived to remember the useless prescriptions in my hand, how my partner walked out of the clinic ahead of me. I had to rush to catch up. It was cold and overcast, and the air felt good on my flushed face, hot this time with anger as well as illness. Why am I always with a crazy person? he asked, as though I wasn’t there. Even then I thought back to the doctor’s pronouncement with astonishment. She was basically donating her time to the clinic, I knew, and I respected that. But the public health program had an extremely restricted list of available tests, and there were no tests left for illnesses that fit my symptoms. We all knew that. How could she be so certain? How could he? It was a failure of care and caused irreparable harm. It was also the result of many powerful systems colluding to render my body chaotic and voiceless.
And still I insist my becoming ill was never a call to story. It was a call to restore my bodily equilibrium. And my anger is a call to imagine the clinic as a space where that could actually happen. I like to imagine it now as a site of contemplative listening, and the doctor this time gathering the fragmentary language I offer her. I like to imagine the doctor mindfully holding an odd cache of words that come to her in no certain order. I like to imagine her examining their nuances and inflections, their patterns and omissions. I like to imagine her very careful reading of the text of pain. I like to imagine now how it would have felt to have received this reading then, my partner beside me. I like to imagine how it could have shaped my subsequent care and my life outside the clinic. I like to imagine all the meaning we could not make together.
