cosmolinguist | the fragmentary language of pain (Reply)

It's ME Awareness Day, and my train is running 39 minutes late last I heard, so I took the opportunity to finally read this piece in a tab I've had open so long I cannot remember where it came from. It's a really incredible read about chronic illness and narratives as necessary for access to care, and what hearing from ill people does to those in a position to offer care.

During those months [of waiting for treatment to start], my partner and I accumulated the hope that in August I’d at last get the help I needed. [Treatment is constrained at a clinic for low-income people in the U.S.] 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.

[The writer tests negative on all available tests and the doctor diagnoses him with anxiety.] 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.

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. 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. 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... 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.

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.”

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. 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.

... 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. This 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 result in so-called chaos for the patient, but it afflicts the medical establishment with the anxiety of hearing about it.

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.

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.”

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.

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.

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.

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. 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 ? 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.”

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 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 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.

And still I insist my becoming ill was never a call to story. It was a call to restore my bodily equilibrium.