Disabled identities don’t always begin with an illness narrative but mine does. At age three I had a grand mal seizure. A CT scan found a brain tumor doctors described as a glioma, from the Greek word for "glue." Two experimental operations, at 9 and 15, removed most and then nearly all of it. Then, three decades after that first description, I retold my medical history to a new doctor. In that office, at the end of last year, I learned that the term glioma had gone the way of “Asperger’s syndrome” and “manic depression.” Excised from diagnostic language, glioma was now simply the contemporary description complementing the small archive of images dating back to that first CT scan. Office staff referred to these documents as “historical scans.” 

Scanning through my own history after that checkup, I realized how medical records and medical language have shaped its earlier drafts. As I started telling stories in my own words, I had reclaimed that diagnostic language as the best means of representing my early experiences as a sick person and my origin story as a disabled person. This happened because representations of sick and disabled kids like me were rare in the 1980s and 1990s; when a roomful of my college writers asked me where I had seen that experience growing up, the best I could do was Sadako and the Thousand Paper Cranes. 

The Sadako epiphany emerged during a conversation around Jaquira Diaz’s essay “Girl Hood.” This was in the fall of 2021, at a campus still slogging through emergency remote instruction. Since those conditions had their root in a particular disease and our civic response to it, I have been thinking a lot about the narratives we tell, and don’t tell, about illness. What story do we tell about illness now, and what power do writers—especially sick and disabled writers—have to reshape it?

*

You shape a story by telling a story, so here’s one about a fellow parent. I’ll call him Alonso. Our third-graders spent much of this past year as table partners. Like me, Alonso recently became a distance runner. He works as a ventilator technician at a New York City hospital. His job heightened his family’s risk for COVID-19 from its first days. Though he, his wife, their son, and his parents, who live across the hall, all survived it, the disease found them early. ‘Early’ here means: long before vaccines, in the terrifying weeks of constant sirens and piecemeal PPE, in the time when I once saw an apartment being cleaned out by two figures in hazmat suits. During school in spring 2020, the first-grade team invited guest speakers from the school community to come talk about their ‘essential work’. Among the grocery workers, epidemiologists, and delivery people, was Alonso. When the students thanked the guest, his son unmuted and rallied the room to “kick COVID’s butt!”

Of course I immediately loved and still love the sentiment. But the impulse to kick COVID’s butt reveals what Susan Sontag called a "twin distortion" built into the way even our kids talk about illness. First, our assumption that illness is a peculiar kind of fight, both neverending and almost-won. This odd blend of optimism and hopelessness has been critiqued by writers from Sontag to the late Ehud Havazelet. Of the leukemia that would later kill him, Havazelet told a journalist, “This expectation that you can beat it is self-destructive. It's a taunt, and that heroic attitude is a burden.” COVID has refamiliarized us with this attitude, the metaphors that buttress it, and the myths emerging from it. These things, taken together, compose that “taunt.” The insight that sick and disabled writers offer is to keep those things from combining their power into a taunt. We can keep them separate, tease out the threads. 

The other problem with our story about illness has roots in our pandemic lexicon: long. To use scholar Rosemary Garland-Thomson's term, my "sit-point" is that of a disabled writer whose disability—a brain injury—stems from the treatment of an illness—whatever the doctors have decided to call it now. What it seems like, from here, we don’t always understand about illness is its duration. When I was 9 and a surgeon removed that brain tumor, was the illness over? Was it over at 15? Maybe—that’s when my disabled identity began. Or is it just ongoing, despite everyone’s best effort to pretend otherwise? It’s more comfortable, for others, if I can just pass as cured, as nondisabled. But my experience is neither. 

At the root of both problems is the pliability of language. That same pliability offers a solution. Back when I thought medical language gave me a foothold, I would usually describe my history as an oligodendroglioma that became an astrocytoma. At the time of my diagnosis, I’d hear the word inoperable in appointments. What I notice writing this piece is how all these words eventually changed, all these words faded. These words shook out of what passes  (for now) as the final draft. Now, even the fatal thing described by that word is not even satisfyingly described by that word. So say the doctors. 

In an illness narrative, the doctor is a slippery figure: audience, editor, some-time ghostwriter. The first thing a doctor asks a patient is to describe their symptoms. Yet this first audience for these first tellings shapes our future compositions and descriptions. And it shapes the way we hear others’ stories. 

We need doctors, so let’s keep them, but let’s retire these flimsy fictions: the myth that illness is a fight, the myth that illness is finite, and the myth that illness is stably described in language. Illness is not a fight, it is not finite. It is discursive and, whatever the clock says, it is long. 

That’s where us sick and disabled writers, and our readers, have an essential role: in writing and reading stories of the ongoingness of whatever ails one of us, all of us, any of us.

Bio:

T. K. Dalton's creative nonfiction has been cited as “Notable” in Best American Essays and has been nominated for the Pushcart Prize and nominated for inclusion in Best of the Net. Pieces of his memoir-in-essays, The Intimate Register, appear in Apogee, The Millions, and elsewhere. A founding editor of The Deaf Poets Society, he presents regularly on writing and disability, most recently on a featured panel at AWP 2021. Tim is currently completing a PhD in English at the City University of New York, where he has taught writing since 2008.