In my youth, I called myself a writer, but my first passion was distance running. I aspired to shocking feats of physical endurance, nurtured fantasies of heroism. (Probably I read too many comic books.) But at twenty-three, my dreams were burst by a diagnosis of type 1 diabetes. Suddenly I needed insulin injections each time I ate. If I didn’t get the dosage right, my blood sugar spiked or plummeted. High, I grew tired and achy, irritable, needed to inject again. Low, I began to shake and sweat, couldn’t think straight, had to eat sugar right away or risk a coma. No more hopes of heroism; now I was a potential victim in need of saving. Diabetes wasn’t my fault — just bad luck — but I still felt that I must have done something to deserve it.
Worried for my health, my grandmother told me anecdotes about my grandfather, who’d died of complications from type 1 diabetes before I was born. She talked of poor blood sugar control, a reckless lack of self-care, an amputated foot. My sense of shame at having diabetes was amplified by the fact that she hadn’t shared any of this previously, as if it was a dirty secret.
What she said became material for a short story — my first good one, I think. I inhabited the characters at a depth I hadn’t with earlier work; I was acutely attuned to their frustrations and fears. I told myself that my transformation of private history into public fiction was a way of pushing back against the shame, but I recognized something self-protective in my choice of genre. Fiction, after all, means never having to say it’s your story.
After publishing that one, I stopped writing about diabetes. Dealing with the condition took up too much reality; I didn’t relish having to grapple with it in fiction, too. Also, the shame persisted. I swore to squeeze diabetes into the smallest possible place in my life.
Almost two decades passed before I came upon Frederick Banting’s 1925 account of witnessing hypoglycemia in the first patients to receive insulin injections. His description astonished me. An early warning sign, he wrote, “was an unaccountable anxiety and a feeling of impending trouble associated with restlessness.” Sweat and an “almost unappeasable” appetite usually followed. “No particular foodstuff was desired, but bulk of any kind seemed to give satisfaction.” Banting also observed, “There was a marked pallor of the skin with a rise in pulse rate to one hundred or one hundred and twenty beats per minute, and a dilatation of the pupils.”
Those symptoms were banally familiar. What amazed me was discovering in a clinical narrative the language of body horror, something I’d associated only with movies and having little to do with me. All at once, a new path opened for my writing: a way to make the everyday uncanniness of diabetes communicable.
My latest novel isn’t exactly about the condition. It’s about a range of everyday people looking after each other and themselves and yearning to be looked after. There’s bodily weirdness, but instead of insulin shots and blood sugar monitors, there are human beings flattened and rolled up, tattoos like cattle brands with psychedelic effects, and a former track star with muscular enhancements that threaten her health. It’s not about me! the book insists on my behalf.
Over twenty years with diabetes, and the condition still leaves me feeling too vulnerable to put myself out there directly. Every injection remains a case of waiting to see whether I’ve got the dosage wrong, whether I’ll wind up shivering and foggy-brained, whether I’ve made myself more susceptible to long-term complications, from blindness and heart disease to losing my runner’s feet. Not me! a voice inside me says in answer to such imagined futures.
Yet isn’t that what fiction’s for — both the writing and the reading of it? To face the grimmer possibilities. To sidle up to matters ill-handled head-on. To shine a light on things that feel shameful to write about in non-fiction and to rethink why they feel that way. To peek around corners. To reconnect with forms of weirdness to which you’ve grown inured. To crack yourself out of your own little egg and imagine what’s happening inside others, with all their idiosyncrasies and foibles, all the ways they’re like and unlike you. Aspiring heroes, maybe, but more often just vulnerable selves, giving and needing care.