Aesthetics of Sickness: Wellness Beyond Narrative
This piece is part of a series that responds to the theme of the 2023 Cleveland Humanities Festival: “Wellness.”
During the years I had cancer, I sometimes bristled at the language of “wellness” and its trappings. I didn’t need mindfulness; I needed oxaliplatin. And, anyway, there can be little choice but to become an expert at mindfulness—at meditation as a last resort—when you’re too sick to hold a book, to hold a job, to hold a story together. You count the moments. Survival amounts to not dying moment by moment. You do not appreciate those moments more than you did when their threadbare firings, in health, steadily flared. You survive them.
It could feel disconcerting, thus, when people suggested that my main problem might be a narrative one. If I could talk about my life differently, would the tumors shrink? They meant well, but it didn’t feel like wellness: this view can be one step away from a kind of narratological prosperity gospel, from the implication that if you don’t survive, the problem is you, your story. (Patient, blame thyself.) Rather than the issue being, say, the fact of mortality, or the conditions that are necessary before we can tell and believe particular kinds of story, let alone live them. In his new volume Seduced by Story, Peter Brooks summarizes recent criticism of the “storification of reality.” A “mindless valorization of storytelling,” as he discusses, might lead to the view that “human institutions and behaviors can be grasped only through stories.” What forms of knowledge does that leave out? If “telling one’s story” is presented as inherently moral, healthful, empowering, is that true, too, of the narratives found on the “our story” page of every corporation? Of an anecdote that over-influences a legal decision? If we’re trying to really understand someone, or ourselves, should we favor familiar shapes of story, or should we try to listen, perhaps especially to utterances outside of any storied arcs?
Rather than narratives of wellness, I think my attitude in surviving depended on an aesthetics of sickness. One needs to find a style for their illness, as Anatole Broyard suggests in Intoxicated by My Illness. And so I wrote you a wild email one evening, as though by auto-fill fail, so you would think of me. So I taught a wild course on Whitman, started each day’s to-do list “whatever it takes.” (The joke was that illness would take whatever it wanted and didn’t care about my lists.) In contrast with the narrative fallacies of wellness, I appreciated Edward Said’s On Late Style. It doesn’t emphasize narrative coherence or fulfillment but, following Adorno, “untimeliness” and what we can’t assimiliate into a standard sweep.
Most of all, if so much of culture, so much of medicine, even in the palliative wing, seemed shy about death, my wife and friends and I tried to shed that shyness. I recall an argument with an oncologist: she kept telling me things that kept me from understanding my illness and its care. That is, she kept lying. She said she wanted to avoid saying anything that might discourage me. Should not life be, at times, discouraging, which an adult can bear? Especially when one’s life is concerned? I’ve since learned that this condescending position can be standard in medical ethics. I found it more discouraging than, say, the friend who frankly asked if it’d help to know they’d get rid of my clothes.
As it turned out, I lived. In that chapter, now five years on, I’ve often bristled at wellness in another sense, its more neoliberal one, which can emphasize “wellness” as an app you should subscribe to, or a podcast for your commute, rather than as a living wage. I didn’t need advice about self-care; I needed insurance. Survival costs a lot, and a lot’s designed to shuttle those costs back to you, as debt, guilt, guilt-debt. I’ve been fortunate, not least thanks to a boss who, when I thought I had no choice but to quit, said, “Let’s call it an unpaid leave. See where things go.” Things went better than expected; I returned. In a professional sense, that moment of accommodation, of generosity among the unknowns, brings me to the gainful spreadsheets and email of today. The sick body is never singular, is made of others, all of those absent and intimate who can pull us back to the world, or keep the world warm while we’re away, or offer a gracious exception, especially when the story is at its most impossible to tell, and human resources fail us. Friends and colleagues and healthcare workers and science and the collective risk of insurance, and let’s say the lasting rites of poems, too—collective dynamics that my wife Hilary Plum discusses in her new collection of essays, Hole Studies.
And yet, there’s also wellness that goes beyond the narrative fallacy, beyond the neoliberal dodge. Maybe this just happened once, or maybe it was many times, I can’t remember, I don’t care. A friend biked over to join at the hardest point of the chemo cycle. She brought me a small dark coffee, a particular balm in that hour, when vision blurred. She took a bag of potato chips from the literal clown who came around with stickers and snacks (I despised him; my aesthetics would’ve preferred a reaper, or a reading from Proust) and she wiped some of the potato chip grease on her leg. I was counting the moments; that one was wellness. I wouldn’t call it a story. We met the other day at a bar named Sardine that serves sardines. She recalled the intensity of our chemo conversations. And then her realizing, the next time she’d come by, despite my lucidity in conversation, all we’d figured out, that I’d remember nothing of it, because of the drugs. My style of illness, which was a style of wellness, came to include accepting forgetting (see, if you can remember the recommendation, Lewis Hyde’s A Primer for Forgetting). I forget if I’ve mentioned this to you already. It bears repeating. We find ourselves somewhere fresh. We let some things go. I don’t need to tell you where I’ve been, for us to be here, but we can talk if you want.
The pieces in this series, created in affiliation with the 2023 Cleveland Humanities Festival, focus on experiences of and contentions with wellness that well up in such unanticipated ways. Valentino Zullo, a social worker and comics scholar, considers his experiences discussing comics with reading groups; fiction writer Caren Beilin stages an encounter with Cumin Baleen, her karmic doppelgänger; Rachel Bracken, a scholar of medical humanities, offers a consideration of narrative medicine theory and praxis; and Jason Harris, a poet, explores new parenthood. (We’re particularly glad that Jason’s contribution offers continuity with the series we published as part of last year’s Cleveland Humanities Festival, on looking as a form of discourse, which also included pieces by poet and essayist Ali Black, art historian Jonathan Fineberg, and many others.) We look forward to featuring these pieces in the weeks to come, to finding our way further into the well and its waters.