John Cotter with Kathleen Rooney

At DePaul University, I teach a mixed genre creative writing workshop called Writing the Body where any aspect of embodied existence—sports, sex, food, poop, gender, race, drugs, illness, disability, you name it—is fair game. At the end of the quarter, in the last email I send to each student responding to their portfolios, I like to recommend a book that would have been perfect to include on our already stuffed syllabus if we had longer than ten weeks. At the conclusion of this most recent round of teaching this workshop, I recommended Losing Music by John Cotter, telling each student that “It’s smart and sad and funny, a beautifully written account of his gradual loss of hearing from a debilitating condition often diagnosed as Meniere’s Disease, but that ultimately has baffled his doctors. It’s a fascinating read and a model of great autobiographical writing about the body.”  

In advance of Losing Music’s April 2023 publication by Milkweed Editions, John and I talked by email about Anna Deavere Smith’s plays, Jonathan Swift’s skull, the destructiveness and discouragements of capitalism, and how—no matter the condition of the body that contains them—all souls weigh the same.

Kathleen Rooney (Rail): A huge focus of the book is how illness and disability can upend every aspect of a person’s life and routine, and how that person then has to make decisions about the new life and routines they want—and are able—to establish. Of what does a typical day in the life of John Cotter consist these days?

John Cotter: It’s tricky to say what’s typical, because things are constantly in flux. When I’m healthy I accomplish a lot, but I’m not in charge of what days, or for how long. Chronic illness can be like this: good days feel like time travel into the past, the time before the illness drilled into you. On good days, you’re overcome with a sense of homecoming, the sharp way everything sounds and feels, how warm and easy it is to be alive. The trouble is that the bad days feel like time travel too—this time into the future, where the disease has progressed, where options are more limited, and this thing you’ve been dreading has come to pass.

This morning, like a lot of mornings, I woke up to what sounds like a loud appliance—a kind of high-pitched whine. But there was no real noise present, no soundwaves. The noise was inside my head, feedback in my auditory cortex. I put on my hearing aids, which muffled the sound by replacing the loudest edge of it with the sound of the rain outside, and the sound of traffic passing. I said the word “testing.” I could hear myself say it. The ceiling wasn’t moving and the floor wasn’t moving. So that told me it was going to be a pretty good day: I could make coffee and do some work and we could have this conversation. Later, when the rain clears up, I might jog through the park. On other days, bad days, I might need a cane to walk, or I might need to hold on to the walls. I might be deaf to my own voice. There’s no telling ahead of time.

Rail: You’ve written a book with a beautifully balanced structure: divided into two main sections, each containing six individually titled chapters, and separated from each other by a section called “Intermezzo.” This organization seems so right that it gives the impression of having come to you easily, but maybe it didn’t? How did you approach the writing of this book?

Cotter: It’s tricky to describe the process because, for the first few years I didn’t write about what was happening to me. It was too unsettling. I was too unsettled. In the first months of working, it was all I could do to get to the desk to write a paragraph a day. By then I knew this couldn’t be a story of recovery, or epiphany. But there was also no point in an encyclopedic chronicle of daily events, a prosed-out appointment calendar. And I didn’t think people would want to spend the whole book reading about me personally, my changeable feelings, so my first idea of structure was a tree with many branches: the life of Jonathan Swift (who shared this condition), my revelations at the homeless shelter, the mysteries of sound dynamics—I spent years making these individual, modular pieces. I wasn’t surprised when early readers told me it felt as though my own story was getting lost among other stories. But I was surprised when they told me it was a problem. I’d written myself out of my own memoir.

The reason I quit writing poetry, years ago, was that I couldn’t contend with the lyric I. It was always easier for me to speak in other voices, to joke around, or abstract. I didn’t feel comfortable writing about myself directly. But in this case, the thing that tied these stories together was me, it had to be me, couldn’t be anything else but me. This would have been obvious to other writers from the start, but it took me a long time. I had to find where I was hiding in the text and make the lines a little bolder. Standing back, I could see those lines were tracing two sequential narratives: the search for a cure, and then, once that cure proves elusive, the search for a way to live without the cure. Once my own story was clear, I could set the other stories in orbit around it.

Rail: I like how discursive the book is as it unfolds, ranging from your affection for Papa Wemba’s song “Awa Y’Okeyi” to Immanuel Kant to Shakespeare to your grandmother Vivian. But I also like how your quest for a diagnosis to explain the horrible vertigo and deafness that were suddenly besetting you becomes the spine of the story. It’s a mystery tale, in a way, where you’re both the victim and the detective, but in the end, you come to learn, as we do along with you, that Ménière’s disease is a catch-all for any ear issues, major or minor. You write, after a disappointing visit to the Mayo Clinic, of doctors that “I thought that if they couldn’t fix what was wrong, at least they could find a way to make you feel somewhat better. But there are thousands of diseases we have not yet cured and thousands of those that don’t yet have their March of Dimes, their Betty Ford.” How have you been able to come to terms with that realization, and what suggestions do you have for other people also arriving at that unfortunate truth—that some mysteries (medical and otherwise) can’t be solved?

Cotter: The really difficult thing for me was to accept that I wasn’t the same person as before I got sick. Because after all the mind is part of the body, so if your body changes, your mind will change, the seat of the self. It’s not just habit that anchors us to our outdated selves but ritual and sentiment and the dreams we’re still working on, the sunk cost.

And the terror of uncertainty. In other situations, I naturally have a pretty agnostic temperament. I don’t need to know all the answers, or travel to all the cities. I don’t need to know if this is the only life—in fact, I’d rather not know. I’m not great at planning for the future. But when I got sick, I struggled to come to terms with the fast pace of change, and with what Heidegger called “fallenness,” this sense that I wasn’t ever ready, not yet, to start living authentically. And now I could never live in the way I’d wanted, because that “I” was someone else. I was getting ready to play an old game, but now all the rules were changing.

You have to find a way to let go of certain hopes, and give yourself up to the luck of the moment. This is made harder, of course, by a society that demands youth and health and vigor, everything you’d want out of a soldier. Some days there’s very little you can do, and the walls of the room are very close. On those days you have to find everything you can find there. It’s bad enough the world holds you to a standard your health can’t afford—don’t compound that by being hard on yourself. Some days are a mansion, and some days are a shoebox. Some days are a snuff box. Use every pinch of the snuff; use every corner of the box. Befriend the days.

Rail: Full disclosure, you and I met through our fellow writer Elisa Gabbert, your wife and one of my dearest friends. I felt as though I knew you both pretty well going into this book, but naturally, the personal nature caused me to learn even more intimate detail about not just the events of your lives, but the dynamic between the two of you as those events unfolded. How did it feel to write so vulnerably about your own life, but also—by necessity—to write so vulnerably about a fellow writer?

Cotter: As the writing went on, I became interested in something you can only really achieve through total honesty: an intimate strangeness. It became a way of testing myself: can I tell this story without hand-waving? Without smoke capsules? But at the same time, to avoid at all costs a story that was predictable for the reader, or rote. Or a story that just piled up details like a kind of wall.

Any kind of writing is a process of curation, winnowing the endless minutia of life into the tiny fraction that’s digestible. Even maximalists leave ninety-nine percent of their lives on the table. Usually, if one story doesn’t get at the point you want to make, or your partner would rather you not tell it, there’s another that works just as well. Elisa and I maintain veto power when we appear in each other’s work. I won’t lie and tell you it’s never fraught, but I think it’s healthy. We’re not always happy about life, and we struggle, but we’re happy that we’re together. We struggle together.

Rail: You cite from a wide array of sources, including Peter N. Stearns, who writes in his book Shame: A Brief History of “one of the oldest traditions of group shaming: the sense that the disabled were shameful in themselves and that their existence brought shame to the families that bore them.” How did you decide what sources to include and what to leave out, and how did you settle on what topics (aside from your own immediate journey with illness) to cover?

Cotter: I wanted to try to smuggle as many voices into the book as I could, and as wide a variety of stories as I could, and to share as many aspects of this thing as I could. For whatever reason, I don’t naturally think in images or abstractions so much as I think in stories—(as someone who’s had dinner with me, you can testify that I’m one of those people who does all the voices, sometimes exhaustively)—and so I wanted to try to organize a larger story out of these little cacophonies. Like a pointillist portrait. Or like one of those Anna Deavere Smith plays (I use her name reverently) where different monologues come at the playgoer at different angles, all with warring perspectives, but somehow underneath all this separateness there’s a hum, a oneness that hangs in the center of the room somehow, invisibly. Several of the chapters stick pretty closely to my consciousness and my experience, but I really do hope others feel full of different spirits, other lives.

Rail: Related to that, one of my favorite aspects of the book was your analysis of an affinity for the life of the Anglo-Irish satirist and author Jonathan Swift. I feel like most people know he wrote Gulliver’s Travels and “A Modest Proposal” and that’s about it. I’d say very few (including me) knew he suffered horribly from something that today would probably be called Ménière’s disease. Can you talk about how you learned this about him and what your research and writing about him taught you about your own experience?

Cotter: Oscar Wilde’s father—William Wilde, a respected physician and writer—used to carry Jonathan Swift’s skull around Dublin. He’d be out drinking, and he’d produce the skull and say, I could have cured him, just by tapping with an awl right here—and he’d put his finger on the spot—to break the bone and free the brain from all that blood. He thought all of Swift’s symptoms, the roaring and sound distortion and vertigo that made his life hell, could be cured for good with one flick of the wrist, one jab. People are still like this. They take me aside at parties and tell me about the cranial sacral work that’s going to snap me into shape: a new app or a meditation technique or some drug they’re selling. If they could carry my skull around, they’d do that too.

What was so interesting to me in piecing together the story of Swift’s experience with the illness was how much of his life and his work was touched by it. And how no one talks about this. I mean, his biographers note that he had this condition, but with a very few exceptions they immediately move on. They don’t connect it to everything else in his life: the horror of the body in Gulliver’s Travels, the surliness with his friends, the weird misanthropy. How much of it had to do with the constant pain, the strange sounds that he heard, and the constant uncertainty he would have felt? And where can we find it in a book full of physical distortions, and tiny people who speak too softly to be heard, and monstrous birds who pick you up and drop you through the air? As I write in the book, “We bend to the shape of the light that falls.” We report on the world from our own location and position, even when we imagine things.

Rail: Part of what you’re able to touch on in your discussion of teaching—especially teaching in the community engagement program at Fort Lyon, a homeless shelter in eastern Colorado—is the precarious nature of life in America if you’re an adjunct professor or really if you’re a person who has ever made a serious misstep or suffered a serious illness or injury. What do you wish you could change about the way the ill, the disabled, and the homeless are generally dealt with in this country?

Cotter: I’m not breaking news when I point out that a capitalist society is going to measure everyone by their economic worth: how much have you made or how much will you make. Lots of disabled people aren’t in a position to earn as much as an able-bodied person, sometimes regardless of accommodations, but if they attempt to collect disability the government tries to limit their ability to work even further, as a condition of the aid. It’s a destructive and discouraging system. Even the words we use to talk about these things—people having inherent worth, inherent value—reek of money. I’m not religious, but I don’t think you need God or a church to say, “all souls weigh the same.” I believe that. All souls weigh the same. Everyone is equally important, and we ought to act like it. Not for heavenly reward but because it’s the right way to act. We shouldn’t let the callousness of this system affect us, but of course we do.

I might also add that the social model of disability doesn’t tell the whole story, not for everyone. Impairment isn’t always reducible to difference. Access and accommodation are vital but denying that some people will suffer from their conditions, or from what their lives have become, regardless of access or accommodation, can feel like another version of what the disabled community calls “inspiration porn.” It gives us an excuse to forget the problem. We are morally compelled to accommodate people, of course: build ramps for the mobility impaired, build houses for the homeless—that is the necessary first step. But it’s not always going to be sufficient on its own, and rhetoric about it certainly isn’t. People will often tell you what they need if you get to know them, and if they’re able to trust you.

Luck matters, and luck compounds luck. At the homeless shelter I met any number of people who might otherwise have lived healthy lives had they not suffered from such hard luck at such an early and formative age that there wasn’t any way to dig themselves out without huge amounts of help, and belief, and time. And they deserve that help. I’d advise spending time one-on-one with the actual people who are suffering. Talk with them, get to know them. They are who you are, with a little change of circumstances, a little change in luck.

Rail: Near the end of the book, you write “What I took to be triage—hearing aids, a pocketful of valium, time each day to rest—was in fact the scaffolding of my new life. And if the body is the self, if the body is the mind, then the hearing aids behind my ears and the lassitude that fell on me and the sounds in my head were my new bones and skin. I had to choose the way I'd be in the world with them.” I loved that because it seemed to be striking an important distinction—that when things like this happen to a person, that person does not have control, but they still have power, and they can still make choices with that power about how to go forward. It could have been a corny, self-help-y point, but it wasn’t at all—it was subtle and illuminating. What do you most hope that a reader will get from reading your book?

Cotter: I don’t think suffering necessarily makes people stronger or wiser. It’s a choice you have to make every moment, and you won’t always make the right choice. My own choices vary. But I try very hard, even as the story keeps changing and your role in the story keeps changing. This is true for everyone on some level: by the time you finally get the old life figured out, the new life has reached up to get its hands around you, it already has you in its grip, and it’s setting you down someplace you’ve never been before. Maybe some eerie and denatured version of the past, or maybe an illusion of the future. You’re always starting over. So what choice are we going to make this time? Because it’s not the same as it was.