The Patient Is a White Gay Man: A Conversation with Jonathan Alexander

JONATHAN ALEXANDER came into my life by way of a mutual academic friend who happens to study medical memoirs. In the Noah’s Ark of illness, Jonathan and I are both an obvious and an odd pair. We both had strokes at a relatively young age. We’re both queer. He’s white; I’m Korean American. We both love David Hockney. We both hate self-pity. These are things I learned via Stroke Book: The Diary of a Blindspot, Jonathan’s 2021 memoir of his eye stroke and recovery therefrom, a paperback edition of which has just been released by Fordham University Press.

Stroke Book is, of course, more than just a memoir about a stroke: it’s also about the building, destruction, and reconstruction of identity. If one thing changes in a person, what else then changes? What remains constant? Jonathan had an “eye stroke,” and his book ironically points an unblinking gaze at self-identity, social identity, and legal identity before, during, and after illness. The eye stroke then becomes this “I stroke” of a book that I found deeply nourishing and humorous, reminiscent of Han Kang’s The White Book (2016) and Maggie Nelson’s Bluets (2009).

I interviewed Jonathan about Stroke Book and the choices he made in transforming an experience into a narrative. Discussing how homophobia has affected him as well as its parallels to the stroke he suffered, he was as self-deprecating and witty as the book, his mind expansive. We can all find illumination in his responses.

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CHRISTINE HYUNG-OAK LEE: This book is not just about your “eye stroke” but also about your “I stroke,” in that the event forced you to become a subject and, consequently, to reassess who you had become. How did the stroke change you? Has writing this book changed you?

JONATHAN ALEXANDER: Oh, in so many ways, as you can imagine—actually, as you can understand from your direct experience writing your own book about a stroke, Tell Me Everything You Don’t Remember (2017). I’m not sure any of us set out to write books about these experiences, because we aren’t ever expecting to have the initial experience of the stroke in the first place.

When it happened, on a vacation in Colorado with me waking up in the morning and realizing I’d lost a chunk of vision, the last thing I thought about was writing about the experience! It wasn’t long after I got back home, however—as I was adjusting to what a neurologist called my “new normal,” another called my “new baseline”—that I started writing about what I came to call my “health crisis” or “incident.” I want to say inevitably started writing about it because I had turned to writing at critical, life-changing moments in the past, such as after my father’s death while he and my mother were dislocated during Hurricane Katrina. I remember a friend telling me right after he died that I would be writing about this experience for the rest of my life. And she’s been right.

What is it about us as writers that we are constantly, almost obsessively, turning our experience of the tragic, or even just the mundanely unfortunate, into writing? I almost want to say that writers are those who use words to pick at their scabs. Has that been your experience, or am I just alone in this neurotic engagement with writing?

For me, it’s about finding lessons in what initially appears meaningless—although it’s more than “therapeutic writing,” with which my personal journals are replete. Therapeutic writing is writing about the trash, transforming it into something useful to myself and others—like compost. Which is what you did too.

Indeed! But back to your question. Yes, the stroke absolutely changed me. (I love the idea of “I stroke,” by the way! Stealing that.) And yes, the writing of the book also changed me, but in ways I think I’m still discovering.

As you well know from your own experience, a stroke can change everything. I’d never been more conscious of my mortality, and I carry with me to this day, almost five years later, a strong, daily awareness that there are things in my body that can come loose and kill me—or if not kill me, then leave me maimed, damaged, more damaged than I already am. And how lucky I feel, too, that the damage wasn’t as serious as it could’ve been. The blob of cholesterol could’ve gone to my brain, wreaking all sorts of damage, or it could have become blocked in the retinal artery as the artery enters the eye, blinding me completely as opposed to partially.

As is, the damage is substantial. I no longer drive, and I have had to adjust to navigating crowds and unfamiliar spaces. It altered my sense of precarity in general but also in specific ways—such as how I occupy space in a room with other people, hold a book to read, experience being startled—people or things seem to “come out of nowhere” because they pass first through my blind spot. All of these daily experiences are the fallout, the persistent reminders of the bodily damage I suffered.

But the damage is not just to the body. It’s also a kind of psychic fallout, one connected to how I feel and how I feel my way through the world, and how I have learned to think and feel myself in relation to the world. That’s where my writing led me. I couldn’t imagine my stroke as just a material thing that happened to me, an accident of the body. Sure, sure, accidents happen. Something, somehow, kills us in the end. But each end, or near end, might have a genealogy, a history we can trace. At least that’s what I want to believe as a writer—that however accidental or coincidental something might seem, it might also be traceable, a consequence of some complex set of earlier occurrences, however initially opaque, that can be rendered clearer with careful scrutiny, patient inquiry.

“Clarity,” indeed. I wanted to know why this had happened to me—the seemingly eternal “Job question”: “Why me, Lord?”—and I believed writing might help. Maybe not at first. When I started writing about the stroke, I was mostly just taking notes, short notes, diary-like, about what I was experiencing in the aftermath, such as having to learn anew how to navigate walking down a short flight of stairs. And then I started to write, again diary-like, about waking up partially blind in Colorado and my stay in the hospital, wanting to document the experience, capture some of the immediacy of it. But the diary entries, such as they were, seemed to lead to more questions: the Job question, for sure, but also a creeping realization that events in my life were more interconnected than I’d realized, and that probing those—picking at the scabs?—might bring me to a more interesting way to tell the story about the stroke, maybe a more meaningful or “truer” way.

For example, as I started writing and reflecting on how the nurse in the hospital didn’t want to identify Mack as my husband—I mean, what the fuck! It was 2019, gay marriage had been legal nationally for four years, and this was still an issue? Thinking about that moment in the hospital, lying partially blinded, my blood pressure skyrocketing, petrified that more might come loose in my body and kill me … well, it wasn’t a big leap to realize that a lifetime of the experience of homophobia, in both such subtle ways and at times far more drastic, crippling ways, had likely created somatic responses, such as high blood pressure, as well as contributing to the self-comforting of poor eating habits and higher cholesterol—all of which made a stroke seem, in retrospect, like an inevitability. The Job question became, then, through my writing, a kind of investigation or inquiry into my phenomenological experience as a queer man living in a culture that, whatever “progress” we may have made, is still inhospitable to queer people.

Did that writing change me? For sure. I think it’s made me, uh, more angry? (Imagine me laughing here.) I mean, probably not a good thing for my blood pressure, but the writing allowed me to feel, as perhaps never before, the cumulative effects of a lifetime of living in a homophobic culture.

And yet, for all that anger, there is so much playfulness in the narrative, not only in the timely subject shifts and blank spaces but also in the explicit wordplay: for example, the way you ponder how you experience time differently as a queer man, concluding with the words “Nonnormative time. Nonheteronormative time.” Another example is when you consider the “confluence of factors” that produce an eye stroke, describing yourself as “unique. Perhaps even an outlier. Something rare. Queer.” If I understand correctly, you have focused on academic work—a genre in which humor is rare—for some time. Was it liberating for you to write so playfully? Humor is an amazing coping mechanism; at what point in your recovery could you “play” with what happened?

I love this question because I am so glad you see the humor in the book. I worry at times that a lot of my creative nonfiction and memoir can come across as super serious. Hell, just look at what I was just saying, all that stuff about homophobia and anger. See? Serious. And yet, yeah—I have a deep-down disposition that is playful, snarky for sure, but definitely playful, even exuberantly so at times. That can’t help but come out in my writing. It’s definitely a coping mechanism, but your question is prompting me to think that there’s more there, for me at least.

I love wordplay but also mimicking oral storytelling, with its pauses and emphases, its drawing-out of words and phrases, building anticipation. Some of that gets lost in the writing, which is why I love reading the work out loud, which sometimes allows people to “hear” what I’m writing in ways that get lost on the page. (I think that makes me a bad writer!) So, when you read, as you point out, “I am unique. Perhaps even an outlier. Something rare. Queer”—yes, that’s funny. Or it is to me, and I’m glad you find it playful.

Of course, I’m not an outlier, or even all that unique. For me, the periods in that sentence create a stuttering, even a groping, mimicking the desire to be unique when what has happened to me is, frankly, rather mundane in the larger scheme of things. Perhaps spectacularly mundane (punning there!), but ultimately just a small problem occurring to one person in a world of pain, hurt, and suffering, so much of it avoidable but perversely inevitable because our species sucks. So, some of the language in Stroke Book is playing, as in the sentence you point out, with my own need to self-aggrandize in a moment of pain. I get the need, I get my need, to feel oneself special in a moment of real precarity, but I also need to mock it a bit, poke at it, put it in its place, as it were.

Did you encounter something similar in your own writing? I mean, your title alone, Tell Me Everything You Don’t Remember, has its own lovely playfulness, gesturing perhaps to the contradictions arising out of the experience of a stroke, the kind I just spoke about.

It took me a long time to play with it. Play is a seriously underrated element of writing. Also, humor is a critical component of who I am, and one my father nurtured. He had/has rage issues. But if you could throw in a good joke, his anger immediately dissipated. It’s a form of survival. And humor, as you say, mocks something and puts it in place. But also, I put humor into my memoir so I could not come off as self-pitying. Maybe that has something to do with being in marginalized groups, that we can’t complain. Maybe that informs your humor too?

Totally. I worry, actually, that some of the humor is a learned self-deprecation, a habit of deflecting attention because, hey, I don’t want to be in someone’s homophobic spotlight! Or I want to show that I can make fun of myself too! For me, it’s also a class-based response. Growing up working-class, we learn to not brag about ourselves, to stay humble and sidelined. I think that comes through sometimes in self-deprecating humor.

With that said, though, there’s something bold about writing a memoir, about saying that your experiences are significant enough to merit others’ attention, not to mention spending this much time writing about your own experiences. Perhaps the humor is, as you say, a way to deflect a little from both the accusation of self-pity and the self-absorption.

But with that said, I think both of us think about memoir as not ultimately about self-absorption but about a developing self-awareness that is so intimately tied to others, and to structures and systems, that the meditation of our experiences becomes a way to understand our interconnectedness with the world, possibly also a way to start critiquing some of the less desirable, less equitable and ethical dimensions of those structures.

Speaking of structure, deciding the details to write is a critical part of a book’s narrative structure. And memoir is very much about this curation. I had so many “meta” moments throughout your book because of your choices. For instance, you include the doctor’s dictations from your patient files, one of which begins: “The patient is a white gay man.” This is followed by your analysis of why these facts may be so important. You include a part about the Stroke Belt, which is an interesting digression. And I loved the collage and David Hockney vignette, which is overtly linked thematically and symbolically via the eyes in your art piece. What made you include these? Did you find yourself in revision going back and explicitly linking some of the “chapters” to the structure of the book?

Curation is absolutely right, and I like its resonances with the art project of the book too. The art came pretty much entirely from my pandemic experience. I had the stroke in August 2019, and we were all in lockdown a little over half a year later. I had been working on the book, writing the bits and pieces, which then, of course, had to be organized, because while I call it a “diary,” the book wasn’t written in any kind of chronological order. Bits and pieces came to me, and as they accumulated, I experimented with piecing them together in different orders. I was doing this shuffling and piecing together during the early days of the lockdown when I also picked up a set of old colored pens and started doodling. I love art and reading about artists, so I figured that, since I had some time on my hands, I might as well try my hand at making some visual art.

What most struck me about the artists I was reading about was their interest in the “accident,” in how the paint or other medium does something that they weren’t expecting it to do but that turns out to be a lot more interesting than what they had intended. Hockney talks about this, as does Francis Bacon—two queer artists I admire very much. So, during the lockdown, experimenting with visual art, especially allowing myself to play with the accidental, seeing what just happens, became an important part of, well, playing.

In the aftermath of my health crisis, I was learning how to experience myself in a more embodied way, unlike with writing, because working with pencils, pens, paints, glue, and other such tools can be a bit messy. You end up with bits of paint everywhere! That was actually a great comfort, not just during the lockdown but also because of my stroke. Having lost some visual acuity, and having in some ways felt betrayed by my body, like it was trying to kill me, I was relieved to be experiencing my body in fresh and interesting, even playful ways. Making the art helped me learn to see my body as not just something threatening to me (when’s the next stroke?) but also as capable, again, of play, experimentation, discovery.

I wanted that sense of my body being in the book, so including some of the collage work seemed a way to “show, not just tell,” what was happening to me. But it’s also the case that if you work with collage, you are laying down bits and pieces, then reshuffling them and putting them in different orders—an almost exactly parallel experience to what was happening with the diary “entries” that I was shuffling and reordering. So the art and the text seemed to be reflecting one another in ways that I thought might be of interest to readers.

And finally, what is the thing you wanted to tell the world with this book? What knowledge or emotion or message do you want a reader to walk away with after reading Stroke Book?

Hmmm … Maybe that the things that happen to us, such as strokes or other kinds of health crises, are experiences of being human, part of the condition of our humanity, but also just as likely a part of larger social, cultural, even political structures that don’t have to be the way they are. Your story might not be like mine, but I bet that, for many people, a health crisis (hell, even the pandemic as a whole) shows us where the soft spots are in our networks of care, of care for each other and of care for ourselves.

More critically, I view my health crisis as the result of a long history of living with homophobia, various anxieties and pressures given to me by our culture then manifesting themselves in my flesh as disease, problem, damage.

I found myself writing in a recent scholarly book called Writing and Desire: Queer Ways of Composing (2023), a book I couldn’t have completed without having had my stroke, that what we should want now, more than anything, is to feel ourselves entangled with one another and with the planet itself. I think this is the kind of desire we need to cultivate as a way to think, feel, and be more consciously, intentionally, and, hopefully, ethically attuned to one another.

I think my understanding of desire got clarified in the writing of Stroke Book, as well as my need to understand how I had already been entangled in social and cultural and political structures, how those structures had affected me, and how possibly—just possibly—greater consciousness of such entanglements might help us tread more carefully with one another, handle ourselves and each other—and our world—with more care. That’s the hope, at least—the hope I have been cultivating since my stroke.

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Jonathan Alexander is the author, co-author, or co-editor of 22 books, including the Creep trilogy, which consists of Creep: A Life, A Theory, An Apology (finalist for a Lambda Literary Award, 2017), Bullied: The Story of an Abuse (2021), and Dear Queer Self: An Experiment in Memoir (2022). Other recent books include the memoir Stroke Book: The Diary of a Blindspot (2021) and the scholarly work Writing and Desire: Queer Ways of Composing (2023). Alexander is Chancellor’s Professor of English and informatics at the University of California, Irvine.