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Field Guide to Falling Ill: A Conversation with Jonathan Gleason
Field Guide to Falling Ill is Jonathan Gleason’s prizewinning collection of essays on disease,
medicine, and humanity. We sit down with Gleason in this interview to discuss the capacity of
language to express, experimental essays, HIV/AIDS, moving beyond medical establishments,
the heart, and more.
Tell us more about the title of Field Guide to Falling Ill.
Jonathan Gleason: The title began as an homage to Rebecca Solnit’s brilliant collection of essays A Field Guide to Getting Lost. There’s a strong tradition in nonfiction writing, especially essay writing, of paying homage through titling. Think James Baldwin’s Notes of a Native Son, a reference to Richard Wright’s Native Son, or Joan Didion’s “Goodbye to All That,” both endlessly referenced and itself a reference to Robert Graves’ memoir.
To be honest, I’m sometimes surprised that the name stuck, but it continued to feel right for a few reasons. The idea of a field guide points outward, away from the self. These essays are quite personal at times, but I am rarely satisfied with my own writing when it is purely personal. I want to see the self-interacting with and changed by the world. I’ve been thinking recently about these lines from Ellen Bryant Voigt’s poem “After Keats”: “If truth is not a thing apart from me, / then I don’t want it.” The self is important. Sometimes the self is the only domain over which we can claim total authority, even for as little as we know about ourselves. And I’m happy to see often sexist pejoratives like “naval gazing” being reclaimed or rejected. And yet I’m not wholly satisfied with the self as the be-all and end-all of my writing.
Another reason is that a field guide suggests an attempt to look at something wild and loose in the world. It’s an attempt to neatly organize that wildness, but beneath that attempt is an acknowledgment of bristling boundaries between plant and animal species. It mediates between the human need for order and nature’s ungovernability. As I lay out in “Inheritance,” the first essay in the collection, I wanted to move beyond medicine and medical establishments. I wanted to look at illnesses out in the world, undergoing the messy process of being shaped and defined. The physical landscape these illnesses populate is the body, but they exist in a wider landscape, one made up of history, culture, politics—all the abstract ideas that shape us. I wanted to acknowledge that landscape as well.
Language, translation, and word choice are recurring concerns in Field Guide. What were some of the challenges of writing about health and illness while working within the limitations of language that you describe?
JG: Medicine is made up of a confluence of many different systems, each of them vast and endlessly complicated. There is the body itself, with its billions of biological processes; there are the layered bureaucracies of hospital administration, health insurance, and broader health care policy; and then there are the unique, irreducible, and subjective experiences of patients themselves. Language struggles to adequately represent any of these systems in isolation, let alone their overlapping Venn diagrams. In this way, a major challenge of writing about medicine is the same challenge doctors and medical professionals face every day: trying to respect the unique experience of patients while working to represent a shared and objective reality. As a writer, I am also trying to render these experiences and systems in a way that readers can absorb with the same clarity and immediacy as the patients themselves.
This challenge was constantly on my mind as I worked through the essays in this book, but it was perhaps most acute in the essay “No Harm,” which is about the trial of a doctor accused of hastening the death of dozens of his patients. In that essay, the legal systems of the courtroom, the bureaucratic systems of hospital administration, and the surprisingly complex systems of collapse that a body experiences during death all became wickedly tangled. I felt deeply the limits of language—or at least my limited ability to wield it—in that essay. But I’m a little bored by projects that simply point to language’s shortcomings and say “look.” I am also rarely satisfied with the idea that language can’t do something. Maybe, indeed, it can’t do some things, but I come to writing to see a new capacity, one I didn’t even know writing had. In that essay, I tried for as much clarity as possible, and I do point out a few interesting limits of language. But I also tried to overcome those limits. I reached for a kind of mimicry in some passages by replicating the dizzying sense of vertigo and disorientation that I experienced listening to the trial. If these systems were going to hopelessly obscure one another, I thought, at least I could make the feeling of absolute overwhelm palpable. I could use the very limits of language to replicate the felt experience of the trial. I hope, on the other side, that I produced something that reckons with these overlapping systems in the best way I could.
Your essays move between emotional, personal stories and historical and scientific research. What was it like blending those modes of writing? Did they feel in tension with each other, or would you say that they informed and strengthened each other?
JG: I’ve always been a writer who is as interested in information as I am in narrative. In fact, some of my favorite writing comes in the form of seemingly dry, objective information, arranged and layered with such intentionality that it provokes deep emotion. I’m thinking here of the opening paragraphs of John Jeremiah Sullivan’s essay “Michael” or basically anything by Benjamin Labatut. So I’ve never felt that historical or scientific context is inherently in tension with telling emotional and personal stories.
That doesn’t mean modulating between these forms of writing is always easy or successful, though. Switching modes is nearly always a risk. It’s disruptive, and readers—me included—love to be lulled along at the same pace and tone, through competent consistency. Ultimately, I think it’s a risk worth taking because, when done successfully, these two modes can enhance one another.
During the early stages of writing many of these essays, I would sense a correspondence between stories and pieces of information. It wasn’t always clear or obvious why, but I could feel that certain narratives wanted to live alongside certain pieces of research because they had something to say to each other. It was only through time, craft, and trial and error that I would figure out why and how these different modes informed one another. These discoveries—the why and the how, the content and the structure—often occurred in tandem. In the end, these essays survived where many others didn’t because the narratives and research worked together, informing each other, and generating a set of knowledge that neither could produce on their own.
Many of your essays take on experimental forms, such as “Circulations”, which is structured around the anatomy of a heart. What did your writing process for these essays look like, and how did these essays come into their final form?
JG: I actually reference this essay in some of the workshops I teach as an example of leaning into a “gimmick.” To be clear, I maintained the experimental form of this essay because it ended up being a lot more than just a gimmick, but that is how I thought of the structure at first.
I’d worked on this essay for several years. I wanted to write the kind of robust, formally traditional essays that I saw serious writers producing. But nothing was working. The different narrative threads wouldn’t live together harmoniously, and the research seemed to constantly interrupt any kind of narrative propulsion I was able to generate. In a fit of frustration, I just started trying things. I cut the essay up and moved the paragraphs around as short vignettes and put them under different structures in the heart. In retrospect, I acknowledge that my subconscious may have recognized something my conscious brain didn’t. But at the time it really did feel like the most transparently flimsy attempt to be lyrical and experimental.
I kept going, though, thinking I can always change it back later, and in the process something happened. I realized that the narratives and research I was attempting to braid together—the tragedy of Anthony Stokes, the story of my mother’s heart attack, the history of race and organ donation—were interacting on a more associative level. Rather than competing for attention or interrupting one another, each narrative thread had the flexibility to resolve and reemerge like motifs in a piece of music. Even the structure of the heart began to feel essentially connected to the more metaphysical themes of circulation and interconnectedness—not just of blood in the body, but of organ donations between people. Of course, there was a lot of editing and finessing of the essay after this initial switch to a more experimental form, but the major breakthrough started by just trying something I thought was a little ridiculous, and then realizing I had been trying to funnel content into a form that it was resisting.
Many of my essays with nontraditional forms have followed a similar course: a period of frustration and resistance to a traditional form, followed by a period of acceptance and expansion as the work finds its final shape. I just try to make sure that any experimental form can justify the demands it’s making on the reader, rather than performing some kind of experimentation just for the sake of experimentation. In the case of “Blood in the Water,” an essay framed as a series of letters between me and Gaëtan Dugas (the man labeled Patient Zero of the AIDS crisis), the epistolary form allowed me to create a kind of intimacy with Dugas without claiming to know him and his internal world more than I can.
Meghan O’Rourke writes that your work “reminds us [that] illness is also a way of knowing.” Could you elaborate on the kinds of knowledge that illness makes visible that health cannot?
JG: I talk to my students sometimes about experiential ways of knowing, or ways of learning about the world through interacting with it rather than simply studying it from afar, filtered through a screen or a page or someone else’s consciousness. There is nothing wrong with those ways of knowing. I love spending time in another writers’ consciousness, but there are both practical and romantic reasons to pursue experiential ways of knowing. Having the experience of say, a rib removed, gives you the kind of rich sensory detail and idiosyncratic specifics that might be hard to imagine or gather through research only. Even if you do manage to gather those details, they’re not focused around a single locus of experience—the self. So practically, experiential research makes for a richer and smoother integration of information into your writing.
But there is also a kind of knowledge you simply can’t gain except through experience. I’m thinking of that famous thought experiment, Mary in the black and white room. Mary can know everything about seeing the color red—the structures of the eye, its neurological connection to the brain, the wavelength and frequency of red light—but until she steps out of the black and white room, she does not know what it’s like to see the color red.
In the same way, illness grants us a kind of immediate, tautological knowing that is impossible without being ill. We can know everything about a particular illness. We can even read brilliant, empathetic, and masterfully rendered memoirs and essays about what it feels like to live with a particular illness. We can, in other words, get really close to the experience itself. And still experience enables a kind of knowing that is impossible through any other route. Susan Sontag famously calls illness the “more onerous citizenship,” but if there is a consolation prize to that citizenship, it is this way of knowing, one that connects us to nearly every other person who has lived or will live.
Among the most striking pieces in Field Guide are “Blood in the Water” and “Gilead,” which examine HIV/AIDS and intertwine their historical narratives with your own experiences. What lessons—cultural, sociological, medical, or otherwise—from the early response to AIDS do you believe remain most relevant today?
JG: The most immediate lesson of these two essays is that HIV/AIDS is still with us, even if its nature has changed. We often cast HIV/AIDS as a historical relic, but it is with us both culturally and as a medical and biological reality. People still become HIV positive. Some of them, occasionally, still die of AIDS related causes. And nearly all my friends take medication (PrEP) daily to prevent HIV transmission. This has become part of the background static of our lives, but occasionally, as in these essays, HIV become incredibly salient once again.
Both essays narrativize a process of discovering just how much HIV has mediated my relationships and affected my internal state. In “Blood in the Water,” I spiral into a well of anxiety over the possibility of becoming HIV positive. In “Gilead,” a former partner and I are kept at arm’s length physically and emotionally due to my inability to easily access PrEP. Beyond medical and biological facts, these essays are also about living in the chronic era of the AIDS crisis, the residual effects of past on the present, and our responsibilities as people living in that chronic era.
Fear and anxiety are enormous parts of the residue that the acute period of the AIDS crisis left behind. To me the deeper lesson is about fear and the way it can become a weapon to use against others, even when we don’t intend to; how what seems like prudent self-preservation, can easily slip into isolation we enforce on others; and all the ways this fear ultimately corrodes and damages us personally. Because, in the end, it wasn’t just my inability to access PrEP or the avarice of pharmaceutical companies, that put distance between my partner and me; it was also my unfair, if understandable, anxiety around his HIV-positive status.
“Fear is the cheapest room in the house, I’d like to see you living in better conditions,” Hafez wrote. I came back to this notion often when writing, how it formulates fear as something that leaves us worse off. We can point to the fact that these fears emerged for practical reasons or that they are still culturally enforced and even rewarded, but we have a responsibility to each other and ourselves to live better.
Jonathan Gleason is an award-winning writer and a lecturer at the University of Chicago, where he teaches creative writing. Meghan O’Rourke is the judge for the Yale Nonfiction Book Prize and the editor of the Yale Review. Her books include the New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness, which was a finalist for the National Book Award.
The post Field Guide to Falling Ill: A Conversation with Jonathan Gleason appeared first on Yale University Press.
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