For years, I tried to write the stories: this hospital. That IV line. The numbing gargle, the camera down my throat, the humiliating spinal tap, the cardiologist who told me I would never swim again. There was the nurse who jabbed Heparin into my stomach without saying a word; there was poor CNA Ruben, endlessly emptying my pee tray; there was my ex stealing into the closet where they kept the hot blankets, piling them on my body.
I wrote the stories sobbing into my sleeve at Lisa Jones’ kitchen table memoir class in Boulder, and I wrote them in coffeshops, with snow glimmering out the windows. Later, after moving to Arizona, I wrote them in my MFA, as strange parts of other essays. The essays were scrapped, or those paragraphs were scrapped. I tried again. And again.
Let it be said: I think the telling is part of the healing. It’s an obsessive telling. Or it was for me, both obsessive and healing. Writing illness was a way of pinning down what my body had been through that my mind wasn’t present for; it was a way of laying bare what my mind observed but could not fully access or explain.
After years of this, it became clear to me that penning nonfiction illness narratives meant grappling with a very particular process and set of craft questions. I recall looking at the Ars Medica submissions guidelines some years ago; they noted that illness narratives tended to have a “dense, unprocessed feel to them.” Though the guidelines no longer say this, I’ve always remembered the phrase, for in the phrase I recognized myself. Dense. Unprocessed. My work was unfocused, too long or too short. I finished nothing. The experience of illness seemed so large that I couldn’t conceive of cutting details or sequences, couldn’t conceive of inserting distance. To tell only part of what had happened, it seemed, was to betray the nightmare. But to think one can tell “everything” in a story is to eschew craft; omission is what allows us to focus the gaze.
There are still those stories that want me. These days I let them go taut with their own desire to be told, and this is how I know they will be, eventually. The distance becomes thick. The distance becomes something I can hold, can weave with. But I’ve had to surrender the bare skeletons of the stories. I’ve begun to allow the bones to be shifted out of order—a few told, more discarded. I keep telling.
Bellevue Literary Review was the first literary magazine to emerge from a medical center, and it remains one of just a handful of journals in the country that focus solely on healing- and illness-related work. I caught up with Danielle Ofri, BLR’s editor-in-chief and co-founder, over a series of e-mails, to hear her thoughts on the illness narrative, including both the work BLR hungers for and common submission pitfalls. (Our conversation has been edited for clarity.)
KES: What was the genesis of Bellevue Literary Review, and how is it different from other journals?
DO: The BLR started in 2001. Teaching medicine at NYU and Bellevue, I and two of my fellow faculty members—Jerry Lowenstein and Martin Blaser—had been using literature to with medical students to help foster empathy and improve communication and thinking skills. We’d each been having our medical students write essays and thought about creating a student journal for these writings. But we realized that there was a larger societal interest in all things medical—everyone interfaces with medicine at some point in their lives—and so decided, instead, to create a literary review devoted to fiction, nonfiction and poetry about health, illness, healing and the human body.
KES: How do BLR editors think about the balance between patient-perspective work and physician-perspective work in any given issue? Is there a sweet spot?
DO: We don’t think about that at all. We are really hunting for the best work, and only after we accept it do we get the bios and learn who the authors are. Our reviewers even cannot see the cover letters, so it’s a fairly “blind” process.
KES: The BLR submissions guidelines say you're looking for "essays that reach beyond the standard 'illness narrative' to develop a topic in an engaging and thoughtful manner." What is the 'standard illness narrative'? How do the essays you accept distinguish themselves?
DO: The “standard illness narrative” is a relatively straightforward telling of one’s experience with an illness. While the experiences are usually quite dramatic and poignant, the written essay of the experiences are often not. For an essay to be a great piece of literature, it needs to have more than just the roadmap of the illness. For the BLR, we look for writing that is “transcendent”—that somehow transcends the basic facts of the illness experience to bring the readers fresh insights and perspectives.
We receive many essays, for example, about the experience of cancer treatment. Although each person’s illness experience is unique, these essays often end up sounding very similar. “The Bald and the Beautiful” by William Bradley, however, jumped out at us because he wove in cancer treatment with the watching of daytime soap operas. The premise might sound corny, but in the essay Bradley is able to flip sentimentality onto its side to make us see things differently.
Elizabeth Scarboro in “No Man’s Land” also probed a familiar theme—facing the death of a spouse. But she didn’t shy away from confronting the awkward issue of falling in love again after losing one’s spouse. There was no easy closure nor any pat conclusions—rather the remarkable tension of holding conflicting emotions in one heart.
“Travel of Sound” by Nicholas Destino is another unusual essay. On the one hand, it’s another cancer essay, but Destino dives into the mathematics and physics of sound and time to create a fascinating and truly singular piece.
KES: Do you think a writer benefits from penning the "roadmap" of their illness, as you put it, even if it does not become publishable? In other words, is there value to healing/illness writing that is not "transcendent”?
DO: Yes, I do think that people do benefit from penning the roadmap of their illness. The very act of writing allows people to take a step back and examine their illness from another perspective. Most people find it very helpful, even if it’s never read by anyone but themselves.
KES: What do you get too much of?
DO: We get too much of “what happened when I was sick.” These are obviously very important and serious moments in people’s lives, but they aren’t always good writing.
KES: Do you have a sense of why it's so hard for writers to move beyond the roadmap of their illness into "transcendent" writing? Is this a challenge for accomplished writers, too? Or is this just the particular flavor of BLR's slush pile--writers who, writing on any subject, still might not be ready for publication?
DO: I think it’s a natural instinct for writers, especially at the beginning, to simply tell the experience as it happened. For new writers, it often gets left at that. It may have required so much emotional effort to get the experiences on the page that they feel they are done. More experienced writers may do this as a first draft, but then they go back and try to make that story into something more than just a diary of what happened. This may involve using flashbacks, imaginings, compressing or stretching time, weaving in other topics, etcetera.
KES: I noticed that the BLR submission guidelines specify, "No works with footnotes." What's this about?
DO: This is to avoid academic-type writing. For our nonfiction, especially, we want to be sure the writing is literary—not the type of thing that would be in a technical or academic journal.
KES: So BLR might accept footnotes employed creatively as a craft choice, as long as they are not academic, and are serving the larger goals of the essay?
DO: Our preference is that everything be in the text, unless absolutely necessary. We’re open to any writing that’s excellent. That said, our style tends to lean toward traditional. If there’s an “unexpected structural choice” there needs to be an organic, integral reason for it. If there is, that’s fine. But if it feels too “gimmicky” or overshadows the storytelling, then we shy away from this sort of stuff.
KES: Writing about illness often requires succinct explanations of conditions or treatments. What advice can you offer to writers on managing these technical aspects on the page?
DO: You have to find the sweet spot of conveying the information without having to pull out of the narrative to give a 3-paragraph disquisition on a medical illness. The trick is to embed as much as you can in the narrative or in the dialogue or in some context of the writing. Also, you don’t need to explain every last detail; you can leave a bit in the dark. You just need to convey enough detail so that the reader isn’t lost, but it’s okay to have a bit of jargon or mystery to add flavor—as long as you are judicious. To be sure if you’ve found the right balance, ask a non-medical friend to read the piece and see if they can follow everything without feeling condescended upon.
KS: Shannon Wooden writes that in the illness narrative, there is a “clear climactic moment, but... rather than hinging on a moment of medical success... it rests on self-awareness, culminating in personal changes, calls to advocacy, new displays of strengthened character.” What do you make of this, as both a practitioner and a writer? What is the meaning of the distance between the arc of our treatments, and the arc of the story we tell later?
DO: I agree that the climax of an illness narrative is rarely the medical cure. As an editor, I’m focused much more on the writing—the growth of the protagonist, the deft use plot in service to character development. As a physician, although I’m always thrilled when there is a dramatic cure, most of medicine is not that. Most of medicine is continuing on through the grand “plot” that is life. Medical treatments are part of that, but only a part.
KES: Why is BLR's work so important?
DO: You can get through life and perhaps never need a plumber or a lawyer, but no one escapes interfacing with the medical world. Even if you subsist on kale alone and have an LDL in the single digits, you’ll still end up at some point facing the medical world and human frailty, whether for yourself or with an aging parent or with a child. There’s an existential current that runs within all of us, nervous about how our bodies and minds will fare in this world. The BLR allows for a creative examination of these issues that are always with us, at some level of consciousness.
Kati Standefer writes about the body, consent, and medical technology from Tucson, where she will be teaching in a pilot Narrative Medicine program at the University of Arizona’s College of Medicine this fall. She won the 2015 Iowa Review Award in Nonfiction, and she’s hard at work on a book that traces the global supply chain of her internal cardiac defibrillator. Follow her @girlmakesfire; find her at www.KatherineStandefer.com.
Danielle Ofri, MD, PhD is an Associate Professor of Medicine at New York University School of Medicine but her clinical home is at Bellevue Hospital, the oldest public hospital in the country. She writes regularly for the New York Times about medicine and the doctor-patient relationship. Her essays have been selected for Best American Science Writing and Best American Essays. Her work has also appeared in the Los Angeles Times, The Washington Post, the Atlantic, Slate, the New England Journal of Medicine, the Lancet, CNN and on National Public Radio. Her newest book is What Doctors Feel: How Emotions Affect the Practice of Medicine. www.danielleofri.com.
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