Long before I wanted to admit it out loud, or even just to myself, I knew my grandfather was losing his mind. Not in any sort of crazy sense. Just that literally, he was unable to remember where he had put certain pieces of knowledge, tidbits, and fragments of information. First little things, then the date, and finally, now, who the person was talking to him on the phone. This time, that person was me.
I wrote that opening paragraph in 2006, during my fourth year at Columbia University’s College of Physicians & Surgeons, while taking an elective course in narrative medicine. The central idea of narrative medicine is that the construct of the illness narrative — a patient’s story of illness — should be viewed and analyzed and responded to not as one does with a medical chart, but rather as if it were a novel.
My specific elective had four components: a class in literature, with close readings of specific examples of narratively unique literature (such as Slow Man or So Long, See You Tomorrow); a course on reading illness narratives (such as Wit or The Cancer Journals); a class in which we studied the construction of illness narratives by writing our own, as in the paragraph above that I wrote about my grandfather; and a course on creative writing. The aim was to teach us where aspects of medicine and narrative writing overlapped.
The field of narrative medicine arguably owes its existence to one woman: Rita Charon.1 Charon, an MD and PhD, cofounded Columbia’s program — one of the first in the country — and even coined the term “narrative medicine” while working on a paper that was later published in The Journal of the American Medical Association. She says it “sounded familiar like nuclear medicine or internal medicine…the work of the doctor.”
She’s now the executive director of the program in narrative medicine, running electives like mine and a master’s degree program, while also lecturing nationally on precisely how narrative and story can and should be the concern of medicine. But I had trouble early on understanding how the two would integrate fully. The illness narratives we read or wrote had clear resonance to my clinical work, but the more purely humanities-based elements of reading or writing literature seemed further away.
It is precisely this distance that Charon tells me she wanted to close, but not in the way that others had. She gives the example of Milly Theale, the protagonist of a Henry James novel, and how literary-minded doctors such as herself have examined what might have caused the character’s death. Charon did not want to use modern medicine to help interpret literary patients; she wanted to use literature to help modern medicine treat real ones.
She explains, “I was squarely interested in how the skills and knowledge derived from humanities training could transform clinical practice…The better you can perceive your practice, the better care you can deliver.”
It was this self-perception that I was still having trouble with. As Dr. Charon explains, “the best way to perceive the world is to represent it. It is when one writes…that one commits oneself to seeing and can show oneself what one has seen.” And outside of dry, medical description, I was not trained to accurately represent the world. But that was all about to change.
I was about to learn to write.
The room shook a little from the knocking. It had sat, alone and still since yesterday’s meeting. The night had been cold — someone had forgotten to pull the blinds across its window — its eye on the world. While the openness was nice, there had been a chill in the air, growing throughout the night. Now it was morning, though, and the sun had begun to enter the room; it warmed quickly from the good, clean, strong light of day.
These are the first few sentences I wrote in the creative-writing portion of the program. We were asked to compose a scene from multiple viewpoints; this was from the room’s perspective. The exercises we were assigned were odd and difficult, stretching a subjective portion of my brain that had been idle for years.
We also read (and later wrote) short stories, a genre harder than longer-form fiction because the space constraints force an economy of words and character. This was hard work, work I was not used to at all, and a task that didn’t seem to me at that point to have any bearing on my eventual medical practice. But I enjoyed the mental workout, to my surprise.
My writing instructor, Nellie Hermann, was working on an MFA in creative writing at Columbia at the time. (She now has her degree, is a published author, and is the creative director of the program at Columbia.) When we spoke recently, she says she wasn’t surprised that my classmates and I enjoyed ourselves: “Getting to work with so many different people who, at least on the surface, don’t think they have anything to do with writing or creative work — and then seeing them get excited about what they can do; it has only confirmed what I suspected.”
That it was simply creative work was a big part of my excitement: it was empowering to create something wholly new. Of course, as a beginning writer I was influenced by what I had read. (I still am.) But the experience of writing something no one had ever read before — at least in those exact words — was exhilarating. Even better was the ability to shape and influence the reader. Through writing, we tell a story not just to the void, but to another person.
One of my assignments was to write from five perspectives a scene of a man tripping while getting off the bus: different viewpoints, different literary styles, different narrators, and so on. Nellie said, “I can hear the hooves on the cobblestones” about a version I told through an 18th-century narrator’s viewpoint, and “LOL” about one told from the view of a cat. I knew I had created worlds that I could fully inhabit because I did so when I wrote them; but it was altogether different to have proof that the reader could live there for a moment as well.
The literature we read led us to inhabit the world of the author, the story exercises we wrote led us to build worlds for others, and the illness narratives we read were by patients trying to bring us into their world — to hear their cries, to see their scars, and to feel their pain, and in so doing, to understand.
End at the very beginning
It was my first time going to the ICU, and I couldn’t even figure out how to get in. It’s got these giant swinging doors, motorized so you can just hit a button and they’d open, ready for the stretcher, ready for the patient who might be dying. Only problem was, silly me, third-year medical student, I couldn’t find the button. I must have stood there for a full minute before the doors finally swung open. Somebody was coming out. Lucky them.
That was the beginning of the two-page essay I wrote to answer an assignment from Nellie — our final one of the class. She had invited us to apply all we had learned to a personal story from our own experience as doctors-in-training. That day was certainly personal.
I was in the ICU to see a dying man; not much later, he was the first patient of mine who died. I felt helpless. My patient had been brought to the ICU and would only be leaving via the morgue, and there wasn’t anything I could do to stop it. As a doctor, that is the worst feeling in the world. “I will remember that I treat a sick human being,” says the Hippocratic oath. But we couldn’t treat him; nobody could.
It was in writing the essay that I finally processed and understood my helplessness, starting with my inability to open the door. In writing the essay, I finally understood that the family, who I was certain blamed us all, in fact recognized our helplessness as kindred with their own. In depicting it in the essay, I finally understood why my patient’s wife greeted me with a tremendous, sobbing hug. I finally understood what I was learning.
We write to understand and process stories of not just the world but our world, and in so doing we learn. We learn how as physicians we can help the families of dying patients. We learn how to talk to families who refuse vaccines about the very real risks associated with such blatant medical misinformation. We learn how to give ourselves a break when we’ve done everything in our power to help those we’ve vowed to heal and make well.
In my own story, I finished that elective with grand aspirations to write more. Then life intervened: residency, fellowship, and children of my own. But when things settled down for me as an attending, I began to pick up the virtual pen again. To those doctors who say they can’t write, I say we can — we must. For there is always more to write, and always more to learn — about our patients’ stories, about our own, and about how to practice medicine.
Illustration by Adam Koford.
Similar but alternatively named fields include medical humanities, humanities and medicine, and medicine and literature. ↩
Saul Hymes is an Assistant Professor of Pediatric Infectious Disease at Stony Brook Long Island Children's Hospital, not far outside New York City. When he is not caring for children with infections, doing clinical research on antibiotics, or teaching the next generation of doctors, he greatly enjoys writing, and would have been a journalist or computer programmer in another life. He posts infrequent medical musings.