On Narrative Medicine and Finding a New Language For Illness

“You know, you could take a medical leave.”

The tall stacks of yellowed paperbacks around the borrowed office seemed to lean in closer as my professor spoke to me.

“If I don’t finish now,” I responded. “I don’t think I’d—it’s hard for me to see how I could come back.”

She worked the skin under one ear with her fingers, swallowed, and nodded quickly.

*

Halfway through my MFA at Columbia University I was put on chemotherapy for the autoimmune disease that I had struggled with for many years. After a long hospitalization over the Christmas break I was still missing workshops. My body was not responding well to the treatment, and it often felt like my stomach was brewing battery acid. I had a piece of paper that said THIS IS NOT A BILL, but the $30,000 in red ink was just as menacing as the real thing. And yet, it wasn’t the illness or the threat of debt that made me worry about returning to my degree. As far as fears go, those were both old friends. No, what worried me was that words had started to gutter in the back alley of my mind. Of the many deprivations that illness has enacted on me, perhaps the most unexpected and the most devastating has been the way that my sense of language dulled almost to the point of disappearing from my life.

Pain and illness are notoriously difficult to verbalize. Virginia Woolf once wrote that the “merest schoolgirl when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to doctors and language at once runs dry.” While it’s true that, compared to love, literature has little to say about disease, the greater threat is that, as Elaine Scarry writes, “Physical pain does not simply resist language but actively destroys it,” putting many people almost in a pre-verbal state. And this destruction can rob patients of a core facet of what it means to be human: the ability to communicate to others, and oftentimes ourselves, the fundamental aspects of our experience.

Alphonse Daudet, one of several French literary syphilitics, wrote a poignant expression of his new limitations in his debilitating later years: “My brain is still holding together, but my capacity for feeling is losing its edge. I am no longer as good as I was.” Sitting in that office with my professor I worried that I was also quickly losing my capacity to feel. Where once I heard music in the way that words moved, now I was stunned by how quiet they were. How they sat squatly on the page, only to blur out when I tried to read them.

I taught an intro to writing course, and in my first class of the semester I often spoke of the power and necessity of words. If our ability to think and feel, I’d say, is directly tied to our ability to make our sensations legible to ourselves, then working on this craft is a way of excavating everything you’ve ever left unsaid. Each time I repeated that promise, that provocation, it rang more true to me. But like Daudet, I found myself feeling excluded from the glory. For me, language, to borrow the Woolfian phrase, had run dry. And I knew what that meant. Every second thought seemed to scream: “I am no longer as good as I was.”

In her book, The Collected Schizophrenias, Esmé Weijun Wang writes of trusting the oracular in times of illness. She finds structure in the spiritual and extra-sensory. Wang uses a number of different terms for the space to which her psychosis gives her access: the nonrational, the liminal, the mystical. The specific name matters less than the reframing that this terminology provides. What’s important is that she de-stigmatizes the mental territory her illness allows her to breach, and that she finds the means to “wrangle sense out of the senseless.” As she writes: “To say this prayer—burn this candle—perform this ritual—create this salt or honey jar—is to have something to do when it seems that nothing can be done.” For Wang, “Tarot and oracle cards offered a decent framework from which to hang a fractured existence.” Devotion, regardless of its target, can lend stability in times of duress. Without her sensitivity for divination I committed myself instead to my students. But I needed to change my approach.

I spoke to my teaching advisor and asked if I could instruct in the Medical Humanities cohort, which used the arts to dissect health issues. I hoped that if I could better study the pain of others, I might find solutions for myself. The department’s guest speaker for the semester was Dr. Rita Charon, a pioneering physician in the field of narrative medicine. And I offered to introduce her, thinking the responsibility would force me to immerse myself in the work.

Dr. Charon defines narrative medicine as “medicine practiced with the narrative competence to recognize, absorb, interpret, and be moved by the stories of illness.” In reading about this discipline I found traces of everything I felt had been lacking in my own treatment. Narrative medicine seemed to prioritize the patient’s voice in ways no approach to healthcare I’d received had ever done. As Charon reminds us, the process of diagnosis itself begins in language. Usually it starts with a set of questions:

“What brings you here today?”

“What medications are you taking?”

“Where does it hurt?”

One of Charon’s major interventions in the field is to put these initial moments under close scrutiny, unpacking how our medical encounters work to limit responses and strip us of speech. In a conversation with Heidi Julavits for her essay “Diagnose This!” Charon describes her approach to patient interaction more as an invitation, and gives the following example of how she might start the conversation instead:

“I need to know a great deal about your body, health and life. Please tell me what you think I should know about your situation.”

Narrative medicine might be understood then, as an acknowledgment that, as with our writing projects, a doctor’s relationship with their patient should be open to rephrasing, to a changing of the basic language used in order to describe the expressed symptoms of the body, and the priorities and preferences of the patient in terms of their treatment. Narrative medicine accepts that a patient’s efforts to get better “cannot be fragmented away from the deepest parts of their lives,” including the stories they tell “in medical interviews, late-night emergency telephone calls, or the wordless rituals of the physical exam.”

As Charon writes, “Health professionals have to learn to hear the body and the self telling of illness, in whatever forms, dictions, and discourses they find themselves giving utterance to their reality…we must be prepared to comprehend all that is contained in the patient’s words, silences, metaphors…and allusions.” Physicians, Charon argues, must be “aware that the body and the self keep secrets from one another, can misread one another, and can be incomprehensible to one another without a skilled and deft translator.”

Reading these words seemed to provide a source for the blank quiet all around me. Disease, and the ravaging treatment meant to address it, had caused a fundamental disjunction between my body and my self. Secrets, misreadings, and incomprehension flooded the void. But the framework of narrative medicine also showed me how to repurpose that feeling of alienation.

In her memoir, Sick, exploring her history with Lyme disease, Porochista Khakpour writes that, “To find a home in my body is to tell a story that doesn’t exist.” Part of me shares that conviction. One of the criticisms of narrative medicine is that most doctors simply are not capable of providing the level of emotional range and nuance that it espouses. At my most cynical, I believe that too. And yet, this discipline allowed me to think of disease not just as a catastrophe, but also as the formative trials that would permit me to act as a “skilled and deft translator” for other people.

My students are young. They are loaded up on urgency, and often lack the means to express what concerns them. They feel the pressures of each possible future pushing on their chests. And they know what it’s like to be uneasy in your own skin. In essays about maligned desire, blunt encounters with violence, and yes, illness and its aftermath, they consistently impress me with their courage. They self-interrogate, they challenge themselves and they grow. With careful, patient coaxing, they find the euphoria I once felt in naming a problem. They hunt relentlessly for words to pin down a greater understanding of their situation. And they tell me what it means for them to have the space to do so.

I’d like to say that I am a fantastic teacher, but my interventions are minimal. I try to adopt some of the elements that Dr. Charon outlines in her breakdown of narrative medicine. I meet with these students and ask them what they’re looking for. What wound are they addressing? And I listen to them. I try to hear what moves them most. I sit with them as they confront silence. In fact, what I’ve learned is how little prompting we often need to investigate the deep tremors of our unsettled physical selves. But we do absolutely need the prompt, and it must arrive as an invitation.

The classroom allowed me to use my story as one incomplete piece of the common human impulse to find a better home in our bodies. Working with my students allowed me to distance myself from my own case, and focus instead on what Charon calls on us to do: “revel in the inexhaustibility of our combinations and the universality of our relations, our affiliations, our common burdens and gifts.” If illness represents isolation from the body, then why not use that distance to recognize how everyone, at some point, feels unseen and unspoken for in their pain? This is our shared story. It is one worth honoring.