Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

Ellen O’Connell Whittet ponders “The Narrative Messiness of Chronic Illness” in a recent piece in Ploughshares. O’Connell Whittet acknowledges that illness narratives may be challenging to show in scene and that “suffering… doesn’t always have a satisfactory ending.” Yet, she notes that illness memoirs, such as those of Paul Kalanithi, Lucy Grealy, Jean-Dominique Bauby and Porochista Khakpour can be particularly engaging, “turning the story of an ailing body into a work of art.”

Bauby, who suffers from “locked-in syndrome,” tells a grueling story without a tidy ending. O’Connell Whittet grimly concludes one tragedy of his chronic illness narrative is that he “cannot… count on getting well.”

O’Connell Whittet recognizes the importance of defining a diagnosis to Porochista Khakpour in her memoir “Sick.” When Khakpour “laments to her acupuncturist that she is still without a diagnosis, her acupuncturist asks, ‘does it need a name?’ But without a name, Khakpour cannot pinpoint the words she needs to convince us, or herself, of the extent of her suffering.” How important to suffering are the words we use to define illness? Does having a specific diagnosis validate that suffering, to ourselves or to others, in a different way?

O’Connell Whittet recognizes “Khakpour’s refusal to give us order out of illness’s chaos” and eventually determines that “[r]eading accounts of chronic illness allows us to embrace the ambiguity of the body and our experiences within it.”

Writing Prompt: Have you read a chronic illness memoir that turned a “story of an ailing body into a work of art?” Think about a particular part of that book or essay that was most enthralling or enlightening. What did you learn? How did it affect you? Did the structure mimic “illness’s chaos?” Write for 10 minutes.

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Narrative Medicine Monday: Lessons in Medicine, Mortality, and Reflexive Verbs

I “met” Dr. Robin Schoenthaler through an online group of physician writers. Schoenthaler has been universally encouraging to our growing community of novice and accomplished writers and offers practical and helpful advice. Her kind of wisdom and support is so needed in both the literary and medical worlds.

This article by Schoenthaler, published in the New England Journal of Medicine, describes her use of Spanish during her medical training in Southern California. Schoenthaler learned much of the language from her patients, notably a “young woman named Julia Gonzalez” who, admitted with acute myeloid leukemia, taught the young Schoenthaler “considerably more than Spanish nouns and verbs.” After several rounds of chemotherapy, Julia improves and is discharged. This, along with Schoenthaler’s progress in Spanish, bolsters the young doctor.

Schoenthaler recalls that in medical school she fell in love with, “of all things, reflexive verbs. I loved the concept of a verb that made the self the objects.” Schoenthaler found that reflexive verbs gave her what seemed to be a “kinder, gentler way of speaking to patients in those early, awkward days of training. It felt so much more graceful to say to a stranger, ‘You can redress yourself’ rather than ‘Put your clothes back on.'” I too remember the awkwardness, in words and in deeds, of being a new physician. So much is foreign; the medical jargon and culture, the intimacy of illness and body each patient entrusts us with.

Schoenthaler finds that trying to discuss a topic as challenging as cancer tests her Spanish language skills. Near the end of medical school she attends a language immersion school in Mexico and her Spanish improves dramatically. When she returns, her patient Julia is readmitted with a grave prognosis. Distraught, she calls her mentor and he advises: “‘Now, you concentrate solely on her comfort.'” The new doctor translates his words into Spanish, “with its reflexive verb: ‘Ahora nos concentramos en su comodidad’ (Now we concentrate ourselves on her comfort). We, ourselves, all of us.”

Schoenthaler makes it their mission, instead of a cure, to provide comfort for Julia in her last days: “I held her hand and rubbed her wrists and used my reflexive verbs. We were both speaking a foreign language.” After Julia dies, Schoenthaler calls Julia’s mother, using the Spanish words she’s learned to convey the worst of all news: “‘Se murio’ — ‘She herself has died.'” The mother’s response needs no translation.

Writing Prompt: When you were first starting to care for patients, what words or phrases seemed most awkward? As a patient, have you had medical providers use phrasing that seemed detached or confusing? If you speak multiple languages, think about the different ways sentences are formed. What gets lost or jumbled in translation? Alternatively, think about a time you had to tell a patient’s loved one they died. What words did you use? Write for 10 minutes.

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Narrative Medicine Monday: What I Would Give

Physician and poet Rafael Campo has published several collections of poetry and prose. In his poem “What I Would Give,” Campo outlines the “usual prescription” given by physician to patient: “reassurance that their lungs sound fine” or “that the mole they’ve noticed change is not a melanoma…” He instead would like to offer them “my astonishment at sudden rainfall like the whole world weeping” and “the joy I felt while staring in your eyes as you learned epidemiology.”

Campo’s poem makes me think about all that we give to patients with each interaction, each hospitalization, over decades of caring for a patient and their family. Should we reorient the standard prescription for cure? As a patient, do you get reassurance from your medical provider? Comfort? What would be the best prescription?

Writing Prompt: If you could give anything to your patients, what would you give? As a patient, what do you expect to receive from your physician? What gives you comfort? Write for 10 minutes.

You can read more about Rafael Campo and his thoughts on the intersection of poetry and medicine in this interview with Cortney Davis, whose work I’ve featured on a previous Narrative Medicine Monday.

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