Narrative Medicine

Narrative Medicine Monday: What almost dying taught me about living

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Writer and speaker Suleika Jaouad urges us to rethink the binary nature of health and illness in her TED talk “What almost dying taught me about living.”

Jaouad, diagnosed with leukemia herself at the young age of 22, questions the narrative of cancer survivor as a hero’s journey. She recalls that “the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor… it’s a myth. It isn’t just untrue, it’s dangerous, because it erases the very real challenges of recovery.”

Jaouad finds herself discharged from the hospital and struggling with reentry to life. She had spent all of her energy just trying to survive, and now needs to find a new way of living amidst expectations of constant gratitude and labels of heroism. 

Her assertion is that often the most challenging aspect of a jarring interruption to life occurs after the inciting event or episode, in her case, cancer, has resolved. It is the attempt in weeks, months, years after to readjust to the daily act of living that can be the most grueling. She notes that “we talk about reentry in the context of war and incarceration. But we don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.” Jaouad urges us instead to accept that there is a spectrum of health and illness, and we should “find ways to live in the in-between place, managing whatever body and mind we currently have.”

Through writing a column about her experience fighting cancer and reentry into the world of the well, Jaouad begins getting letters from a vast array of people who relate to her story, her inspiration that “you can be held hostage by the worst thing that’s ever happened to you and allow it to hijack your remaining days, or you can find a way forward.”

Jaouad herself seems to find a way forward by sharing her story and connecting with others. Her struggle certainly resonates with me and my own recent life interruption. This concept of the nonbinary nature of well and unwell is also important for medical providers to consider. As primary care physicians, we are the ones who not only deliver a life altering diagnosis, but also who continue to care for patients long after their bodies recover or continue on with a chronic disease. I’m looking forward to reading Jaouad’s book on this topic, Between Two Kingdoms, out next year.

In the end, Jaouad concludes that we need to “stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.”

Writing Prompt: Jaouad assures us that every single one of us will have our life interrupted, either by illness or “some other heartbreak or trauma.” Think of a a time your life has been interrupted. What was the hardest aspect for you? What was your experience of “reentry?” Alternatively, think about the concepts of health and illness. What do these words mean to you, either as a patient or as a medical provider? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Introduction to Asthma

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Poet Susan Eisenberg gives an “Introduction to Asthma” for the parent and practitioner. Her son suffers an acute asthma exacerbation, the “Cacophony rising in his lungs, / oxygen level falling”. Eisenberg lets us know that her young son “believes / he will die” but also exposes the reality that “Anyone who wants to kill me he says / would have to kill my Mom / first.” She will follow her son anywhere, even Heaven or Hell. The reader’s own breath catches on this truth, as Eisenberg hugs “his eyes in mine / and breathe for both our lives.”

Writing Prompt: Try reading Eisenberg’s poem out loud. What do you notice about her choice of words, line breaks and white space? Think of a time you or a child or friend or patient experienced an acute and sudden medical emergency, such as an asthma exacerbation. Describe what you hear, what you see. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

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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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