Narrative Medicine Monday: What almost dying taught me about living

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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