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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Free Write Friday: Exercise Equipment


She’s tried gym classes, Jillian Michaels DVDs. She’s run around the track, jogged over wooded trails studded with stones. She’s done two-a-days, eager teens taking turns running drills, hard stops at the line, lifting barbells in the weight room behind the lunch room behind the theater where they held the high school dances. 

She’s bought stretch bands, barbells, balance balls, plastic steps with risers. She found a pull up bar for free on the local mom’s list serve. They buy and sell fancy rain boots and football tickets and ask each other for advice on family-friendly resorts in Zihuatanejo and the best estate planning attorneys and drop-in childcare and ways to get kids involved with climate action and places for Santa photos over the holidays. She fits right in.

She’s taken yoga classes – not hot – that seems unnecessarily suffocating. Spongy mats laid out on the hardwood floor, downward dog and sun salutations with arched backs into flexed toes. Tree pose her favorite: upright and accomplished, easily mastered with her gift of balance and big feet. 

She’s taken pre-dawn boot camps, meeting a group of head-lamped women exclaiming encouragement as they huff up dozens of stairs, breath billowing into the chill morning, sweat trapped under layers of workout gear. She liked having others to exercise with, run hills or jump into burpees, but the classes just weren’t sustainable after having her own children. The other demands of the morning, of harried family life took reign. 

She’s had an online trainer, focused and encouraging but intimidating with her exposed washboard abs. She’d never dieted but for the first time in her life she paid attention to what she ate, limited her junk food, her evening snacking; stopped eating sweets and bags of chips and salsa and glasses of wine whenever she wanted. She stopped indulging in huge bowls of homemade popcorn, puffed and crunchy, doused in hot butter, sprinkled with salt, handfuls melting unceremoniously in her eager mouth, absently stuffed while watching another Netflix episode of Breaking Bad or The Wire or Game of Thrones. She got enough sleep. Felt strong, empowered. 

She’s pushed an unwieldy jogging stroller around the lake, 3.2 miles of sneakers pounding on damp asphalt, muddy gravel, swerving this way and the other to avoid the deep ruts, the many pools of murky water that coalesce after a spring rain. She got to know each curve of the path, each puddle, each turn of season that marked the route like an aging backyard maple, imperceptibly swelling trunk, leaves changing and falling and budding again.

And maybe that’s fitness: fits and starts and seasons and patterns. Lately she’s fallen back into her flesh, into her routine, into her strength and stamina; the muscles build, the mind clears and her body is her own again. 

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Narrative Medicine Monday: An Expert in Fear

Author Susan Gubar writes about cancer making her “An Expert in Fear” in her timely essay. She asserts that this anxiety has become more acute in the recent political climate, with debates about major changes to healthcare, Medicaid and insurance coverage in the forefront of our national discourse.

Gubar contends that cancer fears fuel other fears and that cancer patients become “experts in fear.” If you’ve dealt with cancer, has this been your experience? She also highlights the detrimental impact fear can have on our health, and that severe financial distress has been found to be a risk factor for mortality in cancer patients. Gubar feels there is no appropriate word for the dread she experiences today. It is a “fear of fear spiraling into vortexes of stunning trepidation” and has, in fact, become all-pervasive and metastatic. 

Writing Prompt: What fears do you harbor related to health and illness? Have you found that the political climate impacts that anxiety? Do you agree with Gubar that fear is pervasive in today’s world? Write for 10 minutes.

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