Narrative Medicine Monday: Mom at Bedside, Appears Calm

I recently attended Harvard’s Writing, Publishing and Social Media for Healthcare Professionals conference and wrote about how networking and finding “my tribe” was a meaningful part of the conference. Case in point: a friend I met there recalled my interest in narrative medicine when she went to a talk by Dr. Suzanne Koven, the Writer in Residence at Massachusetts General Hospital. Dr. Koven is an internist and writer and has spearheaded the innovative Literature & Medicine program at MGH. My friend initiated a virtual introduction and Dr. Koven kindly agreed to speak with me about her successful program at MGH.

I’m inspired by her work in bringing narrative medicine to front-line medical providers. Today I’m featuring a New England Journal of Medicine piece she wrote from a very personal experience titled “Mom at Bedside, Appears Calm.”

Koven opens the essay with the things she carries “everywhere we go… two plastic syringes, each preloaded with 5 mg of liquid Valium….” She describes how they treat her son at “the first sign of blinking or twitching,” and that “[w]hen he relaxes, so do we.”

Koven is a physician, with all of the benefits and pitfalls that entails, navigating the tumultuous waters of a loved one suffering an illness that is particularly unpredictable and unnerving, especially when it affects a child. Her son continues to seize, still without an identifiable cause, taking “40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops.”

With subsequent admissions to the hospital, Koven finds that she grows “more at ease” with the other parents of ill children and that she “clings to the nurses, Jen and Sarah and Kristen and ‘the other Jen,’ as we call her.” She glances at her son’s chart one night and it reads: “Mom at bedside. Appears calm.”

Though her son is eventually diagnosed and treated effectively, grows into adulthood and no longer suffers seizures, this period of unpredictable anxiety still haunts her: “occasionally my terror will snap to life again…. A siren sounds…. I still stop to see which way the ambulance is heading.”

Writing Prompt: Nowadays much of the medical record, including a physician’s progress note, is available right away to the patient via an online portal. Have you read a phrase or comment in your medical record that gave you pause, caused reflection? Did the comment align with how you felt in that moment, how you were perceived by the physician or nurse? If you’re a doctor, how would you answer the question Koven received: “Is it easier or hard to have a sick child when [you’re a] doctor?” Write for 10 minutes.

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