Narrative Medicine

Narrative Medicine Monday: Having and Fighting Ebola

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I wrote yesterday about how I attended a summer institute in Paris that focused on health beyond borders. The final keynote speaker was Dr. Craig Spencer, who shared his work rescuing and treating migrants in the Mediterranean.

Dr. Spencer has worked extensively in global health, and in 2015 wrote an essay published in The New England Journal of Medicine about contracting Ebola when he was treating patients in Guinea. He was a clinician who became a patient, fighting for his life.

In Spencer’s piece, he outlines how the “Ebola treatment center in Guéckédou, Guinea, was the most challenging place I’ve ever worked.” Though there was no clear breach of protocol, Spencer still returned home having contracted Ebola, becoming “New York City’s first Ebola patient.” Spencer shares both the anxiety and compassion he felt in caring for patients with Ebola: “Difficult decisions were the norm: for many patients, there were no applicable algorithms or best-practice guidelines.”

Dr. Spencer shares how, back in New York, after “the suffering I’d seen, combined with exhaustion, made me feel depressed for the first time in my life.” Though immediately presenting to the hospital the moment he exhibited any sign of illness or elevated temperature, Spencer is vilified in the media, his activities upon returning home scrutinized and “highly criticized…. People excoriated me for going out in the city when I was symptomatic, but I hadn’t been symptomatic — just sad. I was labeled a fraud, a hipster, and a hero. The truth is I am none of those things. I’m just someone who answered a call for help and was lucky enough to survive.”

Spencer calls out the panic that ensued after his diagnosis, how politicians “took advantage… to try to appear presidential instead of supporting a sound, science-based public health response.” He points out that “At times of threat to our public health, we need one pragmatic response, not 50 viewpoints that shift with the proximity of the next election. Moreover, if the U.S. public policy response undermined efforts to send more volunteers to West Africa, and thus allowed the outbreak to continue longer than it might have, we would all be culpable.” Spencer notes not only the misguided response to his own infection, but also the ripple effects this policy could have had on the outbreak worldwide. His is a cautionary tale of how a response to any public health situation must be grounded in steady pragmatism and based in scientific fact. Lives depend on it.

Writing Prompt: Dr. Spencer shares how, after witnessing significant suffering through his work with Ebola patients, he felt “depressed for the first time in my life.” If you are a medical provider, have you experienced similar secondary trauma? How did this manifest? Where did you find support? Alternatively, consider that Spencer urges us to “overcome” fear. Reflect on what you are fearful of, from a public health standpoint or otherwise. Is it a rational or irrational fear? How might it be overcome? Write for 10 minutes.

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Ramblings

Paris

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Bonjour! I’ve been remiss with posting lately due to travels. I went to Paris in early June for both work and pleasure. It had been a decade since I’d visited the City of Lights, and, despite several stressful setbacks (beware that Airbnb, even if reserved months in advance, can cancel within days of your scheduled arrival!), Paris did not disappoint.

I have a special affinity for the city, as it was the first place I traveled internationally. I took French in high school and went there as an exchange student, living with a host family for just a couple of weeks. It was the first time I’d been anywhere predominantly non-English speaking and my host family was attentive, warm and forgiving. My time in Paris was a gentle nudge out of my American suburban bubble. More drastic shifts in my world perspective would come later, but I always think of Paris fondly as my start to a love of travel. And, of course, it’s Paris! The richness of art, architecture, food, parks, history…. I’ve been back to Paris once each decade since and this, by far, was my favorite trip.

I had initially planned to attend a writing retreat right before my medical conference, but as the retreat was canceled, I instead had several days completely to myself in Paris before my husband arrived and my conference started. As a working mom with three little ones, solitary time in this magical city was bliss. I strolled the narrow streets, stepped into cafes and hidden parks. I hit my favorite Musée d’Orsay and Rodin and sat in quirky bookshops sipping espresso and writing in my notebook. I even had a chance to read a poem during a multilingual open mic night.

The summer institute I attended was also exceptional, an annual meeting of the minds hosted by the CHCI Health and Medical Humanities Network. This organization is a “hub for health and medical humanities research and collaboration” and this year’s theme, “Health Beyond Borders,” brought together experts in both narrative medicine and global health, each particular interests of mine.

Several talks I particularly enjoyed were:

A keynote by Ghada Hatem-Gantzer about her incredible work with women and girls who have suffered violence.

I connected with Shana Feibel on #somedocs prior to the summer institute when I stumbled across her post about presenting in Paris. Dr. Feibel spoke about a topic that resonates with me: “Bridging the borders between Psychiatry and other Medical Specialities: A Case for the Medical Humanities.” I hope to continue to learn from her work in this area.

Sneha Mantri from Duke is a neurologist with her Master’s in Narrative Medicine and gave a fascinating presentation about border crossing and modern medicine as it relates to Mohsin Hamid’s novel Exit West. I also learned Dr. Mantri was in the same narrative medicine class at Columbia as Stephanie Cooper, who I’ve gotten to know well through the Seattle chapter of the Northwest Narrative Medicine Collaborative. It’s a small, connected world!

Columbia’s Danielle Spencer presented innovative work on the idea of lived retrospective diagnosis, or metagnosis. I’m looking forward to her book on this topic, forthcoming in 2020.

Emergency Medicine physician Craig Spencer gave a moving keynote presentation about his work with Medecins Sans Frontieres and specifically the migrant crisis in the Mediterranean.

I returned from Paris rejuvenated and energized on many fronts. C’est magnifique.

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Narrative Medicine

Narrative Medicine Monday: Vicious

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Tim Cunningham gives us a glimpse of Abdul, a teenage Rohingya refugee he encounters in a Bangladesh camp, in Intima‘s “Vicious.” Cunningham notes that his “belly was swollen like the rice fields” and “[t]hough described by many as non-literate because he had no official access to school, he could read the Quran with ease. His recitation of its Surahs was exquisite.”

When Cunningham meets Abdul in clinic, his pain is “everywhere,” as if “[h]is genocide had shifted internally, an annihilation of his once-healthy cells.” Abdul had lost his appetite entirely, did not “miss dahl and rice, mangos and bananas, though he knew that he should. ”

Cunningham imagines where he might transfer Abdul, had he the resources: “They would have diagnostics for his hepatomegaly and cachexia. They would have 24-hour staff, teams of nurses and physicians to treat and listen his life-story. The providers would all speak Rohingya. These thoughts were but daydreams. For extraordinary diseases, with extraordinary measures and extraordinary means, there are ways to treat illness.  If you are Rohingya, there is nothing.”

Cunningham’s prose elicits a visceral response to his patient’s physical and emotional trials, but it is Abdul’s word of response to a difficult intravenous stick that give both Cunningham and the reader pause: “Vicious.”

Writing Prompt: If you’re a medical provider, are there certain assumptions you make about a group of patients you see? How did you feel when Abdul repeatedly says “vicious?” What do you think that word might mean to him? What does it mean to you? Have you worked in a resource-poor setting or with a marginalized group of patients before? Recall an encounter with a patient. Write for 10 minutes.

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