Narrative Medicine

Narrative Medicine Monday: What I Learned Photographing Death

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Caroline Catlin shares her riveting story of how photographing those with terminal illness gave her perspective about her own cancer diagnosis in the New York Times’ “What I Learned Photographing Death.”

Catlin volunteers with Soulumination, a nonprofit organization that documents moments between critically ill individuals and their families, including the end of a child’s life. As I also live in Washington State, I had heard of this remarkable organization and the unique and thoughtful service they provide. Catlin’s piece, though, also reveals the perspective of these volunteer photographers. As Catlin describes, her role is to enter a room “ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.” Her experience echoes that of many who work in the medical field. She too is a kind of caregiver for these families, wielding a camera rather than a stethoscope.

This young writer and photographer describes how in October she herself became a patient, eventually being diagnosed with malignant brain cancer. Catlin highlights how, since her diagnosis, she’s bonded with the people she’s photographing in a new way, including a teenager who shared mutual baldness: “The fact that I am sick and young has helped me form new connections with the people I am photographing.”

Catlin describes photographing the birth and death of a baby who was born with a condition that wasn’t survivable. She writes with heartbreaking clarity how “[h]e was perfect, but he did not cry,” how she captured “[h]is arm…gentle across his mother’s face — I clicked the shutter to save this gesture.”

Catlin is clear on her purpose in doing this difficult work: “When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human.” She also has discovered moments that speak to her own confrontation with mortality, such as when a child cries over the loss of his sister, then goes on to play near her body. She recognizes the resilience that exists in this world, that her friends and family “will also continue to live on if I die too soon.”

In the end, Catlin’s revelation is that “grief is centered not in pain but in love.” This is the lesson that she shares with us, the encouragement that “in our most horrific of moments we are met with small pricks of bright light, piercing and strong.”

Writing Prompt: In this piece, Catlin expresses how her work with Soulumination gave insight into her own experience with cancer and facing mortality. If you’re a medical provider, what has your work revealed to you about your own mortality? Alternatively, think about a time you stepped into another person’s story, during a particularly challenging time, either as a friend or family member or stranger. What did you learn from walking alongside that person, listening or observing? Write for 10 minutes.

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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: 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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