Narrative Medicine Monday: What I Learned Photographing Death

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 Monday: The Bright Hour

I first came across Nina Riggs’ book, The Bright Hour, because of its comparison to another popular memoir, physician author Paul Kalanithi’s When Breath Becomes Air.

Riggs was a poet, and her writing style reflects this; short chapters with descriptive elements and a musicality to the sentences that leaves us wanting more. She is honest and funny. Diagnosed with breast cancer in her thirties, a life just hitting its stride with two young boys in tow.

In describing Atul Gawande’s book Being Mortal, Riggs illuminates the heart of her own memoir “of living and dying.” She notes the attempt “to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.”

Riggs navigates the world of oncology and the process of dying with candor and a clear sense of self. When her oncologist discusses her case with colleagues she bristles at the standard name for the meeting of minds: “Tumor board: the term kills me every time I hear it. You’re just saying that to freak me out, I think. What is actually a group of doctors from different specialties discussing the specifics of your case together around a table sounds like a cancer court-martial or a torture tactic.”

She takes her young sons to her radiation oncology appointment in the hopes of getting them interested in the science behind the treatment. In the waiting room, she becomes acutely aware of how, taken as a group, her fellow cancer “militia” appear: “Suddenly I am aware of so many wheelchairs. So many unsteady steppers. So many pale faces and thin wisps of hair and ghostly bodies slumped in chairs. Angry, papery skin. Half-healed wounds. Growths and disfigurements straight out of the Brothers Grimm. So many heads held up by hands.” Have you ever been entrenched in a world of medicine or illness and then suddenly seen it from an outsider’s perspective?

Riggs ushers the reader into her new world as breast cancer patient. In a particularly striking scene following her mastectomy, she goes to pick out a breast form from the local expert, Alethia. “‘Welcome!’ She says. ‘Let’s find you a breast!’ She tells me that according to my insurance, I get to pick out six bras and a breast form…. The one she picks comes in a fancy square box with gold embossed writing: Nearly Me.” As Riggs’ contemporary, I could see the grave levity in the situation; Riggs is a master at sharing her experience, heartache and humor alike.

In the end, this is a memoir of a young woman who is dying. She acknowledges this and realizes that, near the end, there is a metamorphosis of light: “The term ‘bright spot’ takes on a whole new meaning, more like the opposite of silver lining: danger, bone pain, progression. More radiation. More pain medicine. More tests. Strange topsy-turvy cancer stuff: With scans, you long for a darkened screen…. Not one lit room to be found… not one single birthday candle awaiting its wish. No sign of life, no sign of anything about to begin.”

Writing Prompt: If you’ve read Kalanithi’s When Breath Becomes Air or Atul Gawande’s Being Mortal, how does their approach to writing about dying compare with The Bright Hour? Riggs comments on a kinship with the “Feeling Pretty Poorlies” she meets during her radiation treatment but because of HIPPA privacy regulations, never knows if they finished treatment or if it was “something else” that caused them to disappear. Did you ever participate in a treatment where you saw the same people regularly? Did you wonder about them after that time ended? Think about the privacy rules set in place to protect patients’ privacy. What are the benefits? Do you see any drawbacks? Write for 10 minutes.

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Narrative Medicine Monday: Today, Magda

Writer Catherine Harnett presents us with Magda in her opening paragraphs, a woman who wears “scarlet velvet shoes with bows, so ladylike” and “sends thank you notes to hostesses the next day.” Magda takes a cab to visit her husband, Conrad, who “cannot place her, though she seems familiar.” Magda notes that with this persona “she can talk with ease about The War, how hard it is to live without silk and chocolate.” Magda and Conrad have tea together and as she leaves she recalls the other roles she’s played. There is a melancholy sweetness to Magda’s character play. She has found a way to have satisfying interactions with her husband despite his progressive and painful memory loss. Her husband has, in fact, disappeared and Magda fills the void with her elaborate personas.

Writing Prompt: What do you think of Magda’s approach to meeting with her husband, who no longer remembers her? Is she taking on the different personas more for his benefit or for hers? Have you had a loved one who has forgotten who you were? How did it feel? If not, imagine someone close to you suddenly didn’t remember your life together. Write for 10 minutes.

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Narrative Medicine Monday: Heroin/e

In Cheryl Strayed’s essay “Heroin/e” she writes about our ways of facing death, dying, grief and the will to live. Strayed loses her mother to cancer and suffers her own descent into addiction. Strayed’s love for her mother is evident and the loss she feels is acute. When her mother first learns of her diagnosis, Strayed recounts them silently entering the restroom, “Each of us locked in separate stalls, weeping. We didn’t say a word.” Strayed describes the numbing of pain and the warping of time for each of them: “The days of my mother’s death, the morphine days, and those that followed, the heroin days, lasted only weeks, months–but each day was an eternity, one stacked up on the other, a cold clarity inside of a deep haze.”

Writing Prompt: What does it feel like, in a physical sense, to suffer from addiction? From grief? Do you think addiction and grief are linked? Why or why not? Think of your own experience or a time you’ve witnessed this in a patient. Write for 10 minutes.

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Dissatisfied

“Somewhere somebody must have some sense. Men must see that force begets force, hate begets hate, toughness begets toughness. And it is all a descending spiral, ultimately ending in destruction for all and everybody. Somebody must have sense enough and morality enough to cut off the chain of hate and the chain of evil in the universe. And you do that by love.” – Martin Luther King, Jr., 1957

Today, this week, this year especially, it seems important to heed the words of Dr. Martin Luther King, Jr. I’m particularly struck by his call to “divine dissatisfaction” in his 1967 speech “Where Do We Go From Here?” May we all meditate on his words today and may they stir us to action. Let us all be dissatisfied.

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