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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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: Hospital Writing Workshop

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Poet and physician Rafael Campo describes the magic that can occur in a “Hospital Writing Workshop.” Campo starts the poem at the end of his clinical workday, “arriving late, my clinic having run / past 6 again.” Campo is teaching a workshop for “students who are patients.” He notes the distinction that “for them, this isn’t academic, it’s / reality.” These are patients with cancer, with HIV, and Campo is guiding them through poetry and writing exercises to search for healing and respond in a unique way to their disease and suffering.

Campo outlines his lesson, asking the students to “describe / an object right in front of them.” Each interprets their own way, to much poignancy. One student “writes about death, / her death, as if by just imagining / the softness of its skin … she might tame it.” In the end, this poem is about the power of poetry and art for both the patient and the medical provider. It’s about how something as simple as a writing workshop can cause us to pause, “take / a good, long breath” and move through suffering to a kind of healing, to a kind of hope.

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Narrative Medicine

Narrative Medicine Monday: My One, My Only

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In the latest issue of Brevity, writer Michaella Thornton explains how she answers strangers about “My One, My Only.” At the grocery store with her toddler daughter, someone will invariably ask, “Is she your only child?” Thornton understands there are things that “give us away,” like “the way I narrate our grocery trip.”

When “someone asks the ‘only child’ question” at checkout, Thornton recalls the years of infertility treatments she endured: “Instead of conceiving a baby by a glacier-fed lake, we pray at the altar of reproductive medicine and lost causes.” Thornton wonders at it all, noting that the “human egg is a redwood among the rest of our sapling-sized cells. Think of the size of a period at the end of this sentence—that is the size of a human egg.”

She relays the grueling aspects of her experience with infertility treatments, the “pin-pricked stomach,” the “loneliness together” she endures with her husband. In the end, though, “as the doctors put my organs back into my body, as I throw up into a kidney-shaped pan” she is “crying over and over again to my newborn daughter, ‘I love you. I love you so much.'”

In this flash essay Thornton uses a moment with a stranger, an intrusive question many feel compelled to ask, to convey her experience with infertility, with IVF treatments, with the miracle that is her one and only child. She notes the “inadequacy of the question” strangers pose, and, in this short piece, takes us with her through “sublime sadness and joy.”

Writing Prompt: Have you had a stranger comment on the number of children you do, or don’t, have? How did you feel, what thoughts did it trigger when you received this question? Have you or someone you know struggled with infertility or are you a physician who treats this? What is it like for a patient to go through this treatment? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: History Taking in the Anatomy Lab

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Bethany Kette writes about “History Taking in the Anatomy Lab” in the latest issue of JAMA. Kette describes how in medicine we almost always start with the history of the patient, then move on to the physical exam. Kette notes though that “there is one time in our medical careers when we are instructed to perform the most thorough physical examination possible without learning so much as the patient’s name:” that of dissecting a cadaver in anatomy lab.

Now, fifteen years removed from that anatomy lab and ten years into my primary care medical practice, I can attest to the value of history-taking in a relationship developed over time: “It is a closeness and privilege that can provide purpose and meaning to routine acts of medical care.” Yet as medical students learning anatomy through the very intimate process of dissection, we receive very little information about our donors, only their age and cause of death.

In order to better understand the life of the woman who donated her body, Kette created the Obituary Writing Program at Georgetown. Kette developed the program with input from the Literature and Medicine Track director (how great that this is a track in a medical school!) and an obituary writer for the Washington Post. The result allows interested medical students to craft a real narrative about their donors, discover stories “that reveal a life.”

Kette interviews her donor’s son and learns that the woman was a “small-town farm girl” who graduated from Georgetown University School of Medicine: “She had literally stood in my footsteps in the same formaldehyde-scented labs in which I had spent the past year with her as my teacher.” The woman eventually retired from medicine to become a painter and was a “devout Catholic;” her faith informed her drive to help others. The medical students who participated in Kette’s program read the obituaries they had written during a ceremony at the end of the year, part of expressing gratitude to the donors themselves and to their loved ones for the gift of the donor’s bodies.

Kette’s program puts “history in its rightful place before the physical— students now interview the families of their donors before making the first cut in anatomy lab.” It also serves as a reminder to those of us well into medical practice that a person’s rich history, their life lived outside the hospital bed or exam room, is what we’re striving in medicine to help them return to, and what matters regarding their health, in the end.

Writing Prompt: If you are a physician, what do you recall about your initial interactions with your cadaver in anatomy lab? What did you know about the person’s history? What did you wonder or invent? Consider writing the obituary or life story of a well-known relative, friend or patient. How does outlining this narrative affect your relationship to this person? Write for 10 minutes.
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Narrative Medicine

Narrative Medicine Monday: My Grandmother’s Body

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Author Anna Leahy writes about “My Grandmother’s Body” in Sweet, an online literary journal. Leahy describes the funeral director, who arrives when called, wearing “his funeral-director suit.” The professional Leahy witnesses is experienced, noting “the stairs’ ninety-degree turn / without changing pace.” The director asks “if he might / lift her himself to carry her downstairs” and Leahy finds a kind of comfort in this. She thinks, “What a relief / to think of her last moment at home, cradled / in the man’s arms.”

Leahy’s poem is a snapshot of a moment and a man, revealing the funeral director’s practicality and reverence for his work and the relief this provides for those who love the deceased. We often reflect on the last moments right before a person dies, but Leahy’s poem, like Lisa Knopp’s “Leaving the Body,” focuses instead on those just after: the weighty finality, the people who interact with the body and the importance this holds for those still living.

Writing Prompt: Have you been near a dead body, either of a loved one or of a patient? What was the experience like? How was the body retrieved, and to where? How did you feel about how this was accomplished? Alternatively, think about your impressions of the funeral director as described by Leahy. Consider writing the scene from his point of view. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Going Blind

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German poet Rainer Maria Rilke writes of a nearly-blind woman at a party in “Going Blind.” The poem provides an observation of this woman, as if we were in the room with her. At first she looks “just like the others.” As someone who works in healthcare, usually it is obvious when a patient is sick. But more often than I think we acknowledge, we can’t always tell when a person is suffering or ill. There are many diseases or ailments that might not be readily apparent at first glance.

The narrator does soon note subtle differences in the woman: “she seemed to hold her cup / a little differently as she picked it up.” Rilke focuses on the woman, as the rest of the party moves away: “I saw her. She was moving far behind”. He notices her eyes, “radiant with joy, / light played as on the surface of a pool.”

There is a turn in the poem here, where the narrator moves from seeing her smile as “almost painful” to realizing that once “some obstacle” is “overcome, / she would be beyond all walking, and would fly.” It ends on this hopeful note, the idea that this woman will persevere, and in so doing, move beyond all others and the world’s norms.

Interestingly, here is another version of Rilke’s poem, translated by Margarete Munsterberg in 1912. Reading various English translations of poetry always makes me wonder at what might be missing when we don’t read a piece in the author’s native tongue. Did you get a different sense of the themes or of the woman from reading these translations?

Writing Prompt: Think of a time when one of your senses was limited. What did it feel like to be restricted in this way? Did you note other senses altering in response? Have you observed a patient or a loved one losing their hearing, their sight, their ability to taste food? What did you notice? Alternatively, consider writing from the perspective of the woman going blind. Imagine what she sees, what she feels. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Introduction to Asthma

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Poet Susan Eisenberg gives an “Introduction to Asthma” for the parent and practitioner. Her son suffers an acute asthma exacerbation, the “Cacophony rising in his lungs, / oxygen level falling”. Eisenberg lets us know that her young son “believes / he will die” but also exposes the reality that “Anyone who wants to kill me he says / would have to kill my Mom / first.” She will follow her son anywhere, even Heaven or Hell. The reader’s own breath catches on this truth, as Eisenberg hugs “his eyes in mine / and breathe for both our lives.”

Writing Prompt: Try reading Eisenberg’s poem out loud. What do you notice about her choice of words, line breaks and white space? Think of a time you or a child or friend or patient experienced an acute and sudden medical emergency, such as an asthma exacerbation. Describe what you hear, what you see. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Perchance to Think

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A couple of years ago I was driving to work when I pulled up behind a car that had a red bumper sticker with white block lettering: “THINKING IS WORK.” When I arrived at my desk that day I wrote this statement on a Post-it note in my barely legible handwriting and moved on with my busy primary care clinic day.

Since then, I’ve had little time to ponder this idea, but it’s always been there, in the back of my mind, the Post-it still pinned to my desk bulletin board. We live in an accelerated world, saturated with information at our disposal. Though I’ve noticed, in my life and in medicine, there is less and less time to access this information, to research, or just think.

Dr. Danielle Ofri’s latest piece in the New England Journal of Medicine highlights this issue. In “Perchance to Think” Ofri outlines a common problem among primary care (and I’m sure all speciality) practices – there isn’t time allotted to actually think about a case. Ofri gives the example of a patient with slightly abnormal lab tests ordered by another physician. As the primary provider, Ofri is then tasked with sorting out whether this patient has adrenal insufficiency or rheumatoid arthritis while also addressing his six known chronic conditions. Ofri notes that, for primary care physicians, “adrenal insufficiency resides in the wobbliest, farthest-flung cortical gurus I possess.” Ofri quickly realized, as her “patient stacked his 15 medications on my desk – all of which needed refills, and all of which could interfere with adrenal function” that what she really needed to give this patient the best care possible was “time to think.”

In medical school we have time to study, to think deeply as we learn the intricacies of the human body and how to treat illness when things go wrong.

Once out in practice, though, there isn’t the luxury of that time to ponder. More and more demands are put on the physician, be it “last week’s labs to review, student notes to correct, patient calls to return, meds to renew, forms and papers spilling out of my mailbox.” Ofri eventually gives up, gives in to the time constraints of the system, and refers the patient to endocrinology to sort out the adrenal insufficiency issue.

As a primary care physician myself, this is an all too familiar dilemma. Ofri recognizes that this situation is untenable to all involved: the patient, the primary care provider, and the specialist. “In the pressurized world of contemporary outpatient medicine, there is simply no time to think. With every patient, we race to cover the bare minimum, sprinting in subsistence-level intellectual mode because that’s all that’s sustainable.”

Ofri eventually takes the time to listen to a podcast on adrenal insufficiency, addend her note and contact the patient with a more cogent plan until he’s able to see endocrinology. But this was time that isn’t usually allotted or even available in a normal physician’s busy life: “many of our patients’ conditions require — time to think, consider, revisit, reanalyze.”

Ofri laments there’s no way to code for contemplation, but asserts that giving physicians the time to think could improve efficiency. “We would save money by reducing unnecessary tests and cop-out referrals. We’d make fewer diagnostic errors and avert harms from overtesting. And allowing doctors to practice medicine at the upper end of our professional standard would make a substantial dent in the demoralization of physicians today.”

Here’s to considering a more wholistic way of practicing medicine, one that includes the intellectual rigor that attracted most physicians to medicine in the first place. After all, thinking is work.

Writing Prompt: Do you think giving physicians time to think would make a difference in efficiency? Have you experienced a case similar to Ofri’s, where if you had a little more time to research, you could manage the case yourself? As a patient, do you notice the time pressures on your physician? Describe what it’s like to experience this as a patient, as a provider. Write for 10 minutes.

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