Narrative Medicine

Narrative Medicine Monday: When in Distress, Try Sonnets

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It’s a new year and I feel ready to leave a decade riddled with much distress behind. Author Susan Gubar suggests “When in Distress, Try Sonnets” in her recent piece in The New York Times. As someone who finds comfort in carefully crafted words, especially poetry, I can certainly get behind this line of thinking.

Gubar, who writes about living with cancer, describes her “dwindling support group” and the lengths some are going to for treatment, “not telling their oncologist about the fortune they are spending on medicines from Cuba.” She acknowledges all that has been lost through her own cancer treatment, the ileostomy requiring “no more nuts, corn, salads, berries or cherries. Long walks and vigorous exercise had to be relinquished, given the major side effect of the daily targeted drug: fatigue. Wishing myself stronger, desiring this woman’s intact body, that other woman’s vigor, I despise myself for the envy that has me in its grip.”

Reflecting on all that she and those around her have been through, Gubar quotes Stuart Scott: “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live.” Gubar turns to the sonnet to think about this life and how to find consolation when that living gets difficult.

She analyzes the structure of a sonnet through the lens of living with a serious illness: “volatility of sonnets instructs us, I believe, for this short form generally hinges on an internal turn, known as a twist or volta. First there is one absorbing emotion or conviction and yet oddly, unexpectedly, here comes another. The mutability of our moods is captured in the 14 lines of a poem that consoles because variability means not being stuck in one fixed lot.”

Gubar contends that the sonnet, “large in scope but small in size…encapsulates infinitely malleable spirits within a finite frame, as we do.” I like this idea of the sonnet holding endless possibilities within a particular framework. Our own bodies are similarly confined, in space and in time, yet the spirit is expansive beyond imagination.

She notes the lesson of change inherent in sonnets, the fact that “even when a wretched situation deteriorates in the miniature world of the sonnet, it speaks of change.” Sonnets, like life, don’t offer decisive closure, yet convey the truth that “till the very close…our lives are spiced and spliced.”

Writing Prompt: Choose a sonnet listed by Gubar and use a word or line that resonates with you as a prompt to write about your own life illness or challenge. Alternatively, think about the idea that we are “infinitely malleable spirits within a finite frame.” Write about your own “frame” or body and how it has supported or failed you. Consider several “spirits” you’ve embodied that have changed over time, or that you hope to embody in your lifetime. Write for 10 minutes.

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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 Monday: Caring for Ms. L

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Dr. Audrey Provenzano explores the difficulties in treating opioid use disorder in The New England Journal of Medicine‘s “Caring for Ms. L.” Provenzano has already developed rapport with Ms. L when one day the patient admits to her doctor that she had “taken a few of the oxycodone pills prescribed for her husband… [a]nd like a swimmer pulled into the undertow, she was dragged back into the cold, dark brine of addiction.” Ms. L is eager to try a treatment called buprenorphine but Provenzano doesn’t have the special license or training to prescribe the medication. Ms. L expresses disappointment at needing to establish care with a different provider. She trusts her doctor and doesn’t want to tell anyone else about her addiction.

Provenzano confesses that “the reason I didn’t have a waiver to prescribe buprenorphine was that I didn’t want one…. Every Friday I left the office utterly depleted, devoid of the energy or motivation it would take to spend a weekend clicking through the required online training.” She admits that more than anything, she avoids the training because she “did not want to deal with patients who needed it.” Provenzano had witnessed the toll addiction can take on a patient’s relationships and life and “[a]lready overwhelmed, I did not want to take on patients with needs that I did not know how to meet.”

Most primary care physicians can relate to Provenzano. There is already an alarming amount of burnout that exists among today’s physicians; the thought of adding another degree of complexity seems untenable to most, especially if it seems the therapeutic need is insurmountable.

Provenzano notes, though, that when Ms. L returns to her for diabetes treatment after seeing a colleague for the buprenorphine “a space had opened between us.” Ms. L doesn’t return for follow up and it is a year later that Provenzano learns that Ms. L died of an overdose. Provenzano experiences a “profound sadness” for Ms. L’s family, though “it was the shame that kept me awake.” She can’t help thinking that, given the strong patient-physician relationship they had previously developed, if Provenzano had treated Ms. L herself things might have turned out differently.

Provenzano goes on to get buprenorphine training and experiences both the therapeutic and complex social aspects of managing patients with opioid use disorder. She advocates for moving beyond just the training needed to prescribe medications for this chronic disease, but also urges us to “recognize, name, and talk about the social issues that must be addressed” and establish “team-based behavioral health and social work resources.”

Provenzano eventually finds treating patients with opioid use disorder “the most meaningful part of my practice.” She ultimately experiences great satisfaction in providing some normalcy to patients who are “roiled by overdose and estrangement.” Have you experienced the same?

Writing Prompt: As a patient, can you understand or appreciate Dr. Provenzano’s hesitation at first? If you’re a physician, have you experienced a similar hesitation? If you’ve suffered from addiction, what has been the most therapeutic intervention you’ve received? Think about an experience with addiction, either on a personal level or with a patient, that was particularly difficult. Then consider an interaction or moment that was a breakthrough. Write for 10 minutes.

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Narrative Medicine Monday: May Cause

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Writer Elspeth Jensen highlights the many instructions we are confronted with when taking medications in her Bellevue Literary Review prose poem “May Cause.” Jensen’s poem accelerates throughout and hints at the absurdity of all we are told to do, not to do, of all we are advised to avoid, to look out for: “Use care when operating a vehicle, vessel, boat, until you become familiar with blurred vision, symptoms worsening, fear, or sadness.” Jensen repeats “do not” six times in this short poem. The reader, as the patient, feels the anxiety evoked by the many stipulations of being medicated.

Writing Prompt: Think of the last time you read the instructions given to you with your medication. Perhaps you still have one in your medicine cabinet. Take it out and read it in full. How many times are you told “do not?” Is anything confusing? Humorous? Did you adhere to the instructions? Why or why not? Write for ten minutes.

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Narrative Medicine Monday: What Insomniacs Do in Bed

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Donna Steiner lets us know “What Insomniacs Do in Bed” in her poem in The Healing Muse. Steiner touches on those heightened moments in the middle of the night, when the rest of the world seems muted. She admires much, including “the under-valued texture of flannel sheets” and “the capacity of our aging lungs.” She notices the absence of all sorts of things, including “of rain, of drizzle, of shower…” Steiner wonders about “germs and mites and viruses, and whether they multiply right now,” a vivid recognition of what those of us up at ungodly hours imagine.

Over the past two decades I’ve often been awake in the middle of the night, occasionally due to insomnia but more frequently because of medical work or motherhood, nursing my own babe or delivering a new life into the world in the pale hours of almost-morning. Steiner issues a call to accept the gift of repetition, that it is a “form of education.” Perhaps the most significant to the insomniac is the “merciful repetition of daybreak.”

Writing Prompt: Have you suffered from insomnia? Does Steiner’s poem resonate with you? What do you do when you’re up at night and no one else is? If you’ve been up in the middle of the night for another reason (residency, parenting), what did you notice about being awake when the rest of the world is sleeping? Write for 10 minutes.

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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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Narrative Medicine Monday: And Still We Believed

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Emergency physician Dr. Rebekah Mannix relays the story of her teenage goddaughter who developed vomiting and eventually a dire diagnosis of metastatic cancer in JAMA’s “And Still We Believed.”

Mannix finds herself researching experimental treatments, hoping for a “miracle,” but unable to find any in the medical world: “We did not comprehend that someone so healthy and vibrant…could succumb.” Even after the patient was transferred to comfort measures only, Mannix admits she “still wasn’t ‘there’ yet.” “Even as I knew she would die, I believed she wouldn’t.”

Mannix speaks to the idea that even as physicians, as scientists, we “know better” but still our humanity takes precedence over logic and understanding. There is a lesson here for medical providers. Patients may comprehend what we tell them, but they might not always believe it: “Even as they sit holding the hand of a loved one on a morphine drip–whose organs have shut down, whose words have ceased–they still may not believe death will come.”

Writing Prompt: Have you ever experienced a dire diagnosis for your yourself or a loved one and not believed it? If you’re a physician, how can we best navigate supporting a patient or their family when, despite clear evidence to the contrary, they “still believe.” Write for 10 minutes.

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Narrative Medicine Monday: The Poetry in Primary Care

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Returning from vacation as a primary care physician, as any physician, can be a daunting task. I wrote a flash essay for Pulse about the intense timeline of a typical family physician’s workday. You can imagine after being gone for a week the mountain of forms, test results, and emails that accumulate. Even when you have, as I do (many don’t), supportive partners who do their best to clean out as much of the inbox as possible, there’s a particular dread and pressure that occurs for the primary care physician returning to work. In medicine, everything is connected to a patient. A response delayed, an aberrancy missed, means damage—emotional or physical—to a very real person.

It was on such a day, back to work after a week of camping and s’mores and searching for sand dollars on a Washington coast beach with my family, that I stumbled upon a poem. Our clinic is set up with exam rooms jutting in from corridors that originate like tributaries from the hallways that line the perimeter of the building. Our offices dot the exterior hallway, windows overlooking the parking lot or other buildings in the business complex.

I was walking along this exterior hallway, brisk step between patients, stuffing my stethoscope back into my stiff white coat pocket, when I was struck by a nondescript sheet of paper tacked to the bulletin board just outside our nurses’ office. “Good Bones” caught my eye, made me pause mid-stride. There were patients to examine, lab results to respond to, phone calls to make, radiographs to interpret, but I stopped and turned and read the familiar lines.

I’ve followed poet Maggie Smith’s work for some time. I find poetry alluring and intimidating. I took Michelle Penaloza’s excellent poetry class at Hugo House last fall to overcome my perplexion, but found it would take much more investment to grasp all I wanted about the craft of poetry. Smith’s work is relatable; my contemporary, a mother, an artist, her words resonate and I instantly became a fan.

But to see her here, amidst my other vocation, my medical science workday of Pap smears and skin biopsies and asthma exacerbations, was foreign, a collision of worlds. Though I’ve written about and taught narrative medicine for several years now, though I’m aware of the benefits, to both the physician and patient, of integrating the humanities into the science of medicine, I’ve still found it challenging to be present with such art during the compressive restrictions of my primary care workday. So, Smith’s poem, tacked inconspicuously along a back hallway bulletin board, among graphs of clinic access and Medicare Five Star goals and HEDIS measures and Press Ganey patient satisfaction scores, was a welcome interruption, a surprising reminder, an appropriate intermission interjected into a hectic workday.

I asked around for several days after, attempting to determine who had posted the poem of maintaining hope amidst a broken world. Though I was told it had been up for weeks, maybe months, I never did find the culprit. That same week Glennon Doyle highlighted this very poem on her social media. For me a collision of two women I admire, I’ve never met, whose good works are far from medicine, far from my little corner of primary care amidst the jutting mountains, the emerald waters of the Pacific Northwest. But the lessons, the convictions, the challenge of poetry is relevant, maybe the most relevant to my interactions with patients, my titration of insulin regimens, my diagnoses of cancer, my prescribing of antidepressants, my listening to histories to evaluate an unintentional weight loss or a shortness of breath or an abdominal distention leaving a patient in excruciating pain.

Maybe an antidote to our broken healthcare system, the crux of narrative medicine, a balm for medical professionals suffering from compassion fatigue and secondary trauma and a system that increasingly squeezes the humanity out of of its providers, rests in the complex workings, the simple act of reading poetry. There’s instruction in the words, in the art of the line break, illumination of humanity in the universal themes presented. A reminder that at the heart of medicine we serve people, we are people, we are all in this together. Poetry infuses humanity back into this most human, most intimate of professions. Medicine is a science but it is also an art. For all of our sakes, maybe it’s time to embrace that pairing in an inspired, more hopeful way.

Writing Prompt: How do you talk with children about the difficult aspects of this world? Despite the brokenness observed and felt, do you try to sell your children on the world in the hopes that they would attempt to make it beautiful? Do you see poetry in medicine? Why or why not? Write for 10 minutes.

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Narrative Medicine Monday: Lessons in Medicine, Mortality, and Reflexive Verbs

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I “met” Dr. Robin Schoenthaler through an online group of physician writers. Schoenthaler has been universally encouraging to our growing community of novice and accomplished writers and offers practical and helpful advice. Her kind of wisdom and support is so needed in both the literary and medical worlds.

This article by Schoenthaler, published in the New England Journal of Medicine, describes her use of Spanish during her medical training in Southern California. Schoenthaler learned much of the language from her patients, notably a “young woman named Julia Gonzalez” who, admitted with acute myeloid leukemia, taught the young Schoenthaler “considerably more than Spanish nouns and verbs.” After several rounds of chemotherapy, Julia improves and is discharged. This, along with Schoenthaler’s progress in Spanish, bolsters the young doctor.

Schoenthaler recalls that in medical school she fell in love with, “of all things, reflexive verbs. I loved the concept of a verb that made the self the objects.” Schoenthaler found that reflexive verbs gave her what seemed to be a “kinder, gentler way of speaking to patients in those early, awkward days of training. It felt so much more graceful to say to a stranger, ‘You can redress yourself’ rather than ‘Put your clothes back on.'” I too remember the awkwardness, in words and in deeds, of being a new physician. So much is foreign; the medical jargon and culture, the intimacy of illness and body each patient entrusts us with.

Schoenthaler finds that trying to discuss a topic as challenging as cancer tests her Spanish language skills. Near the end of medical school she attends a language immersion school in Mexico and her Spanish improves dramatically. When she returns, her patient Julia is readmitted with a grave prognosis. Distraught, she calls her mentor and he advises: “‘Now, you concentrate solely on her comfort.'” The new doctor translates his words into Spanish, “with its reflexive verb: ‘Ahora nos concentramos en su comodidad’ (Now we concentrate ourselves on her comfort). We, ourselves, all of us.”

Schoenthaler makes it their mission, instead of a cure, to provide comfort for Julia in her last days: “I held her hand and rubbed her wrists and used my reflexive verbs. We were both speaking a foreign language.” After Julia dies, Schoenthaler calls Julia’s mother, using the Spanish words she’s learned to convey the worst of all news: “‘Se murio’ — ‘She herself has died.'” The mother’s response needs no translation.

Writing Prompt: When you were first starting to care for patients, what words or phrases seemed most awkward? As a patient, have you had medical providers use phrasing that seemed detached or confusing? If you speak multiple languages, think about the different ways sentences are formed. What gets lost or jumbled in translation? Alternatively, think about a time you had to tell a patient’s loved one they died. What words did you use? Write for 10 minutes.

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Narrative Medicine Monday: Titanium Seed

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Poet Judith Skillman’s “Titanium Seed,” published recently in the Journal of the American Medical Association, describes the new “part of flesh inside” that is hers “to carry through / airports, not setting off / any alarms, they assure me, / not anything other than / a placeholder for cancer.”

She depicts the experience of getting a breast ultrasound, “the technician rubbing her wand / over and up hills of black / and white.” Skillman’s poem illustrates the anxiety associated with waiting for a diagnosis, the uncertainty of the pause that occurs after an aberrancy is found but before a definitive answer is revealed.

The seed represents an alteration of Skillman’s body, this reality of the possibility of cancer she harbors in her flesh unseen. She outlines how the patient is at the mercy of the medical diagnostician, describing how she lies “between two triangle pillows – / placed like an offering / to this Demi god who may / or may not find what appeared / on his screens.”

Writing Prompt: Think of a time you had a biopsy or lab test or imaging done and had to wait for the results. Sit in that space of uncertainty. Describe the experience. Did colors return, as they did for Skillman, when she receives a benign diagnosis? How did knowing contrast with the period of waiting? Try writing about this space of waiting from both the patient and medical provider’s viewpoint. Write for 10 minutes.

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