Narrative Medicine

Narrative Medicine Monday: Cooper’s Heart

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Writer Rebecca Gummere writes in Oprah about the unimaginable loss she experiences when her infant son dies suddenly in her essay “Cooper’s Heart.” Gummere begins by describing the heart, how it starts in gestation, how it pumps throughout life: “Even the heart of a baby who lives just 42 days will pulsate more than 6 million times before its final, fluttering beat.” She then returns to October 1982, to the time when her son Cooper was born.

Just before discharge from the hospital, her pediatrician hears a heart murmur and suggests evaluation by a pediatric cardiologist, who performs an x-ray, then an ultrasound. The cardiologist receives the results and ushers the young couple into his office: “‘Do you know what a heart looks like?’ he asked, and I remember having one distinct thought: We should run.” Gummere captures the indelible urge as a patient, as a family member, to flee when faced with a difficult diagnosis.

The cardiologist breaks the news that their newborn son will need urgent surgery. The surgery is successful and Cooper is admitted to the NICU, a place Gummere describes as being “neither night nor day but another kind of time altogether.” Cooper improves and Gummere is able to bring him home. He gains weight, “and once he was in a regular feeding routine, he was able to sleep. His cheeks grew round, and he kicked his legs in excitement. I let myself breathe.”

That December, when Cooper is 6 weeks old, Gummere notes one night that he seems cold: “Then this: He wakes, fussing, squirming. I change his diaper and notice he is cool, so cool to the touch, and his skin has gone white, his surgical scar now a harsh purple line against his pale torso.” Her husband is away on a business trip. She calls her pediatrician, who eventually suggests Cooper be hospitalized. She calls a neighbor and readies her toddler son, only to realize that Cooper “…is not breathing,’ I say, and I know it is true. ‘Call 911,’ I shout, and then everything is changed.”

Everything is changed, as Gummere describes her own pleading with God: “‘Please, God, not my baby, not my baby. Please don’t take my baby.’
At last one of the paramedics pronounces what we all know: ‘This baby is deceased.'” In the wake of this tragedy, Gummere, though devastated, consents to the mandatory autopsy that is required of a death at home, “allowing the hospital to do what it must.”

Gummere tells her 2-year-old son that “God is taking good care of our baby, but I am not sure I believe it, not sure at all.” We can sense her wrestling with the idea of a higher power: “I want God to be real. I need there to be Someone in charge, and I need there to be a heaven, some place where I know my baby is safe and cared for and loved.”

Several times after Cooper dies, Gummere asks God: Where are you now? Often when we face difficult or traumatic situations as patients or as healthcare professionals, our perception of God or a higher power can be alterered or challenged. Have you ever asked this question of God? Did you get an answer?

Over a year after her son’s heartbreaking death, Gummere delivers a healthy baby girl and she is “filled with joy and fear.” Understandably, she is constantly “on guard,” ready for the worst. As the years pass though, Gummere shares that “I am forgetting altogether about dusting the pictures of Cooper on the mantel.” What role does time play in Gummere’s experience?

Gummere begins searching for reasons, for some semblance of answers, and enters seminary. She shares her varied identities: “I am part scholar, part detective, both parts waiting to be struck like Paul on the road to Damascus, knocked facedown in the dust, then renamed, remade, given new eyes to see some revelation of God woven in the very fabric of the universe.”

Her understanding and faith, though, continues to be challenged. Throughout seminary, when a friend is diagnosed with an inoperable brain tumor, when a local teen dies by suicide, she wonders to God: Where are You now?

Seven years after he son’s death, Gummere enters chaplaincy training. Against her adviser’s advice, she chooses the local Children’s hospital where her own son was cared for and died. During this training, Gummere meets the same pathologist who performed Cooper’s autopsy. At her request, the pathologist goes over her son’s autopsy in great detail and then shares “his role in training medical students and his special area of interest, the heart-lung system, describing how he procures and preserves the organs during the autopsy to use them in teaching…. He is quiet for a long moment and then says, ‘I still have your son’s heart and lungs. Do you want to see them?'”

Gummere describes what she finds in the morgue, how the pathologist reaches “down into the bucket, he brings up all that remains of my son, and in the next instant I hold in my hands the heart that had been inside the infant who had been inside of me.”

She is eventually able to “begin to do a new thing, to move beyond grief and guilt into wonder, to celebrate what I was part of creating— not what was lost but what was alive, what moved and pulsated deep inside of me, what seems to be in some way part of me still.”

Gummere asks “What is God?” And shares that her own answer to this question has shifted over time. Ultimately, Gummere discovers that there is no answer, but “there is love, the kind that binds us to each other in ways beyond our knowing, ways that span distance, melt time, rupture the membrane between the living and the dead.”

Writing Prompt: Think of a tragedy you’ve encountered – in your own life or in the life of a patient. Did this experience affect your view of God or a higher power? Alternatively, think of a time, for you or a patient, when “everything is changed.” What happened in that moment and what questions did you struggle with afterward? Did the passage of time alter those questions or the answers? 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: 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

Narrative Medicine Monday: Mom at Bedside, Appears Calm

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I recently attended Harvard’s Writing, Publishing and Social Media for Healthcare Professionals conference and wrote about how networking and finding “my tribe” was a meaningful part of the conference. Case in point: a friend I met there recalled my interest in narrative medicine when she went to a talk by Dr. Suzanne Koven, the Writer in Residence at Massachusetts General Hospital. Dr. Koven is an internist and writer and has spearheaded the innovative Literature & Medicine program at MGH. My friend initiated a virtual introduction and Dr. Koven kindly agreed to speak with me about her successful program at MGH.

I’m inspired by her work in bringing narrative medicine to front-line medical providers. Today I’m featuring a New England Journal of Medicine piece she wrote from a very personal experience titled “Mom at Bedside, Appears Calm.”

Koven opens the essay with the things she carries “everywhere we go… two plastic syringes, each preloaded with 5 mg of liquid Valium….” She describes how they treat her son at “the first sign of blinking or twitching,” and that “[w]hen he relaxes, so do we.”

Koven is a physician, with all of the benefits and pitfalls that entails, navigating the tumultuous waters of a loved one suffering an illness that is particularly unpredictable and unnerving, especially when it affects a child. Her son continues to seize, still without an identifiable cause, taking “40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops.”

With subsequent admissions to the hospital, Koven finds that she grows “more at ease” with the other parents of ill children and that she “clings to the nurses, Jen and Sarah and Kristen and ‘the other Jen,’ as we call her.” She glances at her son’s chart one night and it reads: “Mom at bedside. Appears calm.”

Though her son is eventually diagnosed and treated effectively, grows into adulthood and no longer suffers seizures, this period of unpredictable anxiety still haunts her: “occasionally my terror will snap to life again…. A siren sounds…. I still stop to see which way the ambulance is heading.”

Writing Prompt: Nowadays much of the medical record, including a physician’s progress note, is available right away to the patient via an online portal. Have you read a phrase or comment in your medical record that gave you pause, caused reflection? Did the comment align with how you felt in that moment, how you were perceived by the physician or nurse? If you’re a doctor, how would you answer the question Koven received: “Is it easier or hard to have a sick child when [you’re a] doctor?” Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Still Not Convinced You Need a Flu Shot?

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Aaron E. Carroll provides a straightforward explanation as to why getting the flu shot is imperative to a healthy community. In his New York Times article “Still Not Convinced You Need a Flu Shot?” he notes we may be passing on the virus without realizing it, to people much more vulnerable than ourselves: “You can infect others a day before you show any symptoms, and up to a week after becoming sick. Children can pass along the virus for even longer than that.”

Carroll points out our lack of concern about the flu virus, so familiar every winter, is illogical: “Because the flu is so common, we tend to minimize its importance. Consider the contrast with how the United States responded to Ebola a few years ago. We had a handful of infections, almost none of them contracted here. One person died. Yet some states considered travel bans, and others started quarantining people.” He argues that we should be much more concerned about the flu, noting that influenza is the “only cause of death in the top 10 that could be significantly reduced by a vaccine. Lowering risks of heart disease, cancer or Alzheimer’s are much, much harder to do.” We have a way to decrease the morbidity and mortality from a common illness yet we choose not to harness that opportunity.

By looking at the history of the varicella vaccination, Carroll illustrates the benefit we gain through herd immunity and the ethical consideration of getting immunized even if you yourself are not at high risk. He notes that babies were dying from chicken pox prior to implementation of the vaccine, but “as rates of vaccination rose, the rates of death from varicella were low…. But more significant, from 2004 through 2007, not one child younger than 1 year old died in the United States from chickenpox. What was amazing about this finding was that we don’t vaccinate children that young for chickenpox — therefore, those babies’ deaths were not prevented because they were vaccinated. Their deaths were prevented because we vaccinated their older siblings.”

In a previous Narrative Medicine Monday post, I highlighted a New York Times article written by Dr. Danielle Ofri that I’ve used when teaching narrative medicine courses to medical professionals. It illustrates the challenge of communication between physicians and patients and why there often is a disconnect. How can we improve the dialogue to better inform the public and, ultimately, save lives?

Writing Prompt: Do you get your flu shot every year? Why or why not? Do you feel that you understand the reasoning for immunizations? What information might help you better understand? If you’re a medical provider, have you struggled to convey such information to patients? Think of such a time and write for 10 minutes.

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Ramblings

Free Write Friday: Dressing

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He brings his stack of neatly folded clothes, procured the night before, into the master bathroom. He likes to dress with Mama in the morning, inky sky evolving outside the frosted windows.

He puts his socks on first, insists they match. So I bought him twelve pairs of athletic socks, all white, identical. He can pull them up and over his calves, a satisfiable stretch.

Next is the underwear, logoed with superhero emblems, bright elastic trim. They too come in plastic wrapping, in neat sets of six or eight or ten. I never understood the “days of the week” underwear until I had children: it’s exhausting for them, for me to watch, to choose what to wear each day, even undergarments.

Next is the t-shirt; can’t be too tight on the neck, on the arms, must hang just so. He likes orange, bright colors. Pixelated hamburgers, paper airplanes, whimsical animals dance on the silk screened front. He pulls them overhead, sometimes his mousy head gets stuck, needing a tug from Mom to help his straining face emerge.

Last, the pants. He likes elastic bands: comfortable, practical. He pulls one leg through, then the other. Doesn’t bother to regard himself in the mirror; instead he rushes off to gather other treasures and accessories from his room.

He shuffles back in, rainbow suspenders in hand, clip-on tie already attached to the front of his waffle t-shirt. “Can you help me, Mama?” His legs shuffle back and forth impatiently; he wants his outfit completed. I clip on the suspenders, straighten his orange necktie. He smiles broadly, proud as he sashays into his day.

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Ramblings

Free Write Friday: Couch

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He cried when they took the old couch away. It sat on the front lawn unceremoniously as they carried in the new one: grey heathered tweed, low back, firm cushions, stylish, contemporary.

The old couch looked bulky, awkward in comparison. Beige and bought on a whim over a decade before, soon after we were married. We needed a new couch and had money to spare. Two professionals, no children. We stopped at a furniture store on the way to my brother’s house one day and chose it quickly, unresearched. Unusual for a measured, calculated shopper like me. I was anxious to make our new house a home; real furniture seemed imperative and urgent at the time.

But it served us well through two homes, three children. Substantial back cushions held their form all those years. Good building blocks for fashioning forts. The length just right to stretch out for naps, our toes barely brushing the armrest. We’d pull a hand woven blanket over us, cocooning for a winter hibernation or a spring siesta in the waning afternoon sunlight.

I brought my babies home to that couch, Boppy pillow on my lap, tiny infant swaddled in my arms. The cushions held me through the uncertainty, the exhaustion, the stinging pain of an aching postpartum body nursing all hours of the night and day.

We let the kids jump on it; by the time they came around it was already worn, no need to keep up appearances or needlessly coddle the not fragile.

We’d greet friends, old and new. Birthday gatherings, movie nights, holidays with family, interviews with potential nannies. All of them sat, back upright, feet sturdy on the floor or reclined, elbow cocked back, plate full of potluck fare tidbits in hand.

He cried when they took the old couch away. I felt it too, the tug, the wrenching. So much contained in that substance of wood and fabric.

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Narrative Medicine

Narrative Medicine Monday: Air Hunger

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The narrator visits her mother in the hospital in “Air Hunger,” a striking short essay found in University of Virginia’s narrative medicine journal Hospital Drive. 

Two months have passed since she last saw her mother, but in the interim the narrator notes her mother has “become a patient.” The details the writer shares give us a glimpse into how her mother’s illness has changed her over time. Her mother barely touches the lunch tray beside her hospital bed: “She picks at her food, but it’s air that she’s hungry for.” The narrator wants to ask her mom how she feels, but already knows the answer: “I can see what I see, I can hear what I hear.”

Writing Prompt: Have you witnessed a loved one’s deterioration of health over time? What was it like to see them in one light and weeks or months later note a dramatic change? Do you remember a moment when they became, either to themselves, to you or to others, “a patient?” Write for 10 minutes. 

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Ramblings

Free Write Friday: Eclipse

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1991

I remember standing in a small field on Kauai, thick kelly green blades of grass underfoot. The square glasses, opaque cellophane-like lenses didn’t seem to do much at all. I was told to look up, face skyward. My older teenage brother had built a box, a contraption that revealed a projection of the eclipse. It was all underwhelming, the tiny crescent in the sky, projected on the cardboard. I remember thinking, ungraciously: This is it? I don’t remember it getting cold or dark or being moved in any significant way. After the novelty of the moment wore off, I wanted to get on with it, proceed with our vacation day. Head to the pool, play at the beach. I had only a vague concept of what I was looking at, looking for. 

2017

He starts to cry as the temperature drops. I want to take it all in, but he’s a heap on the wet grass, weeping beneath his paper solar eclipse glasses stapled to the back of a child’s tiger face mask. Why does the sun have to disappear? Why does it have to happen only today? He wants to ride his bike around the perimeter of the park but Dad says let’s wait until after 10:20 a.m., the point of maximal partial eclipse, 92% in these parts. He collapses into the whimpering mess of a typical three-year-old: unpredictable, unintelligible wailing. 

We begin to feel a chill, our friends put on sweatshirts. I’m unprepared and goosebumps emerge on my bare arms. There’s a festive feel, the large field peppered with strangers in lawn chairs, blankets splayed out with picnic foods, cardboard contraptions and eclipse glasses at the ready. My son is hugging his knees, sitting on the gravel path. His wails drown out the crowd, focused skyward, as they start cheering. 

I’m anxious about my one year old, afraid she’ll gaze directly at the sun. All faces turned upward, leering at the spectacle. She’ll follow suit. But I have to attend to my three-year-old, whimpering about the sun, the moon, a desperation in misunderstanding. I think about the historic panic about such an event: the sun disappearing momentarily. Of course it would feel like an omen, a harbinger of doom. He’s channeling that historic angst, knowing that the sky darkening midmorning is unnatural, feels off. 

I crouch beside him, rubbing his back, trying to convince him it’s all right. I can’t tell if he’s upset because the sun is disappearing or because I can’t keep the eclipse from remaining for another day so he can see it tomorrow. It doesn’t matter. It’s the illogic of a three-year-old tantrum. 

The air seems filtered, a hazy Instagram “Nashville” tainting the late summer morning. Time speeds up and suspends, as if the eclipse causes a filtering of moments, a sifting of time. As if heavenly bodies aligning requires all to pause ceremoniously, a recognition of our minisculeness. And yet nothing waits for the three-year-old angst. He rocks in my arms until the typical light returns and all is as it should be again. 

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