Narrative Medicine

Narrative Medicine Monday: Foley Catheter

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Poet Kimberly Johnson shares the experience of caring for her husband during his cancer treatment in “Foley Catheter.” Johnson writes about a different kind of intimacy, that of a caregiver for a loved one.

She begins with the mechanics of cleaning her husband’s catheter with “kindliest touch,” changing the drainage bag. This interaction creates a different dimension to their partnership. The poem is a kind of contemplation on marriage, on how we care for those we commit to even as their bodies fail, are transformed: “When I vowed for worse / Unwitting did I wed this”. Johnson writes with tenderness, but also refreshing clarity that this “jumble / Of exposed plumbing” has not been an easy experience to maneuver.

In reading Johnson’s poem, I think not only of the different intimacies of marriage, but also the vulnerability that arises between patient and clinician. Each day patients confide in us, let us care for their bodies, share things that they are sometimes unable to share with those closest to them. It is a privilege, a gift, and, at times, a heavy weight to carry.

Johnson’s honesty reveals a different kind of intimacy that arises out of caring for her ill husband. As his nurse, this other connection “Opens—ruthless and indecent, consuming / All our hiddenmosts.” She ends with the words we use, tying the tenacity of a tumor to that of the cherished spouse: “In a body, immodest / Such hunger we sometimes call tumor; / In a marriage / It’s cherish. From the Latin for cost.”

Writing prompt: If you’ve cared for a loved one who was ill, how did this interaction alter or add layers to your relationship? Has intimacy ever cost you anything? If you’re a healthcare provider, what are the benefits, or the drawbacks, of being exposed to patients lives and bodies in such a profound way? Has that experience changed you or the way you interact in your personal relationships? Write for 10 minutes.

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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

Narrative Medicine Monday: Holdfast

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Poet and essayist Robin Beth Schaer writes of death and the necessity of touch in “Holdfast.” She starts by recognizing that we tend to leave the dead alone, they “are for morticians & butchers / to touch. Only a gloved hand. Even my son / will leave a grounded wren or bat alone…”

What is too fragile to hold on to? Schaer contends butterflies are “too fragile to hold / alive, just the brush of skin could rip / a wing.” She shares about a beloved friend who she never touched. They didn’t speak of her terminal illness or of “the days pierced by radiation.” There is a shrouding of her friend’s illness, a compartmentalization in an effort to protect and respect her wishes, but the result was an absence of physical connection.

Shaer concludes that “We should hold each other more / while we are still alive, even if it hurts.” She notes that baby monkeys prefer touch over a more caloric type of nourishment. I remember this study from my college psychology days. It speaks to that which we seem to know as young children, forget, and relearn over time: holding fast to each other is what may matter most in this world. Shaer, like many of us, finds herself agreeing with the baby monkeys: “I would choose to starve & hold the soft body.”

Writing Prompt: Have you had a friend or patient or loved one who was too ill or seemed to fragile to touch? Do you think touch can have a healing effect or that lack of touch can be detrimental? How have you seen this manifested in your life or a patient’s life? What are the different ways we hold on to each other, both literally and figuratively? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Heartbeats

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In honor of World AIDS Day yesterday, today’s Narrative Medicine Monday will be a poem by Melvin Dixon, recently highlighted by poets.org. In “Heartbeats,” Dixon sets a staccato cadence that reveals the evolution of a disease.

At the start of the poem, the narrator is the picture of good health: “Work out. Ten laps….Eat right. Rest well.” Then, he notes the “Hard nodes. Beware.” Dixon achieves an astonishing flow, given each sentence is just two syllables. The reader is forced to stop and consider the weight, the gravity of the situation that deepens, even as the lines remain short.

Dixon is able to convey the medicine with simple, ordinary words: “Reds thin. Whites low.” There is a turn in the poem with the narrator showing resolve: “Get mad. Fight back.” In this moment, he repeats previous lines found during times of health: “Call home. Rest well.”

The focus then shifts to the mechanics of the body, the breath: “Breathe in. Breathe out. / No air. No air.” Time becomes fluid, altered when one is sick, one is dying: “Six months? Three weeks?… Today? Tonight?” I find that I am holding my breath as I finish Dixon’s poem. I immediately look him up, knowing the likely outcome but hoping it will end differently just the same.

Writing Prompt: Try writing a poem about an illness or health challenge from diagnosis to treatment in short fragmented sentences, like Dixon’s “Heartbeats.” Consider diabetes or cancer, dialysis or pregnancy. How does the limitation of short sentences crystallize the situation? Alternatively, think of a moment you’ve shared, either personal or in a healthcare setting, with a patient with HIV or AIDS in the 1980s or 90s. Write this scene as it occurred during that time period, then reimagine the same scene in a modern setting. What changes, what remains the same? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Complaint

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We discussed writer and physician William Carlos Williams’ “Complaint” during a poetry lecture at the first workshop of Harvard’s Media & Medicine program. I was struck by how differently those in the class, mostly clinicians, interpreted this poem.

I saw it as Williams’ manifesto for physicians. Healthcare professionals often feel a calling to their work. Though it is a challenging road, in both training and practice, there is rich meaning inherent in the work we do. Williams at first seems reluctant to move into the dark in the middle of the night, but when he arrives to the patient’s home, he is able to “shake off the cold.” He finds a “great woman / on her side in the bed.” There was discussion as to what Williams meant by “great woman.” Why do you think he used this adjective? Do you find his tone in the poem complementary or otherwise?

There were different thoughts on Williams’ curious use of “perhaps” in the following lines: “She is sick, / perhaps vomiting, / perhaps laboring / to give birth to a tenth child.” These are things that, as her physician, you’d expect him to be clear about. I wonder if the use of “perhaps” is a commentary on medicine itself. Our patients could be suffering, and do, from all kinds of illness and ailments and, though not interchangeable, regardless of their disease, we owe them our attention and compassion.

Williams ends tenderly, a hope for the profession, despite a tone of distancing himself from the situation. These last lines reveal the intimacy that often occurs between healthcare providers and patients. The doctor begins in the chill of midnight, going because he is called, but ends with this moment of compassion. Can you relate to this scene, either as a patient or as a physician?

Writing Prompt: Do you think in today’s world of modern medicine patients and their doctors still connect in the same way as during Williams’ era? How is a house call different from an office visit at a clinic? What do new technologies (email, video visits, chat) offer patients and their medical providers, and how do these interactions limit that relationship? Alternatively, think about the title of this poem. Why do you think Williams called it “Complaint?” Write for 10 minutes.

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Narrative Medicine Monday: Throat

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Gabriel Spera writes of how our body changes in sinister ways in his award winning Bellevue Literary Review poem “Throat.” Spera speaks of how aging can alter a previously cherished reality, in this case, a love of food: “… life takes or twists what we hold most dear, / the heart’s fire of youth swapped for the heartburn / of middle age, which ends each feast at the medicine chest.”

In the midst of these bothersome symptoms, Spera’s friend gets difficult news: “She spoke bluntly, the doctor, as though hiding her chagrin / at all the time they’d wasted chasing red herrings— / ulcers and reflux, bacterial infection. They’d begin / with the chemo right away…” This is a constant fear, a threat with any ailment. During a visit, I often ask patients what they are most concerned about to ensure I’m addressing whatever issue weighs heavily on their own mind. Sometimes I’m surprised at their response, their occupation with a worry I would not have considered in the differential of likely, or even possible, causes. Often there are concerns about the least likely but most serious cause of a symptom: a headache is a brain tumor, a cough is lung cancer, a skin change is melanoma. Most of us have a tendency to worry about the worst case scenario.

In this case, the man is eventually diagnosed with that worst case —cancer. Spera’s lyrical descriptions of the ensuing treatment are infused with detail. The IV bag of chemo: “The tube: a string gone slack without a puppeteer / to tug it, a sleeping viper, a vine, a spill / of vermicelli, a nematode keen to disappear / into the cool earth of his arm…” The radiation is “like a cluster bomb / of atom-sized suns. Then the fallout, the scorched earth / of his flesh, the fatigue, the itch of skin too numb / to scratch.”

The reader is transported into this suffering body, the treatment itself causing “A backlash, a body blow: What stunted the tumor stunned / his muscles, his neck’s whole scaffold rigidized / like leather left to the mercy of the sun…” Within the details of this devastating illness and its treatment lies broader truths. Spera reflects that “Sometimes, what leaves us frees us, and what remains / holds soul enough…” Ultimately, the conclusion is that “despite conflicting evidence, / even the least life is worth what it inflicts.”

Writing Prompt: When there is a recurrence of cancer, the patient questions if “He’d had enough, or rather, no longer had / enough to keep losing chunks of himself, ill-equipped / to envision any future worth suffering further for.” Have you had an illness that caused you to question if you’d had “enough?” Have you had a patient who told you that they’d had enough? What does “enough” mean? Write for 10 minutes.

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Narrative Medicine Monday: Karyotype

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Poet Rebekah Denison Hewitt is one of Narrative Magazine’s poetry contest winners this year. Her “Karyotype and Other Poems” are a sequence of three poems that reveal different aspects of motherhood, from fetal testing to the fear and risk inherent in parenting.

In “Karyotype,” Hewitt illuminates the process of cell-free DNA extracted from a mother’s blood around ten weeks of gestation, a test that provides genetic information about the fetus. Hewitt’s genetic counselor “begins / to list every disorder / a lab can find in a fetus….” When this relatively new test became available with my third child, despite my medical background, I was still struck, as Hewitt seems, by the wonder of it, these fragments of my baby’s DNA floating through my veins: “The needled blood / from my arm a soup / of genetic code.”

Though Hewitt recalls a high school quiz “matching symptoms to disorder,” there is a turn in her reflection on the soul: “I think souls must exist / in wanted things. Dogs go to heaven, not roaches.”

Hewitt notes there is a calculation to how much information we really want to know: “Just trisomy 21, 18, 13? / Or microdeletions, too?  / My blood contains the risk / of something missing—a malformation / of the head—or worse.” Ultimately, though, she brings the question back to the essentials of what makes us human, beyond that of just our strands of DNA: “What makes this body inside me / more than an animal, clawing its way out…”

Writing Prompt: Hewitt writes about what she learned of some genetic disorders in high school and how she recalled this later when she was getting cell-free DNA testing. Think of something you learned in a science class that, many years later, manifested in an unexpected way in your life: genetics, biology, chemistry. Alternatively, think of a time you had a medical test done and the broader issues (what constitutes a “soul?”) that test might’ve brought up for you. Write for 10 minutes.

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Narrative Medicine Monday: Flamingos

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Poet Zeina Hashem Beck’s “Flamingos” in The Southeast Review reflects on the normalcy that persists, even in the midst of a child’s illness.

She begins in second person, as “the nurses pushed your bed into the OR.” The context quickly takes shape, the way a promise is made in response to outstretched arms “to see the flamingos / in the hospital garden downstairs.”

Hashem Beck signals there are expectations when caring for a loved one who is ill, but that we sometimes do the irrational: “The worried aren’t supposed to be hungry, / but I ordered food because it was reassuring.” The food represents a comforting nourishment, even if not consumed.

In “Flamingos,” Hashem Beck shows the divide between the “outside” world and that of the world of illness: surgery, the ICU, hospitals. In caring for her daughter, she is so removed from this alternate world that when she returns home for the simple act of a shower, she stumbles with the cadence of normalcy: “hair dripping, my arms full / of laundry, for a second I must have forgotten / my step, twisted & cracked my ankle.” A friend helps her to the emergency room, and all she can do is laugh, tell the doctor to “to fix my ankle, quick, I have a daughter / waiting in a room upstairs…”

“Flamingos” is a reflection on how life goes on, how “life will sometimes infect your daughter’s lung / & fracture your ankle in the same week.” There is a kind of apology, a stream of motherly advice in the end. The wisdom that even on mundane days, the days “the car doesn’t break down, / & the children are healthy, & your husband / loves you … you will be terrified nevertheless, / & sometimes empty. It’s ok if you forget / to put one foot in front of the other.”

Writing Prompt: When you or a loved one is ill, do you feel the divide between the “outside” world and the one you’re living through? In what moments does that divide manifest? I like the allowance the poet gives, that’s it’s okay to forget to put one foot in front of the other. Have you ever experienced a situation when it felt like all you could do was put one foot in front of the other? What happened, or might have, if you didn’t? Write for 10 minutes.

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Narrative Medicine Monday: The Oncologist

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Poet Carole Stone writes about “The Oncologist” in the Bellevue Literary Review. Stone starts with the questionnaire she receives: “Do you have an appetite? No. / Are you anxious? Yes.” I think of all the questionnaires we hand out to patients to save time, to make sure we get vital history, to screen for other issues that might not be readily apparent just by looking at the reason the patient came in. As a primary care physician, I can’t tell you how many times I’ve seen a patient for knee pain or seasonal allergies or a Pap smear, who actually wants to discuss their depression or panic attacks or fear of developing the same chronic illness as their cousin.

In Stone’s brief poem, though, she reveals the multitude that is assumed, that is missed, by these questionnaires and by the rote interventions that follow. Stone shares her inner dialogue when the woman suggests counseling and a writing group: “I imagine an unsharpened pencil, / and a blank page, / tell her, no.”

In the end, the patient and the oncologist miss a connection. Stone asks herself “Is this denial?” But verbalizes only that she has “nothing to say.” In modern medicine’s pressured office visits, sometimes the most important communication, how the patient is really feeling, what they are thinking, the opportunity to get to know a person beyond their disease, gets lost in all that goes unsaid between patient and doctor.

Writing Prompt: Stone declines the woman’s offer to try counseling or a writing group, commenting on her “stranger’s eyes.” Have you encountered a similar situation with a medical professional where they felt like a stranger? What is the balance of intimacy and intrusion when caring for someone who is gravely ill, has cancer or a debilitating chronic disease? Consider writing about a medical questionnaire you received and what it did and did not reveal. Alternatively, try writing about this exchange from both the patient and the oncologist’s point of view. Write for 10 minutes.

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Narrative Medicine Monday: Hospital

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Poet and essayist Marianne Boruch illuminates a scene from a “Hospital.” Her poem provides a contrast of what an outsider might experience and the reality of those who work in such a place. She notes that “It seems / as if the end of the world / has never happened in here.” For patients and their loved ones, their worst day, their worst moment, often occurs in the confines of the hospital.

The narrator expects more, a kind of signal, of “smoke” or “dizzy flaring” but instead she waits, watching people go by as if on a conveyor. She sees “them pass, the surgical folk– / nurses, doctors, the guy who hangs up / the blood drop–ready for lunch…” They are going about their day, their work. She catches them at “the end of a joke,” but misses the punch line. Instead, it is lost in “their brief laughter.”

Boruch’s reflection reminds me of Mary Oliver’s lines in Wild Geese: “Tell me about despair, yours, and I will tell you mine. / Meanwhile the world goes on.” Boruch’s poem reveals the dichotomy of a hospital: while some can be devastated, others go about their day, wearing their designated uniform of “a cheerful green or pale blue.”

When I have been a patient, or the loved one waiting for word, the usually familiar hospital is completely transformed from how it exists for me as a physician. Boruch captures these parallel worlds in her poem, and gives the reader space for reflection on their disconnect.

Writing Prompt: Think of the last time you were in a hospital as a patient, as a visitor, as a medical professional. What did you observe? How did your experience differ based on the reason why you were there? Write for 10 minutes.

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