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 Monday: What is the Language of Pain?

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Anne Boyer asks “What is the Language of Pain?” in this excerpt from her book The Undying. Her analysis of pain is a commentary on modern society: “To be a minor person in great pain at this point in history is to be a person who feels inside their body when most people just want to look.” To be sure, ours is a society of superficialities. Boyer goes on to outline the different kinds of pain, including the “epic pain of a cure.”

She argues that “pain doesn’t destroy language: it changes it.” She describes Hannah Arendt’s claim that pain’s “subjectivity is so intense that pain has no appearance.” Have you experienced this type of intense pain? Were you able to find the words, the language to describe it? Boyer argues that pain is, in fact, excessively communicative, that “if pain were silent and hidden, there would be no incentive for its infliction. Pain, indeed, is a condition that creates excessive appearance. Pain is a fluorescent feeling.”

Boyer concludes the the question is not whether pain can communicate, but actually “whether those people who insist that it does not are interested in what pain has to say, and whose bodies are doing the talking.”

Writing Prompt: Would you argue that “the spectacle of pain is what keeps us from understanding it, that what we see of pain is inadequate to what we can know?” Why or why not? Think of a time you’ve been in pain or witnessed a loved one or a patient in significant pain. Try writing (or drawing or painting) the experience with all of your senses. Alternatively, consider what pain has to say to you or those around you. Write for 10 minutes.

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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: 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 Monday: Medicine and Its Metaphors

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In this excerpt in Guernica from Eula Biss’ book On Immunity, she wonders at the different metaphors in medicine. Though paternalism is clearly fraught with issues, if it “has fallen out of favor in medicine… how we should care for other people remains a question.” Biss explains Michael Merry’s distinction between paternalism that promotes good or prevents harm, such as “in traffic laws, gun control, and environmental regulations,” and the misuse of regulations that are “often used to justify a coercive use of power.”

Biss notes the alternative that is offered, autonomy, has caused “the paternalism of doctors [to be replaced] by the consumerism of patients.” Today’s physicians see the results of this shift in their daily work, responding to patients’ requests of “tests and treatments from a menu based on [their] consumer research.” In modern medicine, the consumerist culture is such that, as Biss notes, “doctors may be tempted to give patients what we want, even when it is not good for us.”

How do we address the problems for patients and for healthcare providers with both the paternalistic and the consumerist cultures? Biss turns to the idea that a more caring framework might be the answer. When her son requires a surgery her father advises, “‘If you’re going to get medical care you’re going to have to trust someone.’” Biss notes she usually consults her father first regarding medical issues—she trusts him. But the decision point regarding her son’s medical situation was not her father’s area of expertise. She realized she had to rely on another’s advice.

Biss tries every other treatment option for her son that was suggested by other specialists or friends. She does her research. But eventually her son’s symptoms worsened: “Then his breathing, already loud, became irregular at night. I crouched next to his bed, holding my own breath during the pauses in his breathing to gauge how long he was going without air. After particularly long pauses he woke, gasping and coughing. I scheduled the surgery.”

When the day of the surgery comes, Biss “was most hopeful not that the surgery would enact a miracle, but that it would simply do no harm.” Biss then requests to remain with her son as he undergoes anesthesia, which the doctor resists: “Studies had shown, he told me, that the body language and facial expressions of anxious mothers can cause children to fear surgery and resist anesthesia.” Biss persists, and she and the anesthesiologist come to a compromise: she will hold his hand but not be in view of her son as the medicine takes effect. When he wakes from anesthesia, Biss has not been summoned to the recovery room yet and her son calls out for her in panic. The experience is traumatic for both Biss and her son. All the anesthesiologist offers is that her son won’t remember “any of this,” though Biss replies, “I will.”

Biss’ father offers a new metaphor for modern medicine, that I believe both patients and physicians can envision: Dracula. Her father argues that “‘medicine sucks the blood out of people in a lot of ways.’” There are the financial aspects for the patient, and dire emotional consequences for patients, their families, and often for healthcare providers, who are suffering from an epidemic of burnout. Biss notes that her physician father himself is “fairly skeptical of medicine,” stating that “‘most problems will get better if left alone. Those problems that do not get better if left alone are likely to kill the patient no matter what you do.’” It is a grim declaration in many ways, but perhaps the vampire metaphor puts patients and physicians on a more appropriate plane: working together to resist the anemia of compassion and trust that threaten us all, and in so doing improve the care we give and receive.

Writing Prompt: What metaphor do you think is most accurate of medicine today? Can you think of another metaphor for the difficulties encountered by patients and healthcare professionals? Have you experienced, as a patient or as a physician, the issues with paternalism or consumerism in medicine? Alternatively, what role should skepticism or comfort play in medicine? Write for 10 minutes.

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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 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: In Search of Collateral Beauty

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Writer Kat Solomon is “In Search of Collateral Beauty” in her recent Ploughshares essay. Solomon describes being wheeled into the Neonatal Intensive Care Unit to see her premature newborn, noting that “time has slipped away” but that “now, I am a mother.” Solomon provides a vivid description of the NICU, the “little room [with] its own symphony of beeps and blips,” the “plastic isolettes and incubators.” Her baby has arrived five weeks early. The first night, untethered to any tubes or isolation, her daughter is simply monitored, Solomon told she may be released the following day.

The next morning, though, they find the situation drastically different, their baby “sleeping in an enclosed isolette with an incubator like the kind I have seen on television, and she is connected to several wires and blinking machines.” Solomon has difficulty registering the change, and reaches out to touch her daughter: “I put my hand through the sleeve in the incubator but before my fingers reach her forehead, a nurse enters behind me. ‘Don’t touch her!’ she snaps. ‘She has a long day ahead of her.'” As medical providers we often forget that this is a foreign world to our patients and their families, a point Solomon expands on throughout her piece.

Though assured otherwise, Solomon can’t shake the thought that her baby’s feeding difficulties “must have happened because I was not there—would not have happened if I had been with her.” Solomon’s irrationality is relatable. As mothers, we often, even with evidence to the contrary, blame ourselves.

The language of the NICU strikes Solomon, a writer, as rich with metaphor. She Googles preterm infants and finds that “thirty-five weekers” are called “changelings.” Solomon sees her daughter as a changeling, noting the ephemeral quality of existence: “I’ve made a life, I think, but only now do I understand that in doing so I have also made a death.”

The young NICU doctor asks Solomon and her husband to sit and she realizes that this is an ominous request: “he has bad news, like on television.” The doctor explains that their daughter needs more tests to determine how best to treat her persistently distended abdomen. Solomon asks if it will resolve on it’s own, but the doctor replies that spontaneous resolution is no longer likely.

During Solomon’s experience in the NICU, she thinks of Lorrie Moore’s story “People Like That Are the Only People Here: Canonical Babbling in Peed Onk.” Moore’s story describes a child who suddenly becomes ill and her mother’s experience in the other “country” that is pediatric oncology. Moore’s short story is insightful and even humorous, and is one of my favorites to discuss with health professionals. The mother in Moore’s story finds a way to navigate this foreign land of pediatric oncology, but not without difficult interactions with medial providers, and the system, along the way. Solomon, too, finds much in Moore’s story relatable.

Solomon has a wrenching wait while her daughter has more tests, and eventually is called with the good news that the blockage resolved. She is, of course, relieved, but also angry, “directed completely at the doctor who told us that this outcome was no longer likely.” Can you relate to her experience? For those of us saturated in the medical world, it’s easy to forget the impact our prognosis, our words, may have, the fear they may instill.

Remaining in the NICU for observation, Solomon’s daughter has a “spell” where she stops breathing and this, the nurse informs them, means five more days in the hospital. This frightening episode ends up being the last of their “trials” in the NICU, but Solomon later reflects that, similarly to the mother in Moore’s story, there is a grief inherent in the “imagined version of the way things were supposed to go, the false sense of security that bad things only happen to other people.” I think those who suffer from severe illness, or care for those who do, often feel this kind of grief. Even when things improve, we, like Solomon, know in comparison we should feel “lucky” but can’t help but can’t help but mourn the loss of a cocooning naiveté.

Writing Prompt: What comes to your mind when you hear “changeling” or “spell?” What are some of the words we use in medicine that have other meanings, and what effect might these have on the patient or their family? If you’re not in medicine, think of words that you’ve heard in the hospital or clinic that conjured a different thought or a metaphor. Alternatively, read Lorrie Moore’s “People Like That Are the Only People Here: Canonical Babbling in Peed Onk” and consider if you agree that, even with illness, “there’s a lot of collateral beauty along the way.” Write for 10 minutes.

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