Narrative Medicine

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

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: 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

Narrative Medicine Monday: What almost dying taught me about living

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Writer and speaker Suleika Jaouad urges us to rethink the binary nature of health and illness in her TED talk “What almost dying taught me about living.”

Jaouad, diagnosed with leukemia herself at the young age of 22, questions the narrative of cancer survivor as a hero’s journey. She recalls that “the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor… it’s a myth. It isn’t just untrue, it’s dangerous, because it erases the very real challenges of recovery.”

Jaouad finds herself discharged from the hospital and struggling with reentry to life. She had spent all of her energy just trying to survive, and now needs to find a new way of living amidst expectations of constant gratitude and labels of heroism. 

Her assertion is that often the most challenging aspect of a jarring interruption to life occurs after the inciting event or episode, in her case, cancer, has resolved. It is the attempt in weeks, months, years after to readjust to the daily act of living that can be the most grueling. She notes that “we talk about reentry in the context of war and incarceration. But we don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.” Jaouad urges us instead to accept that there is a spectrum of health and illness, and we should “find ways to live in the in-between place, managing whatever body and mind we currently have.”

Through writing a column about her experience fighting cancer and reentry into the world of the well, Jaouad begins getting letters from a vast array of people who relate to her story, her inspiration that “you can be held hostage by the worst thing that’s ever happened to you and allow it to hijack your remaining days, or you can find a way forward.”

Jaouad herself seems to find a way forward by sharing her story and connecting with others. Her struggle certainly resonates with me and my own recent life interruption. This concept of the nonbinary nature of well and unwell is also important for medical providers to consider. As primary care physicians, we are the ones who not only deliver a life altering diagnosis, but also who continue to care for patients long after their bodies recover or continue on with a chronic disease. I’m looking forward to reading Jaouad’s book on this topic, Between Two Kingdoms, out next year.

In the end, Jaouad concludes that we need to “stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.”

Writing Prompt: Jaouad assures us that every single one of us will have our life interrupted, either by illness or “some other heartbreak or trauma.” Think of a a time your life has been interrupted. What was the hardest aspect for you? What was your experience of “reentry?” Alternatively, think about the concepts of health and illness. What do these words mean to you, either as a patient or as a medical provider? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Going Blind

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

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

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

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

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

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Narrative Medicine, Writing

Narrative Medicine Monday: The Fall of Icarus & Musee des Beaux Arts

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I’m just finishing up a wonderful poetry course taught by Michelle Penaloza, and recently explored ekphrastic poetry. These are poems written in response to a piece of art. She had us read two different poems written about Brueghel’s “Landscape with the Fall of Icarus.”

I found the poem by W.H. Auden relates to medicine and illness in a way, a commentary on how suffering exists in the world while the rest of life goes on. Auden observes how well the “old Masters” understood suffering, “how it takes place / While someone else is eating or opening a window or just walking dully along.” For people who are struggling with illness, especially chronic illness, this normalcy and indifference of the rest of the world can seem almost as an affront. When dealing with a difficult diagnosis, it can be painful to see the world advance as it always has, even though it must. In Icarus’ case, Auden notes that “the expensive delicate ship that must have seen / Something amazing … / Had somewhere to get to and sailed calmly on.”

Writing Prompt: Consider writing your own ekphrastic poem or free write in response to Breughel’s “The Fall of Icarus.” What do you notice about the painting and how might you expand on its meaning? If you’re a medical provider, have you seen others suffering but, for whatever reason, had to move “calmly on?” Do you think medical training or the medical system contributes to this type of response? If so, how? As a patient, have you experienced an illness or suffering while the rest of the world goes on, unaware? How did that make you feel? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Brain Biopsy

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Pathologist and poet Dr. Srinivas Mandavilli illuminates the microscopic, and the universal, in JAMA‘s “Brain Biopsy.”

Mandavilli lets us know that in “neuroradiology they have a gift for reading the mind.” In moving a glass slide, he learns to “bow in silence and see an underworld / —an otherworld where planets improvise like nuclei.” The narrator alternates between the microscopic and the broader cosmos. Through this, Mandavilli evokes a sense that we are all part of a grander whole, even the minuscule and aberrant parts of us.

His poem ends with the relational, with a hint at the journey we travel: “While we drive on a summer evening, she rests, / her long fingers intertwine, the heft / of her dark tresses strewn carelessly like the road ahead.”

Writing Prompt: Think of the smallest and largest components of life, of existence. How are they connected? Alternatively, pull out your old histology textbook or your child’s microscope. Examine a slide and write what you see, how this observation makes you feel. Write for 10 minutes.

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Narrative Medicine

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

Narrative Medicine Monday: Disease’s Gifts

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In “Disease’s Gifts,” poet Joy Ladin muses on fear and life and death in the face of illness. Ladin outlines the paradoxes of disease: “That you can be fearless / when fear is all you have” and that “you aren’t alone in loneliness.” This poem is an encouragement, a call to overcome and accept and succeed, even though “fear inverts / the meaning of success.” Ladin’s poem resonates because it offers words of hope while acknowledging the incongruity of illness. Disease can feel like “the end of the world,” and yet, Ladin contends, we all want to believe “you will survive it.”

Writing Prompt: What gifts, if any, have you experienced through illness? What role do you think fear plays in disease? Review Ladin’s list in the second to last stanza; what do you need to live? Write for 10 minutes.

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