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 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 Monday: My Grandmother’s Body

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Author Anna Leahy writes about “My Grandmother’s Body” in Sweet, an online literary journal. Leahy describes the funeral director, who arrives when called, wearing “his funeral-director suit.” The professional Leahy witnesses is experienced, noting “the stairs’ ninety-degree turn / without changing pace.” The director asks “if he might / lift her himself to carry her downstairs” and Leahy finds a kind of comfort in this. She thinks, “What a relief / to think of her last moment at home, cradled / in the man’s arms.”

Leahy’s poem is a snapshot of a moment and a man, revealing the funeral director’s practicality and reverence for his work and the relief this provides for those who love the deceased. We often reflect on the last moments right before a person dies, but Leahy’s poem, like Lisa Knopp’s “Leaving the Body,” focuses instead on those just after: the weighty finality, the people who interact with the body and the importance this holds for those still living.

Writing Prompt: Have you been near a dead body, either of a loved one or of a patient? What was the experience like? How was the body retrieved, and to where? How did you feel about how this was accomplished? Alternatively, think about your impressions of the funeral director as described by Leahy. Consider writing the scene from his point of view. Write for 10 minutes.

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Narrative Medicine Monday: Poof

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This elegy by poet Amy Gerstler was selected by this month’s Poem-a-Day curator, Maggie Smith. I wrote about how Smith’s poem “Good Bones” hangs on a nondescript bulletin board in our clinic, though I never did figure out who posted it there. Each morning this month, I’ve been eager to see what poem Smith selects.

It’s no surprise that I think poetry provides much needed perspective to the world of medicine, and Gerstler’s “Poof” is no exception. Gerstler begins with a small bag of ashes on her lap, a gift from her late friend’s family. She recalls the service, the details of “staring at rows of docked boats” and the woman’s “impossibly handsome son.”

Gerstler speaks directly to her old friend, remembering that “You were the pretty one. / In middle school I lived on Diet Coke and / your sexual reconnaissance reports.” She imagines an alternative storyline where “your father never hits / you or calls you a whore.” Through Gerstler’s memories, both real and imagined, we get a glimpse of their bond, of the woman she, and this world, lost, even though we never learn her name, her vocation. (Why is it that these are the first things we ask? Always: What’s your name? What do you do?)

Gerstler gives us a remembrance that is more: a cinematic illumination of who this woman was: “You still / reveal the esoteric mysteries of tampons. You / still learn Farsi and French from boyfriends / as your life ignites.”

I like that Gerstler considers alternate storylines of their history together. Our formative years can be like this, wondering what different versions of us might transpire. I imagine (and, reaching middle age myself, have already succumbed to such reveries) our later years might also be prone to wondering what other tributaries of life paths might exist in the universe.

Ultimately, we learn that their lifelong relationship remains much as it is was in their adolescence: “I’m still lagging behind, barking up all / the wrong trees, whipping out my scimitar far / in advance of what the occasion demands.” Gerstler’s tender flashes of moments between the two is a tribute not only to her late friend, but also for all of us who are lucky enough to have kept company with cherished friends over the decades.

Writing Prompt: Think of a person (or patient, if you’re a medical provider) important to you who was suddenly gone. Write them an elegy in second person, or, alternatively, a letter. What are the memories, the moments, that stand out to you? Did this person vanish, as they did for Gerstler, with a “poof,” or would you use a different way of describing their absence from your life? Alternatively, consider writing an elegy or a letter to a long-time friend or patient who is still alive. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: How Virginia Woolf Taught Me to Mourn

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Katharine Smyth explains “How Virginia Woolf Taught Me to Mourn” in her recent essay on Literary Hub. Smyth outlines how Woolf described the mourning period surrounding her mother’s death, and how that “spring of 1895 in London… may as well have been the winter of 2007 in Boston” when she was grieving her own father.

Smyth and her mother illustrate how people can react to grief differently. Her mother “saw the ringing doorbell as an interruption,” while Smyth “liked hearing from the outside world: grief is rapacious, and cards and flowers functioned as its fuel. As long as they continued to proliferate, the experience of loss was active, almost diverting. It was only when their numbers dwindled, then ceased altogether, that a kind of dullish hunger set in.” I think the same can be said of those who experience trauma. Often, others surround you during and immediately after the event, but as time progresses and active support dwindles, a loneliness takes its place.

One of Smyth’s friends “invited me to her parents’ apartment for a kind of mini sitting shiva. For several hours she and her mother listened as I talked about my father’s life; I loved that neither was cowed by death’s awkwardness.” This gift to Smyth seemed an unexpected balm. Do you think most of us succumb to death’s awkwardness? Why do you think this is a cultural norm?

Smyth notes that when the distractions end, “Above all, I disliked the passing of time, disliked the thought that every minute carried me further from my father.” She can relate to Woolf’s surreal experience in the wake of a parent’s death: “The tragedy of her mother’s death, she said, ‘was not that it made one, now and then and very intensely, unhappy. It was that it made her unreal; and us solemn, and self-conscious. We were made to act parts that we did not feel; to fumble for words that we did not know. . . . It made one hypocritical and immeshed in the conventions of sorrow.'”

Smyth identifies with Lily in Woolf’s To the Lighthouse: “her frustrations are those of the grown writer who must confront grief’s fogginess, its unreliability. ‘Why repeat this over and over again?’ she thinks angrily of her attempts to register the fact of Mrs. Ramsay’s passing.” Smyth, too, finds herself repeating, “My father is dead, I continued to say, my father is dead.”

In To the Lighthouse, Smyth discovers that Woolf conveys “her understanding that we all need some structure by which to contain and grapple with our dead.”

Writing Prompt: Although not religious, Smyth finds the act of sitting shiva cathartic, finds herself “longing for ritual, for structure, for some organizing principle by which to counter the awful shapelessness of loss.” Think of your own experience of grief or loss. Can you relate to the healing benefits of structure? Write for 10 minutes.

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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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Narrative Medicine Monday: And Still We Believed

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

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

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

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

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Narrative Medicine Monday: Solving for X

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Author Pam Durban tries “Solving for X” in her nonfiction piece in Brevity. Durban tells us that she’s “never been good at word problems,” the kind that involve trains and “variables of time, speed, and distance.” At seventy years old, she is now able to “manage the simpler calculations” such as knowing that she “doesn’t need a dental implant that lasts fifty years.” At her current age, though, she finds some of these “word problems of life” are riskier and “always end with an unsolvable X–the date of her death.”

Durban muses on how to manage these unsolvable Xs. She experiences a bout of amnesia in an E.R. and recalls an uneasiness with the concept of eternity, finds her “multiplying Xs” just as unnerving. Durban masterfully gives us a glimpse into the mind of a woman in the last part of her life, but highlights that even nearing the end, the question of time can be perplexing, unsettling and stretch out into the future.

Writing Prompt: Have you calculated, like Durban, your need for a thirty-year roof or if you’ll be around for the next solar eclipse? Can you relate to Durban’s unease with “multiplying Xs?” Why do you think she “sees a way” in the memory of returning to her father’s grave? If you are a medical provider who cares for elderly patients, what can you take from Durban’s essay that might be helpful in how you approach patients who are making decisions about medical care and treatment plans? Write for 10 minutes.

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Narrative Medicine Monday: The Bright Hour

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I first came across Nina Riggs’ book, The Bright Hour, because of its comparison to another popular memoir, physician author Paul Kalanithi’s When Breath Becomes Air.

Riggs was a poet, and her writing style reflects this; short chapters with descriptive elements and a musicality to the sentences that leaves us wanting more. She is honest and funny. Diagnosed with breast cancer in her thirties, a life just hitting its stride with two young boys in tow.

In describing Atul Gawande’s book Being Mortal, Riggs illuminates the heart of her own memoir “of living and dying.” She notes the attempt “to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.”

Riggs navigates the world of oncology and the process of dying with candor and a clear sense of self. When her oncologist discusses her case with colleagues she bristles at the standard name for the meeting of minds: “Tumor board: the term kills me every time I hear it. You’re just saying that to freak me out, I think. What is actually a group of doctors from different specialties discussing the specifics of your case together around a table sounds like a cancer court-martial or a torture tactic.”

She takes her young sons to her radiation oncology appointment in the hopes of getting them interested in the science behind the treatment. In the waiting room, she becomes acutely aware of how, taken as a group, her fellow cancer “militia” appear: “Suddenly I am aware of so many wheelchairs. So many unsteady steppers. So many pale faces and thin wisps of hair and ghostly bodies slumped in chairs. Angry, papery skin. Half-healed wounds. Growths and disfigurements straight out of the Brothers Grimm. So many heads held up by hands.” Have you ever been entrenched in a world of medicine or illness and then suddenly seen it from an outsider’s perspective?

Riggs ushers the reader into her new world as breast cancer patient. In a particularly striking scene following her mastectomy, she goes to pick out a breast form from the local expert, Alethia. “‘Welcome!’ She says. ‘Let’s find you a breast!’ She tells me that according to my insurance, I get to pick out six bras and a breast form…. The one she picks comes in a fancy square box with gold embossed writing: Nearly Me.” As Riggs’ contemporary, I could see the grave levity in the situation; Riggs is a master at sharing her experience, heartache and humor alike.

In the end, this is a memoir of a young woman who is dying. She acknowledges this and realizes that, near the end, there is a metamorphosis of light: “The term ‘bright spot’ takes on a whole new meaning, more like the opposite of silver lining: danger, bone pain, progression. More radiation. More pain medicine. More tests. Strange topsy-turvy cancer stuff: With scans, you long for a darkened screen…. Not one lit room to be found… not one single birthday candle awaiting its wish. No sign of life, no sign of anything about to begin.”

Writing Prompt: If you’ve read Kalanithi’s When Breath Becomes Air or Atul Gawande’s Being Mortal, how does their approach to writing about dying compare with The Bright Hour? Riggs comments on a kinship with the “Feeling Pretty Poorlies” she meets during her radiation treatment but because of HIPPA privacy regulations, never knows if they finished treatment or if it was “something else” that caused them to disappear. Did you ever participate in a treatment where you saw the same people regularly? Did you wonder about them after that time ended? Think about the privacy rules set in place to protect patients’ privacy. What are the benefits? Do you see any drawbacks? Write for 10 minutes.

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Narrative Medicine Monday: Of Mothers and Monkeys

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Caitlin Kuehn’s essay “Of Mothers and Monkeys” draws parallels between her research work with macaque monkeys and her mother receiving treatment for breast cancer in the same hospital. As her mother starts chemotherapy, Kuehn “rotate[s] between the animal ward and the human ward.”

Kuehn wrestles with the ethical ambiguity faced in animal research. Thinking of her own mother’s reaction to chemotherapy, she darts off to her work in the research lab, wondering “what animal first shared with my mother that sudden fear of a throat closing in… I realize that I—as a student, with very little power but a whole lot of responsibility—am complicit in a moral choice I have still not taken the time to make. Some days it is hard to remind myself that medical research has a purpose. Some days it is as clear as cancer. Some days I just do not know.”

When Kuehn’s mother needs injections to help boost her immune system after suffering from a serious sepsis infection, though Kuehn “could do a subcutaneous injection in the dark,” she becomes “shatteringly nervous” whenever she has to give her mother injections; the familiar activity takes on a different tone.

Kuehn’s mother begins to rely on her to answer medical questions, but Kuehn’s scientific expertise is limited to “what I have learned in my undergraduate science classes, or here at the lab. All of it applicable only to non-human mammals, or else too theoretical to be of any use for as intimate a need as this. I have no good answers.” I was struck by the fact that often, even for those of us who have extensive medical knowledge and training, we still lack “good answers” to those questions posed by suffering loved ones.

Kuehn has a strong reaction when her mother declares that she’s fighting her cancer for Kuehn and her sister: “She’s pushed her will to persevere off onto my sister and me. It’s too much pressure to be somebody else’s reason.” Have you ever been somebody else’s reason for fighting for survival? Did you have the same reaction as Kuehn to that kind of pressure?

Writing Prompt: At one point Kuehn responds to Domingo’s convulsions in the same comforting way she does when her own mother’s throat begins to swell during her chemotherapy: You’re going to be okay.  When a patient or loved one has been faced with a particularly challenging moment of illness, is there a mantra you’ve repeated to them? To yourself? Did it help? Write about the situation. Alternatively, reflect on Kuehn’s statement that “death is a condition of life.” Write for 10 minutes.

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