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: 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: 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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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: 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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Narrative Medicine Monday: What I Learned Photographing Death

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Caroline Catlin shares her riveting story of how photographing those with terminal illness gave her perspective about her own cancer diagnosis in the New York Times’ “What I Learned Photographing Death.”

Catlin volunteers with Soulumination, a nonprofit organization that documents moments between critically ill individuals and their families, including the end of a child’s life. As I also live in Washington State, I had heard of this remarkable organization and the unique and thoughtful service they provide. Catlin’s piece, though, also reveals the perspective of these volunteer photographers. As Catlin describes, her role is to enter a room “ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.” Her experience echoes that of many who work in the medical field. She too is a kind of caregiver for these families, wielding a camera rather than a stethoscope.

This young writer and photographer describes how in October she herself became a patient, eventually being diagnosed with malignant brain cancer. Catlin highlights how, since her diagnosis, she’s bonded with the people she’s photographing in a new way, including a teenager who shared mutual baldness: “The fact that I am sick and young has helped me form new connections with the people I am photographing.”

Catlin describes photographing the birth and death of a baby who was born with a condition that wasn’t survivable. She writes with heartbreaking clarity how “[h]e was perfect, but he did not cry,” how she captured “[h]is arm…gentle across his mother’s face — I clicked the shutter to save this gesture.”

Catlin is clear on her purpose in doing this difficult work: “When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human.” She also has discovered moments that speak to her own confrontation with mortality, such as when a child cries over the loss of his sister, then goes on to play near her body. She recognizes the resilience that exists in this world, that her friends and family “will also continue to live on if I die too soon.”

In the end, Catlin’s revelation is that “grief is centered not in pain but in love.” This is the lesson that she shares with us, the encouragement that “in our most horrific of moments we are met with small pricks of bright light, piercing and strong.”

Writing Prompt: In this piece, Catlin expresses how her work with Soulumination gave insight into her own experience with cancer and facing mortality. If you’re a medical provider, what has your work revealed to you about your own mortality? Alternatively, think about a time you stepped into another person’s story, during a particularly challenging time, either as a friend or family member or stranger. What did you learn from walking alongside that person, listening or observing? 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: Introduction to Asthma

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Poet Susan Eisenberg gives an “Introduction to Asthma” for the parent and practitioner. Her son suffers an acute asthma exacerbation, the “Cacophony rising in his lungs, / oxygen level falling”. Eisenberg lets us know that her young son “believes / he will die” but also exposes the reality that “Anyone who wants to kill me he says / would have to kill my Mom / first.” She will follow her son anywhere, even Heaven or Hell. The reader’s own breath catches on this truth, as Eisenberg hugs “his eyes in mine / and breathe for both our lives.”

Writing Prompt: Try reading Eisenberg’s poem out loud. What do you notice about her choice of words, line breaks and white space? Think of a time you or a child or friend or patient experienced an acute and sudden medical emergency, such as an asthma exacerbation. Describe what you hear, what you see. Write for 10 minutes.

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Narrative Medicine Monday: Ikiru

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Today’s Narrative Medicine post highlights a first: a movie. As part of preparation for this week’s Columbia Narrative Medicine Workshop, I watched a 1952 Japanese film, Ikiru. This movie, directed by Akira Kurosawa, outlines the life and death of a man with end stage cancer.

I happen to also be facilitating a Literature & Medicine gathering this week, where the topic is “Confronting Mortality.” In it, we are reading Tolstoy’s novella “The Death of Ivan Ilyich,” which similarly shows a man facing a terminal illness and wrestling with the meaning of his life and the nature of his painful death.

In Ikiru the protagonist, Mr. Watanabe, has not missed a day of work in 30 years at the same tedious government job. The narrator notes that “he’s only killing time, he’s never actually lived.”

I’m certainly not a movie critic, but several things stood out to me, looking at this film through a narrative medicine lens. First, his physicians insist on withholding the terminal nature of Mr. Watanabe’s illness, stating it’s a “mild ulcer” only, even when Watanabe begs them for the truth. This scene reminded me of a panel on cultural issues in bioethics I attended many years ago. On the panel was a bioethicist from Japan, and he explained the cultural influence of withholding the true prognosis or even diagnosis of an illness from a loved one; that a physician might deliver a terminal diagnosis to a patient’s family member rather than to the patient themself.

We get flashbacks in the movie to understand the central character more. His wife died when his son was young and he never remarried. Although they live together still, Watanabe and his son have a difficult relationship; they struggle to really communicate and Watanabe in fact is never able, despite several efforts, to actually confide his diagnosis and angst to his son.

Mr. Watanabe comes across a stranger who he asks to show him “how to live” and they gamble and dance and drink, but ultimately he finds little lasting pleasure in these endeavors.

The central character then turns to an old colleague, a young woman, trying to decipher her vitality, her zest for living. Through this interaction, he resolves to get a park built for the community. In the end he succeeds, battling the bureaucracy he was a part of himself for decades. It seems the completion of the park gives the dying man some semblance of peace, a legacy solidified, which produces the meaning he was struggling to find.

Writing Prompt: At one point in the film, Watanabe tells a colleague “I can’t afford to hate people. I haven’t got that kind of time.” What are the different ways you’ve seen patients who are terminally ill react to facing their limited time? Did they give up hate? Or something else? In Mark Doty’s poem “Brilliance” the patient initially gives up investing in anything he can’t finish. Why do you think Watanabe decided that the playground would be his last project, his last investment in what little energy and time remained? Write for 10 minutes.

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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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