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

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: 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: 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: 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 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: In Life’s Last Moments, Open a Window

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British physician and author Rachel Clarke advises in The New York Times that to care best for our terminally ill patients we should, “In Life’s Last Moments, Open a Window.” Dr. Clarke relays the story of a patient dying of cancer who was nonverbal but clearly in anguish. “We tried talking, listening, morphine. His agitation only grew.”

Clarke initially questions if the “sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance.” Instead she finds, as in the case of her patient with tongue cancer who merely wanted his door opened wide to the adjacent garden, many patients develop an “intense solace… in the natural world.”

It is the song of a blackbird outside her window that gives one of Clarke’s breast cancer patients perspective that even “[c]ancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Clarke shuns the idea that end of life care needs to equate to a “dark and dismal place.” Instead, she contends that what should dominate hospice “is not proximity to death but the best bits of living.”

Writing Prompt: Clarke’s patient Diane notes that cancer is a part of nature. What are the implications of this statement for you as a medical provider, as a patient, as a loved one? When you’ve been ill, have you found solace in nature? 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: 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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