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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Narrative Medicine

Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

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Ellen O’Connell Whittet ponders “The Narrative Messiness of Chronic Illness” in a recent piece in Ploughshares. O’Connell Whittet acknowledges that illness narratives may be challenging to show in scene and that “suffering… doesn’t always have a satisfactory ending.” Yet, she notes that illness memoirs, such as those of Paul Kalanithi, Lucy Grealy, Jean-Dominique Bauby and Porochista Khakpour can be particularly engaging, “turning the story of an ailing body into a work of art.”

Bauby, who suffers from “locked-in syndrome,” tells a grueling story without a tidy ending. O’Connell Whittet grimly concludes one tragedy of his chronic illness narrative is that he “cannot… count on getting well.”

O’Connell Whittet recognizes the importance of defining a diagnosis to Porochista Khakpour in her memoir “Sick.” When Khakpour “laments to her acupuncturist that she is still without a diagnosis, her acupuncturist asks, ‘does it need a name?’ But without a name, Khakpour cannot pinpoint the words she needs to convince us, or herself, of the extent of her suffering.” How important to suffering are the words we use to define illness? Does having a specific diagnosis validate that suffering, to ourselves or to others, in a different way?

O’Connell Whittet recognizes “Khakpour’s refusal to give us order out of illness’s chaos” and eventually determines that “[r]eading accounts of chronic illness allows us to embrace the ambiguity of the body and our experiences within it.”

Writing Prompt: Have you read a chronic illness memoir that turned a “story of an ailing body into a work of art?” Think about a particular part of that book or essay that was most enthralling or enlightening. What did you learn? How did it affect you? Did the structure mimic “illness’s chaos?” Write for 10 minutes.

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Narrative Medicine

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: Vicious

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Tim Cunningham gives us a glimpse of Abdul, a teenage Rohingya refugee he encounters in a Bangladesh camp, in Intima‘s “Vicious.” Cunningham notes that his “belly was swollen like the rice fields” and “[t]hough described by many as non-literate because he had no official access to school, he could read the Quran with ease. His recitation of its Surahs was exquisite.”

When Cunningham meets Abdul in clinic, his pain is “everywhere,” as if “[h]is genocide had shifted internally, an annihilation of his once-healthy cells.” Abdul had lost his appetite entirely, did not “miss dahl and rice, mangos and bananas, though he knew that he should. ”

Cunningham imagines where he might transfer Abdul, had he the resources: “They would have diagnostics for his hepatomegaly and cachexia. They would have 24-hour staff, teams of nurses and physicians to treat and listen his life-story. The providers would all speak Rohingya. These thoughts were but daydreams. For extraordinary diseases, with extraordinary measures and extraordinary means, there are ways to treat illness.  If you are Rohingya, there is nothing.”

Cunningham’s prose elicits a visceral response to his patient’s physical and emotional trials, but it is Abdul’s word of response to a difficult intravenous stick that give both Cunningham and the reader pause: “Vicious.”

Writing Prompt: If you’re a medical provider, are there certain assumptions you make about a group of patients you see? How did you feel when Abdul repeatedly says “vicious?” What do you think that word might mean to him? What does it mean to you? Have you worked in a resource-poor setting or with a marginalized group of patients before? Recall an encounter with a patient. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Preparation

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Abigail Lin’s poem “Preparation” in the Journal of the American Medical Association begins with a heartbeat as the focus of a medical student’s studies. She notes “we studied valves as if they were pipes: / what makes them rust, or clog.” There’s a note of bravado as the student starts their journey in medicine: they “marveled… as if we had built it ourselves.”

The humility comes later, realizing the fallacy in believing that “we could learn the architecture of grief / simply by examining blueprints.”

I remember marveling at the intricacies of design in my college introductory biology courses. I had in mind that I wanted to be a physician, but one of my most surprising revelations was learning about botany. I was amazed by the specificity of design in plants, the complex workings of how they grow, receive nourishment from the sun, from the rain; how they give back to the earth.

Lin’s poem is a caution to new medical providers. Much of our learning is in the machinery of the patient, the inner workings of the body. So much more is involved in treating the patient, not merely the disease.

Writing Prompt: If you are a medical provider, recall when you first started studying medicine. Were you naive, as Lin’s poem asserts? Is there something you’ve studied that you’ve marveled at? Did you learn a more nuanced appreciation as you progressed in your career? Recall an instance that contributed to that maturity. Write for 10 minutes.

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Narrative Medicine

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

Narrative Medicine Monday: Why Doctors Should Read Fiction

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Sam Kean’s article in The Atlantic, “Why Doctors Should Read Fiction,” highlights what many medical schools, residencies and medical groups are realizing: medical providers and patients alike benefit from physicians taking an interest in literature. Kean asks, “if studying medicine is good training for literature, could studying literature also be good training for medicine?”

Kean’s article outlines a study in Literature and Medicine, “Showing That Medical Ethics Cases Can Miss the Point.” The study found that “certain literary exercises…can expand doctors’ worldviews and make them more attuned to the dilemmas real patients face.”

Students rewrite and dissect short stories that expose an ethical case study, such as physician-writer Richard Seltzer’s “Fetishes.” The study’s author, Woods Nash, argues that “short stories are far more effective means of teaching students and health-care professionals to wrestle with the mess, to pay attention to narrative perspective and detail, and to become more comfortable with ambiguity.”

Writing Prompt: Have you read a piece of fiction that outlined a certain bioethical dilemma? Do you agree with Kean’s assertion that doctors should read fiction? How might the practice prove beneficial to a medical provider? Read Seltzer’s “Fetishes” and rewrite the story in short form, as a poem or case study. What new insight do you gain from this exercise? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday : What Can Odd, Interesting Medical Case Studies Teach Us?

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Physician author Siddhartha Mukherjee writes in the New York Times about coming across an unusual case study recorded by the late Oliver Sacks. Sacks describes the case of a woman who had a “lifelong history of seeing people’s faces change into dragonlike faces.” Though not a neurologist, like Sacks, Mukherjee is fascinated by the case. A thorough evaluation, including neurological examination, M.R.I. scan and experimental treatments revealed no answer or resolution.

Mukherjee is puzzled by the inclusion in a prominent medical journal. He ponders: “There was no revelatory flourish of diagnostic wizardry….. It was as if Sacks lobbed the puzzle into the future for someone else to solve: In some distant time, he seemed to imply, another neurologist would read this story and find resonances with another case involving another patient and complete the circle of explanation.”

Mukherjee notes that Hippocrates, the father of medicine, himself outlined case histories that remained a mystery without a clear diagnosis. Mukherjee recognizes that medicine has changed: “But over the years, as the discipline of medicine moved concertedly from descriptive to mechanistic, from observational to explanatory and from anecdotal to statistical, the case study fell out of favor. As doctors, we began to prioritize modes of learning that depended on experiments and objectivity.”

Mukherjee seems almost melancholy about the demise of the case study and what this omission means to medicine: “I miss the acuity of the observations, the scatter plots of symptoms that cannot be put into neat boxes, the vividness of description…. I worry that unknown unknowns will go unwritten — that buried within such cases, there might have been a cosmos of inexplicable observations that might, in turn, have inspired new ways of thinking about human pathology.” What role might narrative medicine play in honing the observational and descriptive skills of medical professionals that Mukherjee notes is lacking in today’s medical world?

Writing prompt: Do you agree with Mukherjee that something is lost in devaluing the case study? If so, what is lost? Think of a patient or family member whose illness was unique and perhaps undiagnosed. Write their case study, a detailed accounting of their history of illness. Write for 10 minutes.

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Narrative Medicine Monday: Relapse

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Poet and nurse practitioner Carolyn Welch captures a summer moment in Intima‘s “Relapse.” Welch’s daughter suffers from mental illness. She begins with an acknowledgment that is familiar to anyone who loves a person with a chronic condition that remits and relapses: “Of course we knew it could happen.”

Welch’s poem is a recognition that life moves forward despite the shadow of such a recurrence threatening to disrupt: “…summer plodded on with heat and harvest– / a steady supply of peppers and tomatoes;” The garden and growth are reliable, predictable, even as Welsh speaks to her daughter who has returned to an undesirable state of illness. Welch, with heartbreak evident, realizes “the meds are off.”

Writing Prompt: Consider a chronic illness that can relapse, often unpredictably: depression, multiple sclerosis, addiction, cancer. How does it feel to be the family member, the physician, the patient for each of these conditions? Write a triptych that includes each of these perspectives. Alternatively, near the end of her poem Welch acknowledges a “nagging failure of want.” Have you felt a similar sentiment as a family member is suffering? Write for 10 minutes.

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