Narrative Medicine

Narrative Medicine Monday: Holdfast

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Poet and essayist Robin Beth Schaer writes of death and the necessity of touch in “Holdfast.” She starts by recognizing that we tend to leave the dead alone, they “are for morticians & butchers / to touch. Only a gloved hand. Even my son / will leave a grounded wren or bat alone…”

What is too fragile to hold on to? Schaer contends butterflies are “too fragile to hold / alive, just the brush of skin could rip / a wing.” She shares about a beloved friend who she never touched. They didn’t speak of her terminal illness or of “the days pierced by radiation.” There is a shrouding of her friend’s illness, a compartmentalization in an effort to protect and respect her wishes, but the result was an absence of physical connection.

Shaer concludes that “We should hold each other more / while we are still alive, even if it hurts.” She notes that baby monkeys prefer touch over a more caloric type of nourishment. I remember this study from my college psychology days. It speaks to that which we seem to know as young children, forget, and relearn over time: holding fast to each other is what may matter most in this world. Shaer, like many of us, finds herself agreeing with the baby monkeys: “I would choose to starve & hold the soft body.”

Writing Prompt: Have you had a friend or patient or loved one who was too ill or seemed to fragile to touch? Do you think touch can have a healing effect or that lack of touch can be detrimental? How have you seen this manifested in your life or a patient’s life? What are the different ways we hold on to each other, both literally and figuratively? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: 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

Narrative Medicine Monday: Heartbeats

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In honor of World AIDS Day yesterday, today’s Narrative Medicine Monday will be a poem by Melvin Dixon, recently highlighted by poets.org. In “Heartbeats,” Dixon sets a staccato cadence that reveals the evolution of a disease.

At the start of the poem, the narrator is the picture of good health: “Work out. Ten laps….Eat right. Rest well.” Then, he notes the “Hard nodes. Beware.” Dixon achieves an astonishing flow, given each sentence is just two syllables. The reader is forced to stop and consider the weight, the gravity of the situation that deepens, even as the lines remain short.

Dixon is able to convey the medicine with simple, ordinary words: “Reds thin. Whites low.” There is a turn in the poem with the narrator showing resolve: “Get mad. Fight back.” In this moment, he repeats previous lines found during times of health: “Call home. Rest well.”

The focus then shifts to the mechanics of the body, the breath: “Breathe in. Breathe out. / No air. No air.” Time becomes fluid, altered when one is sick, one is dying: “Six months? Three weeks?… Today? Tonight?” I find that I am holding my breath as I finish Dixon’s poem. I immediately look him up, knowing the likely outcome but hoping it will end differently just the same.

Writing Prompt: Try writing a poem about an illness or health challenge from diagnosis to treatment in short fragmented sentences, like Dixon’s “Heartbeats.” Consider diabetes or cancer, dialysis or pregnancy. How does the limitation of short sentences crystallize the situation? Alternatively, think of a moment you’ve shared, either personal or in a healthcare setting, with a patient with HIV or AIDS in the 1980s or 90s. Write this scene as it occurred during that time period, then reimagine the same scene in a modern setting. What changes, what remains the same? Write for 10 minutes.

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