Narrative Medicine

Narrative Medicine Monday: Titanium Seed

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Poet Judith Skillman’s “Titanium Seed,” published recently in the Journal of the American Medical Association, describes the new “part of flesh inside” that is hers “to carry through / airports, not setting off / any alarms, they assure me, / not anything other than / a placeholder for cancer.”

She depicts the experience of getting a breast ultrasound, “the technician rubbing her wand / over and up hills of black / and white.” Skillman’s poem illustrates the anxiety associated with waiting for a diagnosis, the uncertainty of the pause that occurs after an aberrancy is found but before a definitive answer is revealed.

The seed represents an alteration of Skillman’s body, this reality of the possibility of cancer she harbors in her flesh unseen. She outlines how the patient is at the mercy of the medical diagnostician, describing how she lies “between two triangle pillows – / placed like an offering / to this Demi god who may / or may not find what appeared / on his screens.”

Writing Prompt: Think of a time you had a biopsy or lab test or imaging done and had to wait for the results. Sit in that space of uncertainty. Describe the experience. Did colors return, as they did for Skillman, when she receives a benign diagnosis? How did knowing contrast with the period of waiting? Try writing about this space of waiting from both the patient and medical provider’s viewpoint. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: GUTS

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I previously featured author Janet Buttenwieser’s essay, “The Colostomy Diaries,” on a Narrative Medicine Monday post. Today, I’m pleased to highlight her similarly humorous and heartfelt memoir, GUTS.

Buttenwieser writes with a comfortable familiarity, weaving candor into her story of misdiagnosis, treatment and loss. I felt like I was reading the words of a dear friend; Buttenwieser is authentic and relatable. She navigates the foreign and often perplexing world of medicine as a young patient, stricken with a debilitating illness. She finds herself getting regular CT scans and under the care of a surgical resident, contemplating operative measures: “I decided right then that I liked the resident better than my regular doctor. In my growing survey of medical professionals, I’d begun to notice a trend. The younger the doctor, the more he or she listened to me. They asked questions …”

I was particularly struck by a passage where Buttenwieser describes her overhearing a paramedic relay her emergency case to the hospital where the ambulance is transporting her to. He uses the common medical term “chief complaint.” She bristles at the phrasing, stating “I feel angry at the way we patients are portrayed by the medical establishment as whiny toddlers who need a nap. Patient complains of gunshot wound to the head. Patient complains of missing limb following leg amputation.” There is phrasing that becomes commonplace during medical training, traditional wording that is passed down in the name of congruity. To an outsider, though, I can appreciate how unfeeling much of this must seem. Medical-ese leaves much to be desired in the realm of patient-centeredness.

I was privileged to meet the local author briefly at a book signing and will attend a book club this week where she will also be in attendance. I admire her writing skills as well as her contribution to an important perspective – that of a young patient. GUTS has solidified its place among my favorite narrative medicine memoirs, including In Shock, When Breath Becomes Airand On Call.

Writing Prompt: Have you encountered a certain trend among medical professionals, as did Buttenwieser? Do you agree that younger medical providers are better listeners? As a self-proclaimed rule follower, Buttenwieser finds it difficult, especially early in her bout with disease, to advocate for herself or question her initial physician’s diagnosis and treatment plan. Have you faced a similar challenge in the medical world? Write for 10 minutes.

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Narrative Medicine

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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Narrative Medicine Monday: Heroin/e

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In Cheryl Strayed’s essay “Heroin/e” she writes about our ways of facing death, dying, grief and the will to live. Strayed loses her mother to cancer and suffers her own descent into addiction. Strayed’s love for her mother is evident and the loss she feels is acute. When her mother first learns of her diagnosis, Strayed recounts them silently entering the restroom, “Each of us locked in separate stalls, weeping. We didn’t say a word.” Strayed describes the numbing of pain and the warping of time for each of them: “The days of my mother’s death, the morphine days, and those that followed, the heroin days, lasted only weeks, months–but each day was an eternity, one stacked up on the other, a cold clarity inside of a deep haze.”

Writing Prompt: What does it feel like, in a physical sense, to suffer from addiction? From grief? Do you think addiction and grief are linked? Why or why not? Think of your own experience or a time you’ve witnessed this in a patient. Write for 10 minutes.

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Narrative Medicine Monday: Primum Non Nocere:

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Emma Barnard is a visual artist and researcher focusing on fine art and medicine. Her latest installment, “Primum Non Nocere,” reflects the patient experience. Barnard’s work is influenced by her own interactions with the medical world as a patient and her research into this arena, including Michel Foucault’s term ‘medical gaze,’ used to “denote the dehumanizing medical separation of the patient’s body from the patient’s person or identity.”

I’m interested in Barnard’s method of creating art, where she follows a patient into the exam room and questions them right after, producing a drawing based on their response. She notes that many of the physicians are surprised at the resulting artwork: “During the consultation process patients show little emotion; it’s quite difficult to read how they really feel about the impact of the words spoken during the clinical encounter.”

Barnard also incorporates the physician and surgeon perspectives. Could you relate to her images of a physician’s experience in a busy clinic practice?  I could certainly identify with the depiction of others superseding the “self” and various demands of work and home life feeling compartmentalized. Do you agree with the neurosurgeons’ statement that as physicians we view a division between us and patients and that we have to understand this alienation “if we are to find ways to soothe it and become connected to our patients and to the essence of medicine?”

Writing Prompt: As a patient, have you ever experienced Foucault’s ‘medical gaze,’ where you perceived a provider as seeing you only as a body, rather than recognizing your personhood? What did that feel like? As a medical provider, have you ever caught yourself interacting this way with a patient? How can we work to overcome this tendency? Write for 10 minutes.

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Narrative Medicine Monday: Erasure

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Student and poet Thomas Nguyen writes of memories and loss in “Erasure.” In his poem Nguyen is instructional, warning how time affects our connection to those we’ve lost: “Accept that time makes things distant, that his absence doesn’t bleed into your memories as much as it used to.” There are only a few significant people in my life who have died, but I can identify with Nguyen who needs to try “harder and harder to remember the last time” he saw his mentor.

Nguyen notes that the patient speaks of his melaonmas as if they were part of his garden: “My dermatologist taught me how to care for them.” Nguyen goes on to contrast this with the green moss on the windows of his home. Do you agree with Nguyen that “life always adds?” Do you find this contention comforting or suffocating, or both?

Writing Prompt: Have you spent time with a loved one or patient who was nearing death? If time has passed, how have your memories of this person been affected? Recall the last time you saw them. Outline the details, like Nguyen’s memory of “neatly-pressed khakis.” Write for 10 minutes.

 

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Narrative Medicine Monday: The Permanent

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In “The Permanent,” Amy Burke Valeras takes us back to the 1980s when perming your hair was a thing. In the first half of the poem, Valeras opens up about her struggle with her hair; I could relate. I similarly begged for an ill-advised perm the same year, the same age as the author. I like how Valeras makes her hair a central character of the poem. We battle along with her preteen self as she tries to tame the “frizzy poof.” We can understand when, two decades later, she is told she has cancer but all she can think of is: “My hair!”

Writing Prompt: Think of an every day aspect of your life, of your body, that you took for granted or had a different relationship with until you became ill. Consider level of energy during a bout with the flu, walking with a sprained ankle; maybe you have lost your hair to chemotherapy or a breast to invasive cancer. Write about your relationship with this aspect of your body before you became ill and after. How did things change? Write for 10 minutes. 

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Narrative Medicine Monday: An Expert in Fear

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Author Susan Gubar writes about cancer making her “An Expert in Fear” in her timely essay. She asserts that this anxiety has become more acute in the recent political climate, with debates about major changes to healthcare, Medicaid and insurance coverage in the forefront of our national discourse.

Gubar contends that cancer fears fuel other fears and that cancer patients become “experts in fear.” If you’ve dealt with cancer, has this been your experience? She also highlights the detrimental impact fear can have on our health, and that severe financial distress has been found to be a risk factor for mortality in cancer patients. Gubar feels there is no appropriate word for the dread she experiences today. It is a “fear of fear spiraling into vortexes of stunning trepidation” and has, in fact, become all-pervasive and metastatic. 

Writing Prompt: What fears do you harbor related to health and illness? Have you found that the political climate impacts that anxiety? Do you agree with Gubar that fear is pervasive in today’s world? Write for 10 minutes.

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Narrative Medicine Monday: What You Don’t Know

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Today’s Narrative Medicine Monday is a bit different in that I’m posting an excerpt from a radio show rather than a sample of poetry or prose. Stories of medicine, health and illness are found in all types of art, including written form, oral stories, music and visual mediums.

This American Life is a prolific radio show that covers widely varied topics in a heartfelt, honest and often humorous way. Each show has a theme and this past week’s episode was titled “In Defense of Ignorance.” In the first act, “What You Don’t Know,” writer and producer Lulu Wang tells her family story of deciding to keep test results of the most dire news from her grandmother. Her family’s Chinese heritage influences the stance they take in keeping her grandmother in the dark about her terminal diagnosis. Wang, raised mostly in America and very close to her grandmother, doesn’t agree with this position but, at her family’s request, complies. 

Wang’s family story brings up issues of bioethics, cultural norms and how bad news affects health and illness. How might cultural norms influence the very standards of bioethics in a particular case? Do you agree with the family decision to keep the grandmother in the dark about her terminal diagnosis? Why or why not? Do you think her grandmother actually knew all along? Spoiler alert: Do you think not telling Wang’s grandmother contributed to her surviving despite her dire diagnosis? Wang mentions the Chinese belief of the connection between the mind and body. What are your thoughts on this connection?

Writing Prompt: Think about your own family dynamics and cultural norms. How do you think this has shaped your own views on health and illness? Can you think of a time this construct specifically influenced your medical decision making? Alternatively, think about the connection between the mind and body. Do you think one influences the other? How? If you had a terminal diagnosis, would you want to know? Why or why not? Write for ten minutes. 

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Narrative Medicine Monday: Thanksgiving Dinner

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Allie Gips’ striking poem “Thanksgiving Dinner” profiles her grandparents as they suffer from dementia and recurrent cancer. Gips writes that there is “there is a forgetting that is wrenching and then there is a forgetting that must seem like some kind of forgiveness”. Gips expresses sadness watching her grandfather relive the disappointment at finding the sparkling cider bottle empty again and again. This simple act of recurrent forgetting serves as a rending reminder of the cost of his illness to family gathered at the Thanksgiving dinner table. 

Writing Prompt: Have you witnessed someone suffer the effects of dementia? Think of a particular incident, like Gips’ empty bottle, that struck a chord with you, illustrating the defecits. Write for 10 minutes. 

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