Narrative Medicine Monday: Introduction to Asthma

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: On the Eve of My Mother’s Dying

Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine Monday: The Bright Hour

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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Narrative Medicine Monday: Mom at Bedside, Appears Calm

I recently attended Harvard’s Writing, Publishing and Social Media for Healthcare Professionals conference and wrote about how networking and finding “my tribe” was a meaningful part of the conference. Case in point: a friend I met there recalled my interest in narrative medicine when she went to a talk by Dr. Suzanne Koven, the Writer in Residence at Massachusetts General Hospital. Dr. Koven is an internist and writer and has spearheaded the innovative Literature & Medicine program at MGH. My friend initiated a virtual introduction and Dr. Koven kindly agreed to speak with me about her successful program at MGH.

I’m inspired by her work in bringing narrative medicine to front-line medical providers. Today I’m featuring a New England Journal of Medicine piece she wrote from a very personal experience titled “Mom at Bedside, Appears Calm.”

Koven opens the essay with the things she carries “everywhere we go… two plastic syringes, each preloaded with 5 mg of liquid Valium….” She describes how they treat her son at “the first sign of blinking or twitching,” and that “[w]hen he relaxes, so do we.”

Koven is a physician, with all of the benefits and pitfalls that entails, navigating the tumultuous waters of a loved one suffering an illness that is particularly unpredictable and unnerving, especially when it affects a child. Her son continues to seize, still without an identifiable cause, taking “40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops.”

With subsequent admissions to the hospital, Koven finds that she grows “more at ease” with the other parents of ill children and that she “clings to the nurses, Jen and Sarah and Kristen and ‘the other Jen,’ as we call her.” She glances at her son’s chart one night and it reads: “Mom at bedside. Appears calm.”

Though her son is eventually diagnosed and treated effectively, grows into adulthood and no longer suffers seizures, this period of unpredictable anxiety still haunts her: “occasionally my terror will snap to life again…. A siren sounds…. I still stop to see which way the ambulance is heading.”

Writing Prompt: Nowadays much of the medical record, including a physician’s progress note, is available right away to the patient via an online portal. Have you read a phrase or comment in your medical record that gave you pause, caused reflection? Did the comment align with how you felt in that moment, how you were perceived by the physician or nurse? If you’re a doctor, how would you answer the question Koven received: “Is it easier or hard to have a sick child when [you’re a] doctor?” Write for 10 minutes.

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Narrative Medicine Monday: Air Hunger

The narrator visits her mother in the hospital in “Air Hunger,” a striking short essay found in University of Virginia’s narrative medicine journal Hospital Drive

Two months have passed since she last saw her mother, but in the interim the narrator notes her mother has “become a patient.” The details the writer shares give us a glimpse into how her mother’s illness has changed her over time. Her mother barely touches the lunch tray beside her hospital bed: “She picks at her food, but it’s air that she’s hungry for.” The narrator wants to ask her mom how she feels, but already knows the answer: “I can see what I see, I can hear what I hear.”

Writing Prompt: Have you witnessed a loved one’s deterioration of health over time? What was it like to see them in one light and weeks or months later note a dramatic change? Do you remember a moment when they became, either to themselves, to you or to others, “a patient?” Write for 10 minutes. 

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Free Write Friday: Makeup


She pulls out the shiny magenta case, like a tackle box but smooth at the edges, a mirror secured inside the lid. “I have to fill it with my makeup!” She exclaims, moving from room to room, collecting her beauty things. “Mom, have you seen my mermaid lipstick?” No, I haven’t. I hid it away somewhere and promptly forgot where I put it; a parent’s prerogative. It’s not really lipstick, just rose tinted chapstick, gifted to her by a well meaning friend. I got rid of it as soon as I was able to without her immediate protest. 

I suspect she suspects me as the thief, the culprit discarding of her treasured beauty trinkets, but I have to accept her eventual disdain for my actions. She’s five. She loves long flowy dresses, she’s gravitated toward high heels since she was two. She collects hair accessories like they’re candy, items to be savored and adorn her mousy brown locks. I worry. Will she be superficial? Will she self-scrutinize? Will she be consumed by what she looks like, how she appears to herself and to the world? Of course she will. But I want to temper the inevitable, preemptively find a way to help her emerge from the challenges of girlhood with the foundation of a healthy identity intact. 

She watches me hawk-like when I put on my own paltry morning makeup, scrutinizing every move: sponge applies a tinted moisturizer, brush of peachy blush, a swipe of eye shadow. I just started wearing mascara again a few months ago, conscious of my aging beauty regimen and tired mama eyes. She studies me like an artist regarding a celebrated sculpture, trying to deduce the method of craft. I’m self conscious as she analyzes me, defensive at my feminism and wondering at my hypocrisy in wanting her to avoid the trappings of the beauty counter world.

She and her brother used to stand below me as I regarded myself in the mirror, applying my cosmetics for the day. They’d ask for a makeup sponge and imitate my movements, swiping over their face and neck. Eventually they’d bore of this and use the sponges to “clean” the bathroom walls; perhaps a more appropriately concrete activity to occupy their imagination. 

She doesn’t really have any makeup of her own, so she fills her plastic box with sparkly headbands and large hair bows. She corrals her tiny hairbrush and her brightly colored elastic bands. I want to protect her from the self-scrutinization, the self-criticism of being a girl in this superficially focused world. I want to adjust her own lens, swap it out with one that filters with self-acceptance, appreciation of variation and an ability to discern a deeper beauty, the kind essential to all that matters.

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