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: Grace and Forgiveness

Oncologist Dr. Catriona McNeil writes about a severe adverse outcome her patient suffers in The Journal of Clinical Oncology’s “Grace and Forgiveness.”

Dr. McNeil treats her patient, Liz, who also happens to work in the same hospital, with a standard chemotherapy for breast cancer. When Liz suffers a rare but known possible complication from her chemotherapy, McNeil finds herself grappling with feelings of guilt, of responsibility. She initially wonders if she made a mistake, if there could be some other cause to her patient’s catastrophic decline: “The chemotherapy order had been checked and rechecked. Had I made a mistake? … She’d had nowhere near a cardio-toxic dose of chemotherapy. No, it couldn’t be that. Until eventually it could no longer be anything else.”

McNeil considers the early clinical studies of the chemotherapy she used, how those oncologists also might have “sat with a distraught family in a tiny room and had the same awful conversation. And yet how bland and unthreatening those little rows of text in the medical journals had seemed. How they’d sat so neatly in a small font near the bottom of the toxicity tables—cardiac death, 0.1% or thereabouts; just a handful of patients. Rare. Unlikely.”

This essay illustrates the limitations of medicine and the bias of human nature. It’s difficult to acknowledge we or our patients could suffer a detrimental complication, especially when it’s statistically rare. McNeil conveys the weight prescribing providers carry when such an event occurs. Although we all know, as patients and physicians, that there are no guarantees in medicine, it is jolting to experience what McNeil calls “the trauma of an adverse patient outcome.” Even though there “had been no malice or intent, no mistake or neglect,” McNeil still harbors guilt as she alone “had signed the chemotherapy order.”

Any treatment advised, from ibuprofen to chemotherapy, can have dire side effects. Learning to grapple with those consequences and continue to move forward with empathy for both self and the patient poses a great challenge to the medical profession.

Writing Prompt: As a patient, think of a time you’ve suffered an adverse outcome from a treatment prescribed by your physician. Even if you were well informed about the risks, benefits and alternatives, how did the experience affect you? Did it alter your opinion of your doctor or of medicine in general? If you’re a medical provider, write about a time you prescribed the best treatment available but your patient had a detrimental outcome. How did that affect you and your practice? Write for 10 minutes.

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Narrative Medicine Monday: The Permanent

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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