Narrative Medicine Monday: Cooper’s Heart

Writer Rebecca Gummere writes in Oprah about the unimaginable loss she experiences when her infant son dies suddenly in her essay “Cooper’s Heart.” Gummere begins by describing the heart, how it starts in gestation, how it pumps throughout life: “Even the heart of a baby who lives just 42 days will pulsate more than 6 million times before its final, fluttering beat.” She then returns to October 1982, to the time when her son Cooper was born.

Just before discharge from the hospital, her pediatrician hears a heart murmur and suggests evaluation by a pediatric cardiologist, who performs an x-ray, then an ultrasound. The cardiologist receives the results and ushers the young couple into his office: “‘Do you know what a heart looks like?’ he asked, and I remember having one distinct thought: We should run.” Gummere captures the indelible urge as a patient, as a family member, to flee when faced with a difficult diagnosis.

The cardiologist breaks the news that their newborn son will need urgent surgery. The surgery is successful and Cooper is admitted to the NICU, a place Gummere describes as being “neither night nor day but another kind of time altogether.” Cooper improves and Gummere is able to bring him home. He gains weight, “and once he was in a regular feeding routine, he was able to sleep. His cheeks grew round, and he kicked his legs in excitement. I let myself breathe.”

That December, when Cooper is 6 weeks old, Gummere notes one night that he seems cold: “Then this: He wakes, fussing, squirming. I change his diaper and notice he is cool, so cool to the touch, and his skin has gone white, his surgical scar now a harsh purple line against his pale torso.” Her husband is away on a business trip. She calls her pediatrician, who eventually suggests Cooper be hospitalized. She calls a neighbor and readies her toddler son, only to realize that Cooper “…is not breathing,’ I say, and I know it is true. ‘Call 911,’ I shout, and then everything is changed.”

Everything is changed, as Gummere describes her own pleading with God: “‘Please, God, not my baby, not my baby. Please don’t take my baby.’
At last one of the paramedics pronounces what we all know: ‘This baby is deceased.'” In the wake of this tragedy, Gummere, though devastated, consents to the mandatory autopsy that is required of a death at home, “allowing the hospital to do what it must.”

Gummere tells her 2-year-old son that “God is taking good care of our baby, but I am not sure I believe it, not sure at all.” We can sense her wrestling with the idea of a higher power: “I want God to be real. I need there to be Someone in charge, and I need there to be a heaven, some place where I know my baby is safe and cared for and loved.”

Several times after Cooper dies, Gummere asks God: Where are you now? Often when we face difficult or traumatic situations as patients or as healthcare professionals, our perception of God or a higher power can be alterered or challenged. Have you ever asked this question of God? Did you get an answer?

Over a year after her son’s heartbreaking death, Gummere delivers a healthy baby girl and she is “filled with joy and fear.” Understandably, she is constantly “on guard,” ready for the worst. As the years pass though, Gummere shares that “I am forgetting altogether about dusting the pictures of Cooper on the mantel.” What role does time play in Gummere’s experience?

Gummere begins searching for reasons, for some semblance of answers, and enters seminary. She shares her varied identities: “I am part scholar, part detective, both parts waiting to be struck like Paul on the road to Damascus, knocked facedown in the dust, then renamed, remade, given new eyes to see some revelation of God woven in the very fabric of the universe.”

Her understanding and faith, though, continues to be challenged. Throughout seminary, when a friend is diagnosed with an inoperable brain tumor, when a local teen dies by suicide, she wonders to God: Where are You now?

Seven years after he son’s death, Gummere enters chaplaincy training. Against her adviser’s advice, she chooses the local Children’s hospital where her own son was cared for and died. During this training, Gummere meets the same pathologist who performed Cooper’s autopsy. At her request, the pathologist goes over her son’s autopsy in great detail and then shares “his role in training medical students and his special area of interest, the heart-lung system, describing how he procures and preserves the organs during the autopsy to use them in teaching…. He is quiet for a long moment and then says, ‘I still have your son’s heart and lungs. Do you want to see them?'”

Gummere describes what she finds in the morgue, how the pathologist reaches “down into the bucket, he brings up all that remains of my son, and in the next instant I hold in my hands the heart that had been inside the infant who had been inside of me.”

She is eventually able to “begin to do a new thing, to move beyond grief and guilt into wonder, to celebrate what I was part of creating— not what was lost but what was alive, what moved and pulsated deep inside of me, what seems to be in some way part of me still.”

Gummere asks “What is God?” And shares that her own answer to this question has shifted over time. Ultimately, Gummere discovers that there is no answer, but “there is love, the kind that binds us to each other in ways beyond our knowing, ways that span distance, melt time, rupture the membrane between the living and the dead.”

Writing Prompt: Think of a tragedy you’ve encountered – in your own life or in the life of a patient. Did this experience affect your view of God or a higher power? Alternatively, think of a time, for you or a patient, when “everything is changed.” What happened in that moment and what questions did you struggle with afterward? Did the passage of time alter those questions or the answers? Write for 10 minutes.

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Narrative Medicine Monday: Who Heals the Healer?

Dr. Huma Farid asks “Who Heals the Healer?” in her recent essay in JAMA, and her answer might surprise you. Farid describes weeping alongside her patient early in her obstetric training when she delivers a stillborn baby. The gravity of this experience affects Farid deeply as she reflects on human suffering, recognizing “that my work would encompass taking care of women at some of the worst times in their lives.”

As Farid progresses in her career, though, she realizes that she no longer has the same reaction, the same connection to the suffering of her patients: “My eyes dry, I wondered, when was the last time I had truly connected with a patient, empathized with her sorrow, and allowed myself to feel a sliver of her pain?”

Farid acknowledges that at that time she was also going through her own personal difficulties, and that despite this, she did her best to “remain empathetic and kind” to her patients: “I tried to give as much of myself as I could, but I felt like I had a finite, limited reserve of empathy.” Do you view empathy as a finite resource, or have you experienced a similar limited reserve to connect with your patients?

Farid’s commentary really resonated with me. It seems a simple statement to say doctors are human too, but it’s a reality we often forget. Most doctors are incredibly resilient and, even so, it only takes one personal life stressor to topple the precarious balance of mental and emotional rigors that come with being a physician in today’s healthcare environment. As Farid notes, the decline in empathy “may be driven by the demands of modern medicine and exacerbated by personal experiences.”

When I experienced my own significant personal life upheaval a few years ago, I, like Farid, “was still able to perform my clinical duties and to provide good patient care despite struggling to be empathic. However, studies have demonstrated that physician empathy improves both patient outcomes and patient satisfaction….” Ideally, for both the patient and physician’s sake, we would find ways to combat the decline in empathy that is an inherent byproduct of the current healthcare environment.

Ultimately, Farid determines that empathy “enables us to understand and connect with a patient’s perspective, an invaluable resource in an environment that has become increasingly polarized and rife with divisions.” Farid describes an interaction with a patient where she “mostly listened” and, in return, receives heartfelt thanks and hugs. Through that emotional and physical connection, Farid regains a piece of her “profoundly and imperfectly human” self. May we all find a way to move in that direction.

Writing Prompt: Farid wonders “what it meant for me that I had lost some ability to feel a patient’s pain.” If you’re a healthcare professional, have you lost some of that ability throughout your medical training or career? Think about a time you failed to have empathy for a patient’s suffering or, as a patient, that you felt your healthcare provider had little empathy for your pain. Alternatively, describe a time that your empathy has been “rekindled.” Write for 10 minutes.

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Narrative Medicine Monday: The Oncologist

Poet Carole Stone writes about “The Oncologist” in the Bellevue Literary Review. Stone starts with the questionnaire she receives: “Do you have an appetite? No. / Are you anxious? Yes.” I think of all the questionnaires we hand out to patients to save time, to make sure we get vital history, to screen for other issues that might not be readily apparent just by looking at the reason the patient came in. As a primary care physician, I can’t tell you how many times I’ve seen a patient for knee pain or seasonal allergies or a Pap smear, who actually wants to discuss their depression or panic attacks or fear of developing the same chronic illness as their cousin.

In Stone’s brief poem, though, she reveals the multitude that is assumed, that is missed, by these questionnaires and by the rote interventions that follow. Stone shares her inner dialogue when the woman suggests counseling and a writing group: “I imagine an unsharpened pencil, / and a blank page, / tell her, no.

In the end, the patient and the oncologist miss a connection. Stone asks herself “Is this denial?” But verbalizes only that she has “nothing to say.” In modern medicine’s pressured office visits, sometimes the most important communication, how the patient is really feeling, what they are thinking, the opportunity to get to know a person beyond their disease, gets lost in all that goes unsaid between patient and doctor.

Writing Prompt: Stone declines the woman’s offer to try counseling or a writing group, commenting on her “stranger’s eyes.” Have you encountered a similar situation with a medical professional where they felt like a stranger? What is the balance of intimacy and intrusion when caring for someone who is gravely ill, has cancer or a debilitating chronic disease? Consider writing about a medical questionnaire you received and what it did and did not reveal. Alternatively, try writing about this exchange from both the patient and the oncologist’s point of view. Write for 10 minutes.

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Writing Motherhood

What a privilege to be part of this Hugo House panel on Writing Motherhood last month. I was blown away by each of the readings from these talented mama writers, and particularly excited to meet poet Amber Flame. I first saw her at a Seattle Lit Crawl (coming up again October 24th!) reading work inspired by Whitney Houston. Carla Sameth read from her wonderful memoir in essays, “One Day on the Gold Line,” and my dear writer friend and talented teacher Anne Liu Kellor read a new poem. Samantha Updegrave served as host, shared a striking essay, and guided the panel discussion following the readings. The gathering was even a highlighted event by The Seattle Review of Books.

I enjoyed the chance to discuss how and why we write about motherhood, as well as how motherhood has influenced our writing and the writing life. For me, I came to writing as a serious vocation only after I became a mother, so motherhood tends to infuse and influence much of my work. Though I write about much more than motherhood, the fact that I am a mother is so central to my identity, just like being multiracial, or a physician, or growing up and living in the Pacific Northwest are all integral components to the lens through which I create art. I’m grateful I had a chance to discuss motherhood and writing with these extraordinary women and hope to continue this important conversation.

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