Narrative Medicine Monday: In Search of Collateral Beauty

Writer Kat Solomon is “In Search of Collateral Beauty” in her recent Ploughshares essay. Solomon describes being wheeled into the Neonatal Intensive Care Unit to see her premature newborn, noting that “time has slipped away” but that “now, I am a mother.” Solomon provides a vivid description of the NICU, the “little room [with] its own symphony of beeps and blips,” the “plastic isolettes and incubators.” Her baby has arrived five weeks early. The first night, untethered to any tubes or isolation, her daughter is simply monitored, Solomon told she may be released the following day.

The next morning, though, they find the situation drastically different, their baby “sleeping in an enclosed isolette with an incubator like the kind I have seen on television, and she is connected to several wires and blinking machines.” Solomon has difficulty registering the change, and reaches out to touch her daughter: “I put my hand through the sleeve in the incubator but before my fingers reach her forehead, a nurse enters behind me. ‘Don’t touch her!’ she snaps. ‘She has a long day ahead of her.'” As medical providers we often forget that this is a foreign world to our patients and their families, a point Solomon expands on throughout her piece.

Though assured otherwise, Solomon can’t shake the thought that her baby’s feeding difficulties “must have happened because I was not there—would not have happened if I had been with her.” Solomon’s irrationality is relatable. As mothers, we often, even with evidence to the contrary, blame ourselves.

The language of the NICU strikes Solomon, a writer, as rich with metaphor. She Googles preterm infants and finds that “thirty-five weekers” are called “changelings.” Solomon sees her daughter as a changeling, noting the ephemeral quality of existence: “I’ve made a life, I think, but only now do I understand that in doing so I have also made a death.”

The young NICU doctor asks Solomon and her husband to sit and she realizes that this is an ominous request: “he has bad news, like on television.” The doctor explains that their daughter needs more tests to determine how best to treat her persistently distended abdomen. Solomon asks if it will resolve on it’s own, but the doctor replies that spontaneous resolution is no longer likely.

During Solomon’s experience in the NICU, she thinks of Lorrie Moore’s story “People Like That Are the Only People Here: Canonical Babbling in Peed Onk.” Moore’s story describes a child who suddenly becomes ill and her mother’s experience in the other “country” that is pediatric oncology. Moore’s short story is insightful and even humorous, and is one of my favorites to discuss with health professionals. The mother in Moore’s story finds a way to navigate this foreign land of pediatric oncology, but not without difficult interactions with medial providers, and the system, along the way. Solomon, too, finds much in Moore’s story relatable.

Solomon has a wrenching wait while her daughter has more tests, and eventually is called with the good news that the blockage resolved. She is, of course, relieved, but also angry, “directed completely at the doctor who told us that this outcome was no longer likely.” Can you relate to her experience? For those of us saturated in the medical world, it’s easy to forget the impact our prognosis, our words, may have, the fear they may instill.

Remaining in the NICU for observation, Solomon’s daughter has a “spell” where she stops breathing and this, the nurse informs them, means five more days in the hospital. This frightening episode ends up being the last of their “trials” in the NICU, but Solomon later reflects that, similarly to the mother in Moore’s story, there is a grief inherent in the “imagined version of the way things were supposed to go, the false sense of security that bad things only happen to other people.” I think those who suffer from severe illness, or care for those who do, often feel this kind of grief. Even when things improve, we, like Solomon, know in comparison we should feel “lucky” but can’t help but can’t help but mourn the loss of a cocooning naiveté.

Writing Prompt: What comes to your mind when you hear “changeling” or “spell?” What are some of the words we use in medicine that have other meanings, and what effect might these have on the patient or their family? If you’re not in medicine, think of words that you’ve heard in the hospital or clinic that conjured a different thought or a metaphor. Alternatively, read Lorrie Moore’s “People Like That Are the Only People Here: Canonical Babbling in Peed Onk” and consider if you agree that, even with illness, “there’s a lot of collateral beauty along the way.” Write for 10 minutes.

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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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