Ramblings

Medicine and Mothering on the Front Lines of COVID-19

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Two weeks ago I picked my kindergartener up from after-school basketball on a routine weekday afternoon. He bounded up to me, backpack in hand and asked, “Mom, do you know about coronavirus?” His teachers had discussed the viral outbreak and the need for good hand-washing skills. My budding epidemiologist went on to explain how the virus spread from bats to another animal to a human to another human to even more humans and so on. I tucked him into bed that night, marveling at his teacher’s skill in stressing hygiene and explaining the novel virus to a group of 6-year-olds.

Of course now coronavirus, or COVID-19, is all anyone is talking about, reading about. Coronavirus has uprooted my personal and professional life. As a family medicine physician working in Seattle, and as a mom to three young children, COVID-19 has consumed my day-to-day activities and workplace. As a primary care clinician and parent at a U.S. epicenter of the outbreak, there is no other word for home or work right now than upheaval.

I am also a writer, a creator of art. But I have struggled to find the time and emotional space to articulate and explore all the layered questions this crisis has presented to me—as a physician, as a mother to young children, as a creative being in this world. Fragments of essays, lines of poems, pour out of me as I wake with anxiety in the middle of the night, as I run around a deserted Seattle park, as my children beg to gather with their friends, as I discharge a clinic patient who pauses as she exits the exam room: “Thank you for being a doctor.”

As a participant of Harvard Medical School’s inaugural Media & Medicine program, I’ve recently been trained in writing Op-Eds for the public, in discerning misinformation and disinformation in the media about healthcare issues, in thinking creatively about how we can use podcasting or plays or poems to tell stories that make a difference to important public health topics. My classmates and I, healthcare professionals from all over the world whose projects focus on varied themes from mental health to vulnerable populations, from physician burnout to cancer awareness, suddenly find ourselves in the middle of a pandemic, sharing stories from our respective locations worldwide.

My work right now, though, is focused here, on my community: the people I hold most dear and the place I grew up in, I trained in, I live. My colleagues and community are at the forefront of this pandemic. I feel the rising sense of fear, the wave of overwhelm, the steady thrum of kindness.

For now, I offer this. Anyone who attended medical school with me knows I like to make lists. I approach a seemingly insurmountable task by compiling, organizing, and splitting it up into manageable components. Over the last two weeks, as local healthcare systems faced rapidly changing recommendations, confusion about suggested protocols, differing messages on testing capability, questions about adequate protection and supplies, as schools closed and family schedules were upended, I gathered information. Here is my contribution, my list of reliable resources and information for the worried, weary, and hopeful among you.

Despite my own swirling anxieties, I’m grateful for the work I’m trained to do, in medicine and in the humanities. I’m thankful for my colleagues—every aspect of the health care team—who are committed to serving our community’s most vulnerable, and each other, through an uncertain time. I’m bolstered by the parents sharing resources and tips about how best to support our children through unprecedented upheaval. This, I know: we are distilled in a crisis to the best, or the worst, that is in us. May we cling to the best, stand firm in sound science, look to compassion and art that sustains our souls, and encourage others to do the same.

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Writing

Narrative Medicine Monday: Karyotype

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Poet Rebekah Denison Hewitt is one of Narrative Magazine’s poetry contest winners this year. Her “Karyotype and Other Poems” are a sequence of three poems that reveal different aspects of motherhood, from fetal testing to the fear and risk inherent in parenting.

In “Karyotype,” Hewitt illuminates the process of cell-free DNA extracted from a mother’s blood around ten weeks of gestation, a test that provides genetic information about the fetus. Hewitt’s genetic counselor “begins / to list every disorder / a lab can find in a fetus….” When this relatively new test became available with my third child, despite my medical background, I was still struck, as Hewitt seems, by the wonder of it, these fragments of my baby’s DNA floating through my veins: “The needled blood / from my arm a soup / of genetic code.”

Though Hewitt recalls a high school quiz “matching symptoms to disorder,” there is a turn in her reflection on the soul: “I think souls must exist / in wanted things. Dogs go to heaven, not roaches.”

Hewitt notes there is a calculation to how much information we really want to know: “Just trisomy 21, 18, 13? / Or microdeletions, too?  / My blood contains the risk / of something missing—a malformation / of the head—or worse.” Ultimately, though, she brings the question back to the essentials of what makes us human, beyond that of just our strands of DNA: “What makes this body inside me / more than an animal, clawing its way out…”

Writing Prompt: Hewitt writes about what she learned of some genetic disorders in high school and how she recalled this later when she was getting cell-free DNA testing. Think of something you learned in a science class that, many years later, manifested in an unexpected way in your life: genetics, biology, chemistry. Alternatively, think of a time you had a medical test done and the broader issues (what constitutes a “soul?”) that test might’ve brought up for you. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: In Search of Collateral Beauty

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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

Narrative Medicine Monday: Flamingos

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Poet Zeina Hashem Beck’s “Flamingos” in The Southeast Review reflects on the normalcy that persists, even in the midst of a child’s illness.

She begins in second person, as “the nurses pushed your bed into the OR.” The context quickly takes shape, the way a promise is made in response to outstretched arms “to see the flamingos / in the hospital garden downstairs.”

Hashem Beck signals there are expectations when caring for a loved one who is ill, but that we sometimes do the irrational: “The worried aren’t supposed to be hungry, / but I ordered food because it was reassuring.” The food represents a comforting nourishment, even if not consumed.

In “Flamingos,” Hashem Beck shows the divide between the “outside” world and that of the world of illness: surgery, the ICU, hospitals. In caring for her daughter, she is so removed from this alternate world that when she returns home for the simple act of a shower, she stumbles with the cadence of normalcy: “hair dripping, my arms full / of laundry, for a second I must have forgotten / my step, twisted & cracked my ankle.” A friend helps her to the emergency room, and all she can do is laugh, tell the doctor to “to fix my ankle, quick, I have a daughter / waiting in a room upstairs…”

“Flamingos” is a reflection on how life goes on, how “life will sometimes infect your daughter’s lung / & fracture your ankle in the same week.” There is a kind of apology, a stream of motherly advice in the end. The wisdom that even on mundane days, the days “the car doesn’t break down, / & the children are healthy, & your husband / loves you … you will be terrified nevertheless, / & sometimes empty. It’s ok if you forget / to put one foot in front of the other.”

Writing Prompt: When you or a loved one is ill, do you feel the divide between the “outside” world and the one you’re living through? In what moments does that divide manifest? I like the allowance the poet gives, that’s it’s okay to forget to put one foot in front of the other. Have you ever experienced a situation when it felt like all you could do was put one foot in front of the other? What happened, or might have, if you didn’t? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Cooper’s Heart

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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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Motherhood, Writing

Writing Motherhood

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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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Writing

Book: My Caesarean

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Today’s the day! My Caesarean, published by Experiment Books, launches – just in time for Mother’s Day. I’m proud to be part of this anthology that Publishers Weekly calls “an enlightening reading experience for both those who’ve had C-sections and those who may.” In “Upside Down,” I wrote about having a planned primary C-section with my first baby, who was breech. Each story in this collection is unique, but the thread of shared experience reveals a true sisterhood. Happy Book Birthday to My Caesarean!

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Narrative Medicine

Narrative Medicine Monday: Relapse

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Poet and nurse practitioner Carolyn Welch captures a summer moment in Intima‘s “Relapse.” Welch’s daughter suffers from mental illness. She begins with an acknowledgment that is familiar to anyone who loves a person with a chronic condition that remits and relapses: “Of course we knew it could happen.”

Welch’s poem is a recognition that life moves forward despite the shadow of such a recurrence threatening to disrupt: “…summer plodded on with heat and harvest– / a steady supply of peppers and tomatoes;” The garden and growth are reliable, predictable, even as Welsh speaks to her daughter who has returned to an undesirable state of illness. Welch, with heartbreak evident, realizes “the meds are off.”

Writing Prompt: Consider a chronic illness that can relapse, often unpredictably: depression, multiple sclerosis, addiction, cancer. How does it feel to be the family member, the physician, the patient for each of these conditions? Write a triptych that includes each of these perspectives. Alternatively, near the end of her poem Welch acknowledges a “nagging failure of want.” Have you felt a similar sentiment as a family member is suffering? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Bright Hour

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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

Narrative Medicine Monday: Mom at Bedside, Appears Calm

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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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