Narrative Medicine, Writing

Writing Through COVID-19

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Like many people lucky enough to have a backyard during this time of pandemic, we’ve spent a lot of time working on the yard, creating space for the kids to run and play and take in the fresh air, get grounded in the earth. I’ve found this essential for myself as well, digging in the previously neglected raised beds, planting flowers and greens in the hope they will grow something new out of this time of desolation. I’m lost when it comes to gardening but, like many things during this season, have tried to embrace anything that offers potential for nourishment.

Usually for me that’s writing, taking pen to paper and letting myself discover what needs to be said. Lately though, I’ve been overwhelmed with ideas—for essays, for poems—but only fragments come out. I’m not sure if it’s the uncertainty of the time, or my life at this moment, or if it’s just there’s too much to write about, too much to process, too much to share. I’ve struggled to find creative space, both physically and emotionally.

Part of the backyard refresh, in addition to the basketball hoop, the dedicated fort-building trees, the shuffling of deck furniture, is a repurposing of a small shed. Cleared out of old bikes, shovels, cracked pots, and campfire wood, the whitewashed space now houses a seafoam writing desk and lilacs blooming at an opportune time. With this space, and the online offerings below, I find I’m emerging from a writing hibernation of sorts, finally having some urge to create.

During this time of pandemic, I’ve found so many generous spaces for writers to connect virtually. I’ve “met” with writers’ groups, both local friends well-known and those from all around the world. One thing I’m grateful for during this time is that many of the classes and gatherings I’ve longed to be a part of are now available via Zoom: Columbia University’s Narrative Medicine program has several offerings a week, Toronto’s Firefly Creative Writing has moved writing sessions online, Stanford’s Medicine and the Muse offers a weekly writing and sharing group that has been encouraging and approachable, Suleika Jaouad’s Isolation Journal email prompts have featured some of my favorite writers and thinkers.

I’m hoping to get back into a regular cadence of Narrative Medicine Monday posts and even Free Write Friday prompts, with a COVID-19 theme. But I’m also letting myself be fluid during this time, resting when I need to (anyone else find they just need naps in the middle of the afternoon no matter what the day holds?) and not demanding so much of myself—that I should be writing more or should be homeschooling in a certain way or should be innovating at work or should be anything other than what I need to be in this moment to move forward.

Here are some resources I’ve found that have provided writing community and encouragement to get pen to paper, finger to keyboard, soul to rest. Some are geared toward healthcare workers, but there are also opportunities for the general public looking for a creative space.

Be gentle with yourself, and those around you. May you find the space for rest and growth and the hope of creating something new.

The Isolation Journals: Author and speaker Suleika Jaouad will send you a daily thought and prompt from an inspiring writer, artist, person of note.

Firefly Creative Writing: Early morning (for us west coasters!) collective writing sessions, a prompt and 20 minutes to write together, to benefit small business rent relief.

Writing Medicine: Saturday morning time for healthcare workers and their families to write and share, led by Writer in Residence Laurel Braitman (who also has a wonderful TED talk on Storytelling and Writing) at Stanford’s Medicine and the Muse program.

Columbia Narrative Medicine: Virtual book club & narrative medicine writing sessions led by faculty and alums of the original program in the traditional style of close reading, discussion, writing, and sharing.

Hugo House Quarantine Write-in: One of many online offerings from this prolific Seattle writing community. Check out their classes, virtual happy hours, and other events too!

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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

Tin House: On Acceptance, Rejection and Taking My Time

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The Tin House Winter Workshops are held on the Oregon Coast, in the small town of Newport. The quirky Sylvia Beach Hotel is an appropriate literary-themed home base, each room named after a famed author and decorated in the style of their particular genre. I applied to the nonfiction workshop at the last minute, feeling dejected from recent rejections and once again questioning my validity as a writer, as a creator of art. When I saw the instructors for this year’s nonfiction workshop though, I knew I needed to apply.

I’ve admired Esmé Weijun Wang‘s work and, in fact, met her briefly at AWP 2019. I asked her to sign my copy of The Collected Schizophrenias after an awkward non-conversation where I blurted out something about being grateful for her essays. (I am not good around celebrated authors or actors, let me just apologize in advance. Or in retrospect. Sorry, Bradley Cooper.)

Attending my first writing workshop with Tin House and with Esmé was a gift I didn’t realize I needed at this stage of my career. My small cohort of incredible women writers were generous in their feedback and kindness. Their critiques were insightful, their encouragement sincere.

Esmé and the other talented instructors, T Kira Madden and Sophia Shalmiyev, each gave lectures and readings (one of which, I surprised myself by crying through.) Other highlights included the book exchange, dive bar karaoke, participant readings, and moonlit morning runs on the compact coastal beach.

One night we talked about our writing goals for the year and I mentioned my participation in #Rejection100, a group whose purpose is to celebrate the act of trying. Sometimes, I feel too uneducated in the literary world, sometimes I feel too old. Sometimes I feel my voice is too privileged or too uninteresting to have anything of significance to add to the conversation.

T Kira’s lecture, and time with these writers, gave me permission to move beyond my own expectations and the world’s requirements of my work. She challenged us to ask questions of ourselves: What are you writing toward? What are you writing about? How do we reframe our ideas of what “no” means? I like the idea that in nonfiction we are “chasing the question, honoring the unknown.”

Esmé asked us on the last day of the workshop what we’re taking away with us, what we are offering to our fellow participants, from this time on the coast. I said I would take away, and offer, permission. Permission to, as T Kira encouraged, lean into my interests, to listen to my mistakes. Permission to write into the paradox, to take my time. I am impatient and this rushed world fuels this tendency. In writing, in creating, in listening to the story that is tumbling within, I’m learning to take my time, allow rejection to serve as a teacher, not a declaration of who I am. I’ll continue to honor the unknown, and give myself permission to chase the question. Even if I don’t know quite where I’m headed.

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Narrative Medicine

Narrative Medicine Monday: Foley Catheter

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Poet Kimberly Johnson shares the experience of caring for her husband during his cancer treatment in “Foley Catheter.” Johnson writes about a different kind of intimacy, that of a caregiver for a loved one.

She begins with the mechanics of cleaning her husband’s catheter with “kindliest touch,” changing the drainage bag. This interaction creates a different dimension to their partnership. The poem is a kind of contemplation on marriage, on how we care for those we commit to even as their bodies fail, are transformed: “When I vowed for worse / Unwitting did I wed this”. Johnson writes with tenderness, but also refreshing clarity that this “jumble / Of exposed plumbing” has not been an easy experience to maneuver.

In reading Johnson’s poem, I think not only of the different intimacies of marriage, but also the vulnerability that arises between patient and clinician. Each day patients confide in us, let us care for their bodies, share things that they are sometimes unable to share with those closest to them. It is a privilege, a gift, and, at times, a heavy weight to carry.

Johnson’s honesty reveals a different kind of intimacy that arises out of caring for her ill husband. As his nurse, this other connection “Opens—ruthless and indecent, consuming / All our hiddenmosts.” She ends with the words we use, tying the tenacity of a tumor to that of the cherished spouse: “In a body, immodest / Such hunger we sometimes call tumor; / In a marriage / It’s cherish. From the Latin for cost.”

Writing prompt: If you’ve cared for a loved one who was ill, how did this interaction alter or add layers to your relationship? Has intimacy ever cost you anything? If you’re a healthcare provider, what are the benefits, or the drawbacks, of being exposed to patients lives and bodies in such a profound way? Has that experience changed you or the way you interact in your personal relationships? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: What is the Language of Pain?

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Anne Boyer asks “What is the Language of Pain?” in this excerpt from her book The Undying. Her analysis of pain is a commentary on modern society: “To be a minor person in great pain at this point in history is to be a person who feels inside their body when most people just want to look.” To be sure, ours is a society of superficialities. Boyer goes on to outline the different kinds of pain, including the “epic pain of a cure.”

She argues that “pain doesn’t destroy language: it changes it.” She describes Hannah Arendt’s claim that pain’s “subjectivity is so intense that pain has no appearance.” Have you experienced this type of intense pain? Were you able to find the words, the language to describe it? Boyer argues that pain is, in fact, excessively communicative, that “if pain were silent and hidden, there would be no incentive for its infliction. Pain, indeed, is a condition that creates excessive appearance. Pain is a fluorescent feeling.”

Boyer concludes the the question is not whether pain can communicate, but actually “whether those people who insist that it does not are interested in what pain has to say, and whose bodies are doing the talking.”

Writing Prompt: Would you argue that “the spectacle of pain is what keeps us from understanding it, that what we see of pain is inadequate to what we can know?” Why or why not? Think of a time you’ve been in pain or witnessed a loved one or a patient in significant pain. Try writing (or drawing or painting) the experience with all of your senses. Alternatively, consider what pain has to say to you or those around you. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: When in Distress, Try Sonnets

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It’s a new year and I feel ready to leave a decade riddled with much distress behind. Author Susan Gubar suggests “When in Distress, Try Sonnets” in her recent piece in The New York Times. As someone who finds comfort in carefully crafted words, especially poetry, I can certainly get behind this line of thinking.

Gubar, who writes about living with cancer, describes her “dwindling support group” and the lengths some are going to for treatment, “not telling their oncologist about the fortune they are spending on medicines from Cuba.” She acknowledges all that has been lost through her own cancer treatment, the ileostomy requiring “no more nuts, corn, salads, berries or cherries. Long walks and vigorous exercise had to be relinquished, given the major side effect of the daily targeted drug: fatigue. Wishing myself stronger, desiring this woman’s intact body, that other woman’s vigor, I despise myself for the envy that has me in its grip.”

Reflecting on all that she and those around her have been through, Gubar quotes Stuart Scott: “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live.” Gubar turns to the sonnet to think about this life and how to find consolation when that living gets difficult.

She analyzes the structure of a sonnet through the lens of living with a serious illness: “volatility of sonnets instructs us, I believe, for this short form generally hinges on an internal turn, known as a twist or volta. First there is one absorbing emotion or conviction and yet oddly, unexpectedly, here comes another. The mutability of our moods is captured in the 14 lines of a poem that consoles because variability means not being stuck in one fixed lot.”

Gubar contends that the sonnet, “large in scope but small in size…encapsulates infinitely malleable spirits within a finite frame, as we do.” I like this idea of the sonnet holding endless possibilities within a particular framework. Our own bodies are similarly confined, in space and in time, yet the spirit is expansive beyond imagination.

She notes the lesson of change inherent in sonnets, the fact that “even when a wretched situation deteriorates in the miniature world of the sonnet, it speaks of change.” Sonnets, like life, don’t offer decisive closure, yet convey the truth that “till the very close…our lives are spiced and spliced.”

Writing Prompt: Choose a sonnet listed by Gubar and use a word or line that resonates with you as a prompt to write about your own life illness or challenge. Alternatively, think about the idea that we are “infinitely malleable spirits within a finite frame.” Write about your own “frame” or body and how it has supported or failed you. Consider several “spirits” you’ve embodied that have changed over time, or that you hope to embody in your lifetime. Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Holdfast

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Poet and essayist Robin Beth Schaer writes of death and the necessity of touch in “Holdfast.” She starts by recognizing that we tend to leave the dead alone, they “are for morticians & butchers / to touch. Only a gloved hand. Even my son / will leave a grounded wren or bat alone…”

What is too fragile to hold on to? Schaer contends butterflies are “too fragile to hold / alive, just the brush of skin could rip / a wing.” She shares about a beloved friend who she never touched. They didn’t speak of her terminal illness or of “the days pierced by radiation.” There is a shrouding of her friend’s illness, a compartmentalization in an effort to protect and respect her wishes, but the result was an absence of physical connection.

Shaer concludes that “We should hold each other more / while we are still alive, even if it hurts.” She notes that baby monkeys prefer touch over a more caloric type of nourishment. I remember this study from my college psychology days. It speaks to that which we seem to know as young children, forget, and relearn over time: holding fast to each other is what may matter most in this world. Shaer, like many of us, finds herself agreeing with the baby monkeys: “I would choose to starve & hold the soft body.”

Writing Prompt: Have you had a friend or patient or loved one who was too ill or seemed to fragile to touch? Do you think touch can have a healing effect or that lack of touch can be detrimental? How have you seen this manifested in your life or a patient’s life? What are the different ways we hold on to each other, both literally and figuratively? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Medicine and Its Metaphors

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In this excerpt in Guernica from Eula Biss’ book On Immunity, she wonders at the different metaphors in medicine. Though paternalism is clearly fraught with issues, if it “has fallen out of favor in medicine… how we should care for other people remains a question.” Biss explains Michael Merry’s distinction between paternalism that promotes good or prevents harm, such as “in traffic laws, gun control, and environmental regulations,” and the misuse of regulations that are “often used to justify a coercive use of power.”

Biss notes the alternative that is offered, autonomy, has caused “the paternalism of doctors [to be replaced] by the consumerism of patients.” Today’s physicians see the results of this shift in their daily work, responding to patients’ requests of “tests and treatments from a menu based on [their] consumer research.” In modern medicine, the consumerist culture is such that, as Biss notes, “doctors may be tempted to give patients what we want, even when it is not good for us.”

How do we address the problems for patients and for healthcare providers with both the paternalistic and the consumerist cultures? Biss turns to the idea that a more caring framework might be the answer. When her son requires a surgery her father advises, “‘If you’re going to get medical care you’re going to have to trust someone.’” Biss notes she usually consults her father first regarding medical issues—she trusts him. But the decision point regarding her son’s medical situation was not her father’s area of expertise. She realized she had to rely on another’s advice.

Biss tries every other treatment option for her son that was suggested by other specialists or friends. She does her research. But eventually her son’s symptoms worsened: “Then his breathing, already loud, became irregular at night. I crouched next to his bed, holding my own breath during the pauses in his breathing to gauge how long he was going without air. After particularly long pauses he woke, gasping and coughing. I scheduled the surgery.”

When the day of the surgery comes, Biss “was most hopeful not that the surgery would enact a miracle, but that it would simply do no harm.” Biss then requests to remain with her son as he undergoes anesthesia, which the doctor resists: “Studies had shown, he told me, that the body language and facial expressions of anxious mothers can cause children to fear surgery and resist anesthesia.” Biss persists, and she and the anesthesiologist come to a compromise: she will hold his hand but not be in view of her son as the medicine takes effect. When he wakes from anesthesia, Biss has not been summoned to the recovery room yet and her son calls out for her in panic. The experience is traumatic for both Biss and her son. All the anesthesiologist offers is that her son won’t remember “any of this,” though Biss replies, “I will.”

Biss’ father offers a new metaphor for modern medicine, that I believe both patients and physicians can envision: Dracula. Her father argues that “‘medicine sucks the blood out of people in a lot of ways.’” There are the financial aspects for the patient, and dire emotional consequences for patients, their families, and often for healthcare providers, who are suffering from an epidemic of burnout. Biss notes that her physician father himself is “fairly skeptical of medicine,” stating that “‘most problems will get better if left alone. Those problems that do not get better if left alone are likely to kill the patient no matter what you do.’” It is a grim declaration in many ways, but perhaps the vampire metaphor puts patients and physicians on a more appropriate plane: working together to resist the anemia of compassion and trust that threaten us all, and in so doing improve the care we give and receive.

Writing Prompt: What metaphor do you think is most accurate of medicine today? Can you think of another metaphor for the difficulties encountered by patients and healthcare professionals? Have you experienced, as a patient or as a physician, the issues with paternalism or consumerism in medicine? Alternatively, what role should skepticism or comfort play in medicine? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Heartbeats

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In honor of World AIDS Day yesterday, today’s Narrative Medicine Monday will be a poem by Melvin Dixon, recently highlighted by poets.org. In “Heartbeats,” Dixon sets a staccato cadence that reveals the evolution of a disease.

At the start of the poem, the narrator is the picture of good health: “Work out. Ten laps….Eat right. Rest well.” Then, he notes the “Hard nodes. Beware.” Dixon achieves an astonishing flow, given each sentence is just two syllables. The reader is forced to stop and consider the weight, the gravity of the situation that deepens, even as the lines remain short.

Dixon is able to convey the medicine with simple, ordinary words: “Reds thin. Whites low.” There is a turn in the poem with the narrator showing resolve: “Get mad. Fight back.” In this moment, he repeats previous lines found during times of health: “Call home. Rest well.”

The focus then shifts to the mechanics of the body, the breath: “Breathe in. Breathe out. / No air. No air.” Time becomes fluid, altered when one is sick, one is dying: “Six months? Three weeks?… Today? Tonight?” I find that I am holding my breath as I finish Dixon’s poem. I immediately look him up, knowing the likely outcome but hoping it will end differently just the same.

Writing Prompt: Try writing a poem about an illness or health challenge from diagnosis to treatment in short fragmented sentences, like Dixon’s “Heartbeats.” Consider diabetes or cancer, dialysis or pregnancy. How does the limitation of short sentences crystallize the situation? Alternatively, think of a moment you’ve shared, either personal or in a healthcare setting, with a patient with HIV or AIDS in the 1980s or 90s. Write this scene as it occurred during that time period, then reimagine the same scene in a modern setting. What changes, what remains the same? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Complaint

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We discussed writer and physician William Carlos Williams’ “Complaint” during a poetry lecture at the first workshop of Harvard’s Media & Medicine program. I was struck by how differently those in the class, mostly clinicians, interpreted this poem.

I saw it as Williams’ manifesto for physicians. Healthcare professionals often feel a calling to their work. Though it is a challenging road, in both training and practice, there is rich meaning inherent in the work we do. Williams at first seems reluctant to move into the dark in the middle of the night, but when he arrives to the patient’s home, he is able to “shake off the cold.” He finds a “great woman / on her side in the bed.” There was discussion as to what Williams meant by “great woman.” Why do you think he used this adjective? Do you find his tone in the poem complementary or otherwise?

There were different thoughts on Williams’ curious use of “perhaps” in the following lines: “She is sick, / perhaps vomiting, / perhaps laboring / to give birth to a tenth child.” These are things that, as her physician, you’d expect him to be clear about. I wonder if the use of “perhaps” is a commentary on medicine itself. Our patients could be suffering, and do, from all kinds of illness and ailments and, though not interchangeable, regardless of their disease, we owe them our attention and compassion.

Williams ends tenderly, a hope for the profession, despite a tone of distancing himself from the situation. These last lines reveal the intimacy that often occurs between healthcare providers and patients. The doctor begins in the chill of midnight, going because he is called, but ends with this moment of compassion. Can you relate to this scene, either as a patient or as a physician?

Writing Prompt: Do you think in today’s world of modern medicine patients and their doctors still connect in the same way as during Williams’ era? How is a house call different from an office visit at a clinic? What do new technologies (email, video visits, chat) offer patients and their medical providers, and how do these interactions limit that relationship? Alternatively, think about the title of this poem. Why do you think Williams called it “Complaint?” Write for 10 minutes.

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