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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Narrative Medicine

Narrative Medicine Monday: Bill of the Month

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NPR’s recent “Bill of the Month” highlighted a Montana man’s kidney dialysis that landed him with a bill of half a million dollars. The story describes how Sovereign Valentine, a 50-year-old personal trainer, discovered he was in kidney failure and in emergent need of dialysis. After discharge from the hospital, he and his physician wife returned to their small town in Montana and were told he’d need dialysis three times a week, with two options for treatment centers about 70 miles from their rural home.

They chose a center in Missoula, but soon after the outpatient treatments started, they were contacted by “an insurance case manager…warning them that since Fresenius was out of network, they could be required to pay whatever the insurer didn’t cover. The manager added that there were no in-network dialysis clinics in Montana, according to [his wife’s] handwritten notes from the conversation.”

Valentine’s physician wife attempted to get a quote on how much the dialysis might cost, but was unable to get a specific, or even rough, estimate. The NPR story highlights a law from 1973 that “allows all patients with end-stage renal disease like Sov to join Medicare, even if they’re younger than 65 — but only after a 90-day waiting period. During that time, patients are extremely vulnerable, medically and financially.” The outpatient dialysis center billed them $524,600.17. The NPR story notes that because of the law, there is “an incentive to treat as many privately insured patients as possible and to charge as much as they can before dialysis patients enroll in Medicare.”

Part of what is so disconcerting (and relatable for me personally) about this particular patient’s situation is that his wife is a physician, a person who would presumably have an advantage in navigating the system. She “knew it was important to find an in-network provider of dialysis.” Even with her extensive practical knowledge, she found herself and her loved one in an untenable situation.

Eventually, the patient’s wife contacted the state insurance commissioner and learned that there actually was an in-network dialysis clinic that had not turned up in other searches. Through this experience, Valentine discovered new insight into her patients’ challenges: “It’s very, very frustrating to be a patient, and it’s very disempowering to feel like you can’t make an informed choice because you can’t get the information you need.”

Writing Prompt: Have you had a time you were surprised by a medical bill, or found yourself ill and needing treatment when you didn’t have any health insurance? How did you feel? Consider writing a letter in second person to the insurance company, to the hospital, to yourself at that time, to the healthcare system as a whole. If you’re a medical provider, think of a time you tried to help a patient navigate the system regarding a medical bill. What was the experience like? Did anything surprise you? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Hospital

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Poet and essayist Marianne Boruch illuminates a scene from a “Hospital.” Her poem provides a contrast of what an outsider might experience and the reality of those who work in such a place. She notes that “It seems / as if the end of the world / has never happened in here.” For patients and their loved ones, their worst day, their worst moment, often occurs in the confines of the hospital.

The narrator expects more, a kind of signal, of “smoke” or “dizzy flaring” but instead she waits, watching people go by as if on a conveyor. She sees “them pass, the surgical folk– / nurses, doctors, the guy who hangs up / the blood drop–ready for lunch…” They are going about their day, their work. She catches them at “the end of a joke,” but misses the punch line. Instead, it is lost in “their brief laughter.”

Boruch’s reflection reminds me of Mary Oliver’s lines in Wild Geese: “Tell me about despair, yours, and I will tell you mine. / Meanwhile the world goes on.” Boruch’s poem reveals the dichotomy of a hospital: while some can be devastated, others go about their day, wearing their designated uniform of “a cheerful green or pale blue.”

When I have been a patient, or the loved one waiting for word, the usually familiar hospital is completely transformed from how it exists for me as a physician. Boruch captures these parallel worlds in her poem, and gives the reader space for reflection on their disconnect.

Writing Prompt: Think of the last time you were in a hospital as a patient, as a visitor, as a medical professional. What did you observe? How did your experience differ based on the reason why you were there? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: What I Learned Photographing Death

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Caroline Catlin shares her riveting story of how photographing those with terminal illness gave her perspective about her own cancer diagnosis in the New York Times’ “What I Learned Photographing Death.”

Catlin volunteers with Soulumination, a nonprofit organization that documents moments between critically ill individuals and their families, including the end of a child’s life. As I also live in Washington State, I had heard of this remarkable organization and the unique and thoughtful service they provide. Catlin’s piece, though, also reveals the perspective of these volunteer photographers. As Catlin describes, her role is to enter a room “ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.” Her experience echoes that of many who work in the medical field. She too is a kind of caregiver for these families, wielding a camera rather than a stethoscope.

This young writer and photographer describes how in October she herself became a patient, eventually being diagnosed with malignant brain cancer. Catlin highlights how, since her diagnosis, she’s bonded with the people she’s photographing in a new way, including a teenager who shared mutual baldness: “The fact that I am sick and young has helped me form new connections with the people I am photographing.”

Catlin describes photographing the birth and death of a baby who was born with a condition that wasn’t survivable. She writes with heartbreaking clarity how “[h]e was perfect, but he did not cry,” how she captured “[h]is arm…gentle across his mother’s face — I clicked the shutter to save this gesture.”

Catlin is clear on her purpose in doing this difficult work: “When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human.” She also has discovered moments that speak to her own confrontation with mortality, such as when a child cries over the loss of his sister, then goes on to play near her body. She recognizes the resilience that exists in this world, that her friends and family “will also continue to live on if I die too soon.”

In the end, Catlin’s revelation is that “grief is centered not in pain but in love.” This is the lesson that she shares with us, the encouragement that “in our most horrific of moments we are met with small pricks of bright light, piercing and strong.”

Writing Prompt: In this piece, Catlin expresses how her work with Soulumination gave insight into her own experience with cancer and facing mortality. If you’re a medical provider, what has your work revealed to you about your own mortality? Alternatively, think about a time you stepped into another person’s story, during a particularly challenging time, either as a friend or family member or stranger. What did you learn from walking alongside that person, listening or observing? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: What almost dying taught me about living

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Writer and speaker Suleika Jaouad urges us to rethink the binary nature of health and illness in her TED talk “What almost dying taught me about living.”

Jaouad, diagnosed with leukemia herself at the young age of 22, questions the narrative of cancer survivor as a hero’s journey. She recalls that “the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor… it’s a myth. It isn’t just untrue, it’s dangerous, because it erases the very real challenges of recovery.”

Jaouad finds herself discharged from the hospital and struggling with reentry to life. She had spent all of her energy just trying to survive, and now needs to find a new way of living amidst expectations of constant gratitude and labels of heroism. 

Her assertion is that often the most challenging aspect of a jarring interruption to life occurs after the inciting event or episode, in her case, cancer, has resolved. It is the attempt in weeks, months, years after to readjust to the daily act of living that can be the most grueling. She notes that “we talk about reentry in the context of war and incarceration. But we don’t talk about it as much in the context of other kinds of traumatic experiences, like an illness.” Jaouad urges us instead to accept that there is a spectrum of health and illness, and we should “find ways to live in the in-between place, managing whatever body and mind we currently have.”

Through writing a column about her experience fighting cancer and reentry into the world of the well, Jaouad begins getting letters from a vast array of people who relate to her story, her inspiration that “you can be held hostage by the worst thing that’s ever happened to you and allow it to hijack your remaining days, or you can find a way forward.”

Jaouad herself seems to find a way forward by sharing her story and connecting with others. Her struggle certainly resonates with me and my own recent life interruption. This concept of the nonbinary nature of well and unwell is also important for medical providers to consider. As primary care physicians, we are the ones who not only deliver a life altering diagnosis, but also who continue to care for patients long after their bodies recover or continue on with a chronic disease. I’m looking forward to reading Jaouad’s book on this topic, Between Two Kingdoms, out next year.

In the end, Jaouad concludes that we need to “stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there’s some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.”

Writing Prompt: Jaouad assures us that every single one of us will have our life interrupted, either by illness or “some other heartbreak or trauma.” Think of a a time your life has been interrupted. What was the hardest aspect for you? What was your experience of “reentry?” Alternatively, think about the concepts of health and illness. What do these words mean to you, either as a patient or as a medical provider? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Having and Fighting Ebola

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I wrote yesterday about how I attended a summer institute in Paris that focused on health beyond borders. The final keynote speaker was Dr. Craig Spencer, who shared his work rescuing and treating migrants in the Mediterranean.

Dr. Spencer has worked extensively in global health, and in 2015 wrote an essay published in The New England Journal of Medicine about contracting Ebola when he was treating patients in Guinea. He was a clinician who became a patient, fighting for his life.

In Spencer’s piece, he outlines how the “Ebola treatment center in Guéckédou, Guinea, was the most challenging place I’ve ever worked.” Though there was no clear breach of protocol, Spencer still returned home having contracted Ebola, becoming “New York City’s first Ebola patient.” Spencer shares both the anxiety and compassion he felt in caring for patients with Ebola: “Difficult decisions were the norm: for many patients, there were no applicable algorithms or best-practice guidelines.”

Dr. Spencer shares how, back in New York, after “the suffering I’d seen, combined with exhaustion, made me feel depressed for the first time in my life.” Though immediately presenting to the hospital the moment he exhibited any sign of illness or elevated temperature, Spencer is vilified in the media, his activities upon returning home scrutinized and “highly criticized…. People excoriated me for going out in the city when I was symptomatic, but I hadn’t been symptomatic — just sad. I was labeled a fraud, a hipster, and a hero. The truth is I am none of those things. I’m just someone who answered a call for help and was lucky enough to survive.”

Spencer calls out the panic that ensued after his diagnosis, how politicians “took advantage… to try to appear presidential instead of supporting a sound, science-based public health response.” He points out that “At times of threat to our public health, we need one pragmatic response, not 50 viewpoints that shift with the proximity of the next election. Moreover, if the U.S. public policy response undermined efforts to send more volunteers to West Africa, and thus allowed the outbreak to continue longer than it might have, we would all be culpable.” Spencer notes not only the misguided response to his own infection, but also the ripple effects this policy could have had on the outbreak worldwide. His is a cautionary tale of how a response to any public health situation must be grounded in steady pragmatism and based in scientific fact. Lives depend on it.

Writing Prompt: Dr. Spencer shares how, after witnessing significant suffering through his work with Ebola patients, he felt “depressed for the first time in my life.” If you are a medical provider, have you experienced similar secondary trauma? How did this manifest? Where did you find support? Alternatively, consider that Spencer urges us to “overcome” fear. Reflect on what you are fearful of, from a public health standpoint or otherwise. Is it a rational or irrational fear? How might it be overcome? Write for 10 minutes.

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Ramblings

Paris

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Bonjour! I’ve been remiss with posting lately due to travels. I went to Paris in early June for both work and pleasure. It had been a decade since I’d visited the City of Lights, and, despite several stressful setbacks (beware that Airbnb, even if reserved months in advance, can cancel within days of your scheduled arrival!), Paris did not disappoint.

I have a special affinity for the city, as it was the first place I traveled internationally. I took French in high school and went there as an exchange student, living with a host family for just a couple of weeks. It was the first time I’d been anywhere predominantly non-English speaking and my host family was attentive, warm and forgiving. My time in Paris was a gentle nudge out of my American suburban bubble. More drastic shifts in my world perspective would come later, but I always think of Paris fondly as my start to a love of travel. And, of course, it’s Paris! The richness of art, architecture, food, parks, history…. I’ve been back to Paris once each decade since and this, by far, was my favorite trip.

I had initially planned to attend a writing retreat right before my medical conference, but as the retreat was canceled, I instead had several days completely to myself in Paris before my husband arrived and my conference started. As a working mom with three little ones, solitary time in this magical city was bliss. I strolled the narrow streets, stepped into cafes and hidden parks. I hit my favorite Musée d’Orsay and Rodin and sat in quirky bookshops sipping espresso and writing in my notebook. I even had a chance to read a poem during a multilingual open mic night.

The summer institute I attended was also exceptional, an annual meeting of the minds hosted by the CHCI Health and Medical Humanities Network. This organization is a “hub for health and medical humanities research and collaboration” and this year’s theme, “Health Beyond Borders,” brought together experts in both narrative medicine and global health, each particular interests of mine.

Several talks I particularly enjoyed were:

A keynote by Ghada Hatem-Gantzer about her incredible work with women and girls who have suffered violence.

I connected with Shana Feibel on #somedocs prior to the summer institute when I stumbled across her post about presenting in Paris. Dr. Feibel spoke about a topic that resonates with me: “Bridging the borders between Psychiatry and other Medical Specialities: A Case for the Medical Humanities.” I hope to continue to learn from her work in this area.

Sneha Mantri from Duke is a neurologist with her Master’s in Narrative Medicine and gave a fascinating presentation about border crossing and modern medicine as it relates to Mohsin Hamid’s novel Exit West. I also learned Dr. Mantri was in the same narrative medicine class at Columbia as Stephanie Cooper, who I’ve gotten to know well through the Seattle chapter of the Northwest Narrative Medicine Collaborative. It’s a small, connected world!

Columbia’s Danielle Spencer presented innovative work on the idea of lived retrospective diagnosis, or metagnosis. I’m looking forward to her book on this topic, forthcoming in 2020.

Emergency Medicine physician Craig Spencer gave a moving keynote presentation about his work with Medecins Sans Frontieres and specifically the migrant crisis in the Mediterranean.

I returned from Paris rejuvenated and energized on many fronts. C’est magnifique.

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Narrative Medicine

Narrative Medicine Monday: Hospital Writing Workshop

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Poet and physician Rafael Campo describes the magic that can occur in a “Hospital Writing Workshop.” Campo starts the poem at the end of his clinical workday, “arriving late, my clinic having run / past 6 again.” Campo is teaching a workshop for “students who are patients.” He notes the distinction that “for them, this isn’t academic, it’s / reality.” These are patients with cancer, with HIV, and Campo is guiding them through poetry and writing exercises to search for healing and respond in a unique way to their disease and suffering.

Campo outlines his lesson, asking the students to “describe / an object right in front of them.” Each interprets their own way, to much poignancy. One student “writes about death, / her death, as if by just imagining / the softness of its skin … she might tame it.” In the end, this poem is about the power of poetry and art for both the patient and the medical provider. It’s about how something as simple as a writing workshop can cause us to pause, “take / a good, long breath” and move through suffering to a kind of healing, to a kind of hope.

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Narrative Medicine

Narrative Medicine Monday: My One, My Only

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In the latest issue of Brevity, writer Michaella Thornton explains how she answers strangers about “My One, My Only.” At the grocery store with her toddler daughter, someone will invariably ask, “Is she your only child?” Thornton understands there are things that “give us away,” like “the way I narrate our grocery trip.”

When “someone asks the ‘only child’ question” at checkout, Thornton recalls the years of infertility treatments she endured: “Instead of conceiving a baby by a glacier-fed lake, we pray at the altar of reproductive medicine and lost causes.” Thornton wonders at it all, noting that the “human egg is a redwood among the rest of our sapling-sized cells. Think of the size of a period at the end of this sentence—that is the size of a human egg.”

She relays the grueling aspects of her experience with infertility treatments, the “pin-pricked stomach,” the “loneliness together” she endures with her husband. In the end, though, “as the doctors put my organs back into my body, as I throw up into a kidney-shaped pan” she is “crying over and over again to my newborn daughter, ‘I love you. I love you so much.'”

In this flash essay Thornton uses a moment with a stranger, an intrusive question many feel compelled to ask, to convey her experience with infertility, with IVF treatments, with the miracle that is her one and only child. She notes the “inadequacy of the question” strangers pose, and, in this short piece, takes us with her through “sublime sadness and joy.”

Writing Prompt: Have you had a stranger comment on the number of children you do, or don’t, have? How did you feel, what thoughts did it trigger when you received this question? Have you or someone you know struggled with infertility or are you a physician who treats this? What is it like for a patient to go through this treatment? Write for 10 minutes.

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Writing

Mark

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I wrote the braided essay “Mark” a few years ago but never found the right home for it. On a bit of a whim, I submitted the flash piece to the 2019 EPIC Writing Contest and am so pleased it won Honorable Mention. Tonight, at a reception for the contest winners, I read the piece. A stranger came up to me right after, tears in his eyes, and expressed to me how much it meant to him, both because of his own history and that of his children. I won’t go into details, but was touched by his clear connection to the essay and told him I was grateful for sharing some of his own story with me.

As I walked back to my car, I realized: this is why I write, why I share. As a nonfiction writer, as a memoirist, as someone who writes about the raw issues of my life and of those in my life and work, I’ve struggled mightily this year with how much is appropriate to divulge, what stories should be shared with the larger world and which are written just for myself or my writing group or my children. What I’ve learned in recent years, though, is that the more we disclose, the more authentic we are with our stories, the closer we become to others. When I share my own struggles, my own failings, my own fears and hidden joys, people are compelled to open up regarding their own. Just like the stranger at this reading – there is comfort in camaraderie, in the recognition that we all struggle, we all have great challenges in life. Being completely authentic with others is therapeutic and connecting in a way I never imagined possible.

Though in this age of social media and superficiality and anonymous critiques, opening up about your vulnerabilities can be biting at best, crushing at worst. Knowing that creative nonfiction, poetry and memoir are in my writer’s blood, I’ll have to continue to wade through the murky waters of authenticity and exposure. A wholly unexpected interaction like I had tonight, though, makes me want to write more, share more, and connect more with others. That is, after all, what creating art and being part of humanity are all about.

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