Narrative Medicine Monday: GUTS

I previously featured author Janet Buttenwieser’s essay, “The Colostomy Diaries,” on a Narrative Medicine Monday post. Today, I’m pleased to highlight her similarly humorous and heartfelt memoir, GUTS.

Buttenwieser writes with a comfortable familiarity, weaving candor into her story of misdiagnosis, treatment and loss. I felt like I was reading the words of a dear friend; Buttenwieser is authentic and relatable. She navigates the foreign and often perplexing world of medicine as a young patient, stricken with a debilitating illness. She finds herself getting regular CT scans and under the care of a surgical resident, contemplating operative measures: “I decided right then that I liked the resident better than my regular doctor. In my growing survey of medical professionals, I’d begun to notice a trend. The younger the doctor, the more he or she listened to me. They asked questions …”

I was particularly struck by a passage where Buttenwieser describes her overhearing a paramedic relay her emergency case to the hospital where the ambulance is transporting her to. He uses the common medical term “chief complaint.” She bristles at the phrasing, stating “I feel angry at the way we patients are portrayed by the medical establishment as whiny toddlers who need a nap. Patient complains of gunshot wound to the head. Patient complains of missing limb following leg amputation.” There is phrasing that becomes commonplace during medical training, traditional wording that is passed down in the name of congruity. To an outsider, though, I can appreciate how unfeeling much of this must seem. Medical-ese leaves much to be desired in the realm of patient-centeredness.

I was privileged to meet the local author briefly at a book signing and will attend a book club this week where she will also be in attendance. I admire her writing skills as well as her contribution to an important perspective – that of a young patient. GUTS has solidified its place among my favorite narrative medicine memoirs, including In Shock, When Breath Becomes Airand On Call.

Writing Prompt: Have you encountered a certain trend among medical professionals, as did Buttenwieser? Do you agree that younger medical providers are better listeners? As a self-proclaimed rule follower, Buttenwieser finds it difficult, especially early in her bout with disease, to advocate for herself or question her initial physician’s diagnosis and treatment plan. Have you faced a similar challenge in the medical world? Write for 10 minutes.

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Rhythm

I’ve been out of step, out of commission the past few weeks. I was incredibly ill over Easter weekend, had to cancel family events and it took my body a week to recover. I also was preoccupied with taking the medical board exam this week, a once in a decade test to maintain my license. My usual pattern of writing and blogging fell out of rhythm for the first time in two years.

I’m hoping to refocus, regain some footing now that I have other distractions behind me. Writing is essential to my life, my own self-care and purpose. I’ve been thinking a lot about rhythms of life, what is nourishing and essential, how different stages can be taxing in familiar ways.

Each month this year I’ve focused on a different area of personal growth. April is dedicated to the Sabbath, that sacred space of rest. I’ve always struggled with the concept of Sabbath and today’s nonstop rush of a world feeds into my tendency of devotion to productivity, to my To Do List, to my ambitions. I’m reading Wayne Muller’s “Sabbath“, which is a call to incorporating a rhythm of rest.

This may seem contrary to what I just wrote, about needing to re-establish my focus on writing, on my rigid rhythms. But I don’t think they’re actually incongruous, this need for structure, this necessity of rest. I want to avoid being legalistic about my schedule, but I also find comfort in boundaries, in a steady rhythm. Life brings so much unexpected upheaval. I don’t think it’s disingenuous to find peace in a plan that provides structure, that carves out time for that which is nourishing, which is restful.

What are your thoughts on rest? What rhythms of life do you find helpful or limiting? I will continue to explore this idea of Sabbath, but also return to my rhythms of writing in the hope that I’ll find peace both in learning to rest and in work that brings me fulfillment.

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Free Write Friday: Study

She lays out her highlighters, gathers her papers. She attended a review course with peers months ago, took notes from the lectures, sitting three quarters of the way back where she always can be found. She’s sorted the lecture slides, distilled the notes into neat documents organized by medical topic. She prepares to study.

The test only comes every ten years. She last took it at the end of her twenties, freshly graduated, freshly married. Studying was familiar then, she had no distractions. Now a decade later, three children and mid-career obligations provide frequent interruptions.

She sits in front of the computer screen in the early evening after tucking her eldest into bed, bleary-eyed from a full day’s work. She answers multiple choice question after multiple choice question, has to quit quizzing by 9 p.m. and crawl into bed.

She over-highlights her notes, as she always has. Neon yellow streaks her notebook so much that it doesn’t draw the eye to the critical as it should. She’s always been wary of leaving something out, letting a tidbit go, afraid she’ll miss it later on. She records even the most basic fact in black and white in case it escapes her overburdened mind. The result is too much retained, significance lost in overabundance. So much kept, she can’t tell what’s important anymore.

Prone to anxiety but gifted with compulsion, she never liked taking tests but survived the most examined profession. She sits for it again in two weeks, the boards. She’ll present her photo ID and settle into a straight backed chair, be issued her tiny whiteboard and dry erase marker. She’ll stare at a computer for six hours, interpret electrocardiograms and select the most appropriate treatment plan from the multiple choices.

Just after lunch her mind will become boggy. She’ll have to push through the examination fatigue, conjure the will to concentrate on each each vital sign, each lab result. She’ll muster renewed energy close to the end, sensing it near. She’ll collapse at completion, simultaneously buoyed by elation, as if she’s run a marathon, as if she’s climbed a mountain. And she has, in a way. She’s deposited all that information, stuffed into the recesses of her thoroughly educated synapses into the Prometric receptacle. She’ll be done. At least for another ten years.

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Narrative Medicine Monday: The Train

I featured one of Dr. Thomas Gibbs’ other essays on my very first Narrative Medicine Monday post in 2016. Today’s piece, found in the excellent flash essay journal Brevity, highlights another experience altogether. Dr. Gibbs is an obstetrician and therefore encounters dramatic medical emergencies that can put two lives at risk simultaneously. This was the case in “The Train,” when Gibbs is paged in the early morning hours about a bleeding pregnant patient who works in his office. Gibbs tells her husband to drive the patient himself to the hospital as he knows the urgency of the situation and that the local EMTs would take longer to get her there. He treats the patient as she arrives and disaster is averted. When he goes to inform the patient’s husband in the waiting room, he finds the husband shaken. In just getting to the hospital, all of them were in danger.

This piece made me think of all the advice we give patients, all the instructions we get from well-meaning physicians. Sometimes this advice has unintended consequences, either because patients misinterpret what was said or the instructions weren’t communicated effectively or because of events entirely out of anyone’s control. When you read the final lines of this essay, what were your first thoughts about the situation?

Writing Prompt: Have you given or gotten advice from a physician that, when followed, caused unforeseen consequences? Consider what happened or imagine what could have happened. As a physician, how did this change your medical practice or, as a patient, your relationship with that physician? Write for 10 minutes.

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Free Write Friday: Office Plants

She’s cleaning out her office, sorting through papers accumulated at Tuesday provider meetings: handouts on how to order intravenous iron, avoid high risk medications in the elderly, updates on the latest USPSTF recommendations.

Her office plants, bought in between Child #1 and Child #2, have suffered. Although assured these were the hardiest of greenery when she chose them from the local nursery, they couldn’t survive two long maternity leaves, an owner who returned to work sleep deprived, plant care at the bottom of a very long list of responsibilities. The soil dried out, even the succulents wilted.

Her youngest now well into toddlerhood, spring emerging from the dark hibernation of winter, she begins to replant, regrow, cultivate, cull.

Ten years into practice, she tosses lecture notes from a decade prior. She updates the snapshots lining the wall behind her desk: her eldest in a tutu, her son being tossed into the air, the baby’s cherub smile gleaming on a sandy beach.

She purchases new plants, still hardy but more hopeful for a prolonged existence. She re-pots them on her back deck, digging into the dry soil with her bare hands, gently shaking the roots. She nestles them into ceramic pots, settles the loose dirt around coarse stems.

It feels satisfying, grime under her nails, handling the earth, cultivating vegetation. She’ll take them back to her desk, restock her favorite tea, keep purging her loose papers, her files. One decade into her career, she’s ready to grow.

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Narrative Medicine Monday: Creating a Clearing

In “Creating a Clearing,” storyteller Lance Weiler interviews the originator of Narrative Medicine, Columbia University’s Rita Charon. Charon describes how she ended up in medicine and primary care and the origins of the field of Narrative Medicine. She felt she was missing something as a physician from her formal medical training at Harvard. So instead she sought out the English Department: “I figured they were the ones on campus who knew something about listening to stories…” Her time there led to a PhD and, in her words, it taught her “how to be a doctor.”

Charon points out that we are all patients. What do you think of her idea that “we do not have to divide ourselves into mind on one side and body on the other or body on one side and self or personhood on the other, but instead we are all mortals inextricably bound to our bodies, our health, our frailties, our eventual mortality. This is how it is within that element that we don’t become ourselves, but [we] are ourselves”? Do you feel that the medical system tends to separate our bodies from our minds, from our personhood?

Charon explains how Narrative Medicine has grown over the years and now attracts all kinds of people in fields of health care, art, history and beyond. She states that the field of Narrative Medicine has “created a clearing,” a safe space for patients and clinicians and artists to “show people how to listen with great attention and respect.”

Charon describes how we’re traditionally trained as physicians to address a patient’s problem. Western Medicine is a disease model, focused on diagnosing, preventing or treating a problem. Charon takes a different approach. She first listens, focusing on what is important to the patient. I like how Charon begins: “I will be your doctor. I need to know a lot about your body, your health, your life. Tell me what you think I should know about your situation.”

She notes that both sides suffer from the typical patient-physician encounter: “[patients] come in armed with their list of questions that they’ve written down so as not to forget any in their precious twelve minutes, which is all they’re allotted. The clinician, on his or her side, is already looking at the wristwatch aware that there’s another three people in the waiting room waiting for what’s going to amount to the same brusk, impersonal, divided attention. So nobody’s getting what they want or need or desire or can benefit from.” Does this sound familiar to you? Are you hopeful, as is Charon, that if patients and clinicians lead on medical reform we can find a better way? What would that look like?

Writing Prompt: What skills do you find most helpful to listen to another person’s story? What would it be like as a patient to have a doctor ask you: “Tell me what you think I should know about your situation”? How would that question change the conversation? Think about what aspect of your training was most pivotal to teaching you how to be a doctor/nurse/physical therapist, etc. Are you surprised that for Charon it was her studies in English? Write for 10 minutes.

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Published: Back to Work

I’m moving into a different stage of motherhood. My youngest will be two years old in June and she’s well into toddlerhood: talking and walking and feeding herself. She’s even expressed some interest in potty training and dressing herself, likely the byproduct of having two active older siblings.

It’s therefore bittersweet to read old essays I wrote while in the throes of new babyhood, that foggy state of sleep deprived motherhood, body and emotions still recovering from the ravages of pregnancy. I’m thrilled to have one such piece published in this year’s issue of Mom Egg Review, focused on play and work in motherhood. My piece, “Back to Work,” is a snapshot in time, returning to work after my last maternity leave. Everything feels uncomfortable in that transition: leaving your children at home, putting on ill-fitting work clothes, pumping at work, waking at night to hold your restless babies.

You can find the Play & Work Issue of Mom Egg Review, full of literary poetry and prose, here. You can order this, or other insightful MER issues, online.

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Narrative Medicine Monday: What I Would Give

Physician and poet Rafael Campo has published several collections of poetry and prose. In his poem “What I Would Give,” Campo outlines the “usual prescription” given by physician to patient: “reassurance that their lungs sound fine” or “that the mole they’ve noticed change is not a melanoma…” He instead would like to offer them “my astonishment at sudden rainfall like the whole world weeping” and “the joy I felt while staring in your eyes as you learned epidemiology.”

Campo’s poem makes me think about all that we give to patients with each interaction, each hospitalization, over decades of caring for a patient and their family. Should we reorient the standard prescription for cure? As a patient, do you get reassurance from your medical provider? Comfort? What would be the best prescription?

Writing Prompt: If you could give anything to your patients, what would you give? As a patient, what do you expect to receive from your physician? What gives you comfort? Write for 10 minutes.

You can read more about Rafael Campo and his thoughts on the intersection of poetry and medicine in this interview with Cortney Davis, whose work I’ve featured on a previous Narrative Medicine Monday.

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Free Write Friday: Theater

We’re both reminded of the Vienna Opera House. A decade ago we backpacked through Europe, before Instagram, before kids, before middle age trappings. The filigree, the chandeliers sparkling high above recall the memory for both of us, hippocampi aligned.

Glossy programs stacked high at the entrance relay the actor’s faces, serious and serene. There is no curtain for this show, only one set with minimal props. The music explodes into the air as the house lights dim. The voices, angelic, trumpet as I melt away into the narrative.

Honeycombed notes ring up through the rafters, beats play out on stage as they reverberate throughout the hall. I am in awe of the cast, of the the crew, of the writers. To bring such a story to vivid musicality, to delight the creative and intellectual senses: it is a feat.

The chorus is stunning to the ears but solos make me pause in wonder. To stand on stage with a spotlight aimed at you like a cannon. Absorb, and then deflect, all that energy from the sea of unseen bodies in the darkened audience. To project such a voice, such a singular act into the void of voyeurs. Talent doesn’t seem a sufficient word for the accomplishment.

I suppose it is a gift, to elicit wonder from a crowd of so many. The applause erupts as the finale decrescendos. We step out into normalcy, soundstruck.

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Narrative Medicine Monday: Out of the Straightjacket

In recent years the importance of physician burnout, depression and the high suicide rate among physicians has become more visible. The New York Times article “Taking Care of the Physician” notes that physicians are “approximately twice the relative risk of suicide compared to people in other professions” and aren’t adequately trained to deal with many of the stressors that being a medical provider entail: “how to deal with conflict, how to deal with negotiation, how to deal with the distress of patients”. We learn the science of medicine but don’t receive enough instruction on the skills that can lead to resiliency in an emotionally grueling profession.

Dr. Michael Weinstein bravely shares his own story of severe depression, subsequent treatment and the struggle he experienced as a surgeon who desperately needed help regarding his mental illness. Weinstein’s essay “Out of the Straitjacket” in the New England Journal of Medicine reveals how he became “profoundly depressed, delirious, and hopeless. He’d lost faith in treatment and in reasons to live.” He describes the brutal hours and culture of residency training and how he went on to become a trauma surgeon, shouldering the emotional toll that intense work can take: “We often make decisions in the face of uncertainty that deeply affect our patients’ lives. When things went wrong, I frequently blamed myself.” Weinstein illustrates the failure in the medical culture to address the frequency of burnout and depression in our profession: “I didn’t know how to talk to my coresidents or faculty about medical mistakes and the accompanying self-flagellation.” He “felt trapped in [his] work and worried that [he] would expose [his] shortcomings if [he] sought a leave or disclosed [his] feelings.” How can we change the stigma associated with such a prevalent scourge on our profession, on so many who suffer from mental illness in this world?

Recent studies on physician wellness point to the fact that “it’s more effective to make changes at the level of the institution, rather than just telling the doctors to shape up in the wellness department.” So many physicians “enter medical school deeply committed to the field, they come with the desire to be empathic and compassionate, if we just create a system that nurtures what they come with then we will have less burnout and higher quality care.” How can we best change our institutions, our culture, to promote wellness in those who care for our health?

Writing Prompt: Do you or a colleague suffer from burnout or depression? How has your institution helped address this issue? How has it failed in addressing this issue? As a patient, what are your thoughts about Dr. McClafferty’s statement in the New York Times article: “If you’re my physician, I want you to be in good shape mentally, physically and emotionally, so you can be really successful at helping me”? If you’ve personally suffered from depression, what stigma did you experience? What was most helpful, from individuals or from your workplace, for recovery? Write for 10 minutes.

If you are suffering from depression or burnout, there is help:

For Physicians: AMA’s Steps Forward

For Patients and Physicians: National Suicide Prevention Lifeline

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