books – MARY PAN

Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

October 1, 2018 No Comments

Ellen O’Connell Whittet ponders “The Narrative Messiness of Chronic Illness” in a recent piece in Ploughshares. O’Connell Whittet acknowledges that illness narratives may be challenging to show in scene and that “suffering… doesn’t always have a satisfactory ending.” Yet, she notes that illness memoirs, such as those of Paul Kalanithi, Lucy Grealy, Jean-Dominique Bauby and Porochista Khakpour can be particularly engaging, “turning the story of an ailing body into a work of art.”

Bauby, who suffers from “locked-in syndrome,” tells a grueling story without a tidy ending. O’Connell Whittet grimly concludes one tragedy of his chronic illness narrative is that he “cannot… count on getting well.”

O’Connell Whittet recognizes the importance of defining a diagnosis to Porochista Khakpour in her memoir “Sick.” When Khakpour “laments to her acupuncturist that she is still without a diagnosis, her acupuncturist asks, ‘does it need a name?’ But without a name, Khakpour cannot pinpoint the words she needs to convince us, or herself, of the extent of her suffering.” How important to suffering are the words we use to define illness? Does having a specific diagnosis validate that suffering, to ourselves or to others, in a different way?

O’Connell Whittet recognizes “Khakpour’s refusal to give us order out of illness’s chaos” and eventually determines that “[r]eading accounts of chronic illness allows us to embrace the ambiguity of the body and our experiences within it.”

Writing Prompt: Have you read a chronic illness memoir that turned a “story of an ailing body into a work of art?” Think about a particular part of that book or essay that was most enthralling or enlightening. What did you learn? How did it affect you? Did the structure mimic “illness’s chaos?” Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: The Bright Hour

July 9, 2018 No Comments

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.

Writing

(Re)Published: Dust

June 1, 2018 No Comments

“…where are the moments of joy, of beauty, of grace within this doomsday path humans are on? From where or how do we come up with reasons that make it worthwhile to continue living? To rush out of our beds to greet the day? To smile? To laugh? Well, for me, these moments would occur through the positive interactions made possible by love and respect for other people, creatures and the environment…” – Eileen R. Tabios

Thrilled to announce that my collection of vignettes about my work in Kenya, Dust, will be part of an anthology published by Paloma Press this summer. Dust originally appeared in the Spring 2016 issue of Intima. The Paloma Press editor contacted me to inquire about including it in their upcoming book, Humanity. I’m honored to be among professors, poets, ethnographers and others who have contributed to this important work. More to come when the anthology launches this summer!

Narrative Medicine

Narrative Medicine Monday: Brain on Fire

April 30, 2018 No Comments

Susannah Cahalan’s gripping book Brain on Firerecounts her sudden descent into psychosis and her parents’ frantic search for the cause. (Fair warning that this post contains spoilers to this real-life medical mystery.) Cahalan, a successful young New York City journalist, notes small changes at first: mild numbness, forgetfulness, nagging insecurities.

After Cahalan suffers an overt seizure, she is further evaluated by a top neurologist. He is convinced, after her MRI, exam and blood work all come back normal, that her symptoms are due to alcohol withdrawal, despite no history of heavy alcohol or illicit drug use.

I was struck by the glaring assumptions made by her physician; the details of her narrative were lost on him and the opportunity for detecting her rare diagnosis was missed. Cahalan later in the book asserts the misdiagnosis was a “by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.”

I couldn’t agree more with Cahalan. Our system as it currently stands requires physicians to see more patients in less time, respond to more emails, make more phone calls and review more lab results, often at the end of a nonstop 10 hour day. It’s no wonder details of a patient’s narrative are missed. There’s no space to think deeply about a case, delve into the specific details that may provide a vital clue.

As Cahalan’s mental fitness deteriorates and her paranoia heightens, her mother insists she be admitted to the hospital and her neurologist acquiesces, finding a bed with 24-hour EEG monitoring at New York University Langone Medical Center.

Cahalan doesn’t retain many memories of the month she was hospitalized but does piece them together for the reader, using video obtained while being monitored for seizure activity, hospital notes and the recollections of her family and friends. Through these she paints heartbreaking snapshots of a young vibrant woman’s loss of function and reality.

Cahalan eventually comes under the care of a physician who finds time to listen to her story, every detail from the beginning. His diligence connects her to the proper clinician and results in her correct diagnosis and treatment. Cahalan’s account made me think of Dr. Danielle Ofri’s book What Patients Say, What Doctors Hear. The details of her story were so imperative to discerning, even suspecting, the correct diagnosis. Hers is a cautionary tale that reiterates the need for system reform if we want our doctors to have the time to put their extensive training to use and get it right.

Writing Prompt: After Cahalan recovers, she notes that she has difficulty distinguishing “fact from fiction.” She muses on memories lost and formed and struggles with the fear that she could, at any time, relapse. The experience causes her to reframe the brain as vulnerable. Do you think of the brain as fragile? Why or why not? Do you agree with Cahalan that a primary defect in the medical system is one that forces providers to see so many patients to “maintain their bottom line”? Think of a time this affected you as a patient. If you’re a provider, think of a time a diagnosis was delayed or missed because of systemic pressures resulting in a missed piece of a patient’s narrative. Write for 10 minutes.

Narrative Medicine, Writing

My Kind of People

April 27, 2018 No Comments

I’m currently in Boston at Harvard’s Writing, Publishing, and Social Media for Healthcare Professionals conference. I’ve learned so much from the speakers, agents and editors here but one of the biggest benefits has been the networking opportunities. I’m part of an online group for physician writer mothers (totally my people, I know!) and though I’ve interacted with many of them virtually, it’s been a true pleasure to get to know them in person. What an amazing group of creative women doing incredible work in medicine and writing.

As with so many conferences I’ve attended, I’m inspired to write more, submit more, fine tune my book proposal and my pitch. Most of all, I’m encouraged to finish my books-in-progress. Writing and publishing a book is a marathon endeavor. I am not a creature of patience or a natural extrovert, but this process is teaching me endurance, humility and boldness. If you’re in healthcare and a writer I highly recommend this annual conference for tips, tools and inspiration.

Narrative Medicine

Narrative Medicine Monday: GUTS

April 16, 2018 No Comments

I previously featured author Janet Buttenwie ser’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.

Narrative Medicine

Narrative Medicine Monday: What Patients Say, What Doctors Hear

February 12, 2018 No Comments

Dr. Danielle Ofri’s latest book, What Patients Say, What Doctors Hear is a call to re-examine the way doctors and patients communicate with each other. Through fascinating patient examples and directed research, Ofri illuminates the pitfalls in the current medical system that lead to miscommunication and, ultimately, worse heath outcomes.

I was particularly struck by Ofri’s call for physicians to become better listeners, and thus “co-narrators” of a patient’s story. This term was coined by researcher Janet Bavelas, whose study shows that how physicians listen to a patient’s story in fact contributes to the shaping of that narrative. Ofri asserts that “medicine is still fundamentally a human endeavor,” that one of the most significant ways we can advance health care is by improving one of our most basic tools: communication.

I’m thrilled Dr. Ofri will be speaking to my medical group this week and I’ll be able to meet her in person. Dr. Ofri has written many books and essays important to the world of narrative medicine and is the Editor-in-Chief of the Bellevue Literary Review.

Writing Prompt: One chapter in Ofri’s book outlines a “Chief Listening Officer” who was hired by a hospital to listen to patients and translate their needs back to the hospital so they could improve care. Ofri notes the value of this, that “being listened to so attentively is a remarkably energizing experience. It makes you eager to continue engaging.” Have you ever had an interaction with a medical provider who listened to you and your story in this way? How did it make you feel? Did that experience benefit your health in any way? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: In Shock

November 13, 2017 No Comments

Although I’ve never met her, author and critical care physician Rana Awdish on some level feels familiar. Not only are we both part of a supportive online group of physician-writers, but I just finished reading her wrenching memoir, “In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope.” Awdish’s gripping account of her near-death experience, subsequent hospitalization in her own ICU and revelations about the shortcomings in both support for and education of medical providers in the realm of empathy are illuminating. Her book is infused with challenge and hope and a call to transform the way we train physicians and care for patients.

Awdish is thrust from the world of providing medicine into that of receiving it – a patient under her own colleagues’ care. The contrast of these positions of power and vulnerability are striking and Awdish describes the jarring experience and her own enlightenment as she pivots between these two roles. She shares with the reader her revelations regarding how we provide medical care to those in crisis and inspires us to find a better way.

I was particularly convicted by Awdish’s insight into how medical training encourages physicians to suppress many of our emotions. She traces this ideal back to the father of modern medicine, Sir William Osler, who encouraged “‘aequanimitas.’ Osler regarded this trait as the premier quality of a physician. It represented an imperturbability that was described as manifesting in ‘coolness and presence of mind under all circumstances, calmness amid storm, clearness of judgment in moments of grave peril.'”

Awdish asserts that as physicians “we aren’t trained to see our patients. We are trained to see pathology. We are taught to forage with scalpels and forceps for an elusive diagnosis buried within obfuscating tissues. We excavate alongside our mentors in delicate, deliberate layers, test by test, attempting to unearth disease. The true relationship is forged between the doctor and the disease.” Do you agree with Awdish’s assessment? Why or why not?

If you’re a physician, if you’re a patient: read this book. Discuss it with your colleagues, mull over it with your book club. The questions Awdish raises, the challenges she poses are vital to improving the way we care for each other in our most acute times of need.

Writing Prompt: If you’re a physician, did you learn to develop “aequanimitas” through your training? Did you feel this trait was a requirement, overtly stated or otherwise, to be a “good physician?” Have you yourself ever been a patient feeling, like Awdish, “powerless in a way that is impossible to imagine, from a privileged position of wholeness and well-being?” Awdish lists biting phrases that were directly said to her or that she overheard when she was a patient. Have you experienced similarly painful words from a medical provider? Have you said such words to a patient before? Try writing from both the patient and the medical provider’s perspectives. Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: The Colostomy Diaries

June 26, 2017 No Comments

With humor and candor, Janet Buttenwieser writes in “The Colostomy Diaries” about awaiting her gastrointestinal surgery and the aftermath that leaves her with a colostomy.

I like Buttenwieser’s use of visual details, putting the reader in the room with her, receiving this disappointing news: “‘You’ll have to have your entire rectum and anus removed,’ my surgeon told me over the phone as I sat in my living room, an unread newspaper on the table, cherry blossoms blooming on the tree outside my window.”

Buttenwieser faces difficulty getting the trash can she needs to dispose of her colostomy bags at work. The humiliating barriers she encounters illustrate the ridiculousness of much “beurocratic red tape.” After her surgery, she struggles with how many details to disclose about her sensitive change in physical status, even to friends.

Buttenwieser’s candid anecdotes of everyday challenges post-surgery, such as shopping for clothes and dealing with an emergency malfunction of the colostomy bag while out with her small children, show why her new book Guts, set to be released in 2018 by Vine Leaves Press, is likely to be an entertaining and enlightening read.

Writing Prompt: Think of a time you’ve dealt with “beurocratic red tape” in relation to a medical condition or the medical field. List all of the obstacles you encountered. Can you infuse some humor into the piece, despite the frustrating experience? Write for 10 minutes.

Ramblings

Free Write Friday: Goodnight Moon

December 30, 2016 No Comments

Her sister loved the book, requested it every night. Her brother, not so much. He wouldn’t sit still to listen to any board book; made me worried about his attention and future schooling prospects. The words rush back to me now with this littlest one, memorized at some point years ago with the repetition I endured. Every night: “In the great green room…” I rock the baby and read.

She tries to eat the thick pages, colored with orange-red, yellow, kelly green. She too takes to the silly story of bidding goodnight to the bears, to the mittens, to the bowl full of mush. I discover I now find comfort in the rhythmic cadence, the sentences fall out of my mouth sing-song, lyrical and pleasing.

Maybe that’s why she listens quietly, transported to the simplicity of a warm room, a rocking old rabbit, a nightly ritual of farewell to all the little things that surround us – the comb, the brush, the little toy house, and all the big things too vast for us to comprehend – the stars, the air, nobody, the moon. Goodnight to it all. Goodnight to the immediate and the immense. Maybe this still appeals at a time when everything seems virtual, intangible, rushing by. It’s nice to stop and acknowledge, step into the present space and recognize the greater cosmos above.

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