The Me in Medicine: Reviving the Lost Art of Healing by Patrick Roth, MD

For more information about the book, go to The Me in Medicine: Reviving the Lost Art of Healing.

What follows is a typical visit to the physician for back pain in the United States: A person hurts his or her back and sees a doctor for a complete workup. The clinician, careful not to miss anything, orders an MRI that is subsequently read by a distant radiologist. The report is sent back to the physician who, depending on the results, calls for a follow-up appointment to discuss outcomes. It is likely that the patient is sent to a physical therapist, who provides a therapy regimen based on the radiology imaging and his or her own experience without need for the physician’s specific prescription. While much can and has been written about this typical medical experience, from its inefficiency to its reliance on medicalization and overdiagnosis, it is the fragmentation and lack of contextualization that Dr. Patrick Roth has highlighted in his latest work, The Me in Medicine: Reviving the Lost Art of Healing.

With an increasing reliance on technology and the expansion of artificial intelligence in medicine, Dr. Roth paradoxically calls on physicians to embrace their philosophical faculties. He proposes that narratives, developed through introspection, as well as teaching, mentoring, and writing, are the missing components in our medical system today. The onus is on both patients and physicians to develop individual and, when they come together for a clinical encounter, shared narratives on health, disease, and treatment for better overall care.

For the patient, narratives mean coming to understand how he or she views health and disease. As Jerome Groopman explains in his book, Your Medical Mind, and Dr. Roth highlights in his, people have a spectrum of temperaments with regards to intervention: Some believe strongly in the human body’s regenerative capacity (naturalist) and others believe strongly in science, technology, and medicine (technologist). These proclivities are important for the patient to consider when making medical decisions, but only represent one piece of the puzzle.

Patients must also consider unconscious cognitive biases they have when making their decision for treatment. Common cognitive biases include the availability heuristic, a mental shortcut in which a person makes decisions based on readily available examples, and hyperbolic discounting, in which a person discounts future reward because of the time delay between the decision and the reward. For instance, using the availability heuristic, a patient may be hesitant to undergo a procedure because a friend had a similar procedure that did not end well, whereas using hyperbolic discounting, a patient may prefer a procedure because they perceive the reward as immediate as compared with the longer treatment course of physical therapy. While highlighting the patient’s decision-making heuristic is certainly not easy, it serves to both increase patient autonomy and satisfaction with outcomes.

The complexities of these medical decisions is the space where physicians, equipped with their own medical narratives, help the patient decide what is best. The physician has the ability to provide the context necessary for the patient’s choice. For this reason, it is incumbent on the physician to become a good storyteller. It is not enough to lay out all the options with statistics or paternalistically make the decision. Rather, believes Dr. Roth, the physician most effectively communicates through anecdotes and analogies for understanding disease ontology and treatment decisions.

There are a number of tools at the disposal of physicians and patients to accomplish these lofty, yet achievable goals. With honed doctoring skills, the physician can extract the patient’s motivations and contextualize them to reach a sustainable and satisfactory outcome. Further, the physician can foster self-efficacy and promote a deep education about disease. The patient, on the other hand, possesses knowledge that the physician is not privy to, i.e., the phenomenology of the disease. By joining support groups and forming online communities, patients empower themselves and shape the narrative of their needs for the medical community. Engaging in these exercises shapes not only the character of the patient and physician, but the disease process too, as it reforms a patient’s reality through changes in their thoughts and perceptions.

Medical science and technology naturally lend themselves to a reductive materialism with an approach that parses apart reality into molecular cascades and biotargets on which intervention is possible. Analogously, medicine, as a distinctly human endeavor, naturally lends itself to storytelling—the currency of effective communication and change. As such, Dr. Roth makes a formidable case for narratives as a staple of holistic medical practice. Narratives reform environmental context, which in turn shapes us and our health. With technology and specialization playing an ever-expanding role in our healthcare system, it will remain paramount to scrutinize our narratives and ensure they are always in service of our patients. — John Paul Mikhaiel

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JP Mikhaiel is a medical student at Georgetown University School of Medicine. After earning his BS in neurobiology and philosophy at Georgetown University, he spent two years at the NIH researching brain-related disorders. He is currently a member of the Literature and Medicine track at Georgetown University, and serves on the management board for the coaching program, A Whole New Doctor. His work has been published in Scope, Georgetown’s literary journal. Mikhaiel plans to pursue a career in neurology.

RX: A Graphic Memoir by Rachel Lindsay

Though much is taken, much abides: RX: A Graphic Memoir on corporate America and bipolar disorder

RX: A Graphic Memoir by Vermont-based cartoonist Rachel Lindsay is a memoir borne out of passion, determination, and commitment. Each chapter is short and episodic, and provides a chapter in the story of her unraveling: her time committed to a mental health institution and how she got there. Lindsay writes with a wry dark humor about her struggles to maintain stability with bipolar disease while working in a corporate job.

At nineteen, Lindsay was diagnosed with bipolar disease, a mental illness characterized by episodes of mania and depression. Staying sane becomes her primary objective and the medication her psychiatrist prescribes her helps keep her sane. Lindsay describes this rhythm of her sanity in three panels like a mantra: “Chug. Crush. Toss.”

Rachel Lindsay

Lindsay, whose comic strip, “Rachel Lives Here Now,” about her life as a New York transplant in Vermont, appears weekly in Vermont’s statewide alternative newspaper, Seven Days , has created a memoir that serves as a timely narrative for what many are experiencing in the United States. For the author, as with other Americans with pre-existing conditions, her corporate job is a means to an end, providing her with health insurance and prescription medication coverage. Despite feeling unhappy at her work, she continues at her job. She gets a promotion, which means she gets thrust into the corporate pharmaceutical world and works on a marketing campaign for an antidepressant, Lindsay continues to feel even more trapped.

As a graphic memoir, Lindsay’s style is frenzied, a visual staccato beat that moves her narrative along. The lack of gutter space makes the narrative feel overwhelming at times, yet each panel is concise and detailed. Often metaphorical, her chapters begin with a reflexive lens into the story. In one, she appears in a straitjacket. In another, she’s an “urban badass” ripping her way out of wall graffiti to symbolically step on the dead wind-up toy of her in the first chapter, sunglasses on, smoking, and giving the finger.

RX is also a book about a millennial, a millennial with a mental health condition. Trying to find balance between where you are and where you feel you ought to be, I identify well with that feeling. At a party in Brooklyn in 2010, a partygoer says to Lindsay, “Screw your corporate job and really commit yourself to your art. You’re really talented!!” And throughout her memoir, she struggles to find a creative outlet while maintaining her corporate veneer. Quite literally a wolf in one chapter, dressed in sheep’s clothing, she shows us the precariousness of just passing. And its toll on her mental health.

In her interactions with the system, whether this is the healthcare system, the corporate capitalist system, or the criminal justice system, the graphic writer echoes the frustration and hopelessness of feeling trapped. This shapes her story. The day after she is committed, Lindsay sits alone in a cell. “It’s easier to be angry than sad,” she writes. “Despite the psychiatrist I hadn’t stopped seeing, despite the pills I stopped taking, I sat tagged and overmedicated in a new prison – …waiting to be corrected to fit someone else’s definition of sanity.”

The memoir ends with recognition of the system she is beholden to—though much is taken, much abides. She writes with insight from her struggles with sanity and insanity and the work it has taken to get her to today. Lindsay dedicates the book to Burlington, Vermont, where she currently resides. Though her ending feels abrupt—How did she get where she is now? What happened after moving back in with her parents? What headspace is she in now? —Lindsay writes with calmness, reflection, and grace. This book is a testament of her voice.—Jane Zhao

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Jane Zhao

Jane Zhao is a lover of comics because when she has no brain or patience for words, she can escape into image. She is a graduate of the Narrative Medicine program at Columbia University and studied neuroscience at McGill University. She currently works in research in Canada. Talk to her about poetry, Donna Haraway, health policy, and muscle pain.

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The Moon Prince and the Sea by Daniela Rose Anderson

The world of pediatric oncology is one of extremes. The diseases strike unexpectedly, cruelly, and without discernible cause in the midst of childhood, a time of remarkable growth and innocence. While these diseases were once a death sentence, the improvements in survival rates (in places where the latest treatments are available) have been dramatic: five-year survival rates of near 90% compared to 10% just forty years ago. Even so, the burdens of disease and treatments are high, and of course, death still comes too often. Among the tribulations of the pediatric cancers, beauty can be found in the lives and loves of the children and families. One aspect of beauty is the compassionate connections that can develop between the children affected. In The Moon Prince and the Sea, Dr. Daniela Anderson captures this beauty in both words and pictures as she tells a fantasy story based on actual patients. 

Sumit is a boy in rural India who travels for days to get to the hospital for treatments for an undefined serious illness. As he physically recovers, he connects with other children in the hospital. He also learns of a girl named Marina in a distant country (the US) who has cancer as evidenced by her bald head and connection to an IV pole. He is touched by her story and dreams of her. He paints her a picture with two moons—one on earth and one in the sky—and sends the picture and a brief letter of encouragement to Marina. Far away, she receives his gifts and feels both connection and comfort.

After he returns to his country home from the city hospital, Sumit is not able to return for more treatments because of the family’s lack of resources. A caring nurse travels to Sumit’s home to find him with hopes of continuing his treatment. The neighbor children, however, inform her that Sumit is now “in God’s home.” But in Anderson’s imagining, the story has not ended and Sumit’s connection to Marina continues. 

Back in her hospital, Marina waits until family and friends are ready, and then she closes her eyes and takes her last breath. In the next place, she and Sumit are united, healed, unafraid, and bound together. 

Anderson’s watercolor illustrations are rich and vibrant, and they evoke feelings of comfort and compassion. Sumit has a yellow silk cape that both connects him to the moon and presents him with a certain regal dignity and resilience. His cape and bearing mark him as “the moon prince,” while Marina’s name means “the sea,” and thus the book’s title. While Marina is surrounded by family and the best of medical care and resources, there is a sense of vulnerability as her disease puts her beyond all efforts of cure. Understandably frightened, she has a quiet strength as she waits to take her last breath until her family is ready. Hand in hand, Sumit and Marina then travel on together, connected to the mystery of the unknown while rooted in the known, which is love. 

Children with cancer and other serious diseases are, of course, like the rest of us—not always saints, not always wise and inspirational. Yet there is something striking about the experience of a life-threatening illness at a time of life wired for dramatically persistent growth. Such children often have and show stubborn resilience and focus their time and attentions more on the prospects of living rather than dying. And if death comes, it is not uncommon that they demonstrate deep compassion for their family and their fellow patients—others who suffer. Anderson captures these aspects of children and illness in the story, which treats death as both ending and beginning. There is real sadness, of course, in the story because it is faithful to the truths of terminal childhood illness. Nevertheless, the strongest feelings and impressions are connection, compassion, and transcendence, and these are other real truths at the intersection of the worlds of childhood and illness. — Greg Adams

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Greg Adams, LCSW, ACSW, FT is Program Coordinator for the Center for Good Mourning and Staff Bereavement Support at Arkansas Children’s Hospital in Little Rock, Arkansas. His work of 27 years at Arkansas Children’s Hospital includes time in pediatric oncology, pediatric palliative care, and grief support for staff and community adults, adolescents and children. He also writes and edits a grief/loss electronic newsletter, The Mourning News. Other current related experiences include teaching an annual grief/loss elective class in the University of Arkansas-Little Rock Graduate School of Social Work and chairing the Credentialing Council for the Association of Death Education and Counseling.

Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing by Robert L. Klitzman, MD

Public policies are often determined by three main components: ethics, science, and social considerations.  In the 21st century, among calls for ‘personalized medicine,’ few topics raise as much concern as genes, genetic diseases and genetic interventions. Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, a book by psychiatrist and ethicist Robert L. Klitzman, MD., published by Oxford University Press, is timely, providing a valuable insight into the social considerations surrounding genomic medicine.

Dr. Klitzman, who is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University, interviewed 64 individuals who were sick, or had an increased risk of being sick, with one of several genetic diseases: Huntington, breast and ovarian cancer, and Alpha-1 antitrypsin deficiency (AAT). He provides an in-depth summary and analysis of the responses, opening a window to the interviewees’ lives, fears and dreams. In particular, the book reports their experiences in the familial context, their understanding of the disease and the science involved, their decision-making processes, and their views regarding relevant social policies. Dr. Klitzman, who is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works, provides a compelling and entertaining narrative that brings to life the struggles, realizations and often painful process involved in illness.

The reader learns a great deal from the interviews.

First, the interviewees are highly affected—mostly in negative ways—by these diseases. Bonnie, for example, who is at an increased risk of carrying a breast cancer gene, reports being terrified of the prospect of being tested positive. Such result, she claims, would hurt her more than help her, and would make her question her meaning in life (p.45). Others, such as Diane who had to undergo mastectomy, may feel depressed and as if they lost hope and control over their lives because of these genetic diseases (p.154).

Second, coping with these diseases in the medical context raises important ethical and professional issues. For example, as Dr. Klitzman claims, clinicians may be overeager to test for these diseases while ignoring the psychological and ethical considerations. Thus, Betty, suffering from AAT, was negatively surprised that a pediatrician tested her child for AAT without consulting with her first (p.55). Similarly, Laura, a graphic designer, with breast cancer mutation, reminds us that ‘bad’ genes come along with the patient, and that clinicians should thus acknowledge and care for the patient rather than the disease. (p. 37)

As Dr. Klitzman admits, the data provided in the book may not be wholly generalizable, as it pertains to a small set of people in a specific location (p.19). However, the book draws a general picture of the personal, social and institutional struggles faced by those who are, or may be, affected by genetic diseases, some of which being incurable. The insights will be of great interest to clinicians, bioethicists, medical humanists, policymakers, and the general public. Says Kay Redfield Jamison, author of An Unquiet Mind and more recently Robert Lowell, Setting the River On Fire: A Study of Genius, Mania and Character: “Dr. Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... an important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." As do the editors of Intima: A Journal of Narrative Medicine.—Zohar Lederman

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Zohar Lederman

Zohar Lederman is a medical resident in emergency medicine at Assuta Ashdod hospital and a bioethics PhD candidate at the National University of Singapore. His PhD focuses on the ethics of One Health and culling as a public health measure. His other areas of interest include: end of life care, family ethics, the dual loyalty problem, ethics of infectious diseases and public health ethics. Lederman, who served on the editorial board of Intima: A Journal of Narrative Medicine, is a contributor.

Gather the Night by Katherine DiBella Seluja

“A schizophrenic is no longer a schizophrenic…when he feels understood by someone else” reads the epigraph on this quietly powerful book of poetry by pediatric nurse practitioner Katherine DiBella Seluja. The words come from Swiss psychiatrist and psychoanalyst Carl G. Jung and introduce the reader to the emotional heart of the book, which movingly reflects the facets of the writer’s life, as a clinician, poet and understanding sister to a brother named Lou who lived with schizophrenia and substance addiction.

The slim volume, published by the University of New Mexico Press, is divided into four sections: Time Travel; Free Concert; Sing to Me; and Stars Speak. Each section starts with a short free-form prose poem in an imagined voice, perhaps that of Lou’s, drawing a vivid visual tableau. In terms of overall structure, the book has a narrative arc that spans from childhood through adulthood, from beginnings to endings. Some poems are tales of families and communities dealing with mental illness in everyday life and in startling moments of illness and death. Throughout, Seluja, whose poem about Parkinson’s, “Not Every Homemade Thing,” appeared in our Spring 2017 issue, brings her vivid language, compassionate affection, deeply-felt visions and clinical observations into poems that transport readers close to the tragedies and the moments of inspiration, as well as the experience of grief and acceptance, as she receives and perceives them.

One of the most original and skillful aspects of this collection is that we hear more than the poet’s voice on these pages: Seluja has said that Gather the Night includes “prose poems and persona poems that express the voice of psychosis, the voice of addiction and Lou’s imagined voice.” While each poem stands solidly on its own, reading from beginning to end increases the intensity of the connection with the people, places and things in it. In Time Travel, for instance, we see neighborhoods and neighbors, some sly and seductive (Reynaldo in “Chiquita”) and some down-to-earth and welcoming (Scottie, the grocer and Mrs. Gratzel, the baker’s wife in “Local Grown.”). We see the pummeling a sister gets from a brother in the name of karate practice in “Kata,” or the way a mother delivers bad news in “Storm Hymn”:

One thin crack in the plastic sign

on the locked ward door

Winds its way through

Authorized Personnel Only

like a branch of the Hackensack River

where we used to play.

Dried mud thick on our shoes

split in so many places,

our mother’s face when she said,

We just admitted your brother;

he told us his crystals were melting.

Waiting for the orderly to turn his key

I turn back to our winter childhood refuge

under the cellar stairs.

We were base camp

guardians of snow

charted drift and temperature

graphed hope for Sunday night storms.

Now gray clouds

and Thorazine doses increase,

he wanders the blizzard alone

no guide rope tied to the door,

unique as each stellar dendrite

no two of him alike.

Along with the concrete, graceful imagery of the poems, we also receive information about illness and madness—and how the clinical world handles it, especially in the second section, Free Concert. We hear from a doctor in “The Psychiatrist Said” (“It’s [the schizophrenia] all a matter of proteins/We’ll have it cracked in three to four years”), while we glimpse inside a medical facility in “Spinning with Thorazine.” We witness Seluja’s ambitious way of contemplating and confronting the big-picture issues of care in poems such as the ironic “The History of Healing” (“It began as a huddle of knowers, passed through oral tradition/those who could ‘heal’ and those who at least attempted”). The chilling “When Your Son is Diagnosed in the 1960s” notes an earlier era’s method of treatment and causes (“His psychosis is tied to your mothering/and it’s time to cut the chord, be careful of the sting”).

Katherine DiBella Seluja

Throughout it all, we get to know her brother Lou, a musician whose mandolin is elegantly described in “She Wore Opals at Her Neck” (“He fell in love with the mahogany curve/her hip and polish/the rosewood waist/and the way her neck fit to his palm”). Seluja expresses not only the affection and love she feels for him but also the wounds and wreckage that comes from a closeness with someone experiencing schizophrenia. There’s a complex layer of emotions at work here, that spans from caring and fearful to raging and raw, especially in the short “Telephone, 4 a.m.” where the resignation and anger in lines like “What if there were a box to keep him in/somewhere to store him away/to bring out with rainy weather/Then you’d have time to listen, unravel every line” comes through. In many of the poems in the Sing to Me third section, we intensely feel the frustration and fear for a loved one in peril.

In the final section, Stars Speak, poems turn elegiac, mourning Lou’s death. Again, the poet displays a skillfulness is accessing and expressing the complexity of emotions that accompany the death of a sibling. In “News of a Brother’s Death,” we feel the matter-of-fact reality of it (“Don’t kid yourself/it’s nothing like a movie”) while “Wanderlust” explores the way that Lou lives on in the tiny details of a life (“Find me/in the weave of my brother’s shirt/in the tread of mud on the floor”). Seluja mines sadness and strength in startlingly beautiful poems, “Here Among the Ruins” and “If You Need a Wall.” And it feels as if she’s composing a way to live in the world when there’s a significant loss in “Do Our Ancestors Listen When Called” that ends:

My heart is occupied with the ones I’ve lost, each with its own

celestial sphere, their pulse echoes the meridian.

I keep rearranging you like a favorite satellite, dragging you

into good orbit, your solar panels deployed to the stars.

Gather the Night ambitiously takes on the task of speaking about loss, addiction, madness, grief and love, bringing us into its intimate confrontations. We emerge from reading it with a deeper understanding of all of the above, a sense of wonder at the way we get through the harder, harsher aspects of our lives, and an appreciation for poets and nurses like Seluja who guide the way.—Donna Bulseco

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Donna Bulseco, MA, MS, is a graduate of the Narrative Medicine program at Columbia University. After getting her BA at UCLA in creative writing and American poetry, the L.A. native studied English literature at Brown University for a Master's degree, then moved to New York City. She has been an editor and journalist for the past 25 years at publications such as the Wall Street Journal, Women's Wear Daily, W, Self, and InStyle, and has written articles for Health, More and the New York Times. She is Managing Editor of Intima: A Journal of Narrative Medicine.

Narrative in Social Work Practice: The Power and Possibility of Story. Edited by Ann Burack-Weiss, Lynn Sara Lawrence and Lynne Bamat-Mijangos. Foreword by Rita Charon

Narrative in Social Work Practice: The Power and Possibility of Story by Ann Burack-Weiss, Lynn Sara Lawrence and Lynne Bamat Mijangos.

She is 7. She is small…yet she fills the entire room…this child…has been raped... But she is still sturdy, she still smiles…this child of 7 is a giant, a superhero." —Social worker Kristen Slesar, writing about a young client

 “My mother and I are on our way to the store. A gnome, dressed in curly-toed shoes, striped stockings, and pointy cap, waits on the sidewalk. He tries to pinch me. My mother cannot see the gnome. I try to hide, wrapping myself in her skirt…” —Social worker Lynne Mijangos, describing a dream she had                   

In a wonderful  new book, Narrative in Social Work Practice: The Power and Possibility of Story (Columbia University Press, 2017), editors Ann Burack-Weiss, Lynn Sara Lawrence and Lynne Bamat Mijangos have gathered intimate, first-person accounts by social workers who have found creative ways to integrate narrative techniques into their work.

In some chapters, the social workers describe how they have developed and used narrative interventions with a wide range of individuals, families, and groups facing a variety of life challenges. In others, they share how they have turned their narrative skills inward and used them to deepen their self-understanding. In each instance, they use the tools of narrative training—close reading, attentive listening, reflective writing, and bearing witness to suffering —to help themselves and others confront and overcome external and internal barriers.

In one chapter, social worker Lauren Taylor uses psychotherapy and oral history to help clients find deeper meaning in their lives. Taylor describes her work with Marvlous, an African American woman who is depressed and in pain. As they talk, Taylor realizes that this sharp 95-year-old is a living historical archive. Working together, Taylor helps Marvlous, who at first thinks she has nothing much to say, recount and preserve the story she and her ancestors played in African American history. Taylor also describes her work with Joe, a 68-year-old man who is contemplating suicide. In the course of their work, Joe, who always dreamed of becoming an actor, writes and performs in a triumphant one-man show about his life.

Demonstrating the cross-border potential of narrative medicine, Benaifer Bhada talks about the narrative work she did with HIV-infected truck drivers in Kenya, and how participation in the group helped the men overcome feelings of shame and isolation, enabling them to seek appropriate treatment.

What do these stories have in common? In eloquent fashion, they all demonstrate how sharing our stories can help us break out of isolation and find our voices and our communities—at every stage of life —even as our bodies and cognitive abilities begin to deteriorate. Working with adults with dementia, Mary Hume uses poetry, co-constructed by the group, to express themselves, affirm their own value and continue to participate in their community:

“I like the smell of lilacs in May time;

 For me that’s the best playtime

I like to bake crullers that are bestsellers

I like to throw confetti when they’re serving spaghetti…”

—Social worker Mary Hume, co-creating poetry with clients in dementia care

Some readers will want to dip in and out of these stories, which will give them a sense of the benefits of narrative practice in social work. But once one starts reading the stories, it's hard to skip around and instead read straight through. Each story is rich in its unique details and emotional truthfulness, making the book hard to put down.—Nelly Edmondson

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NELLY EDMONDSON is a graduate of the Narrative Medicine Master's program at Columbia University. She also is an award-winning editor and writer with extensive experience covering medical topics for print and online outlets. In addition to serving as a staff editor at publications such as Weight Watchers Magazine and Ladies’ Home Journal, she has written articles for the The New York Times, Parents, MAMM Magazine, as well as medical-school websites and publications such as Einstein Magazine and The Chironian. http://www.nellyedmondson.com

Barriers and Belongings: Personal Narratives of Disabilities, Edited by Michelle Jarman, Leila Monaghan, and Alison Quaggin Harkin

An Iraq veteran fighting the “quiet conflict” of PTSD, a woman with memory loss who hides her disability as well as her misery, a man whose traumatic brain injury helps him make sense ofhis brother’s disability.  These are a few of the many voices we learn from in Barriers and Belongings.

At first glance, the book is a disabilities studies textbook with an introduction and chapter openings that provide background on social and cultural approaches to disability, as well as useful definitions.  But Barriers and Belongings is much more than a textbook:  it’s an eye-opening collection of lives, told with honesty and moving candor.  The narratives, which are organized into sections around themes such as communication, family and relationships, are engaging and short, allowing room for many different points of view.  Most are written from the perspective of early adulthood, reflecting back on growing up, which gives them an appealing coming-of-age quality.  The writers lead us up to the moment their conception of their disability changes in some way.  The ways are as varied as the disabilities themselves, which range from acquired conditions such as PTSD and chronic pain, to congenital conditions such as cerebral palsy and Down Syndrome, to mental health and cognitive conditions.  Because of these many viewpoints, one writer identifies the need for “people with diverse disabilities [to] recognize our common struggle” in order for the disability movement to reach its “full potential to change society.”

For the book is as much about the larger society as it is about the individual stories.  Most of the writers see disability not as a problem to be solved but as an integral part of themselves, and want to reframe disability from a nonsocial and nonmedical perspective.  As one writer puts it, “I wonder how the world would be if everyone realized that normal didn’t exist, and that trying to achieve normalcy was futile.  What if disability didn’t always need a cure?  What if everyone equated disability with difference, not deficiency?”  Or as another writes:  “Sometimes, abnormal is normal.”

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PRISCILLA MAINARDI, a registered nurse, attended the University of Pennsylvania and earned her MFA degree in creative writing from Rutgers University.  Her work appears in numerous journals, most recently The Examined Life Journal and Prick of the Spindle.  She teaches English Composition at Rutgers in Newark, New Jersey.  Her short story “Pretending Not to Know” appeared in the Spring 2014 Intima.

The Skin Above My Knee: A Memoir by Marcia Butler

When was the last time you really, truly listened to music? In the rush-rush of daily life, it's not always easy to sit, close your eyes and listen—deeply, emotionally, exclusively—to, say, a Mendelssohn Violin Concerto or "Naima" by John Coltrane or even Adele's achingly nostalgic love song, "Hello." Instead, we OM at a meditation class, zone out watching "The Crown" or "Black Mirror," or catch up on the latest Intima Field Notes (sorry, a bit of shameless self promotion) to de-stress from our chaotic lives. We often forget the restorative, soul-enhancing powers of music, the way we can lose ourselves and discover other worlds and emotional depths when we focus and attentively listen.

During her 25-year musical career, Marcia Butler performed as principal oboist and soloist on renowned New York and international stages, with many musicians and orchestras, includin pianist Andre Watts, composer and pianist Keith Jarrett, and soprano Dawn Upshaw.

Those feelings came rushing back to me as I read a new memoir by Marcia Butler, entitled The Skin Above My Knee. Butler, who published a story called "Cancer Diva," in the Spring 2015 Intima, was a classical oboist in New York City for 25 years. She has written an extraordinary and moving account of her life that goes beyond stories about her difficult childhood, icy and aloof mother, the many abusive men in her life and her struggles with addiction. Yes, we get all of those painful stories, fleshed out and delivered with Butler's sensitive, yet sardonic wit, but we also are party to her love and mastery of music.

Oh, glorious music! Every other chapter or so, Butler brings her musical world to life in palpable detail, pulsing with all of its highs, lows and endless hours of practice. We see her pride and excitement about being accepted to a music conservatory on full scholarship only to be told to play nothing but long tones "for months, possibly till the end of the semester." We watch, as she learns the "hell" of crafting the perfect reed from scratch only to ruin it and start all over again. We accompany her through the nerve-wracking challenges and transcendental joys of performing. 

Consider this short excerpt where she describes accepting an invitation from composer Elliott Carter to be the first American to perform his oboe concerto:

Upon receiving the score, you can't play the piece or even do a cursory read-through. This is an understatement. You can't play a single bar at tempo or, in must cases, even three consecutive notes. You have to figure out how to cut into this massive behemoth. First learn the notes. Forget about making music at this point. Just learn the damn notes. Your practice sessions consist of setting the metronome at an unspeakably slow tempo and then playing one bar over and over until you can go one notch faster.....

...You remember the exact passage when the cogs lock together. It is not even the hardest section, technically, but what you begin to hear is music. There's music in there, and it is actually you making that music. Your stomach rolls over, a love swoon. The physical sensation is visceral and distinct. It is a very private knowing: a merging with something divine, precious, and rare. As a musician, you covet those moments. You live and play for them. It is a truly deep connection with the composer, as if you channel his inner life. A tender synergy is present, and you fear that to even speak about it will dissipate it immediately. Don't talk. Just be aware.

We're fortunate that Butler has decided to talk about her intense love affair with music and share her most intimate moments with us in this entertaining memoir. While the author touches upon her cancer diagnosis briefly, this isn't an illness narrative in any way, shape or form. Yet, she brings the idea of attentiveness and deep focus to light through her musical calling and finds a way to counteract trauma and pain in the expression of her art. By opening up the conversation about difficult moments and learning the discipline to recognize, express and find meaning in them, Butler also reminds us to listen, deeply, to the music of the world around us, as dissonant, lilting, strident or soothing it might be. Find the music that personally delivers meaning to you, be it a concerto or Ed Sheeran, "Shape of You." For her, it was always Norwegian opera singer Kirsten Flagstad performing Isolde's final aria, the "Liebestod," in Richard Wagner's magnificent Tristan and Isolde.—Donna Bulseco

If you would like to hear Marcia Butler in concert, the author provided a link to work where she performed. Click on the title of a piece for oboe and piano, entitled "Fancy Footwork" from the album, "On the Tip of My Tongue" by composer Eric Moe.

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DONNA BULSECO, M.A., M.S., is a graduate of the Narrative Medicine program at Columbia University. After getting her B.A. at UCLA in creative writing and American poetry, the L.A. native studied English literature at Brown University for a Master's degree, then moved to New York City. She has been an editor and journalist for the past 25 years at publications such as the Wall Street Journal, Women's Wear Daily, W, Self, and InStyle, and has written articles for Health, More and the New York Times. She is Managing Editor of Intima: A Journal of Narrative Medicine, as well as a teaching associate at the School of Professional Studies at Columbia University.

When Breath Becomes Air

It is often startling and unsettling to read the work of a writer who has passed.  In some ways, this is the norm—it’s rare that students in school read books by writers still alive.  The distinction, however, is this: those writers—Shakespeare, Joyce, Woolf, even Salinger, who only passed a few years ago—aren’t writing about their descent into death as they lived it.  Paul Kalinthi’s When Breath Becomes Air details the last year of his life as he, a neurosurgeon, fights metastatic lung cancer.  It sounds depressing in summary, though the book lacks any trace of self-pity or of anger.  It is written with intelligence and with honesty, a product of reflection and insight.  We can trust him, the reader knows, to present his story to us the same way we could have trusted him to operate on our brains.  His humanity is tangible. 

The most striking observation about the book is its voice.  Despite his death last year, Kalinthi’s voice is rich and alive on the page, and he speaks not to doctors or to cancer patients but to anyone who is interested in the question of what it means to live and to die with humanity.  Kalinthi spent his life devoted to this question, always torn between a career in the humanities and one in medicine.  He ultimately pursued both, first a Master’s degree in literature and then medical school for neurosurgery.  “The call to protect life—and not merely life but another’s identity; it is perhaps not too much to say another’s soul—was obvious in its sacredness,” he explains about neurosurgery. “Before operating on a patient’s brain, I realized, I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end. The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what make medicine holy and wholly impossible: in taking up another’s cross, one must sometimes get crushed by the weight.”

In the book’s introduction, Abraham Verghese makes note of Kalinthi’s “prophet’s beard,” an idea his wife Lucy later clarifies as an “I didn’t have time to shave” beard—but to readers of his book, it’s clear that Kalinthi was, in fact, a prophet in many ways.  His observation that “life isn’t about avoiding suffering,” which he acknowledges in his and Lucy’s decision to have a child despite his prognosis, demonstrates the ways he understands the world beyond his own life. Experiencing illness as a doctor—and a sensitive, empathetic one—adds a moral gravity to his words.

The Kalinthi family: Paul, Lucy, and baby Cady

Paul Kalinthi passed away surrounded by his family when his daughter Cady was eight months old.  “When you come to one of the many moments in life where you must give an account of yourself,” he tells his daughter in the final paragraph, “provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied.  In this time, right now, that is an enormous thing.”  His life was cut too short, though his extraordinary accomplishments in his thirty-seven years might make you reevaluate how you’ve spent your time, what you’ve taken for granted, and how to leave an imprint as large as his.  —Holly Schechter

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HOLLY SCHECHTER teaches English and Writing at Stuyvesant High School in Manhattan. She graduated from McGill University with a degree in English Literature, and holds an MA from Teachers College, Columbia University. She is active at Mount Sinai Hospital in New York City, where she received excellent care as a patient, and in turn serves on the Friends of Mount Sinai Board and fundraises for spine research. Her piece "Genealogy" appeared in the Fall 2014 Intima.

Scars: An Anthology. Edited by Erin Wood

For more on this book, go to www.etaliapress.com

For some two years, Erin Wood spent her time examining scars. As careful and probing as a surgeon, the writer and editor of Scars: An Anthology examined a wealth of poems, photographs, and prose about the subject and handled each person's revealing narrative with the emerging understanding that "there is a great deal about our scars that extends far beyond the individual body and the self."

Wood, whose essay "We Scar, We Heal, We Rise" was a Notable Essay in The Best American Essays 2013 (it appears in this volume) reflects on the ways scars may "belong to different versions of ourselves: our past selves...or new selves, selves in transition, or even selves we wish to regard more fully."

Stories that address these issues make the collection a rich reading experience that at times can be intense and painful, but also enlightening and entertaining. There is a lot of humor alongside the humanity that's revealed, as well as insight into the clinical encounter, most notably in Sayantani DasGupta's "'Tell Me About Your Scar': Narrative Medicine and The Scars of Intelligibility." One of the most moving and insightful pieces in the collection is "The Women's Table," an interview with Andrea Zekis, who speaks frankly about her "gender confirmation surgery" and the scars, emotional and physical, created but also taken away during her transition. A photo essay by New York photographer David Jay, who began The SCAR Project, is a stunning look at those who show their scars frankly and with pride. And while many of the pieces in this book are personal essays and memoirs, it is the poetry— like Samantha Plakun's "Written In Stitches" and Philip Martin's "The Pry Bar"—that draws the reader in close to examine the beauty and personal history revealed in the body's terrain.—Donna Bulseco

On December 10,2015, Columbia University's Seminar on Narrative, Health and Social Justice presented "Scars as Art, Text and Experience" at the Faculty House, featuring Editor Erin Wood and contributors Kelli Dunham, Lorrie Fredette, Samantha Plakun, and Heidi Andrea Restrepo Rhodes. Marsha Hurst, who is a lecturer in Narrative Medicine at Columbia University and co-chairs the University Seminar on "Narrative, Health, and Social Justice" introduced the panel. Hurst is co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies. Listen to the event in its entirety below: