The Undying: Pain, vulnerability, mortality, medicine, art, time, dreams, data, exhaustion, cancer, and care by Anne Boyer

Poet and essayist Anne Boyer explores the physical, cultural and social experience of breast cancer in The Undying (Farrar, Straus and Giroux, 2019). The book, part philosophical essay, part cancer memoir, part critique of modern medicine, moves in loose chronological fashion from Boyer’s diagnosis at age 41 with one of the deadliest kinds of breast cancer through her treatment and eventual cure. The book is divided into short sections collected into chapters with interesting titles like “Birth of the Pavilion,” about the center where she receives treatment, and “How the Oracle Held,” which refers to a quote by the Greek orator Aelius Aristides, whose cure relies on dreams sent to him by the god Asclepius, and whose Sacred Tales, is a record of this experience, in effect an early illness narrative.

In addition to Aristides, Boyer also situates herself among other women writers with breast cancer, many of whom died from it. Boyer’s cure relies not on dreams but on modern medicine, or what she calls a “capitalist medical universe in which all bodies must orbit around profit at all times.” She describes the dehumanizing nature of this universe in several ways, such as that diagnosis “takes information from our bodies and rearranges what came from inside of us into a system imposed from far away,” and that cancer detectors have names “made of letters: MRI, CT, PET” which turn a person “made of feelings and flesh into a patient made of light and shadows.”

When writing of her own life, Boyer’s prose evokes the style of author Lydia Davis in its crispness and specificity, its ability to rest on the cusp of poetry, fiction and nonfiction, such as in the passage: “The day I found it, I wrote the story I was always writing, the one about how someone and I had been together again, how we shouldn’t be, and how I hoped we might finally be able to stop being together soon.” Boyer, like Davis, comments about the difficulty of writing, of the inexpressibility of the pain of cancer treatment and the exhaustion that also accompanies it. The trouble finding the right words and putting them together into sentences to express these feelings, when there are none that are adequate, becomes part of the narrative.

Despite this difficulty of expression, there is much that Boyer is clear about on the subject of breast cancer, and much of it angers her: the lack of progress in breast cancer treatment; the profits made from the pink ribbon campaign; the exploitation by big Pharma and corporate medicine of a disease that mainly effects women; the brutality, costs and environmental effects of cancer treatment. She is especially incisive in pointing out the ironies and contradictions of breast cancer treatment, such as when she writes: “People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heartwrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone.”

The Undying leaves the reader with an understanding of issues surrounding breast cancer, and an empathetic sense of Boyer’s struggles and the immense energy and strength it took for her to survive and to write this multi-faceted book.—Priscilla Mainardi

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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, including Pulse - Voices from the Heart of Medicine, the Examined Life Journal, and BioStories. She teaches English Composition at Rutgers in Newark, New Jersey and has served on the editorial board of Intima since 2015.

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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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

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.