An accident sets off the events of Sara Baker’s novel The Timekeeper’s Son (Deeds Publishing, 2016), landing one character in the hospital. Ms. Baker, whose story “The Sun in Cannes“ appeared in the Spring 2015 Intima, weaves together the voices of numerous characters whose lives become entwined by the accident.
Read moreBarriers 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.”
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.
A Short Life by Jim Slotnick
No work better embraces narrative medicine than A Short Life, by Jim Slotnick. This prescient memoir, written in 1983 and published in 2014, narrates a young medical student’s terminal illness from pre-diagnosis to his final days. It is a song of life’s joys, deadly shortcuts in medical practice, the necessity of listening and paying attention, and the essential value of compassion.
Read moreThe 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.
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.
Avalanche
Julia Leigh’s Avalanche, a story of the writer’s devastating desire and struggle to conceive a child, is a slender memoir. However, the pages are richly packed with the details of her private hell as she spirals through cycle after cycle of in vitro fertilization. The challenge of reading this book, though, is a worthwhile one. It is difficult to witness someone’s pain so intensely, but it is also an honor.
What Leigh exposes in her writing isn’t just the inner workings of our infertility zeitgeist, with all of its statistics, though the numbers are bleaker than the media would generally have us believe. She makes tangible the emotional and psychological turmoil that those numbers create in patients who will cling to any sign of hope. “In the last year, what percentage of women my age at the clinic had taken home a baby using their own eggs?” she asks. “[The doctor’s] answer: 2.8 percent for 44-year-olds, 6.6 percent for 43-year-olds…What to do? What to do? Where does this stop?”
The heart of this book beats with raw honesty. Leigh’s acknowledgement, for instance, of putting her career before her desire to start a family: “I also said—it pains me now—that I needed to safeguard ‘my hard-won creative life.’ Why was I so quick to add any sort of caveat? Why did I set the two ways of being—motherhood, writing—at odds?” And of course, the sad, perhaps humiliating reckoning with the biological reality of her age: “When I reported back to my sister she frowned and said… ‘I hate to say it but the main thing is the age of your eggs so any extra hope is marginal.’”
Avalanche is not a traditional a memoir filled with scenes and stories. Leigh isn’t concerned with writing workshop rhetoric here, which means less time spent on the areas where most writers are told to focus: developing characters and settings and showing not telling. She’s concerned with telling her truth. Her story is internal, psychological. Of course there are external factors—her marriage and divorce, her career—but ultimately, the story moves away from these forces and becomes an all-consuming individual quest. Less a book, more an extended essay of sorts, Avalanche isn’t divided into chapters. It reads like a wistful film, perhaps a result of Leigh’s experience in script-writing, and it feels intentionally written to be read and digested in one sitting.
The prevalence of fertility treatments in our world deems this book timely, but at its core, this is not a story of fad medical treatments or the contemporary female plight. “What I try to hold onto,” she writes at the end of her journey, “is a commitment to love widely and intensely. Tenderly. In ways I would not have previously expected…After the avalanche, the bare face of the mountain. Under the sun and the moon.” Leigh’s story, while deeply personal and specific, strikes a far more universal chord: the desire to love, and to be loved, unconditionally; to find beauty and satisfaction in unexpected places; and to gracefully accept our individual narratives, even if they don’t play out the way we hoped or imagined them. —Holly Schechter
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.
The Heart
The Heart by French writer Maylis De Kerangal is exactly what it says it is: a dive into the multitude of lives that surround an organ donation. Unflinching and stark, this novel takes its readers into every crevice of the process of donation. We travel down each vein, into the inner depths of the many lives that will be changed by this experience.
De Kerangal’s novel is clear in its support of organ donation, but simultaneously opposes our culture’s narrative of this procedure. Rather than showing the miracle of a donation, the readers are first shown the torturous decision-making process. We see the protagonist, Simon, in his brutal accident. We are shown another character, Thomas Remige, as he confronts his role as a clinician—he must be compassionate, yet objective, and convince the family without any form of persuasion. Time bends as we follow Thomas’s storyline. We are shown the exacting time limitations for the immediate needs of others, but also the necessary, deliberate slowing of time for the grieving family. While the benefits and decisions about the organ’s next move are instantaneous, the family’s time almost stops completely. Thomas is acutely aware of the memories that will be associated with the decision and the months and years that will impact the family’s choices, and he has no intention of making the family feel coerced into donating Simon’s organs through a rushed conversation.
In this way, De Kerangal’s depiction of the family perspective is brutally honest and open in every form. However, the family’s journey to making this crucial decision about donation respectfully encompasses their grief and their need for a simultaneous closure and continuation of life. We see the way their family is sewn together through the wreckage of tragedy. Not only does De Kerangal describe the emotional effects of organ donation, but she also brings a level of clarity to the physical act of harvesting organs.
Maylis De Kerangal
That kind of examination allows the reader to shift from one space to another almost seamlessly, from the slow, muddled process of a family grieving and Thomas’s instantaneous and urgent messaging to the factual, the sterile, and the professional removal process. Combining these opposing attitudes and realities about organ donation immerses the reader into this messy and irreverent space. She has captured the essence of humanity and of the continuation of life within the death of this young man.
In the end, the author moves the reader poetically and seamlessly into a new space—one of sacred mourning that once again underscores the sacrifice. The author completely turns the ancient practice of heart-burial on its head, revealing a modernized perspective that simultaneously saves lives and gives the highest respect to the dead. Rather than keeping the heart separately interred in a place of worship, the heart is now "interred" in the most sacred space it can be given: another person's body. The heart’s consciousness and soul are symbolically kept safe and "live on" and in this way, De Kerangal takes a practice that may seem unnatural to some and puts it in line with revered practices, reserved only for kings and poets.
The Heart is a perspective-changing experience. De Kerangal transports us to the depths of grief, situating us elbow deep in the bloody body of a teenager, and then brings us up to the stars, to the heavens, and ultimately to the frailty and beauty of life and death--Katelyn Connor
Katelyn Connor is a National Sales Associate at Penguin Random House. She completed her degree in Narrative Medicine in May, 2016.
Catching Homelessness
When I read Josephine Ensign’s piece in this spring’s Intima and saw she had a novel coming out soon, I immediately wanted to read it. The book, Catching Homelessness: A Nurse's Story of Falling Through the Safety Net, published this year by She Writes Press, doesn’t disappoint. Ms. Ensign brings her masterful crisp prose and extensive experience as a family nurse practitioner, writer and teacher to the issue of homelessness, and offers an engaging, informative and moving memoir.
Catching Homelessness begins with Ms. Ensign’s childhood growing up at a camp near a Civil War battlefield, “a landscape of ghosts and half-buried violence, covered in violets, punctuated by deep, abandoned wells.” But the memoir’s main focus is Richmond, Virginia in the 1980’s, when Ms. Ensign was a newly minted nurse practitioner running a health clinic out of a homeless shelter. Her perspective of the homeless changes from her initial view of them as “exotic, impoverished, foreign-to-us people,” to real people with real problems: Lee, “dressed in several layers of hospital gowns, with the vulnerable air that clings to them,” who when dying of AIDS names Ms. Ensign as his next of kin; schizophrenic Louie, covered in head lice; pregnant Sallie with an IQ of 45. Ms. Ensign changes our view too, reaching us on an emotional level with these and other precisely drawn characters. We pick up a lot of knowledge along the way, not just about homelessness but also about the origin of the nurse practitioner role, the geography of Richmond and the lingering effects of its history. We learn to empathize with the people drawn to serving the homeless.
Josephine Ensign
As a young new nurse at the Richmond clinic, Ms. Ensign recalls, “I still wasn’t sure how far I’d go, what I’d risk catching in the name of compassion or health care duty.” Run-ins with Richmond’s male-dominated medical establishment, disillusionment with her Evangelical Christian upbringing, and a failing marriage lead to Ms. Ensign’s own homeless crisis, an experience which enables her to bring a unique perspective to the issue. By the end of the book, you feel you’ve read a good story and learned a lot too. And you’re sure to take the advice she offers in the book’s comprehensive appendix, and respond to the next homeless person you meet with a smile and a kind word. -- Priscilla Mainardi
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 Blue Moon Literary and Art Review and The Examined Life Journal. She teaches English Composition at Rutgers in Newark, New Jersey. Her short story “Pretending Not to Know” appeared in the Spring 2014 Intima.
Sleepwalker: The Mysterious Makings and Recovery of a Somnambulist
UPDATE, May, 2017. Kathleen Frazier, a Columbia University Narrative Medicine Masters student, has won the 2017 Independent Book Publisher Award for Best First Book – Nonfiction, for her memoir, “Sleepwalker: The Mysterious Makings and Recovery of a Somnambulist.” Book Award Listings (see #83): 2017 Independent Publisher Book Award. We'd like to congratulate Kathleen and urge you to read this enlightening book.
A picture of a very young Kathleen Frazier stayed with me throughout Sleepwalker, her fascinating memoir of the effect of her sleep disorder on her life. Ms. Frazier’s sleep problems begin in earnest at age twelve and range from insomnia to sleepwalking and night terrors, from which she awakens screaming in fright and occasionally in perilous situations. She blames herself for these problems and hides them, afraid that if anyone learns about them they will lock her up. Though living in a constant state of exhaustion and fear, she attends college, moves to Manhattan, marries and divorces, and pursues an acting career while holding down numerous waitressing jobs. Her sleep problems continue through her twenties as she self-medicates with alcohol and, unable to sustain intimacy, becomes promiscuous.
Ms. Frazier is the youngest of five children whose parents are not without their own problems: her father is a recovering alcoholic and insomniac and her mother experiences night terrors. The stories they tell about her grandparents also hint at sleep problems, and the book raises the question of whether sleep disorders have a genetic component.
Sleep science is in its infancy, and Sleepwalker illustrates the lack of understanding of sleep disorders among medical professionals as well as the public. Ms. Frazier eventually finds help from a doctor who specializes in sleep disorders. She starts to sleep better, first aided by medication, then through a combination of diet, therapy, lifestyle modification, and the support of friends and her newly established family. She comes to recognize the role of her own denial and of traumatizing events of her childhood in her sleep disorder. She begins to write Sleepwalker, and telling her story becomes an essential and integral part of her recovery.--Priscilla Mainardi
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 Blue Moon Literary and Art Review and The Examined Life Journal. She teaches English Composition at Rutgers in Newark, New Jersey. Her short story “Pretending Not to Know” appeared in the Spring 2014 Intima.
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
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.
Interview with Kathleen Frazier, Author of Sleepwalker
Kathleen Frazier
I talked to Kathleen Frazier, author of Sleepwalker: The Mysterious Makings and Recovery of a Somnambulist, recently on her lunch hour from her administrative job at Columbia University, where she has been accepted into the Masters of Science Program in Narrative Medicine.
Congratulations on the publication of Sleepwalker and its continuing success. I read that your agent signed you after reading your piece about sleep disorders in Psychology Today. Very nice story.
Thank you. I originally wrote that piece for Modern Love [the New York Times column] but they turned it down. It really belonged in Psychology Today. My proposal was based on that essay. Years before, in the late 1990s, I’d begun writing down my memories from sense memory exercises at The Actors Studio. But I felt too much shame to share the sleepwalking publicly so I turned the memories into young adult fiction. The teen protagonist was a sleepwalker but the material was too dark for the young adult market, though it wouldn't be now. The turning point for me, in regard to my decision to write the memoir, was the tragic death of Tobias Wong, who hung himself in 2010, most probably while sleepwalking. Soon after, I took an essay writing class and my teacher pointed out that my memoir was really a love story. (I'd met my husband just days after a severe accident I had in the middle of a sleepwalking/sleep terror episode.) My agent helped me focus the story on my sleep disorders as they related to my relationships and my fear of intimacy. I was especially terrified of being seen as a freak, even as a child.
How common are sleep disorders?
More common than people realize. Dr. Mahowald, who wrote the foreword to my book, was a Principal Investigator in the first national study ever conducted on nocturnal wandering in the United States, in 2012. The research showed that almost thirty percent of Americans have experienced at least one episode. Sleep disorders, especially insomnia and sleep terrors, can often be related to trauma. You see them in PTSD and chronic trauma, for example in victims of child abuse, domestic violence, rape, and other crimes. And, very much in the news, we see debilitating sleep issues associated with our soldiers returning from war. Sleep is inextricably linked to our mental health.
The book raises the question of whether there’s also a genetic component to sleep disorders. You write that your father was an alcoholic and your mother also suffered from night terrors.
Yes, it does raise the question of genetics. My father got sober, which was unusual for that time. Later he relapsed on sleeping pills, though at the time no one recognized this as a relapse. He suffered terribly from insomnia, from the trauma of WWII. Both my parents survived alcoholic homes and both had unpredictable fits of rage.
Acting seems like an odd choice for someone who wanted to be invisible as a child, as you write.
I used to sing as a child, at a neighbor’s house. Some part of my spirit wanted to express itself that way. Doing work on stage made me feel so happy and connected to that part of my spirit. I was “bit,” as they say, the first time I was on the stage as a senior in high school.
You were afraid to share your sleep problems with anyone, afraid of being diagnosed as mentally ill. Did you really think you were mentally ill, since you functioned pretty well during the day?
I did the best I could, but I was functionally affected. There was a lot of denial. I had read about my sleep disorders in Psychology Today when I was sixteen and the message was to tolerate them. By the time I finished theater school in New York, I was constantly exhausted, unable to go for auditions, even though they were important to me. My insomnia worsened for fear of having episodes. Sleep deprivation is a form of torture. I began self-medicating with alcohol and became promiscuous in a city that was burgeoning with Aids. This was self-abusive and a hidden cry for help.
And now? Are you fully recovered?
I still have an occasional night terror when I’m under stress or get triggered, for example by violence in a movie. I haven't left my bed in over 20 years. Still, I remember how unsettling it was to be told that I did something while sound asleep without any recollection. Just as frightening was to wake up during a night terror, like waking up in the middle of a horror movie.
What are you working on now?
An historical novel called Selkie Girl inspired by my Irish grandmother, about a girl at the turn of the last century whose unwed mother commits suicide on the night she’s born. She’s ostracized by her village and forlorn that her mother abandoned her. A kindly grandma figure consoles her, and tells her that her mother was a selkie, a seal which, according to Celtic legend, sheds its skin to become human on land. I won't say anymore—don’t want to spoil it—but the book incorporates a lot of the intergenerational trauma that I explored in Sleepwalker.
What about acting?
I participate some at the Actors Studio, but lately my creative attention has been towards my writing. I've had the challenge recently of using voice-activated software because of wrist injuries. I also narrated my book for Audible and am creating a podcast about sleep which will focus on people's narratives.
Has Sleepwalker helped a lot of people?
My dentist recommended it to a patient. Another dentist I know had a patient whose teeth were ruined because she would get up during the night and chew on ice chips. Some people make and eat whole meals while asleep. Readers seem to identify with my story, with the connection between trauma and sleep problems, and they pass it along to others who might benefit.
Shortly after this interview a family reached out to Ms. Frazier to tell her how much her book comforted them after the tragic death of a family member while sleepwalking. Ms. Frazier wrote in an email: “The fact that my book came out only two months before this death is for me a sign that it has the potential to educate, comfort, and I hope maybe prevent injury and even death by sleepwalking. I am very, very grateful that sharing my story could bring this family any bit of comfort.”
The Editors at The Intima are in turn grateful to Ms. Frazier for sharing her thoughts and ideas with our readers.—Priscilla Mainardi
Mummies Meet the Twenty-First Century
By the time of the Egyptian New Kingdom (1550-1069 BCE), tomb robbers had already been operating for many years. Priests moved royal mummies from their tombs and reburied them in caches, often without their funeral goods. How do we find the identities of these mummies, uncovered in the 1900’s and distributed to museums across the globe? In Scanning the Pharaohs—CT Imaging of the New Kingdom Royal Mummies , Zahi Hawass and Sahar N. Saleem use high-definition CT scanning and DNA analysis to answer this question.
This book is full of mystery. Which mummy is Hatshepsut, the woman who ruled Egypt like a man? How can we identify King Tut’s parents and grandparents? Who died young? Who lived for 92 years? Who was murdered?
I would subtitle this book as “All you ever wanted to know about mummies.” There are in-depth explanations of the process of mummification, stories of tombs great and small, and anecdotes about archaeologists and tomb robbers. The most enjoyable parts of the books are called Sidelights, which give us special looks at individual Pharaohs the history of their reigns. The photographs are breathtaking, and the X-ray and CT images, particularly the 3-D reconstructions, are amazing.
The science is explained at several levels, appealing to both medical and non-medical readers. The Egyptology is flawless. There are discussions of genetics, injury, and disease, war and peace, jealousy and familial love—all the components of a richly vibrant civilization of the past.
As a child, I often curled up with books of Egyptology, finding them endlessly fascinating. The adult me loves this book just as much.
MAUREEN HIRTHLER is a physician and holds an MFA from the University of Missouri-Kansas City. Her work has appeared in several journals, most recently in the Yale Journal of Medical Humanities, Hospital Drive, and Hippocampus, and is forthcoming in Touch and the Mulberry Fork Review. Her piece, “D/D” appeared in the Fall 2014 Intima.
Poetry In Medicine: An Anthology of Poems About Doctors, Patients, Illness and Healing. Edited by Michael Salcman
For more information about Poetry in Medicine by Michael Salcman, go to http://www.perseabooks.com/detail.php?bookID=115
If the doctors cure
then the sun sees it.
If the doctors kill,
then the earth hides it.
—from "Doctors" by Anne Sexton
Most of us would not be surprised to learn Anne Sexton had written a poem entitled "Doctors." The confessional poet, who was raised in Weston, MA., was institutionalized throughout her life and often under medical care for depression. But many of us in the medical humanities might be stunned at just how many poets have addressed issues in medicine, as we discover in Poetry In Medicine, an in-depth, beautifully-conceived collection edited by poet and neurosurgeon Michael Salcman.
What makes this collection a pleasure to read—either from the inspiring foreward by poet Michael Collier to the index of poets at the end, or by dipping in and out of its treasures in a random fashion—is that Dr. Salcman has organized it in the most ingenious ways: There are chapters entitled, "The Wisdom of the Body: Anatomy & Physiology," "Contagions, Infections & Fevers," "From The Children's Ward," and "Looking Inside: Procedures, Surgical & Diagnostic." There are also simpler categories, like "Patients" and "Doctors and Other Healers." Work by Shakespeare, Ovid, Rainer Maria Rilke, Ogden Nash, W.B. Yeats, William Wordsworth, e.e. cummings, Elizabeth Bishop and dozens more populate the pages. Each of these writers have written poems that celebrate, anoint, critique, embrace, love or hate doctors, illness, suffering, medicine and healthcare.
Michael Salcman, photo graphed here at a reading in November 2015 at the Columbia University Medical Center to celebrate the literary & fine arts journal, Reflexions, is a poet, neurosurgeon, and art historian, formerly chair of neurosurgery at the University of Maryland and president of the Contemporary Museum in Baltimore. He is the author of six medical textbooks and six collections of verse, including The Clock Made of Confetti and The Enemy of Good Is Better. Dr. Salcman reads the poem, "The Clock Made of Confetti" below.
There is Thomas Hardy's "A Wasted Illness," Walt Whitman's "The Wound Dresser" and C. P. Cavafy's "The Bandaged Shoulder" alongside Kate Kimball's "Transfusion" and my particular favorite, "Night Thoughts Over A Sick Child," by Philip Levine, which brought back memories of caring for my feverish son on a long, lonely midnight vigil. We are given topics as specific as "Colonoscopy Sonnet" by Sandra M. Gilbert about a medical procedure being done on the leader of the free world ("On the news tonight, a presidential/colonoscopy...") to more philosophical musings about death from Yeats in "A Friend's Illness":
Sickness brought me this
Thought, in that scale of his:
Why should I be dismayed
Though flame had burned the whole
World, as it were a coal,
Now I have seen it weighed
Against a soul?
Poetry in Medicine achieves many things, the primary one being a pleasurable read for anyone interested in literature. What seems additionally relevant for those involved in healthcare or teaching Narrative Medicine is the tremendous cache of writing Dr. Salcman has amassed that provides us with rich material— for study, for inspiration and for reflection and response.—Donna Bulseco
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:
Last Night in the OR: A Transplant Surgeon's Odyssey by Bud Shaw, M.D.
There’s a revelation that comes about halfway through Last Night in the OR: A Transplant Surgeon’s Odyssey by Bud Shaw, M.D. The title leads you to believe you’ll be reading a medical memoir, a genre that has drawn a lot of attention recently with fine books by Henry Marsh (Do No Harm) and Atul Gawande (Being Mortal). Dr. Shaw’s new book traces his evolution from an impressionable 31-year-old surgical resident in Utah through his years of training in what was then the relatively new field of liver transplantation, as well as other significant life events—marrying, divorcing, being fired, undergoing treatment for lymphoma, and getting older and shifting into a new life as a writer. Along the way, we meet the kind of characters you might encounter in a novel: Renowned transplant surgeon Dr. Thomas E. Starzl, one of the most ornery, foul-mouthed, caustic human beings you’d never want to entrust your life to—except for the fact that he was brilliant, fearless and demanded the best out of his team: the taciturn and efficient Dr. Shun Iwatsuki, Dr. Hong from Shanghai (dubbed the Human Retractor for his skill at retracting a patient’s rib cage out of Dr. Starzl’s way), Dr. Carlos Fernandez-Bueno, and Shaw. We meet many patients, in chapters with titles like “Janie and the Giant Abscess,” “Death 5, Mrs. Rothstein l” and “Burned Yolanda.” Shaw’s father, also a doctor, is a major presence, and the emotional thru-line of a father-son relationship complicated by a shared vocation is finely drawn.
Author Bud Shaw, M.D. The father of three adult children, Shaw lives with his wife, novelist Rebecca Rotert (Shaw), in the wooded hills north of Omaha, Nebraska.
Check back in January for an interview with Dr. Shaw on Intima.
So here is the revelation: Medical humanities has found its Raymond Carver. Dr. Shaw’s writing is a true departure from the other brilliant books in this genre because of the distinctive way he tells his stories. His writing is taut, spare and direct, but also gracefully nuanced. We feel we’re getting a factual accounting of events, but also the bigger, more symbolic picture of a time and place and the lives within it. There is a visceral recognition of the physical and psychological toll exacted on physicians and the real fears associated with a job that deals with life and death on a daily basis. Yet, thankfully, the writing never succumbs to sentimentality or philosophizing. Like Carver, Dr. Shaw lays out the Big Issues by making the little worlds we live in alive and real on the page.
Here’s how the chapter “Good Opera” begins:
On the table lay a man from Kansas. He had a wife, two daughters under five, and a bad liver. He had a belly full of fluid, skin glowing like a pumpkin, and a nest of veins like snakes between my knife and his liver.
I looked into the eyes of four surgeons scrubbed and waiting to help me. Shun was in the lounge smoking. He’d helped me do dozens of transplants by then and he figured I’d call for him if I got into trouble. Hong, the Human Retractor, grinned at me. I asked for the knife and we began.
As with any medical memoir, expect a few squeamish moments (that is, if you’re not a clinician used to talk about fluids, blood, diseases, etc.). Expect, also, to be moved by a doctor’s tales, expressed succinctly and with great depth and feeling.—Donna Bulseco
DONNA BULSECO, M.A., M.S., is a graduate of the Narrative Medicine program at Columbia University and Managing Editor of Intima: A Journal of Narrative Medicine. After doing undergraduate work at UCLA in creative writing and American poetry, the L.A. native studied American Gothic and English at Brown University, then moved to New York City in the late seventies. She has been an editor and journalist for the past 25 years at publications such as Women's Wear Daily, W, Self, and InStyle, and has written articles for Health, More, Redbook, and the New York Times.
The Shift: One Nurse, Twelve Hours, Four Patients' Lives by Theresa Brown, RN
The Shift follows Theresa Brown through a twelve hour shift at the urban teaching hospital where she works as a registered nurse. Brown’s thoughtful and insightful observations provide an inside look at the challenges of nursing on an oncology unit, as she takes care of patients like frail Mr. Hampton, whose cutting-edge treatment may kill him, and anxious Candace, awaiting a stem cell transplant.
This nonfiction narrative goes into great depth and detail about hospital routine and the stress it puts on patients, nurses and doctors. The book is also, surprisingly, filled with literary references, from writers as varied as William Blake, Abraham Verghese, and Rudyard Kipling. Brown, a former English professor who writes an occasional column on nursing issues for The New York Times, deftly inserts these to lend meaning to certain poignant moments, such as when she likens William Carlos Williams’ poem “The Red Wheelbarrow” to a favorite patient’s candy dish, each capable of teaching us something about what is important in life.
The pace of the book allows for these detours, as well as detours into some of Brown’s memories, worries and fears. But what comes through most clearly are the empathy and compassion she feels for her patients, as she searches for an understanding of the meaning of health, illness and caring. Brown laments the way things used to be, while simultaneously accepting how much they have changed. A cancer diagnosis is no longer the death sentence it once was for the patients we encounter in The Shift, yet Brown must still help patients face the end of their lives, her most challenging yet ultimately most rewarding task.
To Brown, nursing is like “putting your shoulder to a rock and pushing it uphill.” Throughout the book she keeps the reader turning the pages with the possibility that at any time the rock might slip and roll back down the hill. During this twelve hour shift, it never does. —Priscilla Mainardi
Priscilla Mainardi is a graduate of the University of Pennsylvania and Rutgers University where she received a MFA in creative writing in 2012 while continuing to practice as a registered nurse. Often awed by her patients’ ability to cope with dire health issues, she is interested in exploring the ways in which narrative can connect caregivers and patients in a stronger bond to foster healing, and in the contributions of nurses to the field of narrative medicine. Her short story, "Pretending Not to Know," appeared in the Spring 2014 Intima. Mainardi joined the editorial board of Intima: A Journal of Narrative Medicine in Fall 2015.