The Song of Our Scars: The Untold Story of Pain by Haider Warraich

Almost everything we know about pain and how to treat it is wrong, Haider Warraich says in his insightful book The Song of Our Scars: The Untold Story of Pain, published earlier this year by Basic Books. The physician and assistant professor at Harvard Medical School claims that there are dire misunderstandings between patients who feel pain, the clinicians who address it, and the researchers who study it. Worst of all, he says, pain has transformed from a symptom into a disease.

Haider Warraich is a physician, author and researcher at the VA Boston Healthcare System, Brigham and Women’s Hospital and Harvard Medical School. He has published more than 140 research papers including in the NEJM, JAMA and BMJ. He frequently writes for the New York Times and Washington Post, and is the author of the books Modern Death, State of the Heart and the just published The Song of Our Scars – The Untold Story of Pain (Basic Books).@haiderwarraich

One in five American adults—an estimated sixty-six million in total—experience chronic pain, resulting in billions of dollars in direct medical costs and lost productivity. Lower back pain is the leading cause of disability in the United States, followed by migraine headaches, neck pain and conditions like osteo and rheumatoid arthritis. And Americans are most likely to use opioids to help alleviate their pain. Yet, as Warraich points out, opioids provide little to no benefit for chronic non-cancer pain, and can even make it worse.

Pain’s storied complexity is multifaceted and multilayered. Its treatment, in Warraich’s view, requires empathic holistic care that considers how pain is racialized, gendered and personal. Pain is subjective. You can have pain without suffering. There is no single dedicated pain center in the brain. The pain of Black people remains both under-recognized and under-treated. Women are more likely to feel pain, but their pain is also more likely to be dismissed. Simply assessing pain on a numeric scale doubles the risk of opioid overdoses in hospital. And exercise is a vital part of any multidisciplinary approach to managing chronic pain.

Warraich himself has chronic back pain due to a sports injury that happened many years ago when he was a medical student in Pakistan—around the time when he felt confirmed in his vocation to be a doctor. Just when he felt like he had fallen in love with medicine, he broke his back.

Now an insightful, wounded healer, Warraich draws from his own experience of how disruptive chronic pain can be—how it “disrupts the way a person moves through their life, the narrative they define themselves by, the arc of their stories.”

The Song of Our Scars is filled with research findings, clinical vignettes, historical details and sociopolitical commentary. Yet the story Warraich tells is so broad and at times surprisingly sequenced—jumping from the mythological Greek world, to the history of opium, to the American Civil War—that it can sound like listening to the radio while scanning the channels, catching snippets of newscasts in search of a good song. We as readers want to hear more of Warraich’s own personal self-reflections, which would help focus his narrative by giving voice to his song, and deepen its impact on readers, his listeners.

Perhaps most helpful is Warraich’s concern for the origins of the opioid addiction crisis in America. The story of the opioid crisis continues to unfold in the United States, and recently came into the headlines in the documentary “All the Beauty and the Bloodshed,”directed by award-winning director Laura Poitras about artist Nan Goldin’s life and chronicles her addiction and activism that led to major museums such as the National Portrait Gallery in Washington, DC, the Guggenheim, the Tate and others to stop taking donations from the Sackler family and removing the Sackler name from the walls of their institutions. The documentary won the prestigious Golden Lion at the Venice Film Festival in September.

In The Song of Our Scars, Warraich highlights how Cicely Saunders’s revolutionary approach to pain management in hospice care was “hijacked” into a business strategy by the pharmaceutical industry, whose goal, he says, “was to take Saunders’s approach toward total pain experienced by people at the end of life and apply it to people in every phase of life, treating routine medical conditions as if they were terminal illnesses.” Saunders, who started her clinical practice as a nurse and became a doctor, is credited with founding the first modern hospice and establishing the discipline and the culture of palliative care in the late 1950s.

In terms of narrative care, Warraich brings to mind, but does not reference, other prominent physicians and scholars who describe and advocate also for such empathic patient-centered care, including Rita Charon, Victoria Sweet, Arthur Frank and William Randall.

What are the songs of our scars? What type, form and shape do they take? There are love songs, ballads, laments and anthems, to name an obvious few. How do they help us? Do they capture our hearts and move our spirits? Warraich hopes so. As patients tell us their tales of pain, he knows how important it is to listen to them. And he wants healthcare providers to learn how to listen more fully, deeply and more compassionately in clinical practice. Empathy is what makes a good doctor, he says—empathy and kindness.

“As we look to the future and take stock of all that we know about chronic pain,” he says, “we find that the most promising treatment approaches don’t involve any chemical inebriation or procedural manipulation. They involve one human being talking to another, helping them realize that the path to relief was within them all along.”—Robert Mundle

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Robert Mundle is a graduate of Yale Divinity School and a palliative care chaplain in Kingston, Ontario. He is the author of How to Be an Even Better Listener: A Practical Guide for Hospice and Palliative Care Volunteers (JKP 2018).

Show Me Where it Hurts: Living With Invisible Illness by Kylie Maslen

Kylie Maslen’s critically acclaimed non-fiction essay “I’m Trying to Tell You I’m Not Okay “ took a new form on shelves worldwide in 2020: The essay became the first chapter of Maslen’s experimental book Show Me Where it Hurts: Living With Invisible Illness. Like her essay, the book has met with success: it was shortlisted for Non-Fiction in the 2021 Victorian Premier’s Literary Awards and named among Guardian Australia’s 20 best Australian Books in 2020.

Author Kylie Maslen . Learn more about her work at kyliemaslen.com
Photo by Lauren Connolly

As Maslen herself says, her book is a part of a growing trend of Australian “sick lit” – literature that deals with life with chronic illness. “Living with invisible illness poses a unique challenge,” Maslen explained we spoke via Zoom, “in that you’re constantly having to fight for attention because things are not self-evident.” Her collection of essays primarily focuses on endometriosis and bipolar disorder and brings to light conditions that are not well known or understood but are quite common. Endometriosis alone affects 1 in 10 women and its issues create complications we often choose to dismiss or ignore.

The topic of the book might sound a bit heavy – and at times it is – but Maslen managed to create a Millennial masterpiece. It is many things: confessional literature, a review of pop culture and a fight for disability awareness and representation all at once. A source of both tears and laughter, the book comes with an important message. As a part of pop culture itself, it manages to entertain nevertheless.

The nature of the book is already illustrated in the opening essay, where Maslen movingly writes about endometriosis, suicidal ideation and memes all in one text, as the following illustrates:

The very nature of chronic illness lends itself to isolation. Time spent at home resting, time spent in waiting rooms, time spent in hospital, time spent recovering.
Things I want to say:
I don’t know how long I can keep doing this.
I can’t do anything nice for myself because I spend so much money on staying alive.
Instead I post a meme of SpongeBob walking into a room with an exaggerated swagger. The caption reads ‘walking into your doctor’s office’.
The receptionist at my GP’s rooms says, ‘Take a seat, Kylie’ when I walk in the door. The frequency of my visits spares me the time it takes for him to look me up on the system and confirm my appointment; he no longer asks, ‘Is this still your current address?’ before letting me sit down. I’m grateful that he can see my exhaustion and helps me in this small but not insignificant way, but I’m saddened that my life looks like this at such a young age.

A key theme in chronic-illness memes is conversations with ‘normies’ (those who are not chronically ill or disabled). Specifically, she chronicles their refusal to listen, an inability to empathize with others’ pain or the quickness to dispense unsolicited advice about symptoms and illnesses of which they have no lived experience.

Things people say:
‘You don’t look sick.’
‘You look much better than last time I saw you.’
‘It’s good to see you with some colour back in your face at least.’
Many of us with chronic illness are often housebound. Unable to socialize with family, friends or colleagues we go online to interact with others. We are also searching for people who understand.
Peer support through social media offers a source of experiential knowledge about illness. It gives us a way to normalize pain and a life lived with chronic illness. That can take the form of sharing stories and asking questions, but often we communicate through chronic-illness memes, which are a simple visual means of conveying complicated emotions and frustrations, as well as a way to add humour to our heavy conversation. Using memes—images or videos that are already widely shared – with context tailored to illness communities allows those of us who feel socially isolated by circumstances beyond our control to connect with the broader zeitgeist.

Maslen connects with readers, especially those of her own generation, with her daring honesty. The author discusses sex, loneliness, mental health struggles and the burden of chronic pain as well as pop icons, her favorite TV shows, books and movies. In one essay, the writing is raw and dark, disclosing extremely intimate episodes of alcohol and prescription drug abuse as well as Tinder dates gone wrong due to endometriosis; another essay is a playlist, where each song serves as a tool to dig deeper into her own headspace. We are presented with an analysis of SpongeBob SquarePants and an ode to Beyoncé on the one hand, and on the other we witness Maslen thoughtfully posing for Instagram, choosing what to share and how, and comparing her life to the curated online lives of those who are well. It is this combination of different approaches to the same topic that enable the book to be a refreshingly accurate description of an entire life, warts and all, of a person just like any other Millennial—having to deal with the burden of chronic illnesses on top of it all.

This aspect of her narrative is what made it stand out from the rest of “sick lit” for me personally. Not much younger than Maslen, I, too, suffer from endometriosis. I’m often bedbound, scrolling through memes about menstruation and ‘endo life,’ laughing out loud and sharing the best ones with my online support groups and trying to communicate my condition with others through Instagram stories. I am yet to find a book on the subject that so fully resembles my own life. I can say with no hesitation that Maslen managed to do what all illness narratives aim to do – she wrote a book that connects with those who experience similar things on a very deep level. This makes the reader feel validated and less alone. It is, however, written in a welcoming way should it fall in the hands of ‘normies’ who are willing to learn more about what it is people like us experience.

There is a running joke in the endometriosis online community: We are the worst club with the best members. Nobody wants to be a part of this club, but everybody is offered a level of understanding that can hardly be found elsewhere as our situations are so particular, very individual yet somehow the same. In Maslen, I immediately recognized an #endosister as we say. Having heard that I would be doing this review, Maslen felt the same when she “Instagram stalked me.” It is for this reason, as well as being a genuine fan of the book, that I was thrilled when Intima decided to reach out to Maslen and ask her for an interview.

Maslen agreed to have a virtual sit down with the journal’s editor Donna Bulseco and myself, and across time zones, each cozy on our own continent, the three of us had a wonderful online chat about chronic illness, social media, narrative medicine and the possible impact of books such as this one on society at large. It was my pleasure to chat with Kylie, and I hope it will be yours to listen to what we each had to say. —Alekszandra Rokvity

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Alekszandra Rokvity is a Serbian-born writer and PhD candidate working on her doctorate between the Karl Franzens University of Graz in Austria and the University of Alberta in Canada. She specializes in cultural studies and medical humanities. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. Her doctoral dissertation is a case study of endometriosis that explores the connection between gender bias in the medical community and the social discourse surrounding menstruation.

Ms Rokvity has previously taught in Austria, Canada, Vietnam and is currently teaching in Belgrade, Serbia. An avid activist for women's rights, she cooperates with various NGOs such as the London Drawing Group (UK) and Vulvani (Germany).

Read more of her work on Medium.

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.

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.

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.

The Serpent's Secret: Kiranmala and the Kingdom Beyond by Sayantani DasGupta

"The Serpent's Secret" is the first book in the Kiranmala and the Kingdom Beyond Series; Scholastic publishes the book on February 27, 2018.

 “Stories are the way we human beings shape our worlds,” writes Sayantani DasGupta, MD MPH, in the article “Stories Matter: Narrative, Health and Social Justice.” In the piece, the author, educator and Intima contributor (Spring 2016 issue), elaborates on the ways that narrative is shaped by many factors, from the personal to the political. Narrative, she posits, can be life-changing: “In the face of illness or adversity, injustice or trauma, stories help bridge what theorist Arthur Frank has called ‘narrative wreckage’—the point at which one’s old life’s plot is no longer valid, and one needs a new plot with which to continue life’s journey.”

These words have a particular resonance right now in light of the #metoo movement, where long-silenced voices are being heard in narratives that support finding ways to balance sexual inequality.  Curiously enough, the words are equally significant as a way to read “The Serpent’s Secret,” a remarkable and delightful new work of children’s fiction by Dr. DasGupta, just published by Scholastic as Book 1 of the new series Kiranmala and The Kingdom Beyond. How refreshing to find an electrifying social theorist like Dr. DasGupta who is also an entertaining prose stylist able to deliver an empowering novel for tweens. It’s a book that is multi-generational in the way the Harry Potter and Hunger Games series were—"The Serpent's Secret" also speaks to readers who finished middle school many red moons ago.

The book begins on the morning of New Jersey kid Kiranmala’s birthday, who in her own sassy voice introduces her story about a day when everything in her world radically changes:

The day my parents got swallowed by a rakkhosh and whisked away to another galactic dimension was a pretty crap-tastic day. The fact that it was actually my twelfth birthday made it all that much worse. Instead of cake or presents or a party, I spent the day kicking demon butt, traveling through time and space looking for my family, and basically saving New Jersey, our entire world, and everything beyond it. But I’m getting ahead of myself. I’ll tell you that part soon. First, let me back up a little.

As readers we are engaged by this smart, empowered narrator, who is alone, newly orphaned, yet tough—she already sounds like Ripley of Alien, one of the original female butt kickers in 1979 when the sci-fi thriller came out. We’re intrigued by words we do not know (what the heck is a ‘rakkhosh’?) and are drawn in by the promise of time travel and life-challenging adventures in other galaxies. In her own knowing way, young Kiranmala has given us the big-picture plot in the first paragraph, enticing us to come along with her to see what transpires.

Like many of the best books in children’s fiction, parents are dispensed with from the get go, here swallowed by a rakkosh—a “carnivorous, snot-trailing demon” who populates many of the Bengali folktales Dr. DasGupta was told as a child. In the first chapters, Kiranmala’s childhood home is also trashed by the demon with a black tongue who she calls “halitosis head.” That’s the overall dynamic and tone the author sets up: sword fighting amid the silliness, cleverness cancelling out the fearful chaos.

“The Serpent’s Secret” is aimed at young people who are at an age where childhood and adulthood begin to overlap, where the power of parents is displaced by the power of peers. Dr. DasGupta, a pediatrician and a mother, knows only too well the rough road of this developmental stage, when the plot of childhood branches off into new paths toward adulthood, and as a skillful writer, she’s able to bring to life the joys, confusion, real terror and pure happiness that emotional journey often takes in intriguing and amusing—not heavy-handed—ways. We are inside the young narrator’s head, seeing and judging events from her no-nonsense point of view. Her voice is compelling.

In Kiranmala’s quest to save her parents, she meets up with a cast of eccentric characters as amusing, complex and memorable as the flying monkeys, the Scarecrow, Tin Man, Good Witch and Bad Witch that Dorothy encounters in “The Wizard of Oz.” There’s Lal and Neel, two brother princes on winged horses who battle zombies and escort Kiranmala from Parsippany to the Kingdom Beyond Seven Oceans and Thirteen Rivers in search of her parents. There’s the magical pun-loving bird, Tuntani, whose corny jokes provide lighthearted moments and reflect the goofiness (“How do chickens get strong? Egg-ersize!”) tweens and teens love. There’s the intimidating green-eyed Sesha, the Serpent King, “guardian of the primordial ocean of divine nectar, keeper of time” and many others, each one an encounter for Kiranmala to confront and conquer to get to her goal.

Throughout the story, Kiranmala discovers dramatic truths about her origins as well as several revelations about life. There is the conflict between dark and light, a familiar theme in children’s and YA fiction from Grimms’ Fairy Tales to “A Series of Unfortunate Events” and “Twilight.” In “The Serpent’s Secret,” Kiranmala learns the difference between dark energy and dark matter, passes through tides of rubies in a peacock barge that reroutes her to the Demon Land (aka "The Blood-Thirsty State,") and battles a room of pythons to steal a jewel needed to read a shape-shifting map that will guide her to her parents. Those are just a few of the startling and original moments that keep the narrative taut and surprising throughout the novel’s 338 fast-paced pages.

Sayantani DasGupta, the daughter of Indian immigrants, wanted to share her love of books with her own kids but was saddened by the lack of heroes that looked like her family and neighbors. She decided to write her own stories, returning to the folktales she heard on childhood trips to India.

Originally trained in pediatrics and public health, Dr. DasGupta is also the author, co-author or co-editor of several books, including a book of Bengali folktales, The Demon Slayers and Other Stories (Interlink 1995), and the recent Principles and Practice of Narrative Medicine (Oxford 2016). She teaches in the Master's Program in Narrative Medicine, the Center for the Study of Ethnicity and Race, and the Institute of Comparative Literature and Society at Columbia University.

In the Author’s Note at the end of the book, Dr. DasGupta goes into detail about the Bengali folktales that inspired many of the characters in “The Serpent’s Secret.” It’s a short and welcome postscript that underscores one of the reasons the author decided to write children’s fiction. As the daughter of Indian immigrants, she wanted to share her love of books with her own kids but was surprised by the lack of diversity in the books available. She decided to write her own stories, returning to the folktales filled with bloodthirsty demons and enchanted animals that she heard on childhood trips to India.  Cue applause for that decision: In the first book in the Kiranmala and The Kingdom Beyond series, Sayantani DasGupta has created lovable characters, a rollicking narrative and meaningful themes that have a broad appeal for many young (and not-so-young) readers, setting up a thirst for what's up next for the appealing young heroine.

New fans of Princess Kiranmala will undoubtedly be clamoring and drooling like rakkhoshs for Books 2 and 3.—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.