The Beauty in Breaking by Michele Harper

In the powerful memoir The Beauty in Breaking (Riverhead Books 2020), Michele Harper challenges us to examine the transformation of trauma and how painful experiences figure prominently in one’s past and present. In honest and contemplative language, Harper, a doctor and graduate of Harvard University and the Renaissance School of Medicine at Stony Brook University, courageously describes a challenging childhood that exposed her and other family members to ongoing outbursts of physical abuse. Dr. Harper gives insight into how this adversity informed her decision to pursue a career as an emergency room (ER) physician, one that now spans more than a decade working at various locations in Philadelphia and the South Bronx:

“Unlike in the war zone that was childhood, I would be in control of that space, providing relief or at least a reprieve to those who called out for help. I would see to it that there was shelter in the spaces of which I was the guardian.” (19)

Michele Harper has worked as an emergency room physician for more than a decade at various institutions, including as chief resident at Lincoln Hospital in the South Bronx and in the emergency department at the Veterans Affairs Medical Center in Philadelphia. She is a graduate of Harvard University and the Renaissance School of Medicine at Stony Brook University. The Beauty in Breaking is her first book.

In navigating this career of service, she regularly draws upon her resiliency to confront violence when caring for gunshot victims, responding to code blues, or de-escalating threatening patient behavior. Simultaneously, Dr. Harper impresses upon readers the extraordinary privileges of being a healer, as well as the difficulties of stewarding the distressing stories accompanying that role.

As Dr. Harper continues to meditate on her life’s milestones, including divorce, residency graduation and new leadership roles in the clinical world, she paints a sobering reality of her patients’ lives. In often invisible ways, society inflicts lasting and generational trauma that tends to be outside of individual control, especially for historically underserved populations. From the perspective of an African-American female physician, the author shares her reflections on heartbreaking interactions with young patients, like Gabriel and Jeremiah, both of whom she treats for head trauma:

“I suppose it’s a matter of faith whether or not we choose our starting ground before we’re born into this life. Some begin the journey on flat, grassy meadows and others at the base of a very steep mountain. One path, seemingly smooth, can make it nearly impossible for us to see the ditches and gullies along the way. The other, while painfully tough, can deliver what it promises: If you can navigate that path, you’ve developed the skills to scale Everest. It isn’t fair on many accounts; it simply is…All deserve the chance to speak and be heard and be touched. If we’re lucky, we’re touched at every station along the journey, and if nothing else, then at the end.” (137-138)

These carefully curated thoughts about her patient encounters challenge readers to critically think about the culture of blame and stigma towards those facing complex circumstances, an idea expressed succinctly by an ER social worker in the book: “When [people are] at war, the rules are different.” Dr. Harper highlights the continued ripple effects of systematic racial bias and other forms of discrimination in healthcare and beyond.

Still, the path to healing is complex. Dr. Harper herself claims no simple solution, knowing she has to navigate her own fraught path forward too. While contemplating reconciliation with her estranged father, she draws us in as readers interested in clinical encounters and how they may have an impact in our lives; she helps us understand the many complex ways patients offer invaluable wisdom too, if only providers choose to listen. In one interaction with a patient who is a veteran, Dr. Harper skillfully demonstrates how both she and the patient find liberation in acknowledging shared loss.

As an epidemiologist by training, I am reminded that there is always a human story behind the numbers. Narratives like Dr. Harper’s often transcend the limitations of quantitative metrics, such as incidence or rates, by offering a compassionate and instructive glimpse into the lives of those who are suffering. These stories raise important ethical questions about how we, as a medical and research community, should respond. In my professional and personal life, I hope to amplify these stories of oppression so they may be perceived at the same level of legitimacy as other forms of communication in order to spur organizational change.

The Beauty in Breaking is aptly titled, as the author/physician beautifully shows there is indeed beauty in the examination of the trauma one has experienced and struggled to overcome. Her storytelling brims with hope while contributing to a broader conversation about diversity and meaningful inclusion in medical training and beyond.—Brianna Cheng

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Brianna Cheng has a MSc Epidemiology from McGill University, and completed a Narrative Medicine Fellowship at Concordia University. She now works as a consultant epidemiologist for the WHO. Her writing has appeared in Intima, Journal of General Internal Medicine, CMAJ Blogs and Families, Systems & Health. She currently serves as an Editor for the McGill Journal of Medicine. @withbrianna

The Doctor’s Dilemma by Daly Walker MD

In his new compilation of 16 short stories titled The Doctor’s Dilemma, Dr. Daly Walker provides a stark portrait of physicians facing their own and their patients’ mortality, as well as navigating the practical morality of medicine —striving to do “right” in complex circumstances.  As a retired general surgeon and accomplished writer, Dr. Walker melds intimate knowledge of medicine and particularly the surgical theater with a profound insight into aging, intimacy and loss.  His archetypal character is an aging surgeon facing degradation of skill and encroaching self-doubt—changes that bring a sense of insecurity, a questioning of identity and a loss of control.  His protagonists project outward strength and heroic intent, but struggle to find grounding in fraught relationships and their identity as physicians. This noble effort—to be present and perfect for one’s patients and loved ones, while reckoning with one’s fallibility and insecurities—is familiar to any physician. But that inclination is also highly relatable to general readers coping with the demands of daily life.

 Dr. Walker writes what he knows in vivid, engrossing detail.  Most stories are set in small-town Indiana, where he was raised and worked for decades as a surgeon.  A Midwestern sensibility permeates his work in the jocular traditionalism of the surgeons we meet and in the dignity and modesty of other small-town characters. Dr. Walker brings further autobiographical elements; his characters are often veterans of wartime surgery with wisdom and relationships borne from intense, chaotic environments.

The Doctor’s Dilemma is divided in three sections: Mortality, Morality and Immortality, though these themes are often intertwined.   A group of stories present aging surgeons losing skill and confidence, or on the other side of that deterioration.  In “One Day in the Life of Dr. Ivan Jones,” we feel the confusion and disorientation of a retired neurosurgeon with dementia, as well as his physician son’s grief and struggle with his father’s loss of self. In “Old Dogs,” an aging surgeon has shaky hands and battles through a difficult aneurysm repair with scrutiny from an audience in the OR.   We are asked to consider the value of life as absolute or relative— for a hemorrhaging Jehovah’s Witness patient where transfusion might negate an eternal afterlife; for a death row inmate needing intubation in the setting of scarce resources in a pandemic ridden emergency room. In “India’s Passage,” there is a gripping account of a young woman’s death during a routine laparoscopic surgery, and the oppressive guilt felt by the surgeon as well as the extreme grief and judgment of the woman’s mother.  Ultimately there is reconciliation, but no character emerges unchanged from this tragedy.  

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Daly Walker MD is retired from a general surgery practice in Indiana. He is a graduate of Indiana University Medical school and served his residency at the University of Wisconsin. He served as a battalion surgeon in the Vietnam War. A fiction writer, his stories have appeared in numerous literary publication including The Atlantic. “Resuscitation,” one of the stories in The Doctor’s Dilemma, appeared in the FALL 2020 Intima. 

Author photo: Sally Carpenter

Stories also focus on morality with physicians trying to do the “right” thing for their patients and their loved ones and neighbors.  In “Drumlins,” an older surgeon physically marred by skin cancer surgery compassionately treats a young woman losing her breast from cancer.  In “Jacob’s Ladder,” a retired orthopedic surgeon who lives a solitary life in the woods, having lost his wife, pines for the companionship of a young woman and ultimately saves her from an abusive partner and her son from the consequences of retribution. The idea of responsibilities of son and father comes out in several stories: In “Crystal Apple,” a physician who recently lost his mother is startled by the discovery that his father is not who he thought and grapples with his origins.   In “Nui ba Den,” a surgeon reconvenes with a lover from his time in Vietnam decades later, and contemplates how the past influenced him and how his present self views the past.  Mortality and morality are intertwined in “Blood,” where a mother adamantly refused blood transfusion for her critically ill Jehovah’s Witness son who is a minor; in “Pascals Law” where a physician intubates a man on death row; and in “Resuscitation” (first published in the Fall 2020 Intima) where a man stricken by Covid is intubated though other patients may have a greater likelihood of survival. 

There is an immediacy to Dr. Daly’s imagery and language; his prose style is straightforward and deceptively simple in light of the issues he addresses, as this passage about a doctor’s thoughts after a challenging day at the hospital from “Resuscitation” demonstrates:

On his way home, Slater drove through the rain. The silent, empty streets and unlit shops conveyed an aura of apocalypse. The drops that splattered his windshield reminded him of contaminated droplets spewing from Mr. Bertini’s lungs. The car’s wipers slapped side to side. Slater had read Camus’ The Plague, and he felt like Dr. Rieux traveling through his plague-stricken city, finding it hard to believe that pestilence had crashed down on its people. He came to Shoofly, a chic bar and restaurant. Through a water-speckled window, he could see young people laughing and drinking, crowded together without masks. Their gaiety and disregard for the virus angered Slater. Don’t they care about others? He blamed them for him not being able to hug his children or sleep with his wife. He blamed them for Mr. Bertini’s illness. He wished they could see his patient and know what fighting for your life is like.

A Doctor’s Dilemma brings fresh insight and reflection to enduring themes of medical and surgical care—how to be human and have immense responsibility for one’s patients; how to balance the personal and professional knowing that perfection is impossible; and how to forgive oneself for that imperfection knowing that good intentions and hard work may need to be sufficient.— Eli Hyams MD 

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Elias Hyams MD is an adjunct associate professor of urology and a robotic surgeon at The Warren Alpert School of Medicine at Brown University in Providence, RI.  He has previously served on the faculties of Dartmouth’s Geisel School of Medicine and Columbia University School of Medicine.  He completed his undergraduate studies at Yale and is a graduate of the University of Pennsylvania School of Medicine.  His residency at New York University-Langone Medical Center was followed by a fellowship at John’s Hopkins. His academic interest lie diagnosis and treatment of cancer of the prostate.

Between Two Kingdoms: A Memoir of Life Interrupted by Suleika Jaouad

I had cancer in my early 30s. None of my peers had gone through that experience, and this was back in the early aughts, a few years before the birth of the social media industrial complex, so as I navigated this new space, I read cancer memoirs. A lot of them.

At first, I appreciated seeing my own experiences echoed on the pages – the time when the doctor fumbled the diagnosis, the time when locks of hair fell out, the time when a friend couldn’t cope so she disappeared. After a while, though, the stories I read started to have a sameness about them. A lot of doctors fumble diagnoses, a lot of hair falls out.

Twenty years later, I’m studying end-of-life narratives for my doctoral dissertation, and I’m still reading a lot of cancer memoirs. I grow pickier each year, but I’m happy to report that Suleika Jaouad finds fresh territory to explore with her well-crafted book Between Two Kingdoms: A Memoir of Life Interrupted.

Jaouad was 22 and working a paralegal gig in Paris when she learned she had acute myeloid leukemia, a disease usually found in people three times her age. She was living with Will, whom she had met in New York just a few months earlier, and their relationship forms the through line for the book as cancer shoves them past their meet-cute beginnings and moves them into the emotional turmoil of what ends up being years of treatment.

Suleika Jaouad

We get only Jaouad’s telling, of course, but she does not go easy on herself, describing her anger when he doesn’t give as much support as she wants, even as she shows us he was breaking with the effort to give what he did – especially considering he had never made any vows about sticking around “in sickness and in health.”

I squirmed under the tension around how much this provisional relationship could bear. At one point, Will, desperate for a respite from caregiving, floats the idea of joining friends for an out-of-state music festival, and we register Jaouad’s response:

“I wanted to be the graceful leukemic starlet who told him, Take as many breaks as you want, you deserve it, have a wonderful trip, my love, but there is spiritual exhaustion that comes with maintaining this kind of charade after a while. As a patient there was pressure to perform, to be someone who suffers well, to act with heroism, and to put a stoic façade all the time. But that night, I didn’t have it in me to listen to how hard my illness was on Will – how badly he needed a break when I didn’t have the option of taking a break from this body, from this disease, from this life of ours” (161).

Here is a side of cancer we never see in get-well cards.

The relationship is only one illustration of what can make cancer different for young adults; her professional life is another. Jaouad was floundering in the months after college with both yet-undiagnosed physical symptoms and with the existential questions of what do with her life.

She had fled to Paris with a vague idea of becoming a foreign correspondent in her father’s North African homeland. Suddenly, because of her illness, she was back in her childhood bedroom in upstate New York, rebalancing her fresh independence with her even newer vulnerability. There are the unexpected questions that arise that demand her to look into her future, one that’s almost impossible to foresee. Although she had barely thought about motherhood, for example, she finds herself having to remind her medical team to consider preserving her ability to have children.

Often-harrowing treatment consumes the next four years and takes us more than halfway through the book, which originated in a New York Times column. She finds a creative band of “young cancer comrades” that includes the poet Max Ritvo. Only three of the 10 were still alive by the time she writes the book.

The second section veers to another memoir device, the travelogue. She first visits India, then makes solitary sojourns to Vermont, leaving only the final quarter of the book for the 100-day, 15,000-mile U.S. road trip suggested by the book’s romantic cover photo, which shows Jaouad sitting atop a hipster-friendly 1972 Volkswagen camper van with her rescue dog, Oscar. Along the way, she visits people who responded to her newspaper columns because they connected to some part of her experience – people with serious illness, but also others, a grieving parent and a death-row inmate, who related to her narrative voice and found common ground with her illness experience.

The trip allows her physical and psychological space to reflect, leading to some of the book’s finest passages. After visiting Bret, a young filmmaker with lymphoma, she writes:

“I began to think about how porous the border is between the sick and the well. It’s not just people like Bret and me who exist in the wilderness of survivorship. As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our existence. The idea of striving for some beautiful, perfect state of wellness? It mires us in eternal dissatisfaction, a goal forever out of reach. To be well now is to learn to accept whatever body and mind I currently have” (274).

The meaningful interactions offset my sense that the trip has been manufactured for (or by) a book deal in the vein of memoirs like A.J. Jacobs’ My Year of Living Biblically and Elizabeth Gilbert’s Eat Pray Love; Gilbert even provides Jaouad with a book-jacket blurb. The feeling was only heightened when I realized she actually did the road trip in a borrowed old Subaru; the van was bought long afterward, as a reminder of one she saw during the trip, as she notes on the last page of the epilogue.

I wish her publisher had resisted this urge. The golden-yellow van makes a great photo, of course, but the quest it suggests plays neatly into conventional hopes for what the psychotherapist Kathlyn Conway calls the triumph narrative, where illness only makes us stronger and wiser. In fairness, Jaouad herself follows this route to close the book, declaring that she treasures her heightened awareness of her finitude even if her early adulthood was “wrenching, confusing, difficult – to the point of sometimes feeling unendurably painful … I would not reverse my diagnosis if I could. I would not take back what I suffered to gain this” (340-41).

This may be true, but the reflection comes together in less than two pages, suggesting her feeling during an NPR appearance when she was “determined to end the interview on a strong note” (135).

And then there’s the book’s subtitle phrase “life interrupted,” no doubt meant to remind readers of her newspaper column of that same name. The allusion to Girl, Interrupted, Susanna Kaysen’s 1993 memoir of mental illness is especially clumsy coupled with the reference to Susan Sontag in the main title – if not as profound as Sontag, Jaouad’s writing certainly stands on its own. More significantly, however, the phrase implies that her illness was not part of her life. Her book tells a different story.—Cherie Henderson

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Cherie Henderson

Cherie Henderson is a doctoral candidate in communications at Columbia University. Her dissertation explores stories told by younger adults with terminal illness, and what we can learn from them about the cultural models of behavior for the ill and dying. She has also worked at the intersection of death and humor. Henderson, who has initiated and led writing workshops for patients at Memorial Sloan Kettering cancer center, holds a master’s degree from Columbia in narrative medicine and was a faculty associate, fieldwork supervisor and post-graduate fellow in that program. Earlier, she was a staff editor and reporter at The Miami Herald and The Associated Press. She graduated from The University of Texas at Austin in journalism.

You Will Never Be Normal by Catherine Klatzker

An instruction manual on falling apart to come together again, Catherine Klatzker’s frank memoir, You Will Never Be Normal, confronts the darkness with the enlightenment of telling. Klatzker, a retired pediatric ICU nurse of 22 years, weaves together a lifetime of repressed trauma and abuse with the laser-sharp humanity of an attentive RN.  The story—and the author’s often wrenching rendering of it in flashback vignettes—is not the typical clinician-as-patient narrative but one that engages the reader to join her as she makes her way towards healing. 

The embodied experience of an adult survivor of sexual and emotional abuse is one of shame, panic and confusion, and Klatzker tells it all with grace, sparing little in her exploration of the physiological manifestations of her own trauma such as insomnia and incontinence. We feel her suffering but also her professional detachment: It’s as if she’s conducting a thorough patient history of her own past. 

Catherine Klatzker is a memoirist, poet, wife, mother, grandmother, friend, meditator, a retired pediatric ICU RN of 22 years, and a member of the Authors Guild. Her work has appeared in Atticus Review, Intima: A Journal of Narrative Medicine, Emrys Journal, Lime Hawk Journal, The Examined Life Journal, Tiferet Journal and in mental health anthologies. Originally from the quad cities of Illinois, she now lives in southern California with her husband, delightedly nearby their children and grandchildren. Photo by Baz Here

Readers become familiar with the embodiment of her triggers as she welcomes us into the wounds of her intimate relationships. Klatzker’s family becomes our family, her partners our partners—and her demons become ours. “No one knew the extra layer of experience I brought to my own pain, to my own body, filtering my experience of myself,” she tells us. To cope, Klatzker mastered the art of dissociating into “parts,” or what she describes as “going away,” sometimes happening while she was at work in the hospital or at home caring for her child.

Learning about the causes and triggers of Klatzker’s Parts (or what is later labeled Traumatic Dissociative Identity Disorder) is a heartbreaking revelation throughout the memoir. “What I knew was gut-knowledge, stored in my body,” Klatzker states, and that knowledge unfolds in devastating and plain language, a subconscious realization oftentimes unfolding mid-sentence. Her Parts often take hostage of her mind at random moments, coming into play when she’s driving or during emotional interludes with her husband. Fragmented memories emerge in  the many versions of herself she meets and refines over the years. 

In unpacking precarious relationships, deaths, and more, Klatzker’s relationship with her psychotherapist is one that models seeing her as a whole person and not just the sum of her parts. “He spoke in language all my parts would understand, trying to get the same message across to all of us, so there would be no gaps.” The deep work they do together inspires readers to reflect on the way healing from trauma is rarely linear and never truly ends. Yet there is a sense of resolution to Klatzker’s bleak house of pain: In telling her story, she confronts her past and envisions the way to move forward. In the end, the book’s title takes on new meaning: You Will Never Be Normal is not a life sentence but instead an acknowledgement of difference and an acceptance of it.— Angelica Recierdo

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Angelica Recierdo works as a Clinical Content Editor at Doximity in San Francisco, CA. She received her Bachelor of Science in Nursing from Northeastern University and her M.S. in Narrative Medicine from Columbia University. Angelica was also a Global Health Corps Fellow in 2016-17. She has worked at the intersection of health and writing/communications, specifically in the fields of healthcare innovation, health equity, and racial justice. Angelica is a creative writer, and her work can be found in Intima: A Journal of Narrative Medicine, Literary Orphans, HalfwayDownTheStairs and The Huntington News, among others. Her essay “Coming Out of the Medical Closet” appeared in the Spring 2014 Intima.

A Lab of One's Own: One Woman's Journey Through Sexism in Science by Rita Colwell, former director of the National Science Foundation

By cleverly playing with the title of Virginia Woolf’s pivotal feminist essay, “A Room of One’s Own,” Rita Colwell informs us what this book will be about on its very covers. Colwell is a pioneering microbiologist and the first woman to lead the National Science Foundation. She is a Distinguished University Professor at both the University of Maryland and Johns Hopkins University’s Bloomberg School of Public Health. A professional rather than a personal memoir (although for a passionate scientist like Colwell, the two are one and the same), A Lab of One’s Own chronicles and humanizes the female experience in the scientific community over the last half a century.

There is much to admire in this account, co-authored by science writer Sharon Bertsch McGrayne. Riveting chapters describe Colwell’s groundbreaking fieldwork on cholera in Bangladesh, while the exciting role she played in the CIA’s efforts to find the person behind the Anthrax letter attacks in 2001 makes for a thrilling read. Still, it is Colwell’s well-documented female experience of the pursuit of science that elevates the book into a uniquely excellent read.

I was well aware of the fact that what we today easily identify as sexism was “simply the way things were” some fifty years ago, but I must confess I was truly shaken by reading about how far and deep this sexism went. I was distraught to find, in the very first chapter, a young, driven student being told by the late Austrian-born microbiologist and professor Henry Koffler: “We don’t waste fellowships on women.” I’m not certain what I expected, but I did not expect to read a story in which another scientist Robert Steiner simply didn’t allow Colwell to finish her talk at a symposium.

Nor did I expect to read how colleague Einar Leifson yelled at Colwell over post-conference dinner, asking loudly in front of the entire room whether her husband knew where she was and why she wasn’t at home and pregnant. I most certainly did not expect to read that Francis Crick, one of the men who claimed the Nobel Prize for the discovery of the molecular structure of DNA—with no acknowledgement that a photograph taken in chemist Rosalind Franklin’s lab was instrumental in the discovery—casually grabbed molecular biologist Nancy Hopkins’ breasts when they first met. Then there was the shock of reading that Hopkins, after having been a tenured professor, wasn’t allowed to teach a genetics class based on her own discoveries, but instead was asked to teach the material to her male colleagues who would lecture instead. The reason for the switch? She was told male students wouldn’t believe any science explained to them by a woman.

Two aspects of this memoir are striking.

First, Rita Colwell has no fear when it comes to name dropping. No matter who they are, how well-respected, how highly ranked, alive or dead, the men who were part of the agenda to keep women out of science are identified and quoted. Some, like Koffler, for instance, even had the opportunity to deny or at least apologize for their actions. (Koffler, who went on to be University of Massachusetts Amherst Chancellor, refused.)

Secondly, the memoir lacks bitterness. Colwell tells the story of her passage through the system, warts and all. But her tone is not vindictive. If anything, she uses every opportunity to focus on people, both men and women, who played key roles both in helping her personally, and in changing the world of academic science into a more fair and inclusive one. She never dwells on her achievements or toots her own horn: Instead, she dedicates pages and pages to other women who have themselves overcome many obstacles and, despite men, managed to make incredible contributions.

Rita Colwell

What’s fascinating about A Lab of One’s Own are the inside stories of how monumental events unfolded. She explains how the Women’s Equity Action League (WEAL) managed to file a class action suit against the University of Maryland as well as 250 other American colleges for sex discrimination, leading to the Educational Amendments Act of 1972. Focusing on the factual, strengthened by her personal observations, Colwell gives detailed accounts of landmark moments in gender equality, including the passing of Title IX, the phenomenon of the “revolving door” and the “Birgeneau Bump.”

Although the fight against sex discrimination and the gender pay gap is not over, the memoir ends with positivity. The book is at times quite a dense text, packed with names, titles, years. Colwell documented the careers of dozens of female scientists alongside her own, giving each one as much space on the page as she gave herself. As a true feminist, Colwell uses the gravity of her platform to give others a voice. A Lab of One’s Own is essential reading for all genders; however, women in the sciences will find the history especially eye-opening. —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).

The Psychiatric Biography: A Review of "Staring Night: Queen Victoria's Late-Life Depression" by Robert Abrams

Interest in the royals may well be at an all-time high, with the popularity of the Netflix series “The Crown” and attention to the two-hour CBS interview by Oprah Winfrey of Prince Harry and his wife Meghan Markle, who caught the Palace off-guard last fall when they announced they were stepping back from their royal duties. Yet a few months later, news about another royal appeared in the form of Staring Night, an insightful new biography by psychiatrist Robert Abrams, who chronicles Queen Victoria’s final five months of life. In it, Dr. Abrams writes a biography that not only draws on historical documents but understands these through the lens of contemporary psychiatry, medicine and psychoanalysis. Staring Night: Queen Victoria’s Late-Life Depression deserves as much attention as today’s current entertaining but less insightful royal coverage.

Robert C. Abrams, MD, a graduate of UC Berkeley and the Icahn School of Medicine, practices psychiatry at Weill Cornell Medicine, where he has received awards for clinical teaching as Professor of Psychiatry in Medicine. Dr Abrams' research has been focused on old-age psychiatry, including personality disorders, depression, suicidality, and the humanities. Staring Night stems from his lifelong interest in 19th and 20th-century English history and from a series of published papers on the last years of Queen Victoria's reign.

Initially, when approaching it, I wondered if another biography of Queen Victoria was needed—there are no less than fifty. A quick scan of these accountings shows that her late-life decline was either ascribed to a relapse of her protracted mourning for Prince Albert, or just the decline of old age. Abrams, a geriatric psychiatrist with a deep knowledge of British history, lays out the case for a severe late-life depression.

This fact alone is of interest, but several factors makes this book unusually compelling: a closely observed end-of-life decline; the presentation of this decline in its historical context; and finally, a biography written with the utmost attention to language—sentence after perfectly balanced sentence flows.

The main material source is the Queen’s journals, which she assiduously wrote through her life. “The Queen’s accounts of her last five months of life present an often-moving ‘Book of Pain,’ in which her physical decline and person losses are described, elaborated, and lamented,” states Abrams. These last journals begin 17 August, 1900, ending on 13 January, 1901, nine days before her death. We learn of the day-in and day-out last concerns of the Queen. She struggles to maintain her official functioning, yet a lady-in-waiting returns to service after a two-month absence and notes, “The Queen is growing very old and feeble, and each time I see the change, even since August.”

The family made major edits to her writing. Abrams notes, “Whatever may have been lost the overall style and authenticity of the Queen’s writing are likely to have been preserved . . . and appear to have survived the conflagration of the original volumes.” He later writes, “Within the pages of her Journal she felt a freedom to express her genuine self . . . and in so doing she was able to find an authentic literary voice.”

The Queen’s decline is not without some rallies. She rises to official duties: “At that Council meeting, the Queen masterfully oversees the elaborate protocol involving the exchange of seals required by changes in the Cabinet.” Abrams notes this is not unusual for the course of a vascular depression, and moves between resurrecting the Queen’s history, as an historian, and understanding it as a contemporary geriatric psychiatrist. And in this, among many insights, Staring Night makes the case for the medical and/or psychiatric biography. While this genre of biography might maintain too narrow a focus, Abrams’s biography is justified on every page. He writes as if we were in attendance and witnessing the progressive demise. These five months are a window into a universal condition (late-life depression) and its “Victorian” presentation.

Abrams selects details that bring to life the court. Lady-in-Waiting Marie Mallet, a confidant of the Queen, brings her young son for a visit:

Victor danced by my side shouting, “Go to Queen, Go to Queen.” Once in the Queen’s sitting room he focused immediately on a portrait of the Prince Consort’s favorite greyhound, “Bootiful dog.” When he was presented with a small gift, he replied: “Thank-oo kind Queen.”

The documentary source for the last nine days become the notes of Sir James Reid, her physician. This material is more clinical and provides a transition to the final chapters, which include more contemporary science on late-life depression. Abrams notes, “Sir James Reid understood that Queen Victoria was depressed, but he did not fully appreciate the contribution of depression to her decline.” We are left with a glimpse into the doctor-patient relationship and the importance of positive transference and hope. Although the biography focuses on just five months, we close the final chapter as if we’ve lived through the saga ourselves.

I left this book saddened. The end of a life is difficult. That life has to end is difficult and must be confronted again and again. In hindsight we are often tempted to think—had a loved one died in a different medical era . . . This biography accomplishes something similar to Atul Gawande’s Being Mortal and Paul Kalalithi’s When Breath Becomes Air—all three express a profound experience of the end of life, a more deeply felt appreciation of life, and a sense of humility about medicine’s capacity, whether in the Victoria era or in our contemporary days.—Owen Lewis

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Owen Lewis

Owen Lewis is the author of three collections of poetry, Field Light (Distinguished Favorite, 2020 NYC Big Book Award), Marriage Map and Sometimes Full of Daylight, and two chapbooks. best man was the recipient of the 2016 Jean Pedrick Chapbook Prize of the New England Poetry Club. His poetry has appeared in Nimrod, Poetry Wales, The Mississippi Review, Southward, The Four Way Review and Stay Thirsty Poets. He is a professor of psychiatry at Columbia University, where he teaches Narrative Medicine in the Department of Medical Humanities and Ethics.

Departure from the Darkness and the Cold: The Hope of Renewal for the Soul of Medicine in Patient Care by Lawrence J. Hergott, MD

The balm for this difficult year can be found in the pages of Departure From the Darkness and the Cold: The Hope of Renewal for the Soul of Medicine in Patient Care (Universal Publishers) by Lawrence J. Hergott, MD. This collection of essays and poems seeks to renew the “soul of medicine,” constantly being threatened by competing pressures commodifying medicine. Both a retreat and a back-to-basics call for engagement, Hergott’s poignant writing confronts the most unifying themes of humanity: purpose, loss, connection and more. 

In the essay “The Time of the Three Dynasties,” Hergott reckons over the tragic death of his farmer brother-in-law, comparing the similarities of his hard labor and work/life imbalance to a life in medicine. The lives of him and his medical colleagues are prestigious but not free from heartbreak: a letter from a neglected daughter, a distant spouse, never making it home before the 10 p.m. news are the emotional fall-out from a life of clinical commitment. He confronts fellow physicians with difficult questions such as “How much work and reward are enough? How much is too much? Who has control? Do we know the real cost? Who pays the price?” 

In the tender poem “Loving Her,” a patient visits his late wife’s grave daily. The visit is more event than chore, more conversation than monologue. This is a clinical encounter with “clinical concerns aside,” where a physician is simply happy for his patient and the content days he spends “near her, or what was left of her, in the ground and in his heart.” The poem is a testament to really listening and knowing who and what is important to a patient, a person with a life outside the exam room that a physician can only begin to fathom. 

Lawrence J. Hergott, MD, author of Departure From the Darkness and the Cold: The Hope for the Soul of Medicine in Patient Care

Similarly, in “The Absence of Something,” the grief and loss patients experience are no different than that experienced by physicians. Hergott is able to relate to his patients’ losses because he too has suffered an incalculable one—the death of his son. “While the circumstances of our loss are uncommon, our suffering is not extraordinary.” He has learned of the “different kinds of absences,” like the loss of personhood in dementia or stroke, committing to always attend to these absences like physiological maladies. 

The author delivers hope and reassurance to the surgical patient in the poem “A Small, Sacred Space.” He weighs the post-surgical outcomes of normalcy, complication, and tragedy all with loving promise. “You will wake up to no difference between who you are and who you are.” A humanistic take on the informed consent conversation, he insists, “You will not be alone. You will not be apart.” Rather than instilling false hope, Hergott offers love no matter the result. 

In documenting his own lessons and heartache in medicine and in life, Hergott offers a manual of wisdom to fellow physicians on how to humanize themselves, their patients and one another. Each poem and essay is a portal into how to frame issues in medicine in ways that can rejuvenate and tackle the burnout that is so widespread to the profession. Medical students, trainees and seasoned physicians alike can all encounter self-transformation in this poet-physician’s timely collection.—Angelica Recierdo

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Angelica Recierdo

Angelica Recierdo works as a Clinical Content Editor at Doximity in San Francisco, CA. She received her Bachelor of Science in Nursing from Northeastern University and her M.S. in Narrative Medicine from Columbia University. Angelica was also a Global Health Corps Fellow in 2016-17. She has worked at the intersection of health and writing/communications, specifically in the fields of healthcare innovation, health equity, and racial justice. Angelica is a creative writer, and her work can be found in Intima: A Journal of Narrative Medicine, Literary Orphans, HalfwayDownTheStairs and The Huntington News, among others. Her essay “Coming Out of the Medical Closet” appeared in the Spring 2014 Intima.

In Two Voices: A Patient and a Neurosurgeon Tell Their Story by Linda Clarke and Michael Cusimano

Linda E. Clarke

Michael Cusimano

“I’d ask him if it’s normal to still be thinking about it this far on.”

So goes the central question and literary impetus for In Two Voices: A Patient and a Neurosurgeon Tell Their Story (Pottersfield Press), writer Linda Clarke’s memoir of her life as a clinical ethics educator and (current) health humanities practitioner, patient and “healthy” body, co-written with the surgeon who removed the colloid cyst that was in her third ventricle. The structure of the book is unique: Clarke explores the question of whether (and how) normal life returns after a traumatic medical event through retrospective emails with her doctor, Michael Cusimano, twelve years after her surgery. By narrating the dual perspectives that co-construct and police the normalcy of medical identity, In Two Voices also brings to life the co-existent reality—and the shame and fear—that can continue to shape both doctors and patients, even after surgical success.

The premise of In Two Voices is exactly right, from our perspective as scholars and activists in the medical humanities: Love, respect, trustand patience are what is needed to further the professional work of maintaining ethical doctor-patient relationships. But if the essential question of a book review is Would you recommend this book?, the answer when writing to the readers of intima is a bit tricky. After all, the field of medical narrative is no longer exploding; in fact, it has supernova-ed. Two decades after the narrative turn in the humanities toward stories about health, illness and the clinical encounter, how do you determine whether a work, however heartfelt, provides revelations and experiences worth the attention and time of those in the field?

That said, taking a formal cue from In Two Voices, we believe we can use the co-authored narrative architecture Clarke and Cusimano construct (i.e., curated email exchanges) to model or “aesthetically enact” (as we have dubbed it in public health advocacy contexts) a more robust methodology for evaluating and triangulating the reliability (and unreliability) of co-created medical narratives. In our collective ‘unreliable’ review in three voices, we hope to not only provide a lens for scholars and practitioners to read In Two Voices (and other patient memoirs) but all of the co-authored narratives that circulate in hospitals, doctors offices, and scholarship in the medical humanities.

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So before we get into the weeds of narrative theory and public health, let’s start with that first Aristotelian question of literary criticism: How did In Two Voices make you feel, and what formal techniques led to those feelings?

Amanda Ahrens: There is an openness that exists between Clarke and Dr. Cusimano throughout the story. Because of this, In Two Voices doesn't hold back anything. It does not spare any detail or emotion. The story showcases the setting and the people in a way that puts the reader right in the middle of each scene. Most importantly, it simultaneously puts you in the minds of Clarke and Dr. Cusimano.

Steven Pederson: As Clarke begins talking about the impetus for co-writing the book with Dr. Cusimano, she explicitly draws attention to the fact that “the personal experience of the surgeon usually remains unknown” in the narration of medicine. Right up front she is emphasizing the need for narrative structure that accounts for the experiential context of the practitioner as well as the patient. This dual narration is carried out in a constant switch between different segments of both Clarke’s and Dr. Cusimano’s narratives in ways that allow them to parallel each other, contrasting Clarke’s “Opening” with Dr. Cusimano’s “Where I Started”; Clarke’s “Waiting for the Surgery” with Dr. Cusimano’s “Getting Ready” and so on.

Ok, let’s explore further. What is intriguing about the use of multiple narrators in the book is what is essential to understand about all medical narratives: That they are co-created stories by people with different points of view, or what narrative theorists would call unreliability. Let’s start with the first “axis of unreliability”: The Axis of Facts. How does In Two Voices illustrate the shared mimetic reality of its two characters, or doctors and patients in general?

Ms.Ahrens: The book is about the pathways of communication for doctors and patients alike. Usually, in both medical fiction and medical documentation, these are separate paths that are walked alone. But In Two Voices shows that this solitude no longer has to exist: Medical narratives can be a converging journey in which the patient and doctor walk together in a loving (human, but professional) relationship built on respect. By putting the voice of the doctor alongside that of the patient, the book closes the gap typically assumed between two forms of reality: on the one hand, the subjective pains and transformations of the patient, and on the other, the objective expertise and procedures of the doctor. Here, doctor and patient inhabit the same mimetic plane—one of uncertainty, preparation and the shared anxiety of doing well enough for each other.

So the story deals explicitly with how, along the Axis of Facts, seemingly unreliable narrators (e.g., doctors and patients) can co-construct a shared and equitable medical reality. Let’s turn next to the second way narrators can be unreliable: The Axis of Perception. How did Clarke or Cusimano’s different backgrounds, both professional and personal, shape their perception of their shared story?

Mr. Pederson: Their backstories vividly demonstrate the way their different forms of trauma shaped them before they encountered each other as patient and surgeon. As Clarke says early on, “Illness has always been a member of my family.” (Her first lesson in helping care for her ailing mother was learning “to put up with, to accept, to stand by.” In her fraught relationship with her mother and in the wake of her father’s sudden illness and recovery, Clarke identified the belief that made her ill-prepared for the possibility of being a patient: namely, the idea that “‘the good patient’ gets better,” that is, gets over their issue and moves on with life. Clarke finding herself in a position to have risky surgery puts this attitude to the test.

Ms. Ahrens: The critical moment at the beginning of Clarke’s story is her “shock” at the realization that she was a patient. The denial that followed her mixed with the urge to prove she was a “good patient” made for an intriguing, and often unheard, perspective. On the other end, Dr. Cusimano had to fight his uncertainties as well as time itself. And pressures that come with time when dealing with life and death decisions affect the perspectives of everyone involved (the patient, nurses, and administrators) and this pressure can cave in on the doctor and feed the fear inside of him/her.

So we have seen how the book deals with unreliability in terms of facts and perception. The final calculus of unreliability is the Axis of Storytelling: What audience values or ideologies make the story affirming or challenging? To turn this axis slightly on its head, let me ask you this: Could we recommend this book to readers who are already well-versed in the literature of medical narratives? What about a general audience?

Mr. Pederson: While the focus is clearly the story of how Clarke’s and Dr. Cusimano’s lives intersect and impact each other, it would have been interesting (though not absolutely essential) to see the ideas laid out in the Forward expounded upon in an appendix or epilogue. Case in point, in the Forward, Dr. Brian Goldman gestures toward the increasing integration of humanities in medical education:

Medical humanities is giving people who study and work inside the corridors of medicine an opportunity to express their thoughts and feelings beyond a sterile recitation of signs, symptoms, and laboratory findings.

In spite of this exposition, the book leaves aside areas of concern like the epistemological norms of narrative medicine as a discipline and steps to be taken in academic institutions that might allow medical humanities courses to be offered alongside traditional forms of medical knowledge. And while the narrative content of the book itself offers a vivid example of the co-creation of narrative between patient and doctor, it lacks the plurality of narratives (i.e., other doctor-patient stories) that might provide a broader perspective on what a narrative medical framework can consistently accomplish across contexts.

Ms. Ahrens: There is a certain feeling of empowerment a person feels when someone shares their journey of suffering. Through every (retrospectively added) ellipse on the page, every comma added for emphasis, and every descriptor used to accent a word, In Two Voices puts the roller coaster drama of a medical narrative (even one you know turns out all right) into your heart and mind. The reader sees the pain, shame and fear the two of them feel, but more importantly the reader understands how, on a deeper level, they relate through shared trauma and insecurity. This story creates an empathy for the patient and doctor as a singular narrative unit. Between every high and low of their email correspondence is a moment of pause that allows you to evaluate the deeper meaning of the story. There is a significant realization that they both—patient and doctor—had hopes and demons, and how those bear on the stakes and success of their story. In Two Voices shows the humanity often lacking in the medical field (a world ironically eclipsed by the inner workings of the human anatomy). This story touched, and changed both Clarke’s and Dr. Cusimano’s lives, and it can also touch and change the reader's.—Aaron McKain, Amanda Ahrens and Steven Pederson

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Dr. Aaron McKain is the Director of English, Communication, and Digital Media at North Central University in Minneapolis, Minnesota and a scholar focused on narrative theory and public health.

Dr. Aaron McKain is the Director of English, Communication, and Digital Media at North Central
University and a scholar focused on narrative theory and public health.

Amanda Ahrens is an
undergraduate at North Central University, studying the use of narrative and art to facilitate understanding of medical narratives.

Steven Pederson is a curator-critic and the Director of Communications for the Institute for Aesthetic Advocacy, a Minneapolis-based arts collective focused on public health.

The IAA’s most recent exhibit on medical narrative “Contaminated,” which uses the methods outlined in this review as a mode of art curation, can be viewed at https://www.instituteforaestheticadvocacy.com/

Amanda Ahrens is an undergraduate at North Central University, studying the use of narrative and art to facilitate understanding of medical narratives.

Our methodology for taxonomizing medical narratives in terms of unreliability is based on the “Chicago School” model of rhetoric, primarily the work of James Phelan. For a detailed description of the method, including more thorough definitions of the “axis of unreliability” that follow, see “Somebody Telling Somebody Else: A Rhetorical Poetics of Narrative” (Columbus, OH: Ohio State Univ. Press, 2017).

Steven Pederson is a curator-critic and the Director of Communications for the Institute for Aesthetic Advocacy, a Minneapolis-based arts collective focused on public health. The IAA’s most recent exhibit on medical narrative “Contaminated,” which uses the methods outlined in this review as a mode of art curation, can be viewed at https://www.instituteforaestheticadvocacy.com/

For Pedersen and McKain’s use of unreliability and aesthetic enactment as a method for public health advocacy on narrative medicine, see “Aesthetics, Ethics, and Post-Digital Health Advocacy” in PostHuman: New Media Art 2020 (Seoul, South Korea: CICA Press, 2020).

Take Daily As Needed: A Novel in Stories by Kathryn Trueblood

Novelist Kathryn Trueblood. The author teaches at Western Washington University in Bellingham, Washington. Like her previous works The Baby Lottery and The Sperm Donor’s Daughter and Other Tales of Modern Family, feminist themes feature prominently in Take Daily as Needed, which highlights the politicized and gendered dimensions of caregiving. Photo by Suzanne Bair

Are we capable of loving and being loved, in sickness and in health? Writer Kathryn Trueblood poses this universal question to readers in her novel Take Daily As Needed (University of New Mexico Press, 2019). The novelist, who teaches at Western Washington University in Bellingham, Washington, uses a series of short stories to form her engaging narrative about Maeve Beaufort, a multitasker who struggles to care for her ailing parents and rebellious growing children, all while coping with her own demanding work schedule and crumbling marriage. A diagnosis of a Crohn’s disease complicates her life even further; yet Maeve, who has a dark sense of humor and steady resolve, navigates these daunting challenges like any one of us—imperfectly, and best as we can. That resolve, she reminds us, is in itself worth celebrating.

Part of what makes the novel so relatable is its honest portrayal of caregiving. While there may be a certain nobility involved with serving others, Maeve demonstrates there is nothing glamorous about its emotional toll. Although she is perceived by her parents as “the good child,” Maeve still feels inadequate and frustrated, even when dutifully going to lengths such as moving her mother into her house. She realizes she has no reprieve from this underlying current of tension in everyday life, where she must be “attuned to the brittle, vigilant to the tone of taking slight”—or in death, which is described by her mom as “...the final abandonment.” What we learn is this: Caregiving is not a singular interaction; it is an ongoing commitment to honor our loved ones, no matter how difficult times may be. As a young caregiver and previous disability support worker myself, this message resonated with me. Caregiving involves bearing witness to life.

In one rare moment following her father’s death, Maeve allows herself a moment of self-compassion.“I bow, understanding for the first time that no matter what messed-up things I do in my lifetime, no matter whose feelings I hurt in the long hurdle towards perceived happiness, what will count is the practice of good I undertook everyday, the small hope I carried into each exchange, the desire somewhere, in all of my failings, to have proved useful.” Here, Maeve acknowledges the conflicting feelings of love and pain that are only reconciled by her intentions to do good. Sometimes, that is enough.

As a parent, she similarly experiences this complicated dynamic with her two children—how, at the peak of our exasperation, we often only have our love to offer. After another visit to the psychiatrist about her young son’s ADHD, Maeve is so overwhelmed about the medicalization of his future that it is all she can do to reassure her son, if not herself. “‘Norman,’ I say, clasping his hands with my own to quiet them, ‘I love you.’ ‘I know,’ he says, looking intently into my brown eyes with his blue.”

Like Trueblood’s previous works The Baby Lottery and The Sperm Donor’s Daughter and Other Tales of Modern Family, feminist themes feature prominently in this novel, highlighting the politicized and gendered dimensions of caregiving. Maeve is conscious that her husband, Guy, is increasingly disappointed in her lack of domestic flair. Although he lauds gender equality, she is expected to take on extra child rearing and housekeeping duties and gets questioned for wanting to pursue further schooling to become a paralegal. This character dialogue reveals more than the dissolution of Maeve’s marriage. Indeed, it raises questions about whether modern society has kept pace with the needs of working mothers so they do not have to compromise their professional or intellectual pursuits.

Gender equality is a universal issue, and this novel shows it has further intergenerational implications. Maeve struggles to balance her own parental instincts while recognizing her daughter’s growing independence. In one instance, the past meets the present when Maeve’s own unresolved trauma leads her to cut a hiking trip short with her daughter after being spooked by male strangers. Although progress has been made with birth control policies and awareness about sexual assault, there continue to be perplexing modern challenges to navigate, such as digital harassment. Readers gain insight into the intertwining complexities both parents and children face making and unmaking mistakes together.

Take Daily As Needed may focus on caregiving and parenting, but its mature themes appeal to readers from any generation because ultimately, the novel is a meditation on relationships and the many ways they erode and sustain us, for better or for worse.—Brianna Cheng

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Brianna Cheng is a graduate of McGill University, where she obtained her Master's of Science in Epidemiology. She also completed a Narrative Medicine Fellowship at Concordia University. Her work has appeared in the Journal of General Internal Medicine, CMAJ Blogs, and Families, Systems & Health. She currently serves as a section editor for the McGill Journal of Medicine. @withbrianna

On Vanishing: Mortality, Dementia, and What It Means to Disappear by Lynn Casteel Harper

Lynn Casteel Harper, author of On Vanishing: Mortality, Dementia, And What It Means to Disappear (Catapult 2020)

Hospital chaplaincy was once called an “absent profession.” While chaplains have always been present at the bedside of their patients in moments of greatest need, they were overlooked in the research literature—shunted off-stage while physicians, nurses, social workers, and other allied health professionals sought to demonstrate their own unique takes on person-centered care.

That began to change about ten years ago when professional chaplaincy associations moved to enhance the research literacy of their members. Chaplains began to write and publish more case histories. Using qualitative research methods and in language borrowed often from narrative medicine, chaplains found their voice.

Two books, where chaplains write about their clinical practice for more general audiences, allow those voices to be heard. Kerry Egan’s On Living (Riverhead 2017) is a collection of stories from hospice about what kinds of thoughts and feelings bid telling near the end of life. Lynn Casteel Harper’s prophetic new book On Vanishing: Mortality, Dementia, And What It Means to Disappear (Catapult 2020) seeks to find a new way of approaching dementia beyond usual stigmatizing polarities of light and darkness, and metaphors of dimming and fading away. Harper is searching, she says, “for new, more robust renderings of dementia that expand our vision beyond progressive vacancy and dread.”

Harper is a Baptist minister, nursing home chaplain, and essayist. She calls herself an enthusiastic reader and learner, not a scholar. She was trained in both academic theology and clinical pastoral education, and her specialty is dementia care. Harper writes beautifully of the patients she has cared for over the years. They include memorable characters like Dorothy, the 103-year-old former stage assistant to Harry Houdini and last surviving member of his show, who took Houdini’s secrets to her grave. Harper also writes of her own personal connection to dementia in her relationship with her grandfather, Jack.

The author weaves her tales like a novelist; she paints theology vividly, sparingly, like a pointillist. Read anew the original abrupt ending of Mark’s gospel, the earliest, briefest and most urgent of gospels. Glimpse Jesus disappearing behind a pile of laundry fallen to the ground—kind of like how Houdini made Dorothy disappear on stage behind his curtain, and like each of Harper’s patients who disappear behind the veil of gradual memory loss. Then stand back to see how we too, temporarily able-bodied as we may be, are all… vanishing, in different ways, each of us at different speeds and stages. And so, Harper asks: What does it mean to vanish well?

Dementia afflicts an estimated fifty million people in the world today. Harper notes that nearly six million people in the United States are living with Alzheimer’s, which makes it the nation’s sixth leading cause of death. As we fear the loss of self that goes with memories lost to dementia, we might wonder: Who will search for us as we lose ourselves?

In the face of loss, we grasp at our repertoire of stories. We are the stories we tell. And we relax our grip perhaps only when a trusted story holder comes along who can help us narrate our stories, the long way, by letting them breathe. As a chaplain, Harper knows empathically how to “hold space” for others, to listen and to see life differently. “In Christian mystical traditions,” she says, “darkness is integral to the soul’s journey—a positive spiritual good, not a malevolent force to be eradicated or exorcised.”

On Vanishing helps us understand what’s at stake in healthcare systems that risk prioritizing data collection and cure over medicine as unfolding story. Dire stakes indeed appear when some diagnosed with a frightening dementing illness like Alzheimer’s might choose the swift surety of medically assisted death, or feel pressured into it, over continuing life’s journey down a most unpredictable road ahead. If there is to be more to the story, Harper shows us how “vanishing is still life,” filled with sometimes startling surprises worth telling, hearing, and experiencing together.—Robert Mundle

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Robert Mundle

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). Discover more about his work and books at robertmundle.com

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman

The budding of feminist activism in recent decades has accelerated the rise in literature that tackles the topic of the female experience. Illness memoirs written about, by and for women are a growing genre, and Abby Norman’s 2018 book Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain makes a powerful contribution to the field. Telling a personal story about battling not only an illness but the entire medical system, Norman explores topics relevant for all, but especially for those who are ill.

The book is a brilliant blend of memoir and theoretical text, telling a compelling story of an unorthodox childhood and a life suddenly disrupted by a debilitating pain nobody believed was real. The story follows Norman growing up neglected by an anorexic and bulimic mother, absent father and abusive grandmother. As a teenage girl she becomes emancipated and aims to reinvent herself as a professional dancer while attending Sarah Lawrence College. Her ambitions are thwarted by episodic pain that becomes a permanent ailment controlling her life. There is a futile surgery and an endless string of hospital visits, during which she faces skepticism, doubt and dismissal by the medical staff, only to finally be diagnosed with endometriosis. Norman’s quest for answers leads her down an unlikely path of working in the healthcare system and eventually becoming a science writer and advocate for women with endometriosis.

Endometriosis, often regarded as an illness of the uterus due to the synchronization of the symptoms with the menstrual cycle, is one modern medicine has been aware of for centuries. Even so, there is still no clear cause for the illness, what influences its development or how to cure it, due to lack of research and the scarcity of information on the subject. What we do know is that the condition is estimated to affect one in ten women and can take up to ten years to diagnose. The main reason for the detrimentally slow diagnosis: Women seeking help aren’t believed to be experiencing the ailments afflicting them. The first assumption is that the patient is having psychological issues reflecting her inability to cope with the natural pain of menstruation. It is baffling that an issue as common as endometriosis is greeted with so much skepticism and appears to be of little to no interest to medical scientists.

Abby Norman. Discover more about this writer’s work here

Abby Norman asks the question “Why is this so?” She’s not alone in wondering, but what sets her apart is her creative way of illustrating the issue in an engaging, easily understandable text. Norman opens up many chapters with a comprehensive overview of particular medical cases or bigger medical studies dating back to the 19th century, effectively illustrating the history of the female patient. From illness explained as hysteria to the exclusion of women from medical trials and drug testing, the narrative illustrates that medicine is not only sexist but also how that sexism is often lethal for the female patient. Norman flawlessly transitions from factual to creative writing, using personal reflections and commentary as ways to segue into telling her own story.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain is a memoir that educates as much as it entertains. The riveting stories of the author’s unusual life are cunning bridges between important analyses of the complex relationship between Western medicine and female patients. An interesting read for anyone wanting to be challenged by literature, the memoir offers significant relevance for women suffering from illnesses of reproductive organs. Its involving prose offers comfort as well as specific information empowering women to find their voices, take control of their illness and demand medical justice. —Alekszandra Rokvity

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Alekszandra Rokvity

Alekszandra Rokvity is a PhD candidate working in medical humanities and cultural studies between the Karl Franzens University of Graz, Austria and the University of Alberta in Canada. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. “It gives me no pleasure to confirm that my academic research has only proven what I've personally experienced and intuitively known: that there is relentless, systematic sexism present at the heart of Western medical practices which not only reflects the position of women in society at large, but seriously affects the care ill women are provided.”

Places I've Taken My Body by Molly McCully Brown

Molly McCully Brown has cerebral palsy, “which is a little like a stroke that happens when you are born” as she has to explain nearly every day to someone, somewhere. In Places I’ve Taken My Body, a collection of personal essays and her third book, she reveals her incessant, conflicted relationship with the body that she has carried since birth through to maturity as an accomplished poet, author and professor at Kenyon College. Several of these essays have been published elsewhere, but as collected set they provide an overlapping, ongoing conversation between body and voice that invites us into the experience of living a life in which the body can never be taken for granted.

The seventeen essays in the collection contemplate daily life that demands she accept the limitations that her cerebral palsy dictates on her ability to walk and maintain balance. Her life has been broken into four distinct epochs defined by her broken body: the original body before medical interventions, the body after extensive spinal surgery as a child, the body that by revolted during puberty, and her now slowly aging body that she believes will never improve. Woven across recollections of these epochs are seminal life events, including the loss of her twin sister shortly after birth, surgeries and terrifying medical interventions of various types, new academic and professional opportunities, deaths of family members, successes and failures. These essays were clearly written independently as basic introductory and situational information is often reiterated, but together the quilting of the essays creates a rich, multidimensional discussion into the nature of embodiment of self, voice and passion filtered through her uncooperative physicality.

Martha McCully Brown

As she moves through her many travels fueled by an urge to challenge her body’s literal limits, she grapples with identity as defined by her disability. She lays bare her grief and rage with the injustice of it all. She cannot escape her body, and sometimes does not even know if she wants to, but yet... all life must be experienced through the discolored lens of her body defined by medical lexicon and the disability politics she wants to shed. She is hindered by “this sense that I have to pay so much attention to my body, the ground right in front of me.” (pg.18) The necessary hyper-focus on the body creates physical and emotional barriers that impair her ability to enjoy what she achieves. This grief weighs heavily over us as readers. We feel her frustration at being moored to the earth while she wants to float free.

Ms. Brown’s collection of essays is a deep and graceful contemplation of her ongoing search for a stable identity that is powerful and authentic. She has her broken body, “I have needed fixing from the moment I was born. I can feel myself falling apart.” (pg. 81), but desperately does not want this body to define her, all the while honestly acknowledging the myriad ways it does. Ms. Brown is generous and forgiving of those who initially see only her body, including those doctors and surgeons who treat her over the years, and hardest on herself for wanting to deny that body.

“…I put on a nice dress and went to a bar I don’t usually frequent, but that I knew was accessible. I parked my Segway against the back wall and chose a table close enough that I could see it, but far enough away that it wasn’t obviously mine. I sat in the semi-dark and drank a bourbon, and enjoyed the thought that, looking at me, nobody would know that sitting at the table right now I could be any pretty young woman with a book in a bar. For all they knew, I could go dance. I could get up and walk right out of there, painless and fluid and unremarkable. I wouldn’t need to field a single comment or question, or get a single sorry look.
This lasted a few minutes, and then I felt guilty as hell for trying to crawl out of my skin.” (pg.88)

The collection includes “Bent Body, Lamb,” which is an elegant description of the comfort she has found in Catholicism, despite the paradox of not being able to partake in the rituals of mass due to her physical limitations. She identifies with the broken figure of Christ on the cross which highlights the mutual necessity of body and self. This is the strongest free-standing piece of the collection, and was very well received when published in Image Journal for its unfiltered exposure of her confrontation with God at the injustice of her reality paired with a path forward to hope and resolution. She concludes quite beautifully with “I am fearfully and wonderfully made.” (pg. 45) Is this not what everyone searches, regardless of the packaging we carry?

While these essays were not necessarily intended for a healthcare readership, I will be recommending this as necessary reading for my trainees in Neurology from now on. The totality of the overlapping essays crossing time and space provide a moving and powerful narrative of the lived experience of a patient who always demands to be more than a patient. —Lara K. Ronan

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Lara K. Ronan

Lara Ronan, MD is an Associate Professor of Neurology and Medicine at Geisel School of Medicine, Dartmouth College and Vice-Chair for Education in the Department of Neurology at Dartmouth Hitchcock in Lebanon, NH. She directs the DH Neurology Residency Program and has research interests in the intersection between the Arts and Humanities and Medicine. She is currently completing the Columbia Narrative Medicine Certificate Program and writing about the effects of individual narratives on the telling of the legacy of a single story.

This is Going to Hurt by Adam Kay

This is Going to Hurt by Adam Kay

This Is Going To Hurt is a memoir from British comedian, writer and former doctor, Adam Kay. The book, published by Picador in 2017, follows Kay’s journey from a junior doctor to senior registrar (or resident to attending physician) specializing in obstetrics and gynecology. The memoir is presented as a series of journal entries that he wrote throughout his former medical career, originally intended as a means of cataloguing intriguing clinical cases.

However, his recollections are far from formally academic: Kay’s unabashed bluntness allows for an unfiltered and honest reflection of his time working under the UK’s National Health System (NHS). The book covers a wide array of healthcare topics including the doctor-comedian’s thoughts on the NHS’s treatment of its doctors; his co-workers or “drug-dealing scrotes” that erroneously prescribe diuretics to dehydrated patients; and what he describes as “Eiffel Syndrome”—the common “I fell” etiology voiced by patients presenting with household items lodged in their nether regions. Kay’s wicked commentary keeps the reader engaged with risqué, crude humor that no practicing physician would (rightly so) feel comfortable dispensing.

 A praise-worthy feature of Kay’s narrative is his inclusion of informative and equally entertaining footnotes on the bottom of each page to explain the medical terminology referenced in each account. This makes the book accessible to the non-medical reader, who will learn more than a thing or two about medicine by the time they’ve reached the last page. For example:

 *APGAR scores are the standard measure of how well a newborn baby is doing—they get marks for Appearance, Pulse, Grimace, Activity and Respiration. It was devised by a doctor called Virginia Apgar, which makes me think that she chose arbitrary measures just because they fitted with her surname. Like if I decided that the best measures of a baby’s health were Kicking, Applauding and Yawning. 

 This Is Going To Hurt is steeped in themes of physician neglect, a topic of growing relevance in today’s healthcare climate, with increasing concerns over physician-burnout and resilience that have been elevated during the novel coronavirus pandemic. While the memoir’s title is a nod to the cliché that a doctor tells a patient before inflicting procedural pain, it also reflects the mental and emotional toll physician-hood took on Kay. In one example, Kay cites a traumatic case involving a patient with placenta previa, for which he received no support from the NHS after its devastating effects. The experience was a tipping point for him that led to depression and eventually prompted him to retire his white coat for good. Physicians, Kay reminds the reader, are just people too, something he believes healthcare establishments and patients often lose sight of:

“…patients don’t actually think of doctors as being human. It’s why they’re so quick to complain if we make a mistake or if we get cross. It’s why they’ll bite our heads off when we finally call them into our over-running clinic room at 7 p.m., not thinking that we also have homes we’d rather be at. But it’s the flip side of not wanting your doctor to be fallible, capable of getting your diagnosis wrong. They don’t want to think of medicine as a subject that anyone on the planet can learn, a career choice their mouth-breathing cousin could have made.”

Author, comedian and former doctor Adam Kay.

 Still, he gives equal time to the rewarding feelings he experienced when helping patients, delivering babies and treating couples with infertility issues. At trying times, it made him feel like a “low grade super-hero,” and it was this sense of satisfaction and purpose that allowed him to continue being a doctor for as long as he did. He finally summarizes his medical career with both dreariness and heart:

 “The hours are terrible, the pay is terrible, the conditions are terrible; you’re underappreciated, unsupported, disrespected and frequently physically endangered. But there’s no better job in the world.”

Adam Kay’s memoir is an entertaining account of a physician-turned-comedian’s triumphs and struggles through their medical career. His new children’s book, Kay’s Anatomy: A Complete (and Completely Disgusting) Guide to the Human Body, will be available this year.—Fredrick Martyn

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Fredrick Martyn

Fredrick Martyn is a Canadian writer, poet and medical student at The George Washington University School of Medicine and Health Sciences in Washington, D.C. This summer he will be beginning his residency training in family medicine at Western University in Ontario, Canada. He is a contributing writer for the medical satire website Gomerblog, as well as other online humor publications including Points In Case, Slackjaw and Little Old Lady Comedy. He also acts as a director for his medical school’s comedy show and can sometimes be found performing his poetry at Busboys & Poets, in D.C.

Tender Points by Amy Berkowitz

Amy Berkowitz is the author of Tender Points. Other writing has appeared in publications including Bitch, McSweeney’s, and Wolfman New Life Quarterly. amyberko.com.

Tender Points by Amy Berkowitz is a personal account of life with Fibromyalgia (FM), a condition that the author has and uses to explore topics frequently associated with the disease. The book, then, is also an account of terror, sexual violence, enduring, overcoming, adapting, being unbelieved and ignored. It is a book is about being a woman in a patriarchal culture.

Berkowitz’s essayistic nonfiction blends poetry, “listicle” summaries of a-day-in-the-life with chronic pain, segments from FM discussion boards, and reflections on historical discussions of pain and women’s health. Throughout, she demonstrates incisive wit and a tight control of language. Culturally wide-ranging, she draws on (among others) Freud, fiction writer Richard Brautigan, Sarah Winchester, the Riot Grrl punk-music movement, and Sex and The City, to texture and color and sound her work. Though each component only spans a single or handful of pages, she arranges every part to create a connected story. Thus the author leads us down a hallway of her own perspective on chronic pain. She is saying: I am a full person, with multidimensional ideas and arguments, and I suffer from chronic pain.

In the midst of this tour, we learn Berkowitz was raped at a young age by her pediatrician. It’s while remembering the incident years later that she began experiencing the symptoms of FM. At a later point an expert on sexual violence asks her if she was raped, and Berkowitz replies: “I don’t know.” The answer comes as a surprise; it is not immediately clear to her why she answers this way. “Who can argue with a stethoscope?” she writes. This invokes questions so often surrounding women as victims of rape, sexual violence, and toxic masculine cultural norms: why did she wait so long? Why did Dr. Christine Blasey Ford not speak up sooner? Or the accusers of President Trump or Harvey Weinstein? Why can’t a victim tell all the details clearly? Can we believe her? Throughout Tender Points, Berkowitz answers these questions through her story.

The author deftly uses form to underscore her sentences. Ample blank space throughout the book—some pages only have a few words—reminds us that pain can be as much about absence as it is about presence. Absence, in the sense of not being seen or heard, is part of everyday reality for many people suffering from chronic pain. Alternatively, absent from most people’s lives is relentless suffering and stress. The freedom that comes from pain’s absence is not something those with chronic pain can know.

Yet for all her truth telling, Berkowitz reaches some questionable conclusions about physicians and the field of medicine. For example, she uses Carl Morris’s Culture of Pain as a touchstone, equating the historical view of hysteria with the way we currently view FM, as a diagnosis in which mostly male physicians can imprison poorly understood female patients. She also revisits one of Morris’s more contested points, that pain should be viewed as a mystery, rather than a puzzle to be solved. This is a false dichotomy: a both/and approach is typically employed for poorly understood medical problems. Pain is a mystery and a puzzle, and it should be approached with deference to both. After all, as a result of problem solving and refusal to see it as purely a mystery, Hysteria has become (mostly) a bygone medical diagnosis.

But none of these dead-ends limit the power and utility of the book. Tender Points immerses the reader in the experience of someone who is suffering from chronic pain. Each page turns us to see, hear, feel, and gradually understand that experience. It’s not always clear, it’s not always clean, but it always crackles with bright personal truth.

In healthcare, many of us know we should believe women, and believe those with chronic pain. But clinical conditions mandate skepticism beyond the purely intellectual, and we are generally required to face a problem as a balance of both/and: believe and question. But we must do a better job at understanding the experience of those with chronic pain and FM to inform that balance.

I spent time listening to some of the bands Berkowitz references in her book. The song “Rebel Girl,” by Bikini Kill carries these lyrics: “When she talks, I hear a revolution.” The fulcrum of this line is “she talks, I hear.” That alone is a revolution for many of us, because hearing is necessary for understanding. And reading Tender Points is an excellent way of hearing—of listening—to better understand women with chronic pain and Fibromyalgia.—Britt Hultgren

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Britt Hultgren. Photo by Allison Coffelt

Britt Hultgren is a resident physician with the University of Utah Department of Family and Preventive Medicine. Selected publications include The New England Journal of Medicine and a feature-series in Jordan Business Magazine.