Letter to a Young Female Physician: Notes from a Medical Life by Suzanne Koven, MD is both instructive and empowering for a professional audience. The “young female physician” is Koven herself 30 years ago, and the memoir’s title comes from a New England Journal of Medicine op-ed she wrote that brought to light Imposter Syndrome (a perceived and misplaced self-doubt that high-achievers are unworthy of the confidence others place in them and that soon enough they will be found-out as imposters). A primary care physician, Koven creates a narrative that addresses issues facing women in medicine such as pay iniquity, harassment and sexism. While all of the above is plenty to keep readers in the clinical world engaged, the book’s success resides in something else—the way Koven approaches universal truths by examining and honoring the specific experience of her life as a woman and as a doctor. Going beyond the halls of the hospital and the titular “young female physician,” she creates a narrative sure to resonate with many.
Read moreAt Peace: Choosing a Good Death After a Long Life by Samuel Harrington MD
At Peace: Choosing a Good Death After a Long Life is a book that should be studied by students preparing themselves for careers in medicine, by those taking care of aging patients, by family members who don’t want their loved ones to suffer, and by everyone who desires for their life to end in peace with a good death.
Read moreThe War for Gloria by Atticus Lish
Fiction has the ability to bring a world to life, to offer other viewpoints and ways of looking at the world, and it also has the ability to put us in another body in order to give us the experience of a disease or condition. In Atticus Lish’s excellent new novel The War for Gloria (Knopf, 2021), the disease is amyotrophic lateral sclerosis, ALS or Lou Gehrig’s disease. The story is told from the perspectives of Gloria and her son Corey, who is a young teenager when Gloria is diagnosed with ALS. Lish, whose novel Preparation for the Next Life won the 2015 Pen/Faulkner Award, brings to life the world of working class Boston suburbs.
Every Deep-Drawn Breath: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine in the ICU by Wes Ely, MD
Every Deep-Drawn Breath chronicles Dr. Ely’s journey as a critical care doctor and in some ways, reads like a Hegelian dialectic, that is, an interpretative process that uses contradictory propositions to reach a firmer truth. His story begins with a thesis: a young critical care physician focused on saving lives in the Wake Forest intensive care units. “My aim with my patients was to get their broken systems back to functioning as they should,” Dr. Ely writes
Read moreBlack Death at the Golden Gate: The Race to Save America from the Bubonic Plague by Steven K. Randall
As life begins to resume a sense of normalcy, it’s important to reflect upon the lessons learned from the pandemic. Numerous parallels may be drawn to the bubonic plague outbreak of San Francisco at the start of the 20th century. Black Death at the Golden Gate by David K. Randall provides an account of the efforts led by public health officials to combat this disease. Randall is a senior reporter at Reuters who drew upon a wide array of sources, including telegrams and contemporary newspapers, to construct a narrative of the plague. Each chapter provides thorough illustrations of the physicians, scientists, and patients involved, to further draw the reader into the immediacy of the events.
Read moreThe 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)
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
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 Hospital: Life, Death, and Dollars in a Small American Town by Brian Alexander
In The Hospital: Life, Death, and Dollars in a Small American Town, writer Brian Alexander takes a deep look into the continued validity of these statements in today's healthcare arena.
The Ohio native and author of the award-winning Glass House, which zeroed in on the decline of the once-thriving factory town of Lancaster, centers his narrative on individuals affected by the corporatization of America. He follows Phil Ennen, CEO for 32 years of Community Hospitals and Wellness Centers, as he attempts to keep his small hospital in Bryan, Ohio, open for business. There’s more than just healthcare at stake, as Alexander underscores:
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"The hospital was special. It wasn't only a community asset in the legal sense; it was a community glue, a community economic powerhouse, a community source of employment, a community lifeline."
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.
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
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.
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
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.
Carte Blanche: The Erosion of Medical Consent by Harriet A. Washington
Carte Blanche is a wake-up call to the many times researchers have skirted laws about informed consent and jeopardized a participant’s right to know. Washington has a laser-focus ability to make sense of complex statistics, target obfuscating data, put in context historical records and truly empathize with the accounts of those who have experienced what she calls “investigative servitude”—harm from the deterioration of informed consent, an important human right. Editors of the Intima spoke with her about how this groundbreaking exposé has an even more heightened importance during this challenging decade.
Read moreBreath Taking: The Power, Fragility, and Future of Our Extraordinary Lungs by Michael J. Stephen, MD.
Everyone is thinking and talking about breathing, oxygenation and respiratory particles these days. Breath Taking, an enlightening new book by Dr. Michael J. Stephen arrives just in time for a curious public who wants to educate themselves about the lungs in order to understand the effects of the SARS-Cov 2 virus pandemic. Over the past two decades Dr. Stephen, who has been on the front line caring for COVID-19 patients (and recovered from the virus himself), has studied advanced end-stage lung diseases and worked with patients at diverse locales, including a Massachusetts prison hospital and a pediatric HIV clinic in Cape Town, South Africa.
Read moreDeparture 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.
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
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
“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.
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
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/
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).
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
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
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
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
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 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
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.”
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.”
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
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
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
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.
Articulations: The Body and Illness in Poetry by Dr. Jon Mukand
Articulations: The Body and Illness in Poetry (University of Iowa Press, 1994) is a collection of over four hundred poems compiled and edited by poet and physician Dr. Jon Mukand. This is the second medical poetry collection assembled by Mukand, the first being Sutured Words (Aviva Pr, 1987).
What makes Articulations remarkable is the accessibility of the material, primarily through the diversity in the perspective it offers, beyond that of just the physician. The collection is divided into categories that include Patients’ Views of Illness: The Darkness Within Me Is Growing, Views of Caregivers: Gentleness and the Scalpel, By Healthcare Workers: Dissecting the Good Lines from the Bad and Family and Friends: Afraid to Name This Dying. There is also poetry from more marginalized perspectives within the healthcare system with categories entitled, Women: Flowers of Ether in My Hair, Mental Illness: The Shadow of the Obsessive Idea, Disability: Their Lockstep Tight as Lilac Buds and Social Issues: Hungry and Frightened by Namelessness. The inclusion of these latter categories of poetry is especially meaningful and somewhat revolutionary—given that the collection was originally published over twenty-five years ago. These diverse categorical titles are also displayed on the book’s cover art; they circumnavigate an image of a jointed skeletal hand, likely symbolizing the distinct perspectives or “articulations” present within the field of healthcare.
There is a poem for everyone in Dr. Mukand’s book. Some are more generally relatable like “Waiting for the Doctor” and “Blood Pressure.” Others are more specific, like “After Being Paralyzed from the Neck down for Twenty Years, Mr. Wallace Gets a Chin-Operated Motorized Wheelchair.” Some are tinged with dry humor— like “The Urine Specimen,” while many veer far from the lighthearted, including “Rape” and “To A Young Woman Considering Suicide.” No poem in the series is particularly verbose ,and most are no more than a page. This brevity contributes to the poems’ digestibility and accessibility.
Even poems peppered with medical references can still be appreciated by the majority of layman readers. An example is a poem entitled “Peau d’Orange” from Marcia Lynch about a patient with inflammatory breast cancer. Anyone who has completed medical school training will recall the poem’s title as a nod to the dimpling skin changes seen in inflammatory breast cancer, characteristically described as “peau d’orange,” which is French for “skin of an orange.”. In it Lynch writes, “I accept you calling my breast an orange peel, let you lay hands on this fruit.”. While this imagery enhances the piece, it is not a prerequisite to understand and appreciate the poem’s message; it is merely an additional treat for the medically savvy reader. Even without knowing the specific textbook nomenclature, the poem still hits hard with pleading lines like “If you lift the chill, that unravels my spine, I will send you stars from the Milky Way. Sending them spinning down, dancing a thousand-fold. Please let me grow old.”
In Mukand’s introduction to Articulations, he explains that he hopes “these poetic articulations will help patients to cope with illness, friends and family to understand the patient’s condition and healthcare professionals in their challenging work.” The collection achieves this through offering a diversity of well- packaged perspectives from all walks of the healthcare spectrum. It is poetry that is accessible not only by the seasoned physician who regularly reads The New England Journal of Medicine but also by the people in that very physician’s waiting room who have never even heard of such a publication. —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. His poetry has appeared in Pulp Poets Press, Spillwords Press, Bonnie’s Crew and The Online Journal Community and Person-Centered Dermatology, among other places. He is a contributing writer for the medical satire website Gomerblog, as well as other online humor publications including Points In Case, The Establishment, 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.
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
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.