The death of a parent takes us into alien territory, a cold, silvery place we never could have imagined and a pain we never quite forget. As children, we revere our mothers and fathers; as teenagers, we loathe them, and it is only when one grows up, or becomes a parent, or goes through therapy, that a begrudging appreciation begins to form. Parents are truly the unknowable ‘other’ and the death of them startles the child in us, so much so that the adult in us is lost, with only a bewildering map of grief-behavior offered by outstretched, mostly sympathetic, hands. Inevitably, we feel as if much has been left unsaid. “Some apologies are unspeakable,” says poet Eula Biss in the essay “All Apologies” in Notes From No Man’s Land. “Like the one we owe our parents.”
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.”
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.
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
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 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.
Dementia 21 by Shintaro Kago
Dementia 21 is twisted. I mean that in the best possible way.
From the eerie, delicious mind of Shintaro Kago, the Japanese ero guro nansensu (horror mixed with surrealism) manga artist, Dementia 21 is a chronicle of surreal stories about Yukie Sakai, a home health aide. The horror graphic narrative is twisted and destabilizing, with characters who transform throughout the story, revealing different sides. What you expect is never what the story—or characters—turn out to be, and that is the beauty of what Intima sees as a graphic medicine classic, the first of several translations of Kago’s work that Seattle-based publishing company Fantagraphics Books will release.
Kago’s stories in the volume follow the hardworking Yukie through days fraught with unexpected drama from her patients, their family members and others (see below for a short example). She tries to handle them as they come at her, and she usually can cope with the weirdest situations. But as fellow home health aides become jealous of Yukie’s ability to get the top score at the company each month, a rival healthcare worker plots to send her to difficult clients to drop her score. The first home Yukie gets sent to turns out to be a death trap, where five previous home health aides have met strange and freak accidents. While cleaning, Yukie comes across a secret panel depicting the faces of the five previous aides when suddenly, the elderly patient Yukie is helping attacks her. Yukie survives, however, because the old woman needs her heart medication, and ironically, in exchange for the medication, Yukie gets a high score.
The contest for top home health aide quickly devolves into the absurd. The second home Yukie is sent to has three elderly women. Caring for three people is already exhausting enough when the next day, those three women become six. The next day, six become twelve, until the whole house is crammed with elders. Strangers dump their relatives at the house, and Yukie is appalled. “How can you let yourselves be treated this way?” she cries to the patients. “Thrown out like trash by your own flesh and blood! DOESN’T THIS BOTHER YOU AT ALL!?.” It’s a question they are powerless to answer.
Every chapter begins with a full-page spread, one of this graphic artist’s signature techniques. Sometimes Yukie is crawling out of her own face; sometimes she is fending off danger, hair flying; sometimes she is being strangled and swallowed by wires. Often, the backgrounds of panels convey horror, fear, and confusion with layered visual elements—brush strokes, whorls, gothic detailing—that portray a chaotic emotional reality. These graphic strokes reverberate and tantalize the reader but also create a sense of horror about the confusion of health, illness and difficulties of healing and healthcare.
This powerful narrative contains multiple meaning: Part social commentary and satire, part menacing story colored by greed and selfishness, part narrative on thankless work, Dementia 21 is a transgressive form of graphic medicine. When I read other memoirs on aging and dementia, such as Joyce Farmer’s Special Exits and Roz Chast’s Can’t We Talk About Something More Pleasant?, I sense fear and anxiety, trembling and loss. When I read Kago’s book, however, it’s a different energy: one tinged with madness and imagination. It reads like a dream: What should we believe? What should we hold onto? What parts strike us most, and what does that say about us?
Dementia 21 is the myth of Sisyphus through a Japanese lens, with an enthusiastic healthcare worker tirelessly pushing against obstacles to make a difference while also making a living. At its core, the book is a graphical exploration of dementia and aging and its accompanying themes of abandonment, forgetfulness, senility, competition, technology, division and difference, abuse, and bullying. Ultimately, it is an eye-popping and painful story that explores the meaningfulness of life by focusing on the elderly and those who care for them.
Over thirty years since he debuted his first book, Comic Box, Kago continues to cross boundaries most other manga artists won’t go near by subverting expectations and breaking the fourth wall. His aesthetic is akin to shifting on soft soil, wallowing in shit (literally), its narrative dark but laugh-out-loud funny. He forces you to push your boundaries to the point of discomfort, and challenges you to stay there.
Dementia 21, Vol. 2 is scheduled for release in early 2020.—Jane Zhao
Jane Zhao is a lover of comics because when she has no brain or patience for words, she can escape into image. She is a graduate of the Narrative Medicine program at Columbia University and studied neuroscience at McGill University. She currently works in research in Canada. Talk to her about poetry, Donna Haraway, health policy, and muscle pain.
The Me in Medicine: Reviving the Lost Art of Healing by Patrick Roth, MD
What follows is a typical visit to the physician for back pain in the United States: A person hurts his or her back and sees a doctor for a complete workup. The clinician, careful not to miss anything, orders an MRI that is subsequently read by a distant radiologist. The report is sent back to the physician who, depending on the results, calls for a follow-up appointment to discuss outcomes. It is likely that the patient is sent to a physical therapist, who provides a therapy regimen based on the radiology imaging and his or her own experience without need for the physician’s specific prescription. While much can and has been written about this typical medical experience, from its inefficiency to its reliance on medicalization and overdiagnosis, it is the fragmentation and lack of contextualization that Dr. Patrick Roth has highlighted in his latest work, The Me in Medicine: Reviving the Lost Art of Healing.
With an increasing reliance on technology and the expansion of artificial intelligence in medicine, Dr. Roth paradoxically calls on physicians to embrace their philosophical faculties. He proposes that narratives, developed through introspection, as well as teaching, mentoring, and writing, are the missing components in our medical system today. The onus is on both patients and physicians to develop individual and, when they come together for a clinical encounter, shared narratives on health, disease, and treatment for better overall care.
For the patient, narratives mean coming to understand how he or she views health and disease. As Jerome Groopman explains in his book, Your Medical Mind, and Dr. Roth highlights in his, people have a spectrum of temperaments with regards to intervention: Some believe strongly in the human body’s regenerative capacity (naturalist) and others believe strongly in science, technology, and medicine (technologist). These proclivities are important for the patient to consider when making medical decisions, but only represent one piece of the puzzle.
Patients must also consider unconscious cognitive biases they have when making their decision for treatment. Common cognitive biases include the availability heuristic, a mental shortcut in which a person makes decisions based on readily available examples, and hyperbolic discounting, in which a person discounts future reward because of the time delay between the decision and the reward. For instance, using the availability heuristic, a patient may be hesitant to undergo a procedure because a friend had a similar procedure that did not end well, whereas using hyperbolic discounting, a patient may prefer a procedure because they perceive the reward as immediate as compared with the longer treatment course of physical therapy. While highlighting the patient’s decision-making heuristic is certainly not easy, it serves to both increase patient autonomy and satisfaction with outcomes.
The complexities of these medical decisions is the space where physicians, equipped with their own medical narratives, help the patient decide what is best. The physician has the ability to provide the context necessary for the patient’s choice. For this reason, it is incumbent on the physician to become a good storyteller. It is not enough to lay out all the options with statistics or paternalistically make the decision. Rather, believes Dr. Roth, the physician most effectively communicates through anecdotes and analogies for understanding disease ontology and treatment decisions.
There are a number of tools at the disposal of physicians and patients to accomplish these lofty, yet achievable goals. With honed doctoring skills, the physician can extract the patient’s motivations and contextualize them to reach a sustainable and satisfactory outcome. Further, the physician can foster self-efficacy and promote a deep education about disease. The patient, on the other hand, possesses knowledge that the physician is not privy to, i.e., the phenomenology of the disease. By joining support groups and forming online communities, patients empower themselves and shape the narrative of their needs for the medical community. Engaging in these exercises shapes not only the character of the patient and physician, but the disease process too, as it reforms a patient’s reality through changes in their thoughts and perceptions.
Medical science and technology naturally lend themselves to a reductive materialism with an approach that parses apart reality into molecular cascades and biotargets on which intervention is possible. Analogously, medicine, as a distinctly human endeavor, naturally lends itself to storytelling—the currency of effective communication and change. As such, Dr. Roth makes a formidable case for narratives as a staple of holistic medical practice. Narratives reform environmental context, which in turn shapes us and our health. With technology and specialization playing an ever-expanding role in our healthcare system, it will remain paramount to scrutinize our narratives and ensure they are always in service of our patients. — John Paul Mikhaiel
JP Mikhaiel is a medical student at Georgetown University School of Medicine. After earning his BS in neurobiology and philosophy at Georgetown University, he spent two years at the NIH researching brain-related disorders. He is currently a member of the Literature and Medicine track at Georgetown University, and serves on the management board for the coaching program, A Whole New Doctor. His work has been published in Scope, Georgetown’s literary journal. Mikhaiel plans to pursue a career in neurology.
RX: A Graphic Memoir by Rachel Lindsay
Though much is taken, much abides: RX: A Graphic Memoir on corporate America and bipolar disorder
RX: A Graphic Memoir by Vermont-based cartoonist Rachel Lindsay is a memoir borne out of passion, determination, and commitment. Each chapter is short and episodic, and provides a chapter in the story of her unraveling: her time committed to a mental health institution and how she got there. Lindsay writes with a wry dark humor about her struggles to maintain stability with bipolar disease while working in a corporate job.
At nineteen, Lindsay was diagnosed with bipolar disease, a mental illness characterized by episodes of mania and depression. Staying sane becomes her primary objective and the medication her psychiatrist prescribes her helps keep her sane. Lindsay describes this rhythm of her sanity in three panels like a mantra: “Chug. Crush. Toss.”
Lindsay, whose comic strip, “Rachel Lives Here Now,” about her life as a New York transplant in Vermont, appears weekly in Vermont’s statewide alternative newspaper, Seven Days , has created a memoir that serves as a timely narrative for what many are experiencing in the United States. For the author, as with other Americans with pre-existing conditions, her corporate job is a means to an end, providing her with health insurance and prescription medication coverage. Despite feeling unhappy at her work, she continues at her job. She gets a promotion, which means she gets thrust into the corporate pharmaceutical world and works on a marketing campaign for an antidepressant, Lindsay continues to feel even more trapped.
As a graphic memoir, Lindsay’s style is frenzied, a visual staccato beat that moves her narrative along. The lack of gutter space makes the narrative feel overwhelming at times, yet each panel is concise and detailed. Often metaphorical, her chapters begin with a reflexive lens into the story. In one, she appears in a straitjacket. In another, she’s an “urban badass” ripping her way out of wall graffiti to symbolically step on the dead wind-up toy of her in the first chapter, sunglasses on, smoking, and giving the finger.
RX is also a book about a millennial, a millennial with a mental health condition. Trying to find balance between where you are and where you feel you ought to be, I identify well with that feeling. At a party in Brooklyn in 2010, a partygoer says to Lindsay, “Screw your corporate job and really commit yourself to your art. You’re really talented!!” And throughout her memoir, she struggles to find a creative outlet while maintaining her corporate veneer. Quite literally a wolf in one chapter, dressed in sheep’s clothing, she shows us the precariousness of just passing. And its toll on her mental health.
In her interactions with the system, whether this is the healthcare system, the corporate capitalist system, or the criminal justice system, the graphic writer echoes the frustration and hopelessness of feeling trapped. This shapes her story. The day after she is committed, Lindsay sits alone in a cell. “It’s easier to be angry than sad,” she writes. “Despite the psychiatrist I hadn’t stopped seeing, despite the pills I stopped taking, I sat tagged and overmedicated in a new prison – …waiting to be corrected to fit someone else’s definition of sanity.”
The memoir ends with recognition of the system she is beholden to—though much is taken, much abides. She writes with insight from her struggles with sanity and insanity and the work it has taken to get her to today. Lindsay dedicates the book to Burlington, Vermont, where she currently resides. Though her ending feels abrupt—How did she get where she is now? What happened after moving back in with her parents? What headspace is she in now? —Lindsay writes with calmness, reflection, and grace. This book is a testament of her voice.—Jane Zhao
Jane Zhao is a lover of comics because when she has no brain or patience for words, she can escape into image. She is a graduate of the Narrative Medicine program at Columbia University and studied neuroscience at McGill University. She currently works in research in Canada. Talk to her about poetry, Donna Haraway, health policy, and muscle pain.
The Moon Prince and the Sea by Daniela Rose Anderson
The world of pediatric oncology is one of extremes. The diseases strike unexpectedly, cruelly, and without discernible cause in the midst of childhood, a time of remarkable growth and innocence. While these diseases were once a death sentence, the improvements in survival rates (in places where the latest treatments are available) have been dramatic: five-year survival rates of near 90% compared to 10% just forty years ago. Even so, the burdens of disease and treatments are high, and of course, death still comes too often. Among the tribulations of the pediatric cancers, beauty can be found in the lives and loves of the children and families. One aspect of beauty is the compassionate connections that can develop between the children affected. In The Moon Prince and the Sea, Dr. Daniela Anderson captures this beauty in both words and pictures as she tells a fantasy story based on actual patients.
Sumit is a boy in rural India who travels for days to get to the hospital for treatments for an undefined serious illness. As he physically recovers, he connects with other children in the hospital. He also learns of a girl named Marina in a distant country (the US) who has cancer as evidenced by her bald head and connection to an IV pole. He is touched by her story and dreams of her. He paints her a picture with two moons—one on earth and one in the sky—and sends the picture and a brief letter of encouragement to Marina. Far away, she receives his gifts and feels both connection and comfort.
After he returns to his country home from the city hospital, Sumit is not able to return for more treatments because of the family’s lack of resources. A caring nurse travels to Sumit’s home to find him with hopes of continuing his treatment. The neighbor children, however, inform her that Sumit is now “in God’s home.” But in Anderson’s imagining, the story has not ended and Sumit’s connection to Marina continues.
Back in her hospital, Marina waits until family and friends are ready, and then she closes her eyes and takes her last breath. In the next place, she and Sumit are united, healed, unafraid, and bound together.
Anderson’s watercolor illustrations are rich and vibrant, and they evoke feelings of comfort and compassion. Sumit has a yellow silk cape that both connects him to the moon and presents him with a certain regal dignity and resilience. His cape and bearing mark him as “the moon prince,” while Marina’s name means “the sea,” and thus the book’s title. While Marina is surrounded by family and the best of medical care and resources, there is a sense of vulnerability as her disease puts her beyond all efforts of cure. Understandably frightened, she has a quiet strength as she waits to take her last breath until her family is ready. Hand in hand, Sumit and Marina then travel on together, connected to the mystery of the unknown while rooted in the known, which is love.
Children with cancer and other serious diseases are, of course, like the rest of us—not always saints, not always wise and inspirational. Yet there is something striking about the experience of a life-threatening illness at a time of life wired for dramatically persistent growth. Such children often have and show stubborn resilience and focus their time and attentions more on the prospects of living rather than dying. And if death comes, it is not uncommon that they demonstrate deep compassion for their family and their fellow patients—others who suffer. Anderson captures these aspects of children and illness in the story, which treats death as both ending and beginning. There is real sadness, of course, in the story because it is faithful to the truths of terminal childhood illness. Nevertheless, the strongest feelings and impressions are connection, compassion, and transcendence, and these are other real truths at the intersection of the worlds of childhood and illness. — Greg Adams
Greg Adams, LCSW, ACSW, FT is Program Coordinator for the Center for Good Mourning and Staff Bereavement Support at Arkansas Children’s Hospital in Little Rock, Arkansas. His work of 27 years at Arkansas Children’s Hospital includes time in pediatric oncology, pediatric palliative care, and grief support for staff and community adults, adolescents and children. He also writes and edits a grief/loss electronic newsletter, The Mourning News. Other current related experiences include teaching an annual grief/loss elective class in the University of Arkansas-Little Rock Graduate School of Social Work and chairing the Credentialing Council for the Association of Death Education and Counseling.
Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing by Robert L. Klitzman, MD
Public policies are often determined by three main components: ethics, science, and social considerations. In the 21st century, among calls for ‘personalized medicine,’ few topics raise as much concern as genes, genetic diseases and genetic interventions. Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing, a book by psychiatrist and ethicist Robert L. Klitzman, MD., published by Oxford University Press, is timely, providing a valuable insight into the social considerations surrounding genomic medicine.
Dr. Klitzman, who is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University, interviewed 64 individuals who were sick, or had an increased risk of being sick, with one of several genetic diseases: Huntington, breast and ovarian cancer, and Alpha-1 antitrypsin deficiency (AAT). He provides an in-depth summary and analysis of the responses, opening a window to the interviewees’ lives, fears and dreams. In particular, the book reports their experiences in the familial context, their understanding of the disease and the science involved, their decision-making processes, and their views regarding relevant social policies. Dr. Klitzman, who is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works, provides a compelling and entertaining narrative that brings to life the struggles, realizations and often painful process involved in illness.
The reader learns a great deal from the interviews.
First, the interviewees are highly affected—mostly in negative ways—by these diseases. Bonnie, for example, who is at an increased risk of carrying a breast cancer gene, reports being terrified of the prospect of being tested positive. Such result, she claims, would hurt her more than help her, and would make her question her meaning in life (p.45). Others, such as Diane who had to undergo mastectomy, may feel depressed and as if they lost hope and control over their lives because of these genetic diseases (p.154).
Second, coping with these diseases in the medical context raises important ethical and professional issues. For example, as Dr. Klitzman claims, clinicians may be overeager to test for these diseases while ignoring the psychological and ethical considerations. Thus, Betty, suffering from AAT, was negatively surprised that a pediatrician tested her child for AAT without consulting with her first (p.55). Similarly, Laura, a graphic designer, with breast cancer mutation, reminds us that ‘bad’ genes come along with the patient, and that clinicians should thus acknowledge and care for the patient rather than the disease. (p. 37)
As Dr. Klitzman admits, the data provided in the book may not be wholly generalizable, as it pertains to a small set of people in a specific location (p.19). However, the book draws a general picture of the personal, social and institutional struggles faced by those who are, or may be, affected by genetic diseases, some of which being incurable. The insights will be of great interest to clinicians, bioethicists, medical humanists, policymakers, and the general public. Says Kay Redfield Jamison, author of An Unquiet Mind and more recently Robert Lowell, Setting the River On Fire: A Study of Genius, Mania and Character: “Dr. Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... an important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." As do the editors of Intima: A Journal of Narrative Medicine.—Zohar Lederman
Zohar Lederman is a medical resident in emergency medicine at Assuta Ashdod hospital and a bioethics PhD candidate at the National University of Singapore. His PhD focuses on the ethics of One Health and culling as a public health measure. His other areas of interest include: end of life care, family ethics, the dual loyalty problem, ethics of infectious diseases and public health ethics. Lederman, who served on the editorial board of Intima: A Journal of Narrative Medicine, is a contributor.
Taking Care of Time by Cortney Davis
For the third time in as many weeks I’m reading Cortney Davis’s Taking Care of Time. I’m constantly jotting notes and underlining words, for every poem has a line I want to remember. I am grateful to the nurse Davis is and in awe of the nurse writer she has become. She sees under the skin of our lives, accepts and captures us in her poetry.
The first section takes Davis from practicing student to practitioner: I stabbed oranges until my hands ran with juice, then the patients until my hands ran with grace. Quickly she learns what nurses signify when we are outside of our hospital clinic setting — in the physicality of touch and embrace — but it is early in her surgical rotation where she prays as she recognizes her calling: Let this be, let this be, my life’s work.
In “Stoned,” she learns to distinguish the smell of death, unraveling it from under the smell of marijuana and hospital rooms. Driving home, a radio update on the weather takes her thoughts to the rise and fall of the body’s temperature until she collects herself — the weather — she says out loud — - the weather. That’s all.
It may be in the woman’s clinic where Davis truly loses her heart, as she receives her young patients. She sees beyond the narrow mouth of a vaginal speculum and the reach of her hands cupping a budding uterus, while hearing the nervous words and beating hearts of her young patients, who come to her with their anxious mothers hovering beside them and the fluttering hearts of their unborn babes to the fears they carry:
I reach up, enfold her hands.
I too had to learn that my body was mine.
And then a sharp one-movement poem, as Davis becomes the patient. Now Davis learns another level of loving. In her deepest pain, she understands gender:
How necessary both -
The tender gentle sympathy
and at other times
The strength and deference
that lifted and held and did not let me fall.
We witness the beloved care of the nurses, in juxtaposition to the teaching residents, each one smacking the hand sanitation device, as they abandon her.
I’m not sure Davis learns to overcome the fears she finds in her patients. But it is in her poetry that she can comfort them, herself and us. In “On Call: Splenectomy,” she writes:
I’ve taken Pity on you
left out the really awful part . . .
And these stories
How I tame them on the page.
These are Davis’s gifts, the stories that she has plucked from her life’s work. Now, in these terrible frightening times, we draw comfort from Davis’s poems, knowing she has received us. She has heard our stories and our cries, returned them to us, wrapping her words to in poems.
Here they belong to you, she seems to say. We receive them with gratitude.—Muriel A. Murch
Muriel A. Murch was born and grew up England, graduating as a nurse in 1964. In 1965 she married Walter Murch in New York City, and they motorcycled to Los Angeles, relocating to the Bay Area in 1968. Murch has a BSN from San Francisco State in 1991, completing her book, Journey in the Middle of the Road, One Woman's Journey through a Mid-Life Education (Sybil Press 1995). Her short stories and poetry are included in several journals, including most recently, Stories of Illness and Healing, Women Write Their Bodies (Kent State University Press 2007); The Bell Lap Stories for Compassionate Nursing Care (CRC press, Taylor and Francis 2016); and This Blessed Field: How Nursing School Shaped Our Lives and Careers (Kent State University Press 2018). Her work is included in the anthology Learning to Heal, Reflections on Nursing School (Kent State University 2018). Discover more about her work at murielmurch.com.
Art & Anatomy: Drawings by Laura Ferguson & Katie Grogan, Editors
Imagine a medical student lingering outside the door of the anatomy lab, half eager to enter and yet half afraid. When she opens the door, the student will enter a place Danielle Ofri, MD, calls "Stuffy, smelly, drippy, disgusting" in her introduction to this beautifully conceived and presented volume entitled Art & Anatomy: Drawings by editors Laura Ferguson and Katie Grogan, published in 2017 by the University of California Medical Humanities Press.The student might wonder how she will ever survive learning to dissect the human body; how learn to balance the clinical and the humane; how to embrace the technical necessities while maintaining the creative passion that called her to medicine in the first place.
Since 2009, Laura Ferguson, Artist in Residence at New York University's School of Medicine's Master Scholars Program, has been providing an answer to these questions, for medical students as well as for residents, physicians, nurses, and other medical personnel. On Tuesday evenings, Ferguson transforms the anatomy lab into an artist's studio, where she guides and encourages students as they study, and then draw, the beautiful bits and pieces of the human body.
The purpose of her Art & Anatomy seminar, Ferguson writes, is not for students to create perfect art but rather "to experiment, to take risks" (page 134). Here there is no right or wrong, only the opportunity to look deeply and experience the human body artistically.
The drawings in this book are intimate, sensual, and astoundingly gorgeous, presented in an order that reflects the eight sessions of the course. In session one, students each select a bone from the "bone box." Ferguson names the bones, shows where they articulate in the human skeleton, then invites students to study and draw their chosen bones, the whorls and dips. As they draw―vertebrae and spinal column, the drama of sacrum and pelvis, ribs, femur, the tiny bones of the foot―students learn forms that fascinate rather than facts to memorize.
Ferguson also asks students to draw the bones of their own hands, to imagine bone linked to muscle and tendon, and perhaps to ponder how their anatomy is like or unlike that of their patients. Hannah Bernstein, on page 60, draws her left hand from without and within, including a scar that ladders down from the base of her thumb. Amy Ou draws her hand holding the hand bones of a skeleton (page 67), surely a way to connect her own living flesh with the reality of patient mortality she will encounter during her medical practice.
Storytelling is encouraged. Jing Ye draws the pelvis with a fibula and radius intersecting, naming this "The Fiddler" (page 43). Shian Liu, titles the ribcage, drawn in strong strokes, "Ribcage, of Breath and Bone" (page 35). Karen Ong draws a cadaver in its protective bag, naming it, "Under My Skin" (page 106). Such storytelling encourages students to visualize the lives of their patients and to examine their own emotional responses to these imagined lives.
In another session, students draw from life models, a chance to see the body both in motion and repose and so picture the movement of bone and muscle under skin. Students also draw from cadavers, an artistic and emotional challenge. Encouraged to observe in groups, students focus on details―not an easy task when faced with the lovely complexities of the opened body. In later sessions, students become even more intimately involved with the cadavers, removing individual organs to visualize their precise locations in the body and to observe the natural variations in human anatomy. Studying the organs they removed, students discover beauty in kidney, lung, heart, or brain. Some choose to draw the faces of their cadavers. Yohei Rosen's becomes a study in the planes and angles of the face (page 108); Michael Malone's "Bisected Head" is titled "Abandon" (page 115).
In the final session, students put finishing touches on their drawings and select which to scan and save. Many of these drawings have found a home here, in this fascinating and moving book. As Ferguson's students surely must leave her Art & Anatomy drawing class changed and inspired, so too readers will be intrigued and humbled by these accomplished and deeply reverent drawings.—Cortney Davis
See a video about Laura Ferguson’s work on Narratively
Cortney Davis, a Nurse Practitioner, is the author of Taking Care of Time, winner of the Wheelbarrow Poetry Prize (Michigan State University Press, 2018). Her other poetry collections include Leopold’s Maneuvers, winner of the Prairie Schooner Poetry Prize, and Details of Flesh (Calyx Books). Her non-fiction publications include When the Nurse Becomes a Patient: A Story in Words and Images and The Heart’s Truth: Essays on the Art of Nursing. Davis is co-editor of Learning To Heal: Reflections on Nursing School in Poetry and Prose (Kent State University Press 2018). She has received an NEA Poetry Fellowship, three CT Commission on the Arts Poetry Grants, and is an annotator for the NYU Literature and Medicine Database. “Entering the Sick Room” and “It Was The Second Patient of The Day” (Poetry) www.cortneydavis.com @nurseprofile
Gather the Night by Katherine DiBella Seluja
“A schizophrenic is no longer a schizophrenic…when he feels understood by someone else” reads the epigraph on this quietly powerful book of poetry by pediatric nurse practitioner Katherine DiBella Seluja. The words come from Swiss psychiatrist and psychoanalyst Carl G. Jung and introduce the reader to the emotional heart of the book, which movingly reflects the facets of the writer’s life, as a clinician, poet and understanding sister to a brother named Lou who lived with schizophrenia and substance addiction.
The slim volume, published by the University of New Mexico Press, is divided into four sections: Time Travel; Free Concert; Sing to Me; and Stars Speak. Each section starts with a short free-form prose poem in an imagined voice, perhaps that of Lou’s, drawing a vivid visual tableau. In terms of overall structure, the book has a narrative arc that spans from childhood through adulthood, from beginnings to endings. Some poems are tales of families and communities dealing with mental illness in everyday life and in startling moments of illness and death. Throughout, Seluja, whose poem about Parkinson’s, “Not Every Homemade Thing,” appeared in our Spring 2017 issue, brings her vivid language, compassionate affection, deeply-felt visions and clinical observations into poems that transport readers close to the tragedies and the moments of inspiration, as well as the experience of grief and acceptance, as she receives and perceives them.
One of the most original and skillful aspects of this collection is that we hear more than the poet’s voice on these pages: Seluja has said that Gather the Night includes “prose poems and persona poems that express the voice of psychosis, the voice of addiction and Lou’s imagined voice.” While each poem stands solidly on its own, reading from beginning to end increases the intensity of the connection with the people, places and things in it. In Time Travel, for instance, we see neighborhoods and neighbors, some sly and seductive (Reynaldo in “Chiquita”) and some down-to-earth and welcoming (Scottie, the grocer and Mrs. Gratzel, the baker’s wife in “Local Grown.”). We see the pummeling a sister gets from a brother in the name of karate practice in “Kata,” or the way a mother delivers bad news in “Storm Hymn”:
One thin crack in the plastic sign
on the locked ward door
Winds its way through
Authorized Personnel Only
like a branch of the Hackensack River
where we used to play.
Dried mud thick on our shoes
split in so many places,
our mother’s face when she said,
We just admitted your brother;
he told us his crystals were melting.
Waiting for the orderly to turn his key
I turn back to our winter childhood refuge
under the cellar stairs.
We were base camp
guardians of snow
charted drift and temperature
graphed hope for Sunday night storms.
Now gray clouds
and Thorazine doses increase,
he wanders the blizzard alone
no guide rope tied to the door,
unique as each stellar dendrite
no two of him alike.
Along with the concrete, graceful imagery of the poems, we also receive information about illness and madness—and how the clinical world handles it, especially in the second section, Free Concert. We hear from a doctor in “The Psychiatrist Said” (“It’s [the schizophrenia] all a matter of proteins/We’ll have it cracked in three to four years”), while we glimpse inside a medical facility in “Spinning with Thorazine.” We witness Seluja’s ambitious way of contemplating and confronting the big-picture issues of care in poems such as the ironic “The History of Healing” (“It began as a huddle of knowers, passed through oral tradition/those who could ‘heal’ and those who at least attempted”). The chilling “When Your Son is Diagnosed in the 1960s” notes an earlier era’s method of treatment and causes (“His psychosis is tied to your mothering/and it’s time to cut the chord, be careful of the sting”).
Throughout it all, we get to know her brother Lou, a musician whose mandolin is elegantly described in “She Wore Opals at Her Neck” (“He fell in love with the mahogany curve/her hip and polish/the rosewood waist/and the way her neck fit to his palm”). Seluja expresses not only the affection and love she feels for him but also the wounds and wreckage that comes from a closeness with someone experiencing schizophrenia. There’s a complex layer of emotions at work here, that spans from caring and fearful to raging and raw, especially in the short “Telephone, 4 a.m.” where the resignation and anger in lines like “What if there were a box to keep him in/somewhere to store him away/to bring out with rainy weather/Then you’d have time to listen, unravel every line” comes through. In many of the poems in the Sing to Me third section, we intensely feel the frustration and fear for a loved one in peril.
In the final section, Stars Speak, poems turn elegiac, mourning Lou’s death. Again, the poet displays a skillfulness is accessing and expressing the complexity of emotions that accompany the death of a sibling. In “News of a Brother’s Death,” we feel the matter-of-fact reality of it (“Don’t kid yourself/it’s nothing like a movie”) while “Wanderlust” explores the way that Lou lives on in the tiny details of a life (“Find me/in the weave of my brother’s shirt/in the tread of mud on the floor”). Seluja mines sadness and strength in startlingly beautiful poems, “Here Among the Ruins” and “If You Need a Wall.” And it feels as if she’s composing a way to live in the world when there’s a significant loss in “Do Our Ancestors Listen When Called” that ends:
My heart is occupied with the ones I’ve lost, each with its own
celestial sphere, their pulse echoes the meridian.
I keep rearranging you like a favorite satellite, dragging you
into good orbit, your solar panels deployed to the stars.
Gather the Night ambitiously takes on the task of speaking about loss, addiction, madness, grief and love, bringing us into its intimate confrontations. We emerge from reading it with a deeper understanding of all of the above, a sense of wonder at the way we get through the harder, harsher aspects of our lives, and an appreciation for poets and nurses like Seluja who guide the way.—Donna Bulseco
Donna Bulseco, MA, MS, is a graduate of the Narrative Medicine program at Columbia University. After getting her BA at UCLA in creative writing and American poetry, the L.A. native studied English literature at Brown University for a Master's degree, then moved to New York City. She has been an editor and journalist for the past 25 years at publications such as the Wall Street Journal, Women's Wear Daily, W, Self, and InStyle, and has written articles for Health, More and the New York Times. She is Managing Editor of Intima: A Journal of Narrative Medicine.
Quite Mad: An American Pharma Memoir by Sarah Fawn Montgomery
Quite Mad is at once a well-organized history of mental illness, especially with regard to women, an examination of the role of the illness narrative, and a fascinating memoir of a woman’s struggle.
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