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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read more of her work on Medium.

The Beauty in Breaking by Michele Harper

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

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

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

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

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

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

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

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

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

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

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

The Doctor’s Dilemma by Daly Walker MD

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

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

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

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

Author photo: Sally Carpenter

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

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

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

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

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

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

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

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

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

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

Suleika Jaouad

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Cherie Henderson

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

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

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

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

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

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

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

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

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

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Angelica Recierdo

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

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

Linda E. Clarke

Michael Cusimano

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Robert Mundle

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