In the book—the first in Milkweed’s Multiverse literary series curated by neurodivergent poet Chris Martin—Hannah Emerson ushers us into her evocative mental universe with its unique rhythms giving voice to herself as a nonspeaking autistic artist and poet.
Read moreInterview with poet Chris Martin about Multiverse, a new poetry series from Milkweed
Earlier this year, Milkweed Editions, an independent non-profit publisher based in Minneapolis, launched Multiverse, a literary series devoted to different ways of languaging, curated by neurodivergent poet Chris Martin, whose new book May Tomorrow Be Awake: On Poetry, Autism, and Our Neurodiverse Future just came out from Harper One. The first book in the Multiverse series was Hannah Emerson’s debut poetry collection The Kissing of Kissing, which fulfills a key tenet of the imprint: To showcase editorial voices that emerge “from the practices and creativity of neurodivergent, autistic, neuroqueer, mad, nonspeaking and disabled cultures.” Creating this kind of series is a transformative act that enriches, enhances and transforms our current literary landscape. I interviewed Chris Martin about how Multiverse will open up a chorus of voices and sensibilities that our medical humanities community needs to hear and witness.
Thank you for getting together to talk about Milkweed’s Multiverse series that explores different ways of languaging. Could you explain that term and also speak about how the clinical community can learn from this core concept of your series.
‘Languaging’ is a term I got from Adam Wolfond, who is a non-speaking autistic writer from Toronto; his book “The Wanting Way” will be the series’ second title coming out in the fall. Adam likes to emphasize movement, emphasize how something is rather than what it is. One of Multiverse’s intentions is to disrupt the monolithic ways of seeing people and conditions and to bring out the wild variety of forms that language and autism and neurodivergence and disability take. When we’re speaking of non-speaking autistic writers, there is a tendency to think of them as ‘exceptions’ and have one stand in for everybody, whether it’s Tito Rajarshi Mukhopadhyay or a book like “The Reason I Jump” by Naoki Higashida. But when one or two people stand in for everyone else, we forget there’s this amazing amount of variety. By giving a range of neurodivergent writers, we give them a platform to express themselves exactly how they express themselves and show how much they diverge from each other. [It’s limiting to] think we sum up a condition or way of life with one particular set of ideas.
That’s one of the challenges for the clinical community: Learning to differentiate and do a ‘close reading’ of each patient provides a chance for clinicians to be creative and open, rather than relying just on symptoms, tests, data. Most clinicians are taught to be so by the book and what feels embedded in Multiverse as a concept, and in Hannah Emerson’s poetic universe as well, is learning to be open to a different language or point of view. The question is if clinicians can adapt to that discipline of puzzling out a new language in the hospital room or ER—poetry teaches patience and openness to a different language but will that skill be transferable when confronted by a patient’s weird blood count or cough that won’t go away?
When you say ‘by the book,’ it’s such a powerful phrase, because it is by the book! If Multiverse could be by the book writ large as a resource for different voices, that is amazing. The more nonspeaking writers I engage with the more my understanding of autism grows, and the more my understanding of myself grows, learning about what it means to be me, a human animal. The difficulty you point to is really interesting, and we often misapprehend where that difficulty arises. Primarily, it is that the language isn’t transactional, it doesn’t follow neuro-normative patterns that allow it to be instantly consumed and that arises in medicine too. We’re living in a capitalist ableist society, a neuro-normative society trying to get everyone on a conveyor belt where they will be, inevitably, crushed, at least the way I see it. But who’s to say we have to move at that pace? There are other ways to communicate, other ways to be together, and if those ways feel challenging at first, it’s because they’re pushing in the opposite direction of the conveyor belt. We have to work hard to step away and to take things on their own terms rather than follow preconceived ways of how language should work or how people should work and I think there couldn’t be anything more important than that.
One concept taught in Narrative Medicine at Columbia University by Dr. Rita Charon, is co-constructing a narrative. Along with close reading and understanding tone of voice and point of view, there’s also how the self and the other construct a shared story in the clinical encounter. There’s the doctor’s point of view and the patient’s – and the idea of coming together to create this story involves a ‘shared power’ – not just, ‘I’m the doctor, the authority figure, and I hold the power here.’ How does your series speak to this concept?
One of the things we think about at Multiverse is “can we foster and cultivate consensual futures together?” By that, we’re going back to the roots of that word to think about how we feel together in the world that emerges between us. We’re also interested in consent—a consent that is a constant process, to involve the writer on their own terms or at least in a place where we can ‘find’ each other instead of making them answer things in a neurotypical way. Like with Adam: His visual acuity doesn’t allow him to fix the words on the screen—they swim on it—so when it came to making line breaks we had to think of the accommodations to allow Adam to do this. From the beginning Adam totally questioned the authority that comes with authorship –so he also commissioned about a dozen poets, writers and thinkers to participate in this experiment of line breaking. Then he figured out which ones he preferred – his own or theirs. Also, he doesn’t see them as breaks but as windings like a river – so he would have writers unwind the poems, then rewind them and bring their own sensitivity. Other writers liked the idea and adopted the practice of commissioning others (not me, I love doing line breaks, it’s one of my favorite things). But what started out as an accommodation became this methodology that others did too.
“Unwinding” as a way of disrupting in a creative way – it’s a great metaphor that clinicians and caregivers can use when feeling out of control of a situation. The idea of looking at a clinical encounter and unwinding it in order to make the breaks (or rewind the circumstances) is useful.
It’s so important to ask ourselves what we’re trying to fix, because of the non-normative linguistic approaches these writers have. In Hannah’s book, there’s a lot of repetition, there’s no punctuation, there’s a lot of anaphora, starting lines with the same words, ending lines with the same word, those are literary devices used by many people, but I think Hannah does it in a particular way that it takes one awhile to figure out how the poems move, and once you do, it becomes really seamless. There is a way of reteaching yourself how to read and for each of these books, I hope that’s the experience on some level, the sense of ‘Oh I have to relearn how to read because I’m encountering something so true to its own patterns that I have to listen very closely and be humble and figure out how this is moving.’
That’s the experience a doctor has when meeting a new patient. That level of engagement is what NM tries to teach so clinicians feel comfortable instead of bothered by newness. Speaking of new, let’s focus on The Kissing of Kissing. How should someone new to poetry and to Hannah Emerson’s work engage with this new collection?
Read it out loud. One of the amazing paradoxes of Hannah’s work is it’s so incredibly, entrancingly lyrical it begs to be read aloud. When it’s read aloud, you’re experiencing it and that’s the best possible thing to do. Also, trust that the book will meet you in the middle. If you spend a little time with it you’ll find yourself being addressed in really direct ways. That’s what I love about Hannah’s book: while on some level it’s difficult, there’s also this incredible connectivity and directness toward the reader and those who do connect will get hit with a lightning bolt.
In an interview you did with Hannah, she voices the following remarkable passage:
“Nothing is the stillness that is the moment that is now yes yes. Please try to go to the place that is in all of our dark places that we try to run away from every moment of our great great great beautiful lives yes yes. Please try to understand that these thoughts go directly to the place that we need to go to deconstruct the freedom that we think is the way to a comfortable life that has brought us to the brink of extinction yes yes.”
Talk about how readers, especially clinicians, can be open to the ‘nothing’ Hannah speaks of when many have been trained in suppositions about normalcy.
For one thing, resist that quick grasping or groping after categories and the way we want to fill the space quickly with things we think are productive but may instead cover up and smother an authentic connection with someone that would lead to authentically learning who they are. I was just reading “How to Do Nothing,” a remarkable book by Jenny Odell who talks about the philosopher Martin Buber, and his idea of the I-it relationship – one of instrumentality where you’re treating someone like an it so you can get what you want when moving through your own experience, and I-thou relationships, where you truly behold someone on an equal plane, and are ready to learn from who they are. I feel like that’s the space of the ‘nothing’ and one thing Hannah is saying is there’s a kind of plane where we can meet each without those preconceptions and humbly slowly carefully learn about each other and what arises there will have an authenticity and realness to it that will be nourishing and hopefully, in clinical terms, will be incredibly useful.
Why is poetry such a potent tool to disrupt our ways of thinking?
One of the things I’ve tried to figure out is what is this incredible reciprocity between autism and poetry. Hannah writes a lot about freedom – it’s not a traditional idea of freedom, but rather it’s that “dreaming kissing life.” One of the things that carries that freedom is, I would almost say, a love—the pattern of love. For me, every poem is a love poem, no matter what it’s about. The patterns you infuse that poem with communicate a number of things. One is that the author cares about how the poem meets you; in prose, there are a lot of patterns but a writer is often so hemmed in by grammar, right? It’s sometimes hard to feel the care in the way language is shaped, whereas with a poem there are so many strategic choices being made you really feel like someone has made something for you—there’s such an intimacy to that. And the word poesis, the origin of poem, is ‘to build or compose, to make.’
In The Kissing of Kissing, there’s such an intimacy in the way a poem meets you, greets you, kisses you, that’s hard to find in other places. But it’s also a place where you can take off everything that’s extraneous, you can drop all the standardizations or make all your own choices— whether it’s punctuation, capitalization, the shape of the poem, there are just so many potential choices you can make. It’s analogous to moving through the world and something I’ve had to learn—how do I unmask as I move through the world as a neurodivergent person, a disabled person, how do I allow who I really am to meet other people and where do I find spaces that are safe enough. A poem I feel takes all those aspirations of unmasking and meeting people in direct and consensual spaces, and it combines with our love of song.
You’ll find that all through Hannah’s work, and one of the things clinicians might be interested in is that Hannah is echolalic – she’s nonspeaking but she’s often always singing. Song, I believe, is where language originates, language began as song, and then coalesced in other forms associated with story and then written language. But poetry returns us to the original impulse of song, which is something we use to celebrate and come together in communities, something that enjoins us.—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 editor-in-chief of Intima: A Journal of Narrative Medicine, a literary journal recognized as a leader in the medical humanities world.
In Love: A Memoir of Love and Loss by Amy Bloom
Amy Bloom’s moving memoir, In Love: A Memoir of Love and Loss, is a love story about an idyllic marriage shattered when Bloom’s 60-year-old husband Brian’s forgetfulness takes over their lives. His personality changes, and he becomes distant and indifferent. “Names disappearing, repetition, information turned upside down, appointments and medications scrambled. Suddenly it seemed we argued endlessly about everything,” Bloom laments.
Read moreWords We Cannot Say by Sita Romero
Sita Romero’s debut novel Words We Cannot Say offers a true and unflinching look at pregnancy and hardship. The story is told through the lives of three different women as they navigate the struggles of friendship, motherhood, pregnancy and loss. Though the women seem to be entirely different, their lives connect in organic and often overlooked ways.
Read moreSmile: The Story of a Face by Sarah Ruhl
In her memoir Smile: The Story of a Face (Simon & Schuster), Sarah Ruhl tells the story of her ten-year struggle with Bell’s Palsy. Ruhl was (and is) a successful playwright when she and her husband discover they are having twins. That news, coupled with the fact they already have a daughter, leads Ruhl to worry she will struggle to write again because of the time and energy needed to balance a growing family and the high-stakes professional demands and drama accompanying her profession. That concern becomes even more complicated when she is diagnosed with cholestasis of the liver, where bile seeps into the bloodstream causing itchiness, but also possibly leading to the death of the children.
Read moreShow 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.
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
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.
HEALING: When a Nurse Becomes a Patient by Theresa Brown, RN
Theresa Brown’s 2015 book The Shift explored the question of what it means to care for others. In her new memoir, Healing: When a Nurse Becomes a Patient (Algonquin Books), Brown chronicles her experience with breast cancer from diagnosis through treatment and deepens that question into: How can we make the healthcare system more compassionate?
Read moreWhat Cannot Be Undone: True Stories of a Life in Medicine by Walter M. Robinson
Our training as physicians teaches us to bury our emotions, to remain objective and detached, and it has become clear that patients can perceive doctors as lacking empathy by hiding this aspect of themselves. The complexities of this dynamic are explored in Walter M. Robinson’s What Cannot Be Undone: True Stories of a Life in Medicine, a collection of essays examining the self-destructive results of detachment from the physician’s emotional responses, published recently by the University of New Mexico Press. When physicians cannot tolerate the pain and suffering of their inner life, compassion-fatigue, burnout, substance abuse and suicide are possibilities.
Read moreSentient: How Animals Illuminate the Wonder of Our Human Senses by Jackie Higgins
Letter to a Young Female Physician: Notes from a Medical Life by Suzanne Koven
Letter to a Young Female Physician: Notes from a Medical Life by Suzanne Koven, MD is both instructive and empowering for a professional audience. The “young female physician” is Koven herself 30 years ago, and the memoir’s title comes from a New England Journal of Medicine op-ed she wrote that brought to light Imposter Syndrome (a perceived and misplaced self-doubt that high-achievers are unworthy of the confidence others place in them and that soon enough they will be found-out as imposters). A primary care physician, Koven creates a narrative that addresses issues facing women in medicine such as pay iniquity, harassment and sexism. While all of the above is plenty to keep readers in the clinical world engaged, the book’s success resides in something else—the way Koven approaches universal truths by examining and honoring the specific experience of her life as a woman and as a doctor. Going beyond the halls of the hospital and the titular “young female physician,” she creates a narrative sure to resonate with many.
Read moreAt Peace: Choosing a Good Death After a Long Life by Samuel Harrington MD
At Peace: Choosing a Good Death After a Long Life is a book that should be studied by students preparing themselves for careers in medicine, by those taking care of aging patients, by family members who don’t want their loved ones to suffer, and by everyone who desires for their life to end in peace with a good death.
Read moreThe War for Gloria by Atticus Lish
Fiction has the ability to bring a world to life, to offer other viewpoints and ways of looking at the world, and it also has the ability to put us in another body in order to give us the experience of a disease or condition. In Atticus Lish’s excellent new novel The War for Gloria (Knopf, 2021), the disease is amyotrophic lateral sclerosis, ALS or Lou Gehrig’s disease. The story is told from the perspectives of Gloria and her son Corey, who is a young teenager when Gloria is diagnosed with ALS. Lish, whose novel Preparation for the Next Life won the 2015 Pen/Faulkner Award, brings to life the world of working class Boston suburbs.
Every Deep-Drawn Breath: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine in the ICU by Wes Ely, MD
Every Deep-Drawn Breath chronicles Dr. Ely’s journey as a critical care doctor and in some ways, reads like a Hegelian dialectic, that is, an interpretative process that uses contradictory propositions to reach a firmer truth. His story begins with a thesis: a young critical care physician focused on saving lives in the Wake Forest intensive care units. “My aim with my patients was to get their broken systems back to functioning as they should,” Dr. Ely writes
Read moreBlack Death at the Golden Gate: The Race to Save America from the Bubonic Plague by Steven K. Randall
As life begins to resume a sense of normalcy, it’s important to reflect upon the lessons learned from the pandemic. Numerous parallels may be drawn to the bubonic plague outbreak of San Francisco at the start of the 20th century. Black Death at the Golden Gate by David K. Randall provides an account of the efforts led by public health officials to combat this disease. Randall is a senior reporter at Reuters who drew upon a wide array of sources, including telegrams and contemporary newspapers, to construct a narrative of the plague. Each chapter provides thorough illustrations of the physicians, scientists, and patients involved, to further draw the reader into the immediacy of the events.
Read moreThe Beauty in Breaking by Michele Harper
In the powerful memoir The Beauty in Breaking (Riverhead Books 2020), Michele Harper challenges us to examine the transformation of trauma and how painful experiences figure prominently in one’s past and present. In honest and contemplative language, Harper, a doctor and graduate of Harvard University and the Renaissance School of Medicine at Stony Brook University, courageously describes a challenging childhood that exposed her and other family members to ongoing outbursts of physical abuse. Dr. Harper gives insight into how this adversity informed her decision to pursue a career as an emergency room (ER) physician, one that now spans more than a decade working at various locations in Philadelphia and the South Bronx:
“Unlike in the war zone that was childhood, I would be in control of that space, providing relief or at least a reprieve to those who called out for help. I would see to it that there was shelter in the spaces of which I was the guardian.” (19)
In navigating this career of service, she regularly draws upon her resiliency to confront violence when caring for gunshot victims, responding to code blues, or de-escalating threatening patient behavior. Simultaneously, Dr. Harper impresses upon readers the extraordinary privileges of being a healer, as well as the difficulties of stewarding the distressing stories accompanying that role.
As Dr. Harper continues to meditate on her life’s milestones, including divorce, residency graduation and new leadership roles in the clinical world, she paints a sobering reality of her patients’ lives. In often invisible ways, society inflicts lasting and generational trauma that tends to be outside of individual control, especially for historically underserved populations. From the perspective of an African-American female physician, the author shares her reflections on heartbreaking interactions with young patients, like Gabriel and Jeremiah, both of whom she treats for head trauma:
“I suppose it’s a matter of faith whether or not we choose our starting ground before we’re born into this life. Some begin the journey on flat, grassy meadows and others at the base of a very steep mountain. One path, seemingly smooth, can make it nearly impossible for us to see the ditches and gullies along the way. The other, while painfully tough, can deliver what it promises: If you can navigate that path, you’ve developed the skills to scale Everest. It isn’t fair on many accounts; it simply is…All deserve the chance to speak and be heard and be touched. If we’re lucky, we’re touched at every station along the journey, and if nothing else, then at the end.” (137-138)
These carefully curated thoughts about her patient encounters challenge readers to critically think about the culture of blame and stigma towards those facing complex circumstances, an idea expressed succinctly by an ER social worker in the book: “When [people are] at war, the rules are different.” Dr. Harper highlights the continued ripple effects of systematic racial bias and other forms of discrimination in healthcare and beyond.
Still, the path to healing is complex. Dr. Harper herself claims no simple solution, knowing she has to navigate her own fraught path forward too. While contemplating reconciliation with her estranged father, she draws us in as readers interested in clinical encounters and how they may have an impact in our lives; she helps us understand the many complex ways patients offer invaluable wisdom too, if only providers choose to listen. In one interaction with a patient who is a veteran, Dr. Harper skillfully demonstrates how both she and the patient find liberation in acknowledging shared loss.
As an epidemiologist by training, I am reminded that there is always a human story behind the numbers. Narratives like Dr. Harper’s often transcend the limitations of quantitative metrics, such as incidence or rates, by offering a compassionate and instructive glimpse into the lives of those who are suffering. These stories raise important ethical questions about how we, as a medical and research community, should respond. In my professional and personal life, I hope to amplify these stories of oppression so they may be perceived at the same level of legitimacy as other forms of communication in order to spur organizational change.
The Beauty in Breaking is aptly titled, as the author/physician beautifully shows there is indeed beauty in the examination of the trauma one has experienced and struggled to overcome. Her storytelling brims with hope while contributing to a broader conversation about diversity and meaningful inclusion in medical training and beyond.—Brianna Cheng
Brianna Cheng has a MSc Epidemiology from McGill University, and completed a Narrative Medicine Fellowship at Concordia University. She now works as a consultant epidemiologist for the WHO. Her writing has appeared in Intima, Journal of General Internal Medicine, CMAJ Blogs and Families, Systems & Health. She currently serves as an Editor for the McGill Journal of Medicine. @withbrianna
The Hospital: Life, Death, and Dollars in a Small American Town by Brian Alexander
In The Hospital: Life, Death, and Dollars in a Small American Town, writer Brian Alexander takes a deep look into the continued validity of these statements in today's healthcare arena.
The Ohio native and author of the award-winning Glass House, which zeroed in on the decline of the once-thriving factory town of Lancaster, centers his narrative on individuals affected by the corporatization of America. He follows Phil Ennen, CEO for 32 years of Community Hospitals and Wellness Centers, as he attempts to keep his small hospital in Bryan, Ohio, open for business. There’s more than just healthcare at stake, as Alexander underscores:
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"The hospital was special. It wasn't only a community asset in the legal sense; it was a community glue, a community economic powerhouse, a community source of employment, a community lifeline."
The Doctor’s Dilemma by Daly Walker MD
In his new compilation of 16 short stories titled The Doctor’s Dilemma, Dr. Daly Walker provides a stark portrait of physicians facing their own and their patients’ mortality, as well as navigating the practical morality of medicine —striving to do “right” in complex circumstances. As a retired general surgeon and accomplished writer, Dr. Walker melds intimate knowledge of medicine and particularly the surgical theater with a profound insight into aging, intimacy and loss. His archetypal character is an aging surgeon facing degradation of skill and encroaching self-doubt—changes that bring a sense of insecurity, a questioning of identity and a loss of control. His protagonists project outward strength and heroic intent, but struggle to find grounding in fraught relationships and their identity as physicians. This noble effort—to be present and perfect for one’s patients and loved ones, while reckoning with one’s fallibility and insecurities—is familiar to any physician. But that inclination is also highly relatable to general readers coping with the demands of daily life.
Dr. Walker writes what he knows in vivid, engrossing detail. Most stories are set in small-town Indiana, where he was raised and worked for decades as a surgeon. A Midwestern sensibility permeates his work in the jocular traditionalism of the surgeons we meet and in the dignity and modesty of other small-town characters. Dr. Walker brings further autobiographical elements; his characters are often veterans of wartime surgery with wisdom and relationships borne from intense, chaotic environments.
The Doctor’s Dilemma is divided in three sections: Mortality, Morality and Immortality, though these themes are often intertwined. A group of stories present aging surgeons losing skill and confidence, or on the other side of that deterioration. In “One Day in the Life of Dr. Ivan Jones,” we feel the confusion and disorientation of a retired neurosurgeon with dementia, as well as his physician son’s grief and struggle with his father’s loss of self. In “Old Dogs,” an aging surgeon has shaky hands and battles through a difficult aneurysm repair with scrutiny from an audience in the OR. We are asked to consider the value of life as absolute or relative— for a hemorrhaging Jehovah’s Witness patient where transfusion might negate an eternal afterlife; for a death row inmate needing intubation in the setting of scarce resources in a pandemic ridden emergency room. In “India’s Passage,” there is a gripping account of a young woman’s death during a routine laparoscopic surgery, and the oppressive guilt felt by the surgeon as well as the extreme grief and judgment of the woman’s mother. Ultimately there is reconciliation, but no character emerges unchanged from this tragedy.
Stories also focus on morality with physicians trying to do the “right” thing for their patients and their loved ones and neighbors. In “Drumlins,” an older surgeon physically marred by skin cancer surgery compassionately treats a young woman losing her breast from cancer. In “Jacob’s Ladder,” a retired orthopedic surgeon who lives a solitary life in the woods, having lost his wife, pines for the companionship of a young woman and ultimately saves her from an abusive partner and her son from the consequences of retribution. The idea of responsibilities of son and father comes out in several stories: In “Crystal Apple,” a physician who recently lost his mother is startled by the discovery that his father is not who he thought and grapples with his origins. In “Nui ba Den,” a surgeon reconvenes with a lover from his time in Vietnam decades later, and contemplates how the past influenced him and how his present self views the past. Mortality and morality are intertwined in “Blood,” where a mother adamantly refused blood transfusion for her critically ill Jehovah’s Witness son who is a minor; in “Pascals Law” where a physician intubates a man on death row; and in “Resuscitation” (first published in the Fall 2020 Intima) where a man stricken by Covid is intubated though other patients may have a greater likelihood of survival.
There is an immediacy to Dr. Daly’s imagery and language; his prose style is straightforward and deceptively simple in light of the issues he addresses, as this passage about a doctor’s thoughts after a challenging day at the hospital from “Resuscitation” demonstrates:
On his way home, Slater drove through the rain. The silent, empty streets and unlit shops conveyed an aura of apocalypse. The drops that splattered his windshield reminded him of contaminated droplets spewing from Mr. Bertini’s lungs. The car’s wipers slapped side to side. Slater had read Camus’ The Plague, and he felt like Dr. Rieux traveling through his plague-stricken city, finding it hard to believe that pestilence had crashed down on its people. He came to Shoofly, a chic bar and restaurant. Through a water-speckled window, he could see young people laughing and drinking, crowded together without masks. Their gaiety and disregard for the virus angered Slater. Don’t they care about others? He blamed them for him not being able to hug his children or sleep with his wife. He blamed them for Mr. Bertini’s illness. He wished they could see his patient and know what fighting for your life is like.
A Doctor’s Dilemma brings fresh insight and reflection to enduring themes of medical and surgical care—how to be human and have immense responsibility for one’s patients; how to balance the personal and professional knowing that perfection is impossible; and how to forgive oneself for that imperfection knowing that good intentions and hard work may need to be sufficient.— Eli Hyams MD
Elias Hyams MD is an adjunct associate professor of urology and a robotic surgeon at The Warren Alpert School of Medicine at Brown University in Providence, RI. He has previously served on the faculties of Dartmouth’s Geisel School of Medicine and Columbia University School of Medicine. He completed his undergraduate studies at Yale and is a graduate of the University of Pennsylvania School of Medicine. His residency at New York University-Langone Medical Center was followed by a fellowship at John’s Hopkins. His academic interest lie diagnosis and treatment of cancer of the prostate.
Between Two Kingdoms: A Memoir of Life Interrupted by Suleika Jaouad
I had cancer in my early 30s. None of my peers had gone through that experience, and this was back in the early aughts, a few years before the birth of the social media industrial complex, so as I navigated this new space, I read cancer memoirs. A lot of them.
At first, I appreciated seeing my own experiences echoed on the pages – the time when the doctor fumbled the diagnosis, the time when locks of hair fell out, the time when a friend couldn’t cope so she disappeared. After a while, though, the stories I read started to have a sameness about them. A lot of doctors fumble diagnoses, a lot of hair falls out.
Twenty years later, I’m studying end-of-life narratives for my doctoral dissertation, and I’m still reading a lot of cancer memoirs. I grow pickier each year, but I’m happy to report that Suleika Jaouad finds fresh territory to explore with her well-crafted book Between Two Kingdoms: A Memoir of Life Interrupted.
Jaouad was 22 and working a paralegal gig in Paris when she learned she had acute myeloid leukemia, a disease usually found in people three times her age. She was living with Will, whom she had met in New York just a few months earlier, and their relationship forms the through line for the book as cancer shoves them past their meet-cute beginnings and moves them into the emotional turmoil of what ends up being years of treatment.
We get only Jaouad’s telling, of course, but she does not go easy on herself, describing her anger when he doesn’t give as much support as she wants, even as she shows us he was breaking with the effort to give what he did – especially considering he had never made any vows about sticking around “in sickness and in health.”
I squirmed under the tension around how much this provisional relationship could bear. At one point, Will, desperate for a respite from caregiving, floats the idea of joining friends for an out-of-state music festival, and we register Jaouad’s response:
“I wanted to be the graceful leukemic starlet who told him, Take as many breaks as you want, you deserve it, have a wonderful trip, my love, but there is spiritual exhaustion that comes with maintaining this kind of charade after a while. As a patient there was pressure to perform, to be someone who suffers well, to act with heroism, and to put a stoic façade all the time. But that night, I didn’t have it in me to listen to how hard my illness was on Will – how badly he needed a break when I didn’t have the option of taking a break from this body, from this disease, from this life of ours” (161).
Here is a side of cancer we never see in get-well cards.
The relationship is only one illustration of what can make cancer different for young adults; her professional life is another. Jaouad was floundering in the months after college with both yet-undiagnosed physical symptoms and with the existential questions of what do with her life.
She had fled to Paris with a vague idea of becoming a foreign correspondent in her father’s North African homeland. Suddenly, because of her illness, she was back in her childhood bedroom in upstate New York, rebalancing her fresh independence with her even newer vulnerability. There are the unexpected questions that arise that demand her to look into her future, one that’s almost impossible to foresee. Although she had barely thought about motherhood, for example, she finds herself having to remind her medical team to consider preserving her ability to have children.
Often-harrowing treatment consumes the next four years and takes us more than halfway through the book, which originated in a New York Times column. She finds a creative band of “young cancer comrades” that includes the poet Max Ritvo. Only three of the 10 were still alive by the time she writes the book.
The second section veers to another memoir device, the travelogue. She first visits India, then makes solitary sojourns to Vermont, leaving only the final quarter of the book for the 100-day, 15,000-mile U.S. road trip suggested by the book’s romantic cover photo, which shows Jaouad sitting atop a hipster-friendly 1972 Volkswagen camper van with her rescue dog, Oscar. Along the way, she visits people who responded to her newspaper columns because they connected to some part of her experience – people with serious illness, but also others, a grieving parent and a death-row inmate, who related to her narrative voice and found common ground with her illness experience.
The trip allows her physical and psychological space to reflect, leading to some of the book’s finest passages. After visiting Bret, a young filmmaker with lymphoma, she writes:
“I began to think about how porous the border is between the sick and the well. It’s not just people like Bret and me who exist in the wilderness of survivorship. As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our existence. The idea of striving for some beautiful, perfect state of wellness? It mires us in eternal dissatisfaction, a goal forever out of reach. To be well now is to learn to accept whatever body and mind I currently have” (274).
The meaningful interactions offset my sense that the trip has been manufactured for (or by) a book deal in the vein of memoirs like A.J. Jacobs’ My Year of Living Biblically and Elizabeth Gilbert’s Eat Pray Love; Gilbert even provides Jaouad with a book-jacket blurb. The feeling was only heightened when I realized she actually did the road trip in a borrowed old Subaru; the van was bought long afterward, as a reminder of one she saw during the trip, as she notes on the last page of the epilogue.
I wish her publisher had resisted this urge. The golden-yellow van makes a great photo, of course, but the quest it suggests plays neatly into conventional hopes for what the psychotherapist Kathlyn Conway calls the triumph narrative, where illness only makes us stronger and wiser. In fairness, Jaouad herself follows this route to close the book, declaring that she treasures her heightened awareness of her finitude even if her early adulthood was “wrenching, confusing, difficult – to the point of sometimes feeling unendurably painful … I would not reverse my diagnosis if I could. I would not take back what I suffered to gain this” (340-41).
This may be true, but the reflection comes together in less than two pages, suggesting her feeling during an NPR appearance when she was “determined to end the interview on a strong note” (135).
And then there’s the book’s subtitle phrase “life interrupted,” no doubt meant to remind readers of her newspaper column of that same name. The allusion to Girl, Interrupted, Susanna Kaysen’s 1993 memoir of mental illness is especially clumsy coupled with the reference to Susan Sontag in the main title – if not as profound as Sontag, Jaouad’s writing certainly stands on its own. More significantly, however, the phrase implies that her illness was not part of her life. Her book tells a different story.—Cherie Henderson
Cherie Henderson is a doctoral candidate in communications at Columbia University. Her dissertation explores stories told by younger adults with terminal illness, and what we can learn from them about the cultural models of behavior for the ill and dying. She has also worked at the intersection of death and humor. Henderson, who has initiated and led writing workshops for patients at Memorial Sloan Kettering cancer center, holds a master’s degree from Columbia in narrative medicine and was a faculty associate, fieldwork supervisor and post-graduate fellow in that program. Earlier, she was a staff editor and reporter at The Miami Herald and The Associated Press. She graduated from The University of Texas at Austin in journalism.
You Will Never Be Normal by Catherine Klatzker
An instruction manual on falling apart to come together again, Catherine Klatzker’s frank memoir, You Will Never Be Normal, confronts the darkness with the enlightenment of telling. Klatzker, a retired pediatric ICU nurse of 22 years, weaves together a lifetime of repressed trauma and abuse with the laser-sharp humanity of an attentive RN. The story—and the author’s often wrenching rendering of it in flashback vignettes—is not the typical clinician-as-patient narrative but one that engages the reader to join her as she makes her way towards healing.
The embodied experience of an adult survivor of sexual and emotional abuse is one of shame, panic and confusion, and Klatzker tells it all with grace, sparing little in her exploration of the physiological manifestations of her own trauma such as insomnia and incontinence. We feel her suffering but also her professional detachment: It’s as if she’s conducting a thorough patient history of her own past.
Readers become familiar with the embodiment of her triggers as she welcomes us into the wounds of her intimate relationships. Klatzker’s family becomes our family, her partners our partners—and her demons become ours. “No one knew the extra layer of experience I brought to my own pain, to my own body, filtering my experience of myself,” she tells us. To cope, Klatzker mastered the art of dissociating into “parts,” or what she describes as “going away,” sometimes happening while she was at work in the hospital or at home caring for her child.
Learning about the causes and triggers of Klatzker’s Parts (or what is later labeled Traumatic Dissociative Identity Disorder) is a heartbreaking revelation throughout the memoir. “What I knew was gut-knowledge, stored in my body,” Klatzker states, and that knowledge unfolds in devastating and plain language, a subconscious realization oftentimes unfolding mid-sentence. Her Parts often take hostage of her mind at random moments, coming into play when she’s driving or during emotional interludes with her husband. Fragmented memories emerge in the many versions of herself she meets and refines over the years.
In unpacking precarious relationships, deaths, and more, Klatzker’s relationship with her psychotherapist is one that models seeing her as a whole person and not just the sum of her parts. “He spoke in language all my parts would understand, trying to get the same message across to all of us, so there would be no gaps.” The deep work they do together inspires readers to reflect on the way healing from trauma is rarely linear and never truly ends. Yet there is a sense of resolution to Klatzker’s bleak house of pain: In telling her story, she confronts her past and envisions the way to move forward. In the end, the book’s title takes on new meaning: You Will Never Be Normal is not a life sentence but instead an acknowledgement of difference and an acceptance of it.— Angelica Recierdo
Angelica Recierdo works as a Clinical Content Editor at Doximity in San Francisco, CA. She received her Bachelor of Science in Nursing from Northeastern University and her M.S. in Narrative Medicine from Columbia University. Angelica was also a Global Health Corps Fellow in 2016-17. She has worked at the intersection of health and writing/communications, specifically in the fields of healthcare innovation, health equity, and racial justice. Angelica is a creative writer, and her work can be found in Intima: A Journal of Narrative Medicine, Literary Orphans, HalfwayDownTheStairs and The Huntington News, among others. Her essay “Coming Out of the Medical Closet” appeared in the Spring 2014 Intima.
A Lab of One's Own: One Woman's Journey Through Sexism in Science by Rita Colwell, former director of the National Science Foundation
By cleverly playing with the title of Virginia Woolf’s pivotal feminist essay, “A Room of One’s Own,” Rita Colwell informs us what this book will be about on its very covers. Colwell is a pioneering microbiologist and the first woman to lead the National Science Foundation. She is a Distinguished University Professor at both the University of Maryland and Johns Hopkins University’s Bloomberg School of Public Health. A professional rather than a personal memoir (although for a passionate scientist like Colwell, the two are one and the same), A Lab of One’s Own chronicles and humanizes the female experience in the scientific community over the last half a century.
There is much to admire in this account, co-authored by science writer Sharon Bertsch McGrayne. Riveting chapters describe Colwell’s groundbreaking fieldwork on cholera in Bangladesh, while the exciting role she played in the CIA’s efforts to find the person behind the Anthrax letter attacks in 2001 makes for a thrilling read. Still, it is Colwell’s well-documented female experience of the pursuit of science that elevates the book into a uniquely excellent read.
I was well aware of the fact that what we today easily identify as sexism was “simply the way things were” some fifty years ago, but I must confess I was truly shaken by reading about how far and deep this sexism went. I was distraught to find, in the very first chapter, a young, driven student being told by the late Austrian-born microbiologist and professor Henry Koffler: “We don’t waste fellowships on women.” I’m not certain what I expected, but I did not expect to read a story in which another scientist Robert Steiner simply didn’t allow Colwell to finish her talk at a symposium.
Nor did I expect to read how colleague Einar Leifson yelled at Colwell over post-conference dinner, asking loudly in front of the entire room whether her husband knew where she was and why she wasn’t at home and pregnant. I most certainly did not expect to read that Francis Crick, one of the men who claimed the Nobel Prize for the discovery of the molecular structure of DNA—with no acknowledgement that a photograph taken in chemist Rosalind Franklin’s lab was instrumental in the discovery—casually grabbed molecular biologist Nancy Hopkins’ breasts when they first met. Then there was the shock of reading that Hopkins, after having been a tenured professor, wasn’t allowed to teach a genetics class based on her own discoveries, but instead was asked to teach the material to her male colleagues who would lecture instead. The reason for the switch? She was told male students wouldn’t believe any science explained to them by a woman.
Two aspects of this memoir are striking.
First, Rita Colwell has no fear when it comes to name dropping. No matter who they are, how well-respected, how highly ranked, alive or dead, the men who were part of the agenda to keep women out of science are identified and quoted. Some, like Koffler, for instance, even had the opportunity to deny or at least apologize for their actions. (Koffler, who went on to be University of Massachusetts Amherst Chancellor, refused.)
Secondly, the memoir lacks bitterness. Colwell tells the story of her passage through the system, warts and all. But her tone is not vindictive. If anything, she uses every opportunity to focus on people, both men and women, who played key roles both in helping her personally, and in changing the world of academic science into a more fair and inclusive one. She never dwells on her achievements or toots her own horn: Instead, she dedicates pages and pages to other women who have themselves overcome many obstacles and, despite men, managed to make incredible contributions.
What’s fascinating about A Lab of One’s Own are the inside stories of how monumental events unfolded. She explains how the Women’s Equity Action League (WEAL) managed to file a class action suit against the University of Maryland as well as 250 other American colleges for sex discrimination, leading to the Educational Amendments Act of 1972. Focusing on the factual, strengthened by her personal observations, Colwell gives detailed accounts of landmark moments in gender equality, including the passing of Title IX, the phenomenon of the “revolving door” and the “Birgeneau Bump.”
Although the fight against sex discrimination and the gender pay gap is not over, the memoir ends with positivity. The book is at times quite a dense text, packed with names, titles, years. Colwell documented the careers of dozens of female scientists alongside her own, giving each one as much space on the page as she gave herself. As a true feminist, Colwell uses the gravity of her platform to give others a voice. A Lab of One’s Own is essential reading for all genders; however, women in the sciences will find the history especially eye-opening. —Alekszandra Rokvity
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).