The sky is falling. I'm not afraid to say it. A few weeks from now, you may call me an alarmist, and I can live with that. Actually, I will keel over with happiness if I'm proven wrong," wrote Dr. Cornelia Griggs in her March 19, 2020, OpEd in The New York Times. Dr. Claire Unis reviews this reflective memoir.
Read moreOur Long Marvelous Dying by Anna DeForest
One moment of Anna DeForest’s Our Long Marvelous Dying, just published by Little, Brown and Company, captures the immense grief at the root of their new novel:
In the interval between giving a dose of intravenous opioids and seeing the peak effect, I will sometimes pass the time by catching up on the news. There is almost always a disaster imminent…You get used to it…
A sense of resignation and detachment pervades the story told by an unnamed narrator, who works as a palliative-care fellow in New York City after the peak of the early COVID-19 pandemic. In the first chapters, she recounts aspects of her training as a specialist, who “serves as a sort of illness interpreter, bringing the jargon of clinical medicine into the life and language of the patient who is living the experience.” It’s a specialty also “trained to be comfortable with [prescribing] the stronger stuff: morphine, hydromorphone, fentanyl.” As the fellow learns these skills, an assessment of how her specialty serves the dying patient and her colleagues becomes clear:
The trouble that the other doctors have is not a lack of gentleness. Well, not only that. More often what they cannot do is tell the truth. They pack death up in so much misdirection, talk about the success or failure rate of this or that procedure or treatment, when the truth is the patient will be dead soon no matter what we come up with to do in the interim. That’s the part they need a specialist to say.
We also get glimpses of the narrator’s personal life: her relationship with her husband Eli, the dark ground-floor apartment they rent, the chess games she plays with her young niece Sarah, who her brother has left with them. We learn about the death of her father. Throughout the novel, the narrator seeks ways to withstand suffering—the global and local, present and past—in her daily existence.
Our Long Marvelous Dying is DeForest’s second novel and in some ways narratively follows A History of Present Illness, published in 2022, which challenged the lore of medical education through the story of a student managing her own personal trauma and the wider trauma of American healthcare. Reviews of DeForest’s first novel linked the writer, who works as a palliative care physician at Memorial Sloan Kettering Cancer Center in New York City, to the narrator—and the same might apply to Our Long Marvelous Dying, as many moments seem pulled from the firsthand experience of a physician versed in hospice and palliative care.
In many of the novel’s settings, bereavement surrounds the narrator and often consumes her. But the grief that grounds the story and proves most unsettling for the narrator stems from the death of her absent and unkind father. DeForest structures the story to reflect the narrator’s apprehension towards him. We see him in pieces between scenes in the hospital, and can’t put him together as a whole until the very end. In managing the arrangements for his death, the narrator takes us through their fraught relationship. His favorite story to tell her romantic partners when meeting them for the first time is how whenever she cried as an infant, he said “I never liked you from the beginning.” But the cruelty of his abandonment is in its persistence—he is a “latent monster,” a “ghost” from whom she never stops craving acknowledgement.
Beyond her family, the narrator guides us through additional layers of grief in a way that we never stay long enough in one place to take up the devastation. The world offers constant tragedy—floods, destruction of coral reefs, extinction of thousands of species. And every day the COVID-19 pandemic rages. The reader hears about the refrigerated trucks lining New York City blocks, but what the reader sees in specific detail are the causalities for healthcare workers: their loneliness and coping mechanisms of alcohol use, disordered eating and SSRIs for suicidal ideation. During rounds, for example, an attending physician recounts the peak of the pandemic and says absently, “I am on an SSRI.” Meanwhile, the narrator notices the spring air coming through the window in his office that has “no bars, no screen. Fourteen floors up, with a view of the Empire State Building.” There is an omnipresent threat of self-harm, if not from one tragedy, then from the weight of so many others.
But Our Long Marvelous Dying is not a trauma dump. It confronts the obvious truths we train ourselves to overlook: the truth of death in a hospital, the truth of our own progression to death. It forces the question of “what is the purpose of living?” and does not give a satisfying answer. In this way, the novel’s title does not allude to the hidden deaths in the hospice wings, it alludes to us. Without despair, the narrator states “that all of us will die…that all of us are dead already.” The narrator acts as a palliative-care physician for us all, interpreting the jargon and euphemisms that drown the simple truth of daily tragedy. The sugar coating has dissolved, and she wants to communicate that “no one is coming to comfort you” and “nothing will help.”
One of the most provocative aspects of DeForest’s work is their ability to situate the reader in the day-to-day clinical world. The narrator normalizes death, dying and the grim collapse of human bodies that happens, not because of dispassion, but because of routine. While contributing to the book’s undercurrent of grief, the hospice unit provides meaning on a quotidian basis. On a phone call, in response to a mother’s dismay that her daughter may die before they arrive, the narrator reflects: “of course she can and does die alone.” In another situation, she reflects that an aging actress “dies the same as anyone.” These are tragedies that are contained, expected and managed.
Despite submission to muted sorrow, the narrator still attempts to manage her trauma. The palliative-care fellowship itself, in the view of its program director, draws those with personal layers of grief in addition to their professional interest. For the narrator, her work keeps the despair at bay and allows her to reflect on the minutiae of existence—for example, describing her underground commute as “the long stretch of track between where I live and everything that matters.” In revolving her life around the care of others, she does not have to generate her own will to continue living.
She also tries to endure by tempering her connections, especially to her husband Eli, a “well-adjusted” and handsome chaplain with a network of friends who adore him. The constant in their marriage is the restrained threat of its end, from “red flags” or laments that “it isn’t working.” This sense of detachment also manifests with her niece Sarah, who she describes as her “temporary daughter” while Sarah’s father is unable to care for her due to his substance use. We learn that an intergenerational dearth of attention and love has conditioned the narrator to the security of pain rather than love; the cycle of abuse contributes to her decision not to have children. The place where she seeks connection is a monastery out of the city, where she arrives and departs anonymous to her peers.
While there is no neat resolution, the protagonist steadily approaches the grief that eludes her—the death of her father. We see this through the lengthening of the scenes themselves. Initially, we learn about her father in brief moments between scenes of her palliative-care fellowship; by the end, we are allowed to linger as she sorts through his belongings. For a person who asks uncomfortable questions (Are you happy?) and speaks revolutionary words in a hospital (death and dying), the narrator takes her time to confront his death. She asks a rabbi at the hospital what to do after death about the bad acts her father committed in his life. Just as she can cut through medical euphemisms and jargon, he cuts through her question: “The weight you feel, he says, is not a need to forgive anyone. Just call it grief. Call it trauma.”
In Our Long Marvelous Dying, DeForest challenges our discomfort with death and instead leads with loss and our search for meaning within it.—Margo Peyton
Margo A. Peyton is a resident physician in neurology at Massachusetts General Hospital and Brigham and Women's Hospital. Prior to medical school at Johns Hopkins, she worked in film and television story development for DreamWorks Animation. Her essays and book reviews have appeared in The New England Journal of Medicine, JAMA and the Boston Society of Neurology, Neurosurgery, and Psychiatry.
Rearranged: An Opera Singer’s Facial Cancer And Life Transposed by Kathleen Watt
From the author: Bone cancer in my cheek ended my career as an opera singer and brought me face to face with mortality, disfigurement, the meaning and uses of beauty—and a lot of left over pieces.
Read moreShark Heart: A Love Story by Emily Habeck
When I learned of an upcoming book about a man who turns into a great white shark, I thought this was another example of our need to tame a dangerous wild animal into something suitable for a child’s tee shirt. Shark Heart, A Love Story, Emily Habeck’s first novel (Simon & Schuster, 2023) is not that at all, but much more: a love story about newlyweds Lewis and Wren, a meditation on our relationship with the animal world, and an exploration of illness and caregiving. Shark Heart explores the characteristics we share with other species and the question of what makes humans unique, while it also considers how health and illness affect our relationships with other people.
Read moreSeeing the Humanity in Himself: A Review of “The Country of the Blind: A Memoir at the End of Sight” by Andrew Leland
In “The Country of the Blind: A Memoir at the End of Sight” (Penguin Press, 2023), Andrew Leland digs into what people mean when they use the word “blind,” as there are medical definitions, in addition to legal uses of the term, as well as social constructs and expectations. The medical definition is complicated, as only 15% of people who are blind actually have no vision at all. Instead, they have some sort of substantial hindrance to full sight, but those issues vary wildly. In fact, most of the people in the book are more like Leland, people with some partial sight, even if that is nothing more than distinguishing light and dark patches of the world.
Read moreBeautiful Trauma: An Explosion, An Obsession and A New Lease on Life by Rebeca Fogg
Rebecca Fogg notes that there are innumerable responses to recovery, and she wisely avoids turning this story into a “how-to-survive-a-trauma” manual. This is no misery memoir, one that concentrates on the vulnerability and suffering of the survivor. She does describe the intense pain of the injury, however, in the objective, almost detached manner required of a scientist. She has a relationship with her hand as an object of concentrated study.
Read moreUncaring: How The Culture of Medicine Kills Doctors and Patients by Robert Pearl
In Uncaring: How the Culture of Medicine Kills Doctors & Patients (published by Public Affairs), Dr. Robert Pearl, a Stanford professor, plastic surgeon, and former chief operating officer of Kaiser Permanente, writes a well-documented panoramic narrative and insider view that demystifies the complicated healthcare system. His book offers a disturbing look at healthcare system that has lost its purpose. Pearl relates inefficiencies and slow changes, as patient centric views held by physicians and systems that have failed to adapt, both to cultural and individual principles, held so dearly for decades.
Read moreSecond-Generation Healing: The Holocaust poetry of Yerra Sugarman in "Aunt Bird" by Robert C. Abrams
The subject of Aunt Bird, a collection of poems by Yerra Sugarman, is the last year of the life of her aunt in the Kraków ghetto during Nazi occupation of Poland (Four Way Books, 2022). The book is a collection of impassioned poems about the lost hopes of a spirited, once-vital young adult.
Read moreA History of Present Illness by Anna DeForest
The narrator of A History of Present Illness is a young doctor going through the daily initiation of learning her vocation. In the story, the narrator subverts the fabled tradition of medical education through her position as an outsider on the inside. We discover her history in increments: She grew up in an unstable home with a mother who drank too much. In her adolescence, she walks in to see her pregnant mother sitting on the kitchen floor shooting staples into her arm. Financial instability is a way of life, as is self-injury: The narrator cuts lines into the creases of her hands, to manage the suffering and hide her scars.
Read moreOrdinary Deaths: Stories From Memory by Samuel LeBaron
Psychologist Samuel LeBaron’s book, “Ordinary Deaths” was recently published by the University of Alberta Press and in it, he examines the following truth without the drama often accompanying such writing: Death is not a heroic journey, a metaphorical “war” against fatal illness. It is, as the title states, ordinary.
Read moreIntimacies, Received: Poetry by Taneum Bambrick
Bravery, to me, is stepping forward to confront your fears and discomforts, despite the emotions holding you back. After reading Intimacies, Received, Taneum Bambrick’s moving collection of poetry, brave is the word that most readily describes the taut, sometimes treacherous path the poet takes to reclaim her sense of self and connection to her body after a traumatic event.
Read moreMedSpeak Illuminated: The Art and Practice of Medical Illustration by François I. Luks
MedSpeak Illuminated: The Art and Practice of Medical Illustration by François I. Luks is a remarkable volume that expertly brings together humanities and science.
Read moreQ & A about Neurocinema—The Sequel! by Eelco Wijdicks
When neurointensivist Dr. Eelco Wijdicks published the original Neurocinema: When Film Meets Neurology in 2014, his collection of film essays summarizing the portrayal of major neurologic syndromes and clinical signs in cinema served to underscore the field’s existence by being its premier textbook. Therein the medically-inclined movie buff or the film-frenzied clinician could explore medicine as it appeared on the big screen and better understand what the effects of medicine on film have played in our cultural milieu over time.
Read moreThe Kissing of Kissing: Poems by Hannah Emerson
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 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.
Sentient: 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.
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