The Empathy Exams: Essays
The Sanctuary of Illness: A Memoir of Heart Disease
Hudson Whitman/ Excelsior College Press, 2014
The Mythical Bill: A Neurological Memoir
University of Iowa Press, 2013
Writing and reading memoirs and essays about illness, suffering, and, ultimately, grief are inherently obsessive endeavors. The writer takes on the grueling task of examining his or her own body and mind in public, aware that the reader expects an honest confrontation of mortality. Narcissism is a peril: Navel-gazing is part of the job (after all, it’s their navels they’re writing about), but readers who seek out personal nonfiction about the body often do so because they yearn to see a glimpse of their own experience in the author’s. Everyone has a body, after all, and many of us are preoccupied with what can happen if and when our body falters.
Leslie Jamison, in her essay collection The Empathy Exams, addresses the good author’s dread of narcissism straight on. In a letter to a friend, excerpted in the book, she writes of her “double-edged shame and indignation” about her ailments, lamenting, “Why the fuck am I talking about this so much?”
Because talking and writing about bodies and what goes wrong with them invites the author and the reader to look away from our own navels and recognize what we’re afraid of. Our bodies can do us wrong.
In The Empathy Exams, what Jamison truly examines is hurt. Each of the eleven essays addresses the nature of empathy for others’ pain and for our own. In the title essay, she writes about her work as a standardized patient portraying a series of unwell individuals on whom medical students hone their diagnostic skills.
Jamison muses that to have empathy is “a choice we make: to pay attention, to extend ourselves. It’s made of exertion, that dowdier cousin of impulse.” Jamison isn’t sermonizing here: she’s addressing herself as much as her readers. Although the scripts she worked from as a pretend patient gave her instructions about how to demonstrate “not just what hurts but how to express it,” her responsibility was to inhabit the character she portrayed. In much the same way, the essays in The Empathy Exams go much deeper than a surface study of one person’s pain.
Jamison is a nimble writer, merging in the title essay her standardized patient experience with an account of her abortion, her subsequent but unrelated heart surgery, and her own growing empathy for her boyfriend. She does this by presenting herself as a case study, creating a wrenching and perfect moment in which Jamison becomes, in a way, every patient.
In the essay “Devil’s Bait,” Jamison attends a convention of Morgellon’s disease sufferers. She writes of the unexplained skin disorder: “I fall into the easy groove of identification . . . whenever [a convention attendee] talks about her body as something that’s done her wrong. Her condition seems like a crystallization of what I’ve always felt about myself—a wrongness in my being that I could never pin or name. I found things to pin it to: my body, my thighs, my face. This resonance is part of what compels me about Morgellons: it offers a shape for what I’ve often felt, a container or christening for a certain species of unease. Dis-ease.”
Jamison is not the first writer to parse disease as dis-ease, but here she makes the analysis a moment of connection between the putatively ill Morgellon’s sufferers and the assumed well author. Illness isn’t just about me, or you, or that stranger in the corner. In Jamison’s hands, a wound is fertile. In a breathtakingly insightful passage, Jamison writes that wounds “promise authenticity and profundity . . . They summon sympathy. They bleed enough light to write by. They yield scars full of stories and slights that become rallying cries.”
Jamison does well in not only acknowledging but expanding on the presence of her illness-writing foremothers. She takes the opportunity to apply Susan Sontag’s pivotal “Illness as a Metaphor” to her discussion of the body, writing of Sontag’s observation about “our dual citizenship in the kingdom of the well and the kingdom of the sick” that “most people live in the former until they are forced to take up residence in the latter.” Just recognizing as much is a gesture of empathy.
Jamison’s essay “Grand Unified Theory of Female Pain” is an exploding piñata of call-outs to her forerunners, including Sontag, Stephen King’s Carrie, Lena Dunham, Louise Gluck, Tori Amos, Frida Kahlo, and Kate Bush. Jamison explores why they—and she herself— write about illness. In the fallout from that piñata, Jamison examines Lucy Grealy’s illness memoir Autobiography of a Face, about her surgeries for Ewing’s sarcoma in her jaw, and on living as a disfigured woman. Jamison learned of Grealy’s book after planning to document her own experience of living with her jaw wired shut after falling from a vine in Costa Rica and plummeting twenty feet to the forest floor. She had planned to call her own memoir “Autobiography of a Face” until she discovered Grealy’s book. “What I love about Grealy,” Jamison writes, “is that she’s not afraid to be honest about every part of her pain: how she takes some comfort in her surgeries and feels discomfort at this comfort.”
Thomas Larson’s joyous beating heart of a memoir, The Sanctuary of Illness: A Memoir of Heart Disease, is a stellar example of the illness writer’s drive toward honesty. Of his diagnosis of coronary artery disease, Larson writes, “I’m not special—but oh yes I am.” (Full disclosure here: Tom Larson and I have served on literary panels together and shared a few group meals.)
Larson had three heart attacks in five years. Heart disease killed his father and his older brother. Larson explores this, opening the family history, “just as the plaque has been broken apart and my arteries opened up.”
Larson offers to buy each of his adult twin sons a “23AndMe” self-administered DNA test to analyze their genetic history and potentially warn them of coronary artery disease in their futures. His sons are in their thirties, fit and symptom-free. At their age, he was, too. Buying the tests brings up the image of what he calls “the recalcitrant ill,” conjuring the image of Janet Leigh pulling into the Bates Motel, unaware of the knife thrusts in her future. The results of the DNA testing may alert his sons to take care of themselves, to decide against that turn into the gloomy hotel made, in Larson’s case, of the obesity and poor eating habits that triggered the family disease. Larson doesn’t mention whether his sons took the tests, or if so, what were the outcomes—which doesn’t feel like an oversight. At this point in the narrative, he’s wrestling with creating change.
Larson grew up in “a fat family,” with glazed donuts, ice cream doused in chocolate sauce, macaroni and cheese, and bologna with mayo, in the “Land of Lard.” Inspired by the musings of his high school science teacher, he attempts to stretch himself by tying his limbs to his bed with rope, theoretically reducing his body fat. Fortunately, his parents refuse to help him tie his arms, and the project is abandoned. As an adult, he sets aside decades of being a “dairy loving, sugar-and-starch” vegetarian in the interest of lowering his cholesterol. In the book’s end pages, he advises readers to stop consuming meat and dairy products.
In the opening scene of the book, Larson experiences his first heart attack while teaching. He minimizes the severity of his symptoms and mutely berates himself for leaving class to drive himself to the emergency room. Unsure he’s actually having a heart attack, he observes his crisis and wonders, as a writing teacher: “How do you capture trauma, intensity, in words?”
You do it the way Larson does, depicting not only the intimate details of his body, sick and well, but the ways that illness consumes more than the body it inhabits. Over the course of this brief and elegant memoir, Larson comes to realize that his heart condition affects his wife, too. Sharing “what is ultimately not mine but ours creates the sanctuary” of his illness, and Larson teaches himself to understand how his illness affects those he loves. He doesn’t bear the “chronic dread” alone. He draws a lyrical connection between his literal heart’s sanctuary within his body and his metaphorical heart’s sanctuary in the company of those he loves.
Larson, a staff writer for the San Diego Reader and the author of two previous books, brings his journalist’s sensibility to his—and our—immersion in living as a person with an illness. “I feel safer when I marshal the medical facts,” he writes. The sheer magnitude of a heart’s work, the number of times it beats in a day (100,000), and the quantity of blood “freight-training through everyone every day” makes the reader, like the author, feel simultaneously safe and in a precarious state. Larson recognizes that while journalistic facts have their place in illness writing, so does style. Taken in pieces, The Sanctuary of Illness is a series of poetic, jazz-master riffs on illness. The memoir is constructed in sections rather than formal chapters, with headers such as “You Were Dying,” a rumination on, among other things, evolution and forgetting, and “Greyhounds Chasing Rabbit,” in which a nurse asks Larson, an atheist, if he can pray for him.
Careful, almost reverent parsing of language guides playwright and director Jody McAuliffe’s exploration of her father’s decline and death. She begins The Mythical Bill: A Neurological Memoir with the etymology of his physical ailment: “Torticollis, from the Latin tortus, past participle of torquere, to twist, twisted + collum, the neck.”
William McAuliffe’s neck contorted during his naval service in World War II. Torticollis turned his head to the right. “In my father’s case,” she writes, “conditions of onset—war—raised suspicion that his case might be hysterical in nature.” An attempt at corrective surgery the day after Jody McAuliffe was born marked the beginning of his mysterious physical and mental decline. When she was a teenager, the family referred to her father’s persistent mental disorientation as “confused,” “without knowing the word used to mean “covered in shame.” William McAuliffe suffers from “on-again off-again dementia” and is hospitalized periodically from the time the author is born until his death at age fifty-four in the mental ward of a Veterans Administration hospital .
McAuliffe has a dilemma, and she tells us straight out that “I do not know what happened to my father—mentally, physically, or both.” Without sentimentality, she proceeds to untwine their shared story. She begins the book with a chronology of her father’s life, excerpting family letters and her father’s journal entries throughout to add body and soul to her story and her father’s. The journal entries show a loving, pensive man, a father to truly mourn. In a remarkable section, McAuliffe imagines a close third-person scene in which her father reacts to her as a baby.
His wife holds me up to show him.
“See, she looks just like you.”
He has never seen anything so strange.
McAuliffe grows up afraid that she “will end as my father.” She injures her shoulder playing flag football in high school, and plays the role of a hunchback in a college play (the irony is not lost on her.) At forty-five, tennis injuries damage both her shoulders again, leading her to “contort [her] upper torso into a shadow version” of her father’s body. McAuliffe begins physical therapy. When her therapist turns McAuliffe’s head to the right, “it makes me nervous even to hold my head like that, afraid maybe it will freeze like an ugly grimace.” The physical therapist calls the fear a breakthrough, and McAuliffe reluctantly agrees. “My father’s body is in my body,” she muses. “This is how I keep him alive, how I keep him close.”
While McAuliffe’s pursuit of the truth ultimately leads her to believe that her father also suffered from Lewy Body disease, a form of dementia, the real truth—what the skilled memoirist knows waits below the surface of the narrative—is her love for her damaged father. She has lost his wristwatch, a keepsake, and bought a replacement, but it’s not the same. “I want the old one back,” she writes. “I want to hold it to my ear and hear it tick.”
Just being alive is a condition requiring guides—not only guides to living inside these delicate and dangerous things called bodies, but guides to finding ourselves in others. Jamison, Larson, and McAuliffe have written the foundations for a new reading list on how to write about our real obsession: the condition of being human.