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Susan Sontag

Seven Books That Actually Capture What Sickness Is Like

The Atlantic

www.theatlantic.com › books › archive › 2023 › 12 › illness-books-recommendation › 676367

The universality of sickness—hardly anyone can escape getting seriously ill at least once in their life—has endowed us with a rich tradition of writing about the state of being unwell, from Sophocles to Susan Sontag. Nevertheless, writers who document illness can fall into certain traps. One is to simplify their experience; another is to provide a happy ending, and, as a result, many stories lean on a predictable pattern: Doctors add up symptoms, produce a diagnosis, and cure a model patient’s disease.

The best authors, however, go off script. They do not try to instruct their readers about illness in general, or how to act, or how to think while dealing with pain and disease. Instead, they represent particular experiences in the face of illness.

The seven writers below are all very different people from very different times. Some of them had easy experiences with the medical world of their day, and some suffered through neglect and misdiagnosis. What unites them is their interest in the actual textures of human life. They do not always behave as they ought to, and aren’t necessarily nice people. But they do not collapse their lives into smooth, neat stories, and pursue instead the highs and lows of reality, with its humor and disappointment, its triumphs and its dead ends.

“Of Experience,” by Michel de Montaigne

“I study myself more than any other subject,” Montaigne tells us in this essay, without a whiff of apology. Those who follow him as he drifts from one idiosyncratic observation to the next will be rewarded, eventually, with his contemplation of his chronic kidney stones, an excruciating condition in which solid masses form in the kidney and force their way through the urinary system. The modern patient can go to a urologist or even a surgeon for treatment, and have pain medicine to get through the experience. But in the 16th century, the ever-practical Montaigne accepts that his pain is inevitable, and that he’s not going to be helped by stringent diets or drugs of dubious efficacy. Should he feel another stone coming on, he tells us, he won’t “take some bothersome precaution … He who fears he will suffer, already suffers from his fear.” Montaigne will instead do just as he pleases, right up to the last moment, and his refusal to let his pain prevent him from enjoying himself remains endearing—and more than a little inspirational for those in a similar position.

[Yiyun Li: Some have yoga. I have Montaigne.]

The Diary of Alice James, by Alice James

What was happening to Alice James, the sister of William and Henry James? Five-day headaches, “rheumatic gout,” an “acrobatic stomach”—that’s as much as she tells us of her everyday illness. For years, she wrote, she had been trapped in a “monstrous mass of subjective sensations, which [doctors] had no higher inspiration than to assure me I was personally responsible for.” Her mysterious illnesses left her bedridden frequently throughout her life. When she was eventually diagnosed with the cancer that would kill her, she wrote, triumphantly, “To him who waits, all things come!” Cancer was at the very least a clear problem. But James’s diary, which covers the last three years of her life, is not concerned with documenting her troubles—and she can be quite sharp about those who do so. Her writing’s charm and interest lie rather in what an unmistakably unique person she remained until the end, even though she eventually became too weak to write and had to dictate her diary to her friend Katharine Peabody Loring. Her unusual obsessions (she seems never to miss a chance to write approvingly of suicide) and her unlikeable snobbery sit alongside her wit and her sense of humor. Hers was a life defined by restriction in almost every practical sense, but illness could do nothing to blunt her personality.

Penguin Classics

The Cancer Journals, by Audre Lorde

“I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience,” Lorde states at the beginning of The Cancer Journals, which mixes extracts from her diaries with less personal analysis. Her book situates her own crisis within the larger political context of the 1980s without diminishing her struggles. She mourns the “useless wasteful deaths of young Black people” and demands “real food and clean air and a saner future on a liveable earth” at the same time she’s experiencing the pain of a mastectomy; she resists the pressure to cover up her loss by stuffing her bra with lambswool or eventually getting an implant. Hers is a difficult balancing act that has had many imitators; Lorde remains one of the few writers to really pull it off, thanks to her intense commitment to her political goals and the irreducibility of her own experience “as a woman, a Black lesbian feminist mother lover poet.” The Cancer Journals reminds readers not only that sickness need not make us solipsists, but also that sometimes the path to something bigger can be achieved only through an inward turn.

[Read: I’ll tell you the secret of cancer]

Codeine Diary, by Tom Andrews

Andrews, who died three years after this book was published, was a poet working at the University of Michigan when he slipped and fell on some ice—a nasty experience for anybody but a dangerous one for a hemophiliac like Andrews. Codeine Diary is an account of his hospitalization, of his brother’s death from kidney failure, and also of Andrews’s (successful) childhood attempt to get into the Guinness Book of World Records for clapping without a break. The whole book is funny and refreshingly free of self-pity, but Andrews’s descriptions of his extended hospital stays are most rewarding. He recounts tales of carefully befriending the nurses and trying to get pain medication (a labyrinthine task, he explains: “If the patient is able to find language, however inadequate … the doctor may take that very articulateness as a sign that the pain must not be as bad as the patient is letting on”). He and his wife pass the time by reading Waiting for Godot out loud during his stays; meanwhile, Andrews tries to figure out how to document the rich and sterile tedium of the place. “Sometimes the carapace of cliché that enshrouds the imagination seems impenetrable,” he writes, sincere tongue planted firmly in cheek, as he tries to compose a poem. But this book, at least, is wholly free of cliché.

Picador

Giving Up the Ghost, by Hilary Mantel

Mantel is best known now for her Wolf Hall trilogy. But I prefer her earlier fiction—and also this book, her memoir. After a childhood in which she was sarcastically called “Miss Neverwell,” Mantel, in her early 20s, visits a doctor because of pain in her legs. This reasonable and low-stakes decision plunges her into a medical nightmare for which the term Kafkaesque is frankly a little too mild. Mantel is put on antidepressants, Valium, and, eventually, antipsychotics, the last of which have the effect of making her unable to sit still. By the time she is able to diagnose herself with her actual illness—endometriosis—her disease has progressed so far that the only possible treatment is a hysterectomy she very much does not want. The earlier sections of Giving Up the Ghost detail her feelings of childhood helplessness; the later pieces showcase a kind of adult helplessness that is familiar to readers of Mantel’s fiction. In her novels, she frequently explores how people are both powerless in the face of circumstance and completely responsible for their choices. She is, it turns out, just as kind, and just as unsparing, when it comes to herself.

[Read: Hilary Mantel’s art was infused with her pain]

Picador

The Two Kinds of Decay, by Sarah Manguso

In 1995, an everyday sore throat triggers an autoimmune condition that dominates Manguso’s life for the next nine years. “Chronic idiopathic demyelinating polyradiculoneuropathy. CIDP. That’s the shortest name for what’s wrong with me,” she tells readers. But getting that diagnosis took a while. Like Mantel, she discovered that “my symptoms were so unlikely … they were assumed not to exist.” Manguso’s gentle, detached style lets her deliver truths about illness that a more visceral book might have been unable to communicate. When doctors encourage her to feel sorry for herself, she cuts them off. When, after her eventual recovery from CIDP, she ends up in a psychiatric ward, she calls it “the only true community of equals I have ever lived in.” Manguso understands that everybody gets crushed by life, and that if you regard it as a zero-sum game, you have started down the path of killing yourself spiritually, whatever happens to you physically.

Ecco

Tell Me Everything You Don’t Remember, by Christine Hyung-Oak Lee

In 2006, at the age of 33, Lee had a stroke without knowing it. It was the consequence of another condition she did not know about—a hole in her heart that had made all forms of exercise punishing since childhood, though she had pushed herself anyway. (Her parents, who had survived the Korean War, raised her with the repeated warning that “people who couldn’t walk, who sat down and cried—they died.”) Before her medical crisis, Lee treated her body with contempt, slamming her head against the wall when she had a migraine, for example. She relied solely on her mind until her stroke made her volatile, even cruel, and unable (for a time) to form short-term memories. Lee is most insightful when she’s examining the period when she was no longer in crisis but also not healed: Conscious of the gap between who she was and who she is, she constantly strains to cross it by sheer will and is undone every time she fails. Readers know that she’ll eventually arrive at a place she can live with, even if it’s not where she used to be. But getting there was never guaranteed: It depended on Lee identifying and embracing her stubborn core—one that refused to sit down, cry, and give up.