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Five Great Books About Living with a Consuming Disease

Fire in the Mind
By George Johnson
Oct 17, 2013 6:35 PMNov 19, 2019 8:10 PM


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Illness as Metaphor By Susan Sontag (1978) Though she didn’t say so at the time, Susan Sontag was being treated for cancer when she wrote this powerful exploration of how we use language to obscure the reality of chronic illness. At the time, cancer was still looked upon as a ­disease conceivably self-inflicted—in some way shameful. Doctors proposed the existence of a “cancer personality,” characteristic of the depressed and lonely, who kept their feelings squeezed so tightly inside that they erupted into tumors. Sontag contrasted society’s view of cancer with the strangely romantic aura that once surrounded tuberculosis, the previous century’s “dread disease.” Poe, Kafka, the Brontë sisters—the tubercular (the famous ones, anyway) were cast as creative, passionate souls, “ ‘consumed’ by ­ardor.” Nobody, Sontag wrote, could glamorize cancer. She saw another difference: While tuberculosis was a disease of consumption, cancer ­produced something horrible and new inside the body—like “a demonic pregnancy” or “a fetus with its own will.” A decade later she published a companion essay, “AIDS and Its Metaphors.” Left standing after a round with cancer, she had a new plague to deconstruct.Cancer Ward By Alexander Solzhenitsyn (1968) For Solzhenitsyn, cancer was a telling metaphor for communism, which is why the hospital in his novel reflects all the dehumanizing aspects of a totalitarian regime: the tedium, the unfulfilled promises of a “cure,” the tyranny of procedures followed by rote. “Why is it they bombard me with these thousands and thousands of X-ray units?” the main character, Oleg Kostoglotov, pleads. Like Solzhenitsyn, he had spent time in a gulag and was treated later for cancer. “Is it really to stop the tumor growing again? . . . Or is it just carrying out senseless, pointless instructions which they can’t ignore on pain of losing their jobs?” Then he poses the same question asked by the prisoner in a labor camp, by the weary Soviet citizen and by the cancer patient: “How much can one pay for life, and how much is too much?” Solzhenitsyn’s tale is ultimately uplifting—pain softened by the empathy of others. Tragically, some of his vivid descriptions of cancer still ring true. “A melanoblastoma is such a swine you only have to touch it with a knife and it produces secondaries. You see, it wants to live too, in its way.” The modern name is melanoma, and in its advanced stages it still usually wins. The Magic Mountain By Thomas Mann (1927) There is nothing squalid about the tuberculosis sanitarium in Thomas Mann’s novel. Entering the place, high in the Swiss Alps above Davos, is like ascending to heaven. Hans Castorp, a naïve, unsophisticated young man, travels there to visit a sick cousin, but when a nasty cough develops into something worse, he becomes a patient himself. Surrounded by a cast of erudite and passionate souls, he discovers, in the dilated hours of his convalescence, the life of the mind. One clear winter night, wrapped in furs and blankets, he sits on his balcony enrapt with the mystery of how atoms are arranged and animated into living things. In an eloquent reverie—my favorite part of the novel—he imagines life itself as “a fever of matter,” “an illness, a cancerous stimulation of the immaterial.” And yet, he realizes, it is also something ethereal—hovering between matter and spirit, “like the rainbow above a waterfall.” When he returns, seven years later, to the “flatlands,” his sensibilities have become richer and subtler. He has been elevated by his intimacy with disease. A Whole New Life By Reynolds Price (1994) For the novelist Reynolds Price, the first hints of trouble were a miscommunication, an occasional scrambling of signals between his brain and legs—the kind of thing you shrug off before reluctantly calling the doctor. The scans, the X-rays and the surgery ultimately revealed an elongated tumor growing inside his spinal column, “pencil-thick and gray-colored, ten inches long from my neck-hair downward . . . intricately braided in the core of my spinal cord.” He called it “the eel.” The imagery in this memoir of cancer—Reynolds died in 2011, long after his diagnosis, of unrelated causes—is unforgettable. The tumor became so dominating a presence that it seemed like a living being, “a thing with its own rights.” It was “as much a part of me as my liver or lungs and could call for its needs of space and food. I only hoped that it wouldn’t need all of me.” It took his legs—he was permanently paralyzed—but not his spirit. My Own Country By Abraham Verghese (1994) Verghese was born in Ethiopia to parents who emigrated there from the state of Kerala in India, but he found his own country in rural Appalachia, where he arrived in the 1980s as a young doctor just as the HIV epidemic was seeping from the cities into the towns. As an infectious disease specialist and a foreigner, he became an outsider treating outsiders—young men whose sexual predilections made them strangers to many of their own neighbors. There have been powerful first-person accounts of AIDS, like those by Paul Monette and Emmanuel Dreuilhe. But I was especially moved by Verghese’s gracefully written story of a conservative Tennessee community reluctantly coming to realize that AIDS was not just a big-city problem but one that affected its own citizens. Verghese’s stark descriptions of the physical ravages of the disease are matched with his inspiring stories of bravery and compassion—people at their best in the worst of times. (Originally published August 31, 2013 in the Wall Street Journal as "George Johnson on Books About Disease.") *** Comments are welcome by email. For public discussion please use Twitter. For a glimpse of my new book, The Cancer Chronicles, including the table of contents and index, please see this website. @byGeorgeJohnson

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