>Chronic Fatigue Syndrome: A Celebrated Author’s Untold Tale


Laura Hillenbrand spins irresistible accounts of heroic figures undaunted by long odds. But she’s frequently so unwell that she scarcely leaves home

 On a recent night, Laura Hillenbrand lay in bed dreaming of somersaults in the powder-blue bedroom she shares with her husband, Borden Flanagan, in their modest ­yellow row house in Upper Northwest Washington, DC. Dozing in REM sleep, the author of the acclaimed horse-racing history Seabiscuit (2001) imagined herself tucking her head to her chest, tipping forward, and letting her hips and legs pull her all the way over. A playful-seeming reverie, conjured out of the mists of an athletic childhood.

But then she didn’t stop turning. She couldn’t stop, flipping and flipping in a torment of constant motion.
Most of Hillenbrand’s dreams are like this now, strange, panicked scenarios cobbled together somewhere inside her head—plummeting airplanes and storm-tossed ships are other recurring motifs—to help her process the strange and excruciating physical sensations that she lives with more or less all the time.
Hillenbrand has chronic fatigue syndrome (CFS), a cruel medical condition with an unfortunate name that fails utterly to do ­justice to an often debilitating array of so far unexplained symptoms, including muscle pain, unrelenting exhaustion, digestive problems, environmental hypersensitivity, occasional fevers, and that aforementioned vertigo. “Laura is on the more severe end of the spectrum,” says Fred Gill, MD, a noted specialist in ­infectious disease at the National Institutes of Health, who treated her for many years. “It’s very serious. It stops people’s lives.”
“It’s so frightening and hellish and disorienting,” Hillenbrand says, “and on top of that there’s this layer of gripping fear, because I don’t know what will happen next, if it will get worse.” She’s sitting at her dining-room table, one foot folded under her knee, looking like the picture of health, pretty and cheerful, in a black blouse, metal-rimmed glasses, and hoop earrings.
It’s early afternoon, her best time of day. Since she first came down with the disease in 1987, the severity of her symptoms has shifted without warning or explanation, and the ferocious relapse that began three years ago, as she was deep into the research phase of her ­second book, seems gradually to be abating. Over the years, Hillenbrand has often gone for long stretches without so much as leaving her room, but she’s feeling strong enough lately to receive a visitor. Aside from Flanagan, a soft-spoken professor of ­political philosophy, who passes through from time to time; her new doctor, who by necessity does house calls; and one social visit a few weeks back, I’m the only person she’s seen in months.
“When I was really dizzy, I was almost screaming with fear because it’s so thoroughly disorienting, but it’s not too bad right now,” she says, smiling. “Things are moving in a liquid kind of way, and the floor is slanting and it looks like a really bad computer-generated image. Nothing looks real.”
It’s only then that I realize Hillenbrand has ­remained perfectly still—keeping her hands folded in her lap—since we sat down an hour before. Suddenly imagining how my own gestures must look to her, I try not to make any abrupt movements.
Reviewers and fans of Seabiscuit, which was dubbed “a model of sportswriting at its best” by The New York Times before going on to sell some 3 million copies and spawn an Oscar-nominated feature film, praised the book’s descriptive immediacy and the ­author’s spooky ability to put the reader right in the saddle with jockey Red Pollard atop the squat, famously graceless horse as they thundered around the far turn in the legendary race at Santa Anita in 1940.

 sumber : www.elle.com


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