Laura Hillenbrand does not keep the pell-mell schedule that one might expect of a newly crowned literary lioness. The author of Seabiscuit: An American Legend, the unlikely page-turner about the ungainly racehorse that became a long-shot champion, is busy consulting on a Seabiscuit movie, which began production in Kentucky this past fall. But to Hillenbrand, 35, who lives in Washington, D.C., “busy” doesn’t mean what it does to most people. To her it means talking on the phone. She receives scores of invitations every month to appear at bookstores or give speeches or write articles—and declines almost all of them. On some days, she doesn’t have the strength to leave her house, and therein lies another tale of long odds, perseverance and unexpected fame.
Hillenbrand is afflicted with chronic fatigue syndrome, a disorder marked by physical and mental exhaustion, recurring aches and fleeting fevers. She came down with it 15 years ago—remembers the day it struck, in fact—and was bedridden off and on for six years. She toiled on Seabiscuit for four years, often keeping a box of breakfast cereal close at hand so she wouldn’t have to waste precious energy walking to the kitchen, sometimes writing (in longhand) with her eyes closed to stop the vertigo. The book, a chronicle of the racetrack world of 1930s America, has so captivated readers (the hardcover was a No. 1 New York Times best-seller last year, and the paperback remains on most best-seller lists) that the news of what she overcame to create it has transformed Hillenbrand into a leading spokes-person for victims of chronic fatigue syndrome, or CFS.
“As I lay in bed over the years, I wished that somebody prominent would go out and make an articulate case for CFS patients,” she says. “So when Seabiscuit’s success gave me the opportunity to take on that role, I thought, OK, that’s what I’m going to try to do.”
To people with the disorder, many of whom have been misdiagnosed or even stigmatized as malingerers, Hillenbrand’s candor has been a godsend. “Laura has told her story so graciously and compellingly,” says Kim Kenney, head of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a patients’ group. “Her triumph has not only inspired patients but has really made a difference in helping the public understand what people with this illness have to go through.”
Hillenbrand’s willingness to serve as the poster child for chronic fatigue syndrome coincides with other welcome developments, including new thinking about its causes. Though a cure for the syndrome does not exist, researchers have recently amassed evidence that counseling and supervised exercise therapy can often help patients. Perhaps most impressive, medical researchers at the U.S. Centers for Disease Control and Prevention in Atlanta are working on the first test for screening and possibly diagnosing the syndrome. Says Dr. William Reeves, who directs chronic fatigue syndrome research at the CDC: “The field is progressing quite rapidly.”