Against the Odds
updated 08/11/2003 AT 01:00 AM EDT
•originally published 08/11/2003 AT 01:00 AM EDT
Correction: She chooses not to. For along with the accolades and the affluence, Hillenbrand, 36, is living with a debilitating case of chronic fatigue syndrome, a still poorly understood disease that causes muscle and joint pain, extreme dizziness and an exhaustion so profound she has rarely left the house in the 16 years she has been afflicted.
"Seabiscuit is really an allegory of Laura's struggle," says Kim Kenney, who heads the Chronic Fatigue and Immune Dysfunction Syndrome Association. "A come-from-behind hero rising to prominence." Hillenbrand is using her fame to raise CFS awareness. In May she made a rare trip from the Georgetown home she shares with boyfriend Borden Flanagan, 38, to speak about CFS at the White House. "Maybe it will make a difference," she says. Her doctor Alan Pocinki thinks she already has. "Laura's among the most severely affected with CFS I've seen," he says, "yet she's led a very productive life. That's inspiring to others."
Hillenbrand was a sophomore at Ohio's Kenyon College, where she excelled at tennis and swimming, when CFS struck. "Things could not have been more perfect," says Hillenbrand, who had begun dating Flanagan six months earlier. "Then the world caved in." Her doctors believe a bout of food poisoning may have weakened her immune system, making it vulnerable to CFS. "One day I woke up and couldn't raise my head. Finally I dropped out of school."
She returned home to suburban Maryland, where, says her mother, Elizabeth, 74, a psychologist, "she would just lie there looking at the ceiling." Flanagan later moved in. "I couldn't get over her," he says. She saw scores of doctors, who diagnosed her with everything from bulimia to puberty or dismissed her symptoms as psychosomatic. "I was bedridden from August '91 to the summer of '94," says Hillenbrand. "But they could find nothing wrong."
At that time, says Kim Kenney, "CFS was trivialized and called 'the yuppie flu.'" Even Hillenbrand's family couldn't always sympathize. "We knew she wasn't faking," says her sister Susan Avallon, 40. "But she didn't look sick."
In 1993 Hillenbrand met Dr. Fred Gill, now an NIH internal medicine specialist, who diagnosed CFS. "They told me it's not all in my head, which was a relief," she says. "But also that there was no cure."
Knowing she had to accept her symptoms, Hillenbrand tried to resume a more active life. She moved to Chicago, where Flanagan was pursuing a graduate degree. Remembering a book about Seabiscuit she had loved as a horse-crazy preteen, she researched his story and wrote a piece for American Heritage Magazine. "It touched a chord," she says. "I got a book contract one week and a movie deal the next."
She wrote Seabiscuit over four years, often while in bed. "I was exhausted," she says, "but obsessed. I would dream of horses running." Earning about $1 million for the film rights alone, the book has assured Hillenbrand's once-uncertain future. Before, she says, "I never made more than $9,000 a year." Though she and Flanagan, a political theory professor at American University, consider themselves partners for life, they likely won't marry. "Who's going to plan a wedding," she says, "when the bride isn't sure she'll show up?"
One thing she is sure of: She'd like to do another book. "My internist keeps reminding me to pace myself," she says. "But I don't want to be known as 'Laura the invalid.' I want to be known as 'Laura the writer.'"
Colleen O'Connor in Georgetown