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A Matter of Dignity: Author with Chronic Fatigue Syndrome Perseveres - and Writes a Best-Seller

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By Mark Giuliuci • www.ProHealth.com • November 28, 2001




This article is reprinted with permission from “The CFIDS Chronicle,” Volume 14, No. 3, Summer 2001.

Ask Laura Hillenbrand to pick a favorite character from her new book, and she answers without pause.

It’s Johnny “Red” Pollard, the hard-luck jockey who rode the racehorse Seabiscuit to glory in the late 1930s. Pollard battled through a series of racing accidents that blinded him in one eye, nearly tore off his right leg and left him in constant, agonizing pain for the rest of his days.

Why the attraction to Pollard? Hillenbrand says she and the jockey both chose to make the same sacrifice. Pollard gave his body to chase his dreams of racing horses. And she gave hers to tell the story of Seabiscuit.

“I have absolutely destroyed myself writing this book,” says Hillenbrand, whose project, “Seabiscuit: An American Legend,” has been a fixture on national best-seller lists for months. “I knew I was going to, but it was something I had to do anyway. For me, it was a matter of dignity.”

Hillenbrand has struggled with chronic fatigue and immune dysfunction syndrome (CFIDS) for the past 14 years. A morning shower can exhaust her for hours. A short stroll outside her Washington, D.C. home often leaves her too weak to prepare dinner. She fights intense bouts of vertigo that prevent her from reading or writing for months at a time.

Yet the drive to complete “Seabiscuit” has kept her going. She has called the book “the baby I’ll never have,” and says she has no regrets about the price her body has paid.

“It wasn’t even a matter of choice. This illness wasn’t going to take away my last joy, the ability to write,” Hillenbrand says.

Searching for an answer

CFIDS struck Hillenbrand in early 1987. She was a 19-year-old college student with perfect grades and an eye toward becoming a history professor. Hillenbrand says her problems began after she developed a case of food poisoning on a car trip between her Maryland home and the college campus in Ohio.

By the time she reached Ohio, she was so ill that her friends called paramedics. Hillenbrand tried to fight through the sickness for more than two weeks, but gradually grew weaker. Finally, barely able to crawl out of bed, she was forced to withdraw from school and move back home.

During the first few weeks of her illness, Hillenbrand lost 22 pounds. She went from doctor to doctor, desperately searching for a diagnosis, but was disappointed at every turn. Some physicians simply told her that she was making up her illness. After measuring Hillenbrand’s blood pressure at a dangerously low 70mm Hg/50mm Hg, one doctor left the room, told Hillenbrand’s waiting mother that Laura’s problem was psychological, and abruptly walked away.

Another doctor told her she had an eating disorder, bulimia, even though the diagnosis was clearly wrong. Hillenbrand used the rest room after the appointment, started to walk out – and was shocked to find the doctor standing there with his ear cupped to the bathroom door, listening to determine whether Hillenbrand was forcing herself to vomit.

Personal relationships also started to fray as her health declined. Many people remained strong for her, especially her boyfriend, Borden Flanagan. But Hillenbrand felt that others kept their emotional distance, doubting that her symptoms were really that bad.

Finally, after 10 months of searching and suffering, Hillenbrand found a doctor at The Johns Hopkins University School of Medicine in Baltimore who diagnosed CFIDS. In a strange way, Hillenbrand was grateful. “Here he gives me this terrible prognosis,” she says, “and yet it was still better than not knowing. He was the first medical person to take me seriously.”

Seabiscuit to the rescue

Hillenbrand’s love for horses and horse racing emerged early. She’s been hooked since childhood, when her father took her to a tiny racetrack near their home. She still remembers the first horse she saw – a big gray named Bluebonnet. The horse stopped during the post parade and stared at the awe-struck young girl. “I was a goner right then and there,” she says.

It was the power and grace of the thousand-pound Thoroughbreds that captured her imagination. “Their raw athleticism is astounding,” she says. “I really believe that God never created a more perfect athlete.”

As a young adult, after CFIDS stole much of her own physical ability, Hillenbrand again found inspiration in horses. She began writing freelance magazine articles for Equus magazine as her condition permitted. While she was not able to return to school, Hillenbrand at least felt productive working out of her house.

But then she overreached. A 1991 trip to Saratoga racetrack in upstate New York triggered a three-year relapse. Vertigo robbed her of her biggest pleasure, reading and writing. Unable to sit up in bed, Hillenbrand simply listened to the ticking of her watch, counting off the minutes as she lingered, unsure of what, if anything, the future held. It was, she says, her darkest time.

When the symptoms finally eased, Seabiscuit entered her life.

Hillenbrand remembered reading a book as a child about a small horse from the Great Depression, a castoff who became America’s darling when he beat the famous horse War Admiral in a head-to-head race back in 1938. Looking for freelance material, Hillenbrand did some research on the horse, Seabiscuit, and wrote a story for American Heritage magazine. The piece was an instant sensation, and in 1998 Hillenbrand won the Eclipse Award, the biggest prize in horse racing journalism. A book proposal attracted several publishers, and Hillenbrand agreed to write Seabiscuit’s tale for Random House.

Hillenbrand knew that the book would require a massive research effort, plus countless hours of writing and re-writing. She thought hard about what the project would do to her health, and wondered whether she could pull it off. In the end, she decided to accept the risks.

“Actually, it wasn’t even a matter of choice,” she says. “Anything was better than just sitting in my room and metabolizing.”

Seabiscuit, like Hillenbrand, was an immense talent looking for a chance to show his stuff. Though he came from decent stock – his father, Hard Tack, was a brilliant if ill-tempered thoroughbred, not to mention a son of the legendary Man o’ War – Seabiscuit was never much to look at. He ran with a peculiar, mismatched stride and usually appeared much more interested in sleeping than racing. As a result, he was poorly trained and handled, and never rose above low-stakes races.

It wasn’t until he was sold to automobile magnate Charles Howard in 1936 that Seabiscuit’s star began to rise. Howard’s enigmatic trainer, Tom Smith, convinced Howard to buy the animal for $8,000. Smith was smitten, much like Hillenbrand was with Bluebonnet, when Seabiscuit started at him with is expressive eyes.

Hillenbrand tells Seabiscuit’s story with mesmerizing attention to detail. She recounts how many miles Seabiscuit traveled by train in the years before his race with War Admiral – 24,265. She talks about the unconventional and dangerous methods old-time jockeys used to lose weight, including burrowing into mountains of steaming horse manure while wearing rubber suits. And she even unearthed a light-hearted telegram that the injured Pollard sent to his replacement jockey on the eve of the big race. “There is only one sure way of winning with the Biscuit,” he wrote to George Woolf. “You ride War Admiral.”

CFIDS meets Seabiscuit

Between the magazine article and the book, Hillenbrand spent four years working on the Seabiscuit project. It was her only activity, her only focus, and it took an indescribable effort to bring her “baby” to life.

Hillenbrand rarely left the upstairs room in the home she shares with her boyfriend, Flanagan. She conducted all of her research by phone, fax, e-mail and letter. She collected thousands of pieces of Seabiscuit memorabilia, form photos to race programs to a Mexican work visa Pollard once used while racing in Tijuana. She ordered countless library books and often resorted to buying old racing items on Internet auction sites.

“This project cost me a fortune,” Hillenbrand says, laughing. “It would have been, much easier if I had been able to go out and collect these things.”

Hillenbrand set up her bedroom/office as efficiently as possible. Nothing was more than an arm’s length away, from the fax machine to the small refrigerator that held enough food to last the entire day, she’d take a brief walk outside. She kept up this routine seven days a week, 365 days a year, through the night sweats, crushing fatigue and growing vertigo.

“It was the only thing I could have possibly done with myself,” she says. “I’m built for writing. I ask myself sometimes what would have happened if I’d been an athlete or a mathematician. I would not have been able to work.”

“Seabiscuit” hit the shelves earlier this year to universal acclaim. Like its namesake, Hillenbrand’s book has created a bit of a sensation. It climbed to the tops of dozens of national best-seller lists, and has remained there for months. In fact, “Seabiscuit” might become the biggest selling nonfiction sports book of all time. The book has proved so successful that Universal Studios purchased the rights to the movie. When the time comes, Hillenbrand will serve as a consultant, though she will not write the script.

Although the book is finished, Hillenbrand has found little time to rest and enjoy her miraculous achievement. Immediately after the book hit the best-seller lists, she was besieged with requests for interviews. She has spoken with dozens of radio stations, more than 100 newspapers and magazines and several major television shows. Recently, she talked with Bryant Gumbel on CBS’s The Early Show.

Hillenbrand has only one rule for interviewers: they must come to her. She simply doesn’t have the strength to travel to New York or even to downtown Washington. Most times, she talks to reporters on the telephone. When the TV crews arrive for a remote broadcast, they turn her house upside-down with wires, lights and cameras. But since that’s the only way she can promote her book on screen, she says she’s learned to live with it.

Hillenbrand relishes the parallels between her struggles and those of the characters in her book. Her Random House editor, in fact, calls the book a metaphor for her life. “ I identify with them,” Hillenbrand says. “This is a story of hardship. For me and everyone else with CFIDS, its’ the story of your life, to get up and gird yourself for each and every day.

“Red Pollard’s biggest hurdles were the limitations of his body. There’s nobility to him. So many times, it seems like he’s finished. Yet he always fights back, overcomes and finds a way.”

There are no plans for another book, not yet, anyway. And that’s fine with Hillenbrand. She knew the toll “Seabiscuit” would exact on her body, and she’s willing to deal with the consequences. Besides, she says, she’d be hard-pressed to find a subject that captues her imagination more than the tale of the plucky little Thoroughbred and the ragtag group of people who coaxed him to glory.

“I’m a sucker for an underdog,” Hillenbrand says. “And this is the best underdog story ever.”



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