Against All Odds, M.E. Society of America

Against All Odds

Illness made Laura Hillenbrand a long shot to finish the acclaimed book Seabiscuit

By Sally Jacobs, Globe Staff, 10/24/2002

WASHINGTON, D.C. - It is hard to write a book. It is harder still when

looking down at a piece of paper makes you dizzy, when you are so

persistently sick and weak that just taking a shower requires a three-hour rest,

and when, sometimes, the bookshelf across the room starts to ripple like an

accordion.

Somehow, Laura Hillenbrand did it, managing to overcome a legion of

crippling symptoms in order to write not just any book, but the

stupendously successful ''Seabiscuit: An American Legend,'' which was on

the bestseller list for more than a year and is now being made into a

movie. Never mind that her disease, chronic fatigue syndrome, is one that

some doctors do not believe exists at all. Never mind that she appears in

pink-cheeked health, so much so that Pond's skin cream recently featured

her in an advertising spread in Vanity Fair and Self magazines. Or that she

is actively engaged as a consultant on the film. The fact is that much of

Hillenbrand's life has been a saga of sickness, one now made worse by her

immense effort to write her book, and one that is almost as gripping as

that of the valiant 1930s racehorse who is the heart of her story.

Consider her troubles: Since the day she turned in her final draft two

years ago, Hillenbrand says, she has been plagued by a recurrence of

vertigo, spawned by her illness, so intense that she is barely able to read

or write. She doubts she will ever write another book. Not only do shelves

ripple, but the couch bucks, the armoire lists, visitors bob up and down,

and sometimes the floor drops out of sight. She cannot drive a car or fly in

a plane. She does not go to the movies because the light is too intense.

She has been out to dinner only once in five years, and even then she had

to be driven the one-block distance. Hillenbrand, in fact, says she is far

too ill even to marry her live-in boyfriend.

''If I were to get married, I would really want to show up, you know?''

declares Hillenbrand, 35. ''I don't want to do it if it's going to be this

really arduous deal, and I think right now it would be really hard to do.

The deal is that we are waiting until I get stronger.''

Her boyfriend, Borden Flanagan, a political-science instructor at American

University, agrees, adding, ''Another problem with a wedding is all those

people coming from out of town. Laura doesn't know if she can do anything

one day to the next, so I think we'll wait.''

It has been 15 years since Hillenbrand ate a piece of chicken at a hotel

buffet and got an apparent case of food poisoning that culminated in her

collapse and a diagnosis of CFS one year later. Since then she and

Flanagan, whom she met at Kenyon College six months before she fell ill and

has been with ever since, have endured the mercurial course that is

characteristic of the illness. There have been periods of disabling fatigue

that left her bedridden for months at a time. There have been night sweats

and fevers, spasms of vertigo, and once a period of partial blindness. At

times she was unable to shower for such a long stretch that her hair

''looked soaking wet.'' Some friends and family members, at least in the

early days of her illness, rolled their eyes in disbelief. One doctor

attributed her condition to puberty. Another told her, ''You've just got to

get up and get going, honey.''

But there have also been periods of relative wellness, periods during which

Hillenbrand began to write about the horses and the curve of the track that

have long been her passion. Perched in her bed, she pecked out stories for

magazines with names like Equus and Turf Flash. And then, in 1996, as she

was going through some racing documents, Hillenbrand came across the name

of Seabiscuit, the famous thoroughbred who triumphed over astounding odds

to become a racetrack legend and an icon in Depression-era America. She

knew the name well: A dog-eared copy of the children's book ''Come On,

Seabiscuit,'' which she bought from the Bethesda Elementary School fair at

age 7, sits on her bookshelf. But this time, it was the three unlikely men

who helped transform Seabiscuit's career as much as the horse himself who

fascinated her. Hillenbrand, who grew up riding horses on her family's

Maryland farm, identified as much with Seabiscuit's half-blind jockey, Red

Pollard, as the horse.

''I feel like I am Pollard,'' declared Hillenbrand. ''I can't write because

I have vertigo. He couldn't ride because he had no talent. Seabiscuit saved

him and gave him a reason to live. It's the same for me. I thought, `I can

tell this story.'''

A runaway bestseller

Five years later, the book was released to an avalanche of acclaim. In the

first week, it landed on the New York Times bestseller list; it shot to

first place in the second week and remained on the list for more than a

year. It has sold nearly 800,000 copies, and the film, starring Jeff

Bridges, Chris Cooper, and Tobey Maguire as the jockey, has begun

production and is expected to be released in July 2003. Because of her

illness, Hillenbrand has been unable to go on tour or even make it to the

studios of all the television and radio stations that want to interview

her. Instead, ''Good Morning America,'' ''NBC Nightly News,'' and the like

have lugged their equipment up her concrete stoop and set up their lights

in her small, lemon-walled living room. Her ficus, she says, laughing, has

made so many TV appearances that it is ''getting its own publicist.'' On

days that she does interviews, she rests in the morning and, she says, ''I

tell Borden not to talk to me.'' Sometimes when she is being interviewed on

the phone, she keeps her feet in the tiny refrigerator next to her desk to

keep a check on her ever-present fever, to which she attributes her rosy

glow. She is still sick, but it is different now.

''I'm on the other side of this illness, in a way, because I've had

success,'' explains Hillenbrand, dressed in a black blouse and short

red-and-aqua patterned skirt. ''No one could call me a malingerer now, and

I think that is part of the reason I wrote the book. I wanted to achieve

something in the world of healthy people, to demonstrate I am not a

malingerer. That I'm not lazy.''

Hillenbrand's success, however, has hardly cleared the clouds that hover

over CFS. Largely dismissed as ''yuppie flu'' in the 1980s, CFS has come to

be recognized as a medical condition by the Centers For Disease Control and

Prevention, one identified not just by fatigue, but by a constellation of

symptoms such as muscle pain and headaches. It has neither a known cause

nor a cure and endures as something of a medical mystery. Like many of its

victims, Hillenbrand, a slender woman with straight blonde hair, can appear

to be in good health: She withstood an interview of four hours.

That is part of the reason that some

researchers question whether the syndrome has an organic basis at all and

loosely categorize it, along with fibromyalgia and Gulf War Syndrome, as

unexplained ''psychic phenomena.'' Although symptoms often ease over time,

cases that persist, such as Hillenbrand's, tend not to dissipate.

Dr. Fred Gill, Hillenbrand's former doctor and now chief of the

internal-medicine consult service at the National Institutes of Health,

says Hillenbrand's case is ''remarkably severe'' and describes her

limitations as ''on the extreme side.'' Several of her symptoms, such as

temporary blindness and the sensation of pitching and rolling, are not

typical. But Gill and others say CFS symptoms vary widely. Hillenbrand has

tried a few of the medications recommended by the CDC, such as

antidepressants, but they have not worked. She rarely sees a doctor, she says,

because ''there's nothing much he can do.''

Her real caretaker is Flanagan. It is he who has bathed her brow during the

worst of it, who moved into her mother's Maryland home with her after she

first collapsed in 1987, who turned her in her bed when she could not do so

herself. He now watches that reporters do not tire her out. Although Hillenbrand's three

siblings have been supportive, only her brother lives nearby, and he does

not see her often. Her father, who is divorced from her mother, ''has

nothing to do with my illness,'' she says, and her mother declined to be

interviewed. Flanagan is the only one she allows to drive her, she says,

because ''he works the brakes so well. It doesn't affect the vertigo.''

Flanagan, a wiry 37, acknowledges that the years have been hard on him,

too. In the early '90s, when Hillenbrand was largely bedridden, Flanagan

says he felt consumed by her illness and floundered in his graduate work;

he still has not finished his dissertation. At some point, the couple

realized Hillenbrand would probably never be able to carry a child. The

future, he says, ''was empty. It seemed like my life was going to be an

unending spectacle of Laura's suffering.'' He thought of leaving more than

once.

But Hillenbrand's success has buoyed him as well. ''It's been so great to

see her flourish after all the years of being ground down, to see her come

back,'' exclaims Flanagan. ''I sort of feel like a roadie for Aerosmith.''

Hillenbrand's symptoms seemed to subside during the years she wrote the

book, and as publication approached, she debated with her editor whether to

discuss her condition in public. Since then, her frankness has only

enhanced her appeal and drawn a steady stream of reporters to her side. And

then, of course, there is the book itself, which by almost any assessment

is a triumph.

Anything is possible

''Seabiscuit'' is a riveting story about a gimpy-legged horse who defied

all the odds to become one of the greatest racers in history, one so

beloved that his name was mentioned in more newspaper articles in 1938 -

the year of his sensational triumph as Horse of the Year over archrival War

Admiral - than either Franklin Roosevelt's or Adolf Hitler's. It is a

masterpiece of reportage, chock-full of arresting detail. Hillenbrand plays

the drama of the backstretch like one teethed, as she was, by her father's

side at the dusty West Virginia tracks. But what makes ''Seabiscuit''

astonishing is that the only place Hillenbrand traveled for the book was

the library. She never interviewed a single character face to face or saw

any of the scores of places that she writes about. She did not visit any of

the tracks where Seabiscuit pounded out his fame, although she had visited

a few long before she became ill. She did not touch a single horse.

Instead, she turned the thermostat in her beige-walled office down to keep

her fever low. She stacked cereal boxes and bowls across the top of her

desk so she did not have to waste energy going downstairs for food. She

constructed an elaborate contraption to hold up reading material so she did

not have to look down. And then she got on the phone. Over four years, she

interviewed more than 150 people, many of them grizzled jockeys and track

veterans in their 90s. She posted scores of notices on the Internet,

searching for more. She pored over old newspapers and track records,

emptied eBay and other Web sites of track memorabilia. She hired a former

jockey to visit a racing library. She listened to crackling audiotapes and

watched scratchy newsreels. And in a way, as her editor sees it, her

condition may have helped the book.

''Laura doesn't have kids and she doesn't go out, so for years this was her

central passion,'' says Jonathan Karp, executive editor at Random House,

which published ''Seabiscuit.'' ''Even though she has this illness, in a

way it may have given her a focus and impetus that allowed her imagination

to find some kind of deeper connection to Seabiscuit that perhaps other

writers might not have. She got obsessed.''

Karp and Hillenbrand's agent, Tina Bennett, of Janklow & Nesbit Associates,

say that Hillenbrand's illness did not slow her progress at all, despite

several health setbacks, including a temporary loss of sight in her lower

left eye. It did alter the standard relationship among writer, agent, and

editor. Rather than Hillenbrand going to New York to work on the book, Karp

went to Washington, D.C. Bennett did not actually meet Hillenbrand until

one year after the book was published and they had worked together for five

years.

But the editing homestretch - several grueling weeks and so many late

nights - did Hillenbrand in. The day after she turned in her manuscript in

the fall of 2000, Hillenbrand collapsed. Or, as she puts it, ''the sky fell

again.'' The world began to pitch and hurl. The night sweats resumed in

force. The weakness crept through her bones. Now she is able to read and

write only a few paragraphs a day. She spends those paragraphs like a

miser: a few e-mails one day, a few sentences in the article she is working

on about her disease. If her recurrence is, as she says, ''the

price I am paying for the book,'' she feels it has been well worth it.

''The illness got me used to accepting that I couldn't do or have very

much. All possibility disappeared from my life,'' says Hillenbrand. ''Now,

with all this love coming in and people believing in me, I can believe in

myself. So in a way, Seabiscuit is to me what he was to people in the

Depression. He is possibility.''

This story ran on page D1 of the Boston Globe on 10/24/2002.