2016-06-30
This interview first appeared on Beliefnet on May 21, 2001. Laura Hillenbrand, now 36, remains disabled by Chronic Fatigue Syndrome. "Seabiscuit" is currently the country's number-one bestselling paperback.

How did you first come to write about horses and horse racing?
For me, being a writer was never a choice. I was born one. All through my childhood I wrote short stories and stuffed them in drawers. I wrote on everything. I didn't do my homework so I could write.

In terms of writing about horses, I fell backwards into that. I was intent on getting a Ph.D., becoming a professor, and writing on history but I got sick 14 years ago when I was 19. Getting sick derailed that plan completely.


I spent the first year of my illness pretty much bed-bound and when I began to improve a little bit in 1988, I needed some way to justify my life. I had an idea watching the Kentucky Derby in 1988, something I could write about that hadn't been discussed much. So I wrote an essay and mailed it to Turf & Sport Digest.

The theme that runs through this story is of extraordinary hardship and the will to overcome it.

The magazine no longer exists but it had a huge circulation when the sport was at its height, back in the thirties and forties. It was on its last legs when I submitted the piece--they never did pay me--but they published me and said, "Do you want to keep writing?" I said sure because I was enjoying it. It was making me feel so much better about myself. I wasn't just a person lying in bed, now I was a writer.

You got sick in college with Chronic Fatigue Syndrome (CFS). Can you explain what CFS is and how your illness started?
It started in a very typical way--very suddenly. Prior to that, I was a straight A student, perfectly healthy. I was a very serious athlete. One evening I was driving back from spring break. I think I ate something that was bad earlier that day and I developed food poisoning.

For about two weeks, I was very sick. With CFS, it's typical to have a triggering problem. It could be food poisoning, a bad flu, pneumonia. I woke up two weeks after getting the food poisoning and I simply couldn't sit up in bed.

The biggest problem has been exhaustion. I've spent about 6 of the last 14 years completely bedridden. At times, I have been unable to bathe myself. I have gotten so bad I couldn't really feed myself and a couple of times I needed someone to spoon feed me. I have had trouble rolling over in bed.

Right now my exhaustion is bad enough so I'm 100% housebound. I've only been out of the house three times since my book came out two months ago.

I have vertigo. Vertigo makes it feel like the floor is pitching up and down. Things seem to be spinning. It's like standing on the deck of a ship in really high seas.

No matter what happens with this illness, I think it is possible to carve out a dignified and productive life from it.

Almost everybody gets night sweats and chills. I've had a fever for 14 years. Some people have very severe joint pain and muscle pain.

You've said that the first year you were sick was very tough, mainly because you couldn't get a diagnosis. Talk about that first year.
It was extremely frightening. I lost 22 pounds in the first month and I didn't have that weight to lose. I lost all my vitality. My hair started falling out. I got sores all over my mouth and my throat. I was running fevers all the time. I would go to doctors and they didn't know what it was, and their inclination was to assume that it was psychological or that it was an effort to get out of doing school work. It was really enraging and upsetting because when doctors don't support you, you lose the support of family and friends, just about everyone.

Because they begin to doubt you?
Right. I had unequivocal symptoms. You could put a thermometer in my mouth and see I was running a fever. Yet they were trying to find reasons for making this [illness] somehow my fault. I was told I was bulimic. I was not bulimic; I never threw up. My throat was beet red; I had huge lymph nodes. I was told I was depressed. I was told I had an attitude problem and needed to get my act together. One doctor wrote down that I was simply trying to get out of school, which was quite amazing. I had a 4.0 average at college. I was not having problems in school.

What finally turned the situation around?
I went to Baltimore to Johns Hopkins and saw the head of infectious diseases. He said, "Do not listen to these people. You have a very serious illness. It's called chronic fatigue syndrome." He couldn't do anything for me but to finally get a diagnosis, to finally have someone be compassionate and take me seriously was an enormous event.

So this physician was able to diagnose the problem, but couldn't do anything for you?
Not really. The reason so many doctors had shrugged me off was that this illness was only then being recognized. In their defense, there wasn't anything in the diagnostic manual. But because they didn't want to believe that they didn't know everything, they wanted to find a reason why it was my fault.

The following year the Centers for Disease Control recognized CFS and NIH began researching it in earnest. Today, there's enough research on CFS to be able to give it a definitive diagnosis.

Are there prescriptive protocols for people with CFS?
There are some things they tell you to do. A lot of it is very simple. You can't stress yourself. You can't push too far because if you do, your whole body will collapse and you can wind up for six months or eight months back in bed again.

You learn that right away because you make mistakes. I made a really big one. I was starting to get better when, in 1991, I tried to take a car trip to Saratoga Springs, New York, with my boyfriend. It was a really stupid, enormous mistake: I collapsed in a little town in New Jersey and went into shock.

I got much sicker than I'd ever been before. I spent the next two or three years completed bed-bound. The vertigo started with great ferocity and it was hell on earth. I've never come back from that and that was ten years ago.

Writing the book took physical vitality out of you. But do you feel that the book fed you emotionally, psychologically, spiritually?
I identified in a very deep way with the individuals I was writing about because the theme that runs through this story is of extraordinary hardship and the will to overcome it. That is the fundamental struggle of my life, trying to get over this extremely devastating physical condition. There are times when I think, "I can't stand this any more." But you find a way to do it.

That's the story of the individuals I wrote about: They were successful in overcoming what they had to deal with. Stepping out of my body and into their lives--they were vigorous men, who lived wild eventful lives that swung in gigantic parabolas--was an escape for me. I lived for four years in the 1930s with these individuals and the only time that I wasn't thinking about dealing with physical suffering is when I was working on this book. I've never been more alive as when I worked on this book.

At the end of chapter five you wrote: "The racehorse, by virtue of his awesome physical gift, freed the jockey from himself." And: "For the jockey, the saddle was a place of unparalleled exhilaration and of transcendence." I was wondering whether the relationship of the jockey to the horse might have been similar to you and the process of writing.
That's exactly it because, for the jockey, there are tremendous risks involved in getting on a racehorse. They punish their bodies to get themselves down to weight and then they have to go out and take the kind of risks that almost nobody has the courage to take. It's a ridiculously dangerous job.


But they get this prize at the end of it. They get to enjoy something that none of us enjoy who stay on the ground which is the exhilaration of being on the most remarkable creature God ever created, of being able to take part in that speed and power. That's very similar to the risk I was taking and the joy I got from writing it.

How did you choose to tell the Seabiscuit story?
I've known about the horse since I was a little kid. I read a book called "Come On, Seabiscuit," which somebody bought me for twenty cents at some book fair or something. I read the covers right off of it. I mean, the thing is falling apart. I still have it, all bound up in rubber bands.

So I knew the horse's story. Then in 1996, I was going through some old racing documents and came across some facts about the owner, the trainer, and the jockey that I had never known. I thought, "That looks really interesting." I kept looking and the story just kept getting better and better and I knew I had a book. You wait your whole career for a story like this.

It was many stories. Each of the main characters had their own story. The horse had a story and --
And other people. I got to interview more than 100 very elderly people who had actually lived this story. They gave it so much color.

I guess none of the principals were still alive.
They weren't, no. The last one, Marcella Howard [wife of Seabiscuit's owner], died in 1987. Red [Pollard] died in 1981. George [Woolf] [a jockey who rode Seabiscuit when Pollard was recuperating from an accident] had been dead a very long time. But a lot of people who were very closely associated with them were around. Alfred Vanderbilt, who arranged [Seabiscuit's] match race with War Admiral, was a huge help. George Woolf's best friend; Red's sister and children; a lot of Seabiscuit's exercise riders, grooms, stable agents. I was very fortunate. I'm right at the end of living memory with this one.

What would be your advice for people who have been diagnosed with CFS?
It's such an individual journey. But what I would say is, no matter what happens with this illness, I think it is possible to carve out a dignified and productive life. This illness takes everything away from you, and you have to find completely different ways to define what your life will mean to you. But I think it's possible to make a good life. I have been happy in the time that I've been sick. It requires a real redefinition of everything, but I think it is possible to do.

You sound at peace with your situation.
I wouldn't say I'm at peace; some days I really struggle with it. I have times of despair. When my vertigo came back and I lost the ability to write, it was a very difficult thing to adjust to. But I have learned to have very low expectations. I am not somebody who thinks I am entitled to good health or to a good peaceful happy life.

We are fortunate when we have them, but when we don't have them it's not that someone's taking them away from us. It just happens. [This attitude] has made it easier for me to deal with [my illness] than someone else who thinks, "Why me?" I've never thought that. CFS is definitely a very difficult thing to deal with. I go through times of real despair, but I pull myself out of it and keep going. I have no choice.

Are you living independently?
I am not really. I have a boyfriend who's wonderful, who's been with me since before this illness. We've been together more than 14 years. He does a lot of the things I can't do like get the groceries. He does the laundry. I do the cooking. I do some of the cleaning--and I earn the money. He is the most wonderful person in the world and I'm very fortunate in that.

If you're still struggling with CFS, will you continue to write?
I want to. It's really wrapped up in who I am. But finishing of the book, I was just working myself half to death. I've been doing a lot of interviews, and I have now lost the ability to read and write altogether. I've really paid the ultimate price. The vertigo is just so bad now. It actually causes, nystagmus, an involuntarily rolling of the eyes.

Can you focus when that happens?
Not really. I feel very, very dizzy. I'm at the point where reading and writing are over for me, at least for a while. I have to recover in order to resume my career and I don't know if I've done myself in for good. But it was important to me and I knew I was taking a gamble. This is the price. But I'm so happy to have brought this story to the country.