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.
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.