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Thursday, September 04, 2003
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Great reader Q&A piece in the New York Times with Laura Hillenbrand. The Q&A, appropriately, was mainly focused on Seabiscuit, writing techiques, research, etc. However there were a few CFS questions:
Q. I read your New Yorker article about your chronic fatigue illness. It was beautifully written and quite moving. Do you plan to do a book on the subject, or will you stick with horses? Can you tell us what your next subject might be? How does the success of "Seabiscuit" affect the way you approach writing your next book?
A. The New Yorker piece was the hardest thing I have ever written, both because I am struggling with vertigo, which makes reading and writing punishing, and because it’s very difficult for me to find words to express the devastation that my illness brought to my life. It took two years to write the article. Eventually I might want to write a book about my experience with this disease, but that is a daunting prospect. My career has given me a way to find a separate identity outside a disease that governs every detail of my life. I'm not sure I'm ready to focus my career on my illness, because I would lose that escape. I doubt that my next book will be related to horses either. One of the things that I love about my career is the ability it gives you to roam through many different subjects, and I'm ready to learn about something new. I will go where the stories are.
What a great answer. Devastation is the correct term. A serious case CFS or FMS can completely blow apart one's life. She worked through, around, over, and under CFS to write Seabiscuit.
Her answer to the question below is very telling. A huge aspect of living with CFS/FMS is taking care of yourself. If you screw up and overdo it, you pay for a very very long time. It is an extremely difficult adjustment to make. I know I that even when I try to be good, I stupidly do too much anyway and pay the price - after all, life is here to be lived.
Q. 10. We've heard about your struggle to write at times, under the overwhelming sway of chronic fatigue, whose symptoms of vertigo, profound exhaustion and pain demand a purposeful, disciplined schedule of rest. What have you won through this experience? What part of it, if any, has been too big a price to pay? How is the chronic fatigue now that the book is done and the movie's in theaters? What words of encouragement or advice would you give to others suffering from C.F.S. about setting goals and achieving dreams such as yours?
A. I did not take good care of myself as I wrote this book, and I am continuing to pay for it. The day after I turned in my manuscript, my health collapsed. My exhaustion became much more severe, and my vertigo returned in force, making it impossible to read more than a few lines a day. Three years later, it has relented slightly, but I am still severely limited in my ability to read and write. I write an occasional magazine article, but it takes weeks and leaves me miserably dizzy. I am still unable to read a book; I do all my "reading" via audiotape. Strength-wise, I am improving, but I am not as strong as I was before I began this project. Thanks to the success of the book and the movie, my schedule has been extremely exhausting, and I am hopeful that once my life calms down a bit, my health will rally.
It has not been a good three years health wise, but I'm not sure I would say that it was too big a price to pay. The book was a blissful escape for me, giving me the chance to walk around in the lives of three fascinating, vigorous men who lived a life of motion -- a life opposite to my own. And though I have sacrificed my health for this project, in a way I feel that the book has given me a way to triumph over my disease, because I was able to achieve something in spite of it. Finally, it has given me a platform from which to be an advocate for the 800,000 people in this country who suffer from chronic fatigue syndrome, a greatly misunderstood and very serious disease.
9:04:03 PM 
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© Copyright 2005 Stephanie A. Kesler.
Last update: 3/5/2005; 8:35:48 PM.
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