ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
An author escapes from Chronic Fatigue Syndrome
Thursday 10 February 2011
An Author Escapes From Chronic Fatigue Syndrome
Laura Hillenbrand, the best-selling author of “Seabiscuit: An American Legend,” is known for her exuberant storytelling and dynamic characters. Her newest book, “Unbroken: A World War II Story of Survival, Resilience and Redemption,” is a riveting tale of the life of an athlete and war hero, Louis Zamperini.
Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.
The illness, a devastating and little understood disorder, is characterized by overwhelming fatigue and various nonspecific symptoms like muscle pain, memory problems, sore throat, swollen lymph nodes, achy joints and unrefreshing sleep. I recently spoke with Ms. Hillenbrand about her latest book and why she is speaking out about the challenges of life with C.F.S. Here’s our conversation.
Q. Why have you started talking about your illness?
A. I had never been public about my illness at all before “Seabiscuit.” I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed. People don’t understand this illness, and the name is so misleading. I realized I had this opportunity because I was going to be getting press attention for the book. I’m going to talk about it because I can. Maybe that will save the next person from going through what I did.
Q. Do you think it’s hard for people to understand how debilitating chronic fatigue can be?
A. This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person. I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.
This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.
Q. When did you learn you had chronic fatigue syndrome?
A. I got it when I was 19, and I was diagnosed at 20 by the head of infectious disease at Johns Hopkins. It was the most hellish year of my life. I went from doctor to doctor. I got very thin and lost 22 pounds in a month. One doctor thought I was anorexic and lectured me about it. After my appointment he followed me to the bathroom and put his ear to the door. When my doctor at Johns Hopkins finally said, “You have a real disease,” that was an important moment for me.
Q. What were your first symptoms?
A. As it does in most people, it had a very sudden onset. I was an athlete and had always been healthy. I was riding in a car on my way back from spring break my sophomore year of college and felt very nauseated. I guessed it was food poisoning. I woke up a few days later, and I literally could not sit up, I was so weak. It hit me that fast. I had to drop out of school because I couldn’t make the walk to the classes.
Q. What happened once you left school?
A. I was bedridden the first two years. I was having fever all the time and huge lymph nodes; the reddest, rawest, terrible sore throat; typical sweats and chills like the flu, but it didn’t go away, month after month. I had the most extreme exhaustion and balance problems, strange cognitive things, trouble concentrating. I couldn’t read analog clocks anymore. I’d try to say one word and a different word would come up. I had brain fog that was terrible in 1987 and 1988, and then it started to slowly get better.
I did better until 1991, when I tried to take a road trip to Saratoga. I had a catastrophic C.F.S. crash, went into shock, and went back down to the bottom to worse than ever. Then vertigo started, and ever since the room appears to be moving around me. I feel like I’m moving all the time.
Q. How are you now?
A. I’m housebound now. I had a relapse while I was working on the book in 2007. I got weaker than I’ve ever been. I’ve been too weak to leave the house for two years. I only leave the house about once a month. I’m just not very strong. A lot of days I don’t get down the stairs. It’s a slow process to recovery. The book publicity is quite difficult for me. I’m not able to do that much of it. It’s taking a whole lot out of me.
Q. It’s hard for me to imagine how you could have done the research and writing for two books during this time. How did you do it?
A. It’s a trade-off for me. While it’s really hard to do, at the same time, I’m escaping my body, which I really want to do. I’m living someone else’s life. I get very intensely into the story, into the interviews and the research. I’m experiencing things along with my subjects. I have a freedom I don’t have in my physical life.
Writing is a godsend to me that way. Without it I wouldn’t have anything. I am completely still almost all the time. A lot of time I don’t leave the upstairs. What I have is the story I’m working on. It’s a wonderful thing for me to get out of my body for a while.
Q. Do you think having C.F.S. influences your writing?
A. Because my life is so silent and so still, I think I’m able to get deeper into what I’m working on. My mind is willing to get out of here and go into there. It becomes such an intense experience.
Q. Did you always want to be a writer?
A. At the time I got sick, I wanted to be a history professor. I was 8 years old when I went across the street from my house to a fair, and they always had a used book sale. For a quarter I bought a book called “Come On Seabiscuit.” I loved that book. It stayed with me all those years. I was sick and housebound and looking for something I could write about. I wrote an article. I was partway through it and realized there was a huge untold story.
Q. How did you do the reporting for the book?
A. Lots and lots of interviews, at least a hundred, and going through newspaper archives. The family of Seabiscuit’s owner sent me 30 enormous leather scrapbooks. I bought so many things on eBay — vintage things, magazines. I did many interviews with very, very old men.
Q. Who helps you manage your life?
A. I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.
Q. Why did you decide to write about Louis Zamperini?
A. Seabiscuit led me to him. My subject was one of the greatest runners in the world in the 1930s, likely to break the four-minute mile. Seabiscuit was famous at the same time. All the newspapers that covered Seabiscuit also covered Louis. I kept reading about him. When I got done with Seabiscuit, I wrote him a letter and called him, and he told me his life story. I had to write this book.
It’s the most amazing survival story. Louis was an Olympic runner who hung up his shoes and became a bombardier. He crashed in the Pacific and floated on a raft for 47 days. Sharks jumped on board to pull him off. He was attacked by a Japanese bomber. He nearly starved to death. He went through a typhoon and was captured. His captors experimented on him, enslaved him, and he was a prisoner for two years. The things that happened to him, and his defiance — it’s an amazing story.
Q. It sounds like on some level you could relate to him.
A. I think because of what I’m dealing with, I’m really interested in people who become trapped in extremity and have to rely on their character to pull them out of it. I’m fascinated by the struggle, and the attributes that enable people to survive these things. I want to look to them for inspiration. I think that’s why I’m drawn to it.
Louis has told me he felt I was someone who was easy to open up to because he knows I’ve suffered. With someone else, I think he might have been a little more taciturn. But he felt, “She gets it. She’s been to this place herself.”
Having to go all the way to the bottom of yourself to find the resources to survive: this is something I understand well. I understand desperation. It’s an emotion I have dealt with a thousand times in the last 24 years. You feel like you don’t know where you’re going to get the strength to go on. We’ve been to the same place in different circumstances. I’m not comparing myself to a prisoner of war, but there are common emotions that enable me to identify with him.
Q. Do you think your writing would be different if you didn’t have this illness?
A. I don’t remember what it’s like to feel well. I’m 43. I was 19 when I got sick. It’s a lifetime ago. It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.
Q. Your personal story is so compelling. Have you thought about writing something autobiographical?
A. My husband wants me to. I just don’t know that I want to do that. I have to spend so much time being vigilant on my body and worrying about my body and suffering. So much of my own autobiography would be about my health, and I don’t know if I want to spend my professional life thinking about that. I write to escape my circumstances.
Body willing, and if I can find a subject that compels me, I’ll keep writing. It’s a great way to touch the world, because I’m not in this world. I went out recently to the CVS drugstore for the first time, and they had these new checkout things with no person at the checkout counter. I was baffled by this. Writing is my way of communicating with the world, and I don’t have any other way to do it, so I want to keep doing it.
The above originally appeared here.
blog comments powered by Disqus