It was so risky, but I just believed that I could do it. I could have landed in bed for another 10 years. When I push too far … at one point, when I tried to take a trip in 1991, I went into shock and very nearly died. It was very, very, very risky for me to do this. Hillenbrand: It’s the biggest thing that got me to take this leap. I am always dealing with symptoms, but I was free enough to have that experience, to see America.Ĭostello: Love has really changed your life. What I experienced was an overwhelming sense of gratitude because I had been set free. We started at the Atlantic Ocean in Delaware. We went to the Black Hills and we went to Spearfish Canyon. I can’t describe how overwhelmed I was by the beauty. I don’t want you to know where we are.” We just pulled up and the land drops away and there are canyons everywhere. My boyfriend didn’t tell me we were going. And then we went to the Badlands and I’d never seen a canyon before. I was gasping at the grasslands of Kansas. People kept saying, “Well, you’re going to have to be bored in the Midwest because it’s not pretty.” I thought it was gorgeous. Every drop of rain, every stretch of highway, every blade of grass was beautiful because I was not in a bed, I was not in a house. Hillenbrand: Every single thing was beautiful. It was the most wondrous thing.Ĭostello: What did you discover on the trip? We got an RV and we took a monthlong trip crossing the country and it was a miracle for me. I was in love and I wanted to be with the man I was in love with. I also wanted a simpler world around me because complicated things are difficult with the cognitive problems from CFS. was not the right place to be for someone with CFS who was very intolerant of heat. Once I hit two hours, I started thinking maybe I could come across the country. And over two years, I went from being just miserably dizzy after five minutes to being able to go two hours. I was so dizzy for an hour afterward, but I just wanted to see: If I keep doing this, can I teach my brain how to tolerate it? I’d go a little longer and a little longer. It would be awful and I would feel terrible. I began to try to inure myself by getting in a car and riding for five minutes. Everything looks and feels like it’s moving. It looks like the room is moving around me. It feels like the floor is pitching up and down. It’s not a common kind of vertigo: It has been absolutely constant. To put you in the perspective of where I was, I had not left Washington, D.C., since 1990 because of vertigo, which has been a problem for me for most of the time I’ve had CFS. Hillenbrand: It took years to get ready to do this. But I’m doing it.Ĭostello: You moved from Washington, D.C., to Oregon. Once I got out here to Oregon, I got on a bike, which was another thing I was really into when I was healthy, and now I’m starting to ride a bike. I could do that.” Each one of those things that I did would make me feel like, “Maybe I can try the next thing.” It’s an extremely slow process, and sometimes I overstep and slip backwards. I started to test the boundaries and found out, “Well, I could do this. Hillenbrand: Everything has come together to give me a little bit of push. It’s a marvelous feeling to wed yourself to an animal of such strength.Ĭostello: It sounds like your life has taken a shift. Now I put on my helmet and my boots, and I just feel like I’m more of a normal person. It’s also therapeutic just as a physical accomplishment. That’s a great joy to me because it was something I did when I was a healthy person and I was younger.Ĭostello: Is horseback riding therapeutic for you? I’m doing much better now than I’ve done in years, and I’ve started riding horses. A life in which I’m not constrained in terms of what I want to do and not paying a huge price for what I do. What I think about is a life in which I don’t have to monitor my body. I think about if I could do this thing, if I could ride a bike for miles, or if I could climb to the top of the Empire State Building. Hillenbrand: I don’t really think about that as an aspiration, exactly. A big one is a move across the country to be with her boyfriend in Oregon, where she finds solace in afternoon car rides with views of resplendent Mount Hood.įor this special issue of Stanford Medicine on well-being, we were curious: What does the word “well” mean to someone who has been unwell for so long? Executive editor Paul Costello spoke with Hillenbrand about her illness, her newfound strengths and how she is leaving frailty behind.Ĭostello: Does the term “being well” register for you? There’s optimism in her voice and a sense of wonderment at new beginnings. Recently, Hillenbrand has made a lot of changes in her medical treatments and in her life.
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