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.