Richards: You must have had very strong feelings about sharing your experiences with CFS to have undertaken the huge task of writing a book while you were still so ill. What was it that compelled you to write this book?
Wall: I actually didn’t set out to write a book. I just set out to write a few essays. I’d been sick since 1978 but in 1995 I had a complete collapse and was suddenly housebound. I was very struck by this issue of staying home. As a modern woman who had always expected to have a life out in the world, I suddenly didn’t have that anymore. I felt a kind of resonance with women of earlier times who were confined to the home for social reasons and I wanted to write about that. As a writer, that was a fascinating tension that I wanted to explore –– being muted and invisible and marginalized and housebound. I wrote a very short essay called, “Staying Home” when I was finally able to sit up in bed in 1997.
Then as soon as I finished that essay, another essay came. I started writing about this whole issue of determination. The idea that pushing yourself and willing yourself to do things is the opposite of what you need to do to get better with chronic fatigue syndrome. I had a lot to say about the difficulty of being someone who is usually very determined and pushing ahead and having to retrain yourself not to do that. Then other issues kept coming up and I kept writing.
Finally, after a few years, I started to think that maybe I had a book on my hands. I sat down and read all of the essays together, thinking maybe I could just collect them and have a book. It was then I realized that, maybe there’s a book here, but there's a lot more work to be done. At that point I wanted to tell not only my personal story, but to tell the cultural story, the political story, the medical story. In 2001 I started interviewing researchers, physicians and advocates who were involved with CFS. Then I worked on blending my personal story of illness with this larger medical and cultural story.
R: Well, you did an excellent job.
W: Thank you. What I became really fascinated with was this idea of invisibility. Of course, the title of my book is Encounters with the Invisible. There are many, many ways a person with chronic fatigue syndrome is invisible. We’re invisible because often we look perfectly well. It’s not always clear by looking at us that we’re severely ill. We’re often invisible because we’re at home. We’re not seen; we’re not out in the world. But we’re also invisible because the medical conversation leaves us out of the picture. In recent years things are changing, but back in the ‘80s and ‘90s there was virtually no medical language to talk about a chronic, persistent illness like CFS. And that renders a kind of invisibility. I was interested in all of these strands, all of the ways a person with this illness is not seen. The more I wrote, the more that became a real impetus to try to unravel all these different strands and talk about the impact on the ill person and the impact culturally, since now there are over a million people with this illness.
R:: You mentioned that your book started out as a few essays. That’s interesting because one of the things I especially appreciate about your book is that, in some respects, it is like a collection of essays. Although they all tie together to make a complete story, the individual chapters can also stand alone, which I think is particularly important for people with CFS, who often have problems with memory and concentration. A lot of people tell me they have trouble reading an entire book. The fact that you can read a chapter at a time I think is really important. Was this part of your initial plan for the book?
W: No. I wasn’t thinking anything along those lines. The reason I wrote it that way is that I’m a poet and essayist. That’s just how I write. I write small because that what a poet and essayist does. I don’t think in terms of a whole book. And as I said, it wasn’t until I had a whole collection of these individual pieces that I thought about pulling it together. But I’m glad that it has that impact. That’s a serendipitous result. I understand and know the experience of not being able to read a whole lot at one time, if at all. Being able to read in small pieces is important and I’m glad that my book ended up that way.
To read more of the interview, please continue to page two…
