Rebecca Alexander is the author of the new memoir Not Fade Away: A Memoir of Senses Lost and Found. It examines her experiences with the genetic condition Usher Syndrome Type III, which causes progressive hearing loss and vision loss. A psychotherapist, activist, and extreme athlete, she lives in New York City.
Q: You write that your agent waited five years for you to decide to write your memoir. Why did you opt not to write it initially, and what made you decide to do it?
A: My literary agent approached me—my brother [journalist Peter Alexander] did a story about me for the Today show—he approached me, and I thought, What do I have to say? I wasn’t quite ready. All my writing was journal writing. As it turned out, that was the best kind of writing.
After we started a nonprofit organization—there was no organization specifically for Usher III—I did a spinathon. It was written up in The New York Times, and my literary agent reached out to me again.
I’d been approached by another literary agent for me and my brother to write a book. There was no way I could pin my brother down, and it wasn’t really his story, [although] it was great he got the word out about Usher Syndrome.
Q: What do you hope readers take away from your book?
A: I think the most important thing—I was pretty disappointed [to] find the book in the disability section. It was such a bummer. We still live in a world that’s closed-minded. We’re still very much not a totally inclusive society.
Having a disability doesn’t mean that’s who you are. We’re all dealing with something. People who identify with my book are not necessarily people with disabilities. My process is similar to other people’s—a journey toward self-acceptance. I found the book on the disability shelf, and thought, We have a lot of work to do.
Having Usher Syndrome—on the one hand, people could say, That’s the worst thing. There’s no question on some days I feel terribly sad. [But] if it weren’t for Usher Syndrome, I never would have learned sign language and tactile sign language, or recognized how fragile life can be…
I don’t think people look at me and say, She’s going deaf and blind. You don’t know what people are going around with.
Q: What advances have been made regarding Usher Syndrome Type III in recent years?
A: Stem cell research is really important, and there was a big step back when stem cell research was put on hold. All different types of conditions could benefit from stem cell research.
Twenty years ago, I was told that in 10 years there would be something to stop it. Ten years ago, I was told that in 10 years there would be something to stop it. Now here we are.
I’m very hopeful. There’s a lot of work in gene therapy—to bypass the retinal cells and go into the ganglion cells. The same way we use a cochlear implant to hear. There’s a lot of promising research. I’m hopeful, but we’re not there yet. [The timing] is hard to know. I try to remain cautiously optimistic.
It was a deliberate decision I made, to become the poster child for Usher Syndrome. The word has to get out there. It doesn’t affect as many people as cancer…it’s an orphan disease.
Type III affects a very limited number of people, but that doesn’t mean we shouldn’t look for a cure. The more awareness people have, the more people can be diagnosed, and the more people can help.
Q: You write, “With two of my senses vastly diminished, I cherish the others…” How have your other senses been affected by your decreasing sight and hearing?
A: Everybody in my life knows I’m a bloodhound. My brother says, I need you to come to the fridge—something’s gone bad, and I need you to sniff out [what it is].
Living in New York City with a strong sense of smell is not the best thing! I can name any perfume someone is wearing. I have a patient who stopped smoking. Five or six months after, I said, You’ve been smoking again! He said, Three days ago, I had a cigarette. I could still smell it. Often, smells are very faint but I still smell it. My sense of touch is very heightened too.
Q: Humor seems like a very important part of your life. How has your sense of humor affected you?
A: Going deaf and blind can be terribly tragic, but insanely funny too. Running head-on into something [isn’t] funny, but I was standing and talking to a column for five minutes before I realized I was talking to a column!
My answer may be totally off –[I’m asked] What salad do you want, and I say, It was so much fun! There’s a lot that’s absurd about it.
Today I thought I had a black camisole under my sweater, and I realized it was a workout top! These are things that happen. You can choose to feel terrible, or just roll your eyes and say, This is life.
My best guy friend, Alan, sometimes when we’re sitting next to each other…he will pull my hearing aid out of my ear and put it next to his mouth and say hello. It’s funny…
Q: How did you decide on the book’s title, and what does it signify for you?
A: I didn’t like the title. It was as if there was a vote on it and I lost! Originally it was going to be "Dancing in the Dark." But some people had concerns it would sound like the Bruce Springsteen song—about him meeting a younger woman and having sex, or something.
My literary agent came up with "Not Fade Away," and my editor thought that was brilliant. It’s also a song.
I didn’t like it because there is the word “Not”—I don’t like a negative word in the title. It’s the idea that I’ve had all these memories, and they won’t fade away even if I can’t see or hear what I could at the time. There are still things I remember vividly…
Q: Are you going to write another book?
A: I’d like to. So much has happened since the book was published. I would like to, in all my free time!
Q: Anything else we should know?
A: I really think my book’s message to everyone is whatever you’re facing, you’re not alone. We all have something. There is a tremendous sense of loneliness when you go through adversity. It’s important to find community.
Reading about how people came to terms with their situation, I always found things I could relate to. It’s so important to read about others’ experiences and realize we are all in the same boat, trying to do our best.
--Interview with Deborah Kalb