The Texas Book Festival and the Austin Jewish Book Fair partnered to present Rebecca Alexander, the author of the memoir “Not Fade Away: A Memoir of Senses Lost and Found” in the House Chamber on Sunday.
Alexander was born with a rare genetic mutation called Usher Syndrome type III that led to the progressive loss of her sight and hearing. After being diagnosed at 19, she decided to do something to feel more empowered and applied to graduate school in social work.
“Helping others has always been what I knew I wanted to do because I, too, need help in different ways. I also wanted to think realistically about my future. I decided that being a psychotherapist would be an ideal environment –– I would be in a quiet room with people in front of me.”
Around that time, she also decided to train for an HIV/AIDS bicycle ride, and from there went on to do other extreme endurance races and even taught spin classes. She also founded the Usher III Initiative, a nonprofit organization.
Alexander said her impetus for writing “Not Fade Away” was to give a voice to Usher Syndrome. “Most importantly, reading other people’s memoirs helped me in my process. … Even if I couldn’t identify completely with what they’d written about, there were parts of the book that resonated with me.”
Over the years, as part of coming to terms with her condition, she’d been writing about her life and challenges. She drew on that for the book. “The only way to write it was to be brutally honest, because I’d spent so many years covering up who and what I was.”
One other thing she’s learned is that the more comfortable she became about sharing her disability, the more comfortable other people became about asking about her condition and being around her.
Alexander uses tactile sign, a form of sign language in which people clasp hands to sign. She and her best friend, Caroline, demonstrated the intricate, graceful dance of tactile sign.
Alexander recently underwent a cochlear implant in her right ear. Because she had been able to hear earlier in her life, she was an ideal candidate for the procedure. As of September, she had 90 percent hearing in her right ear. Even so, she observed, “It takes a lot of time and patience to relearn how to hear.”
When asked about coming to terms with having to rely so much on other people, Alexander replied, “The people I know who have Usher’s, it’s incredibly frustrating. It’s difficult to lose that sense of independence.
“Being dependent on others means that I also need to be able to reciprocate. It is a give and take. When you need help, the best thing to do is take a deep breath and accept that you need help.”