by Susan Josephs
Every day, Rebecca Alexander engages in a constant “juggling act” between her vision and her hearing. “In the span of minutes, the battery in my hearing aid could break down or I can’t see the text on my computer,” she says. “But for me, this is a way of remembering how fortunate we are to have what we do have.”
Since receiving a diagnosis with a progressive genetic disorder, Usher Syndrome Type III, which causes deaf-blindness, Alexander has never allowed her disabilities to prevent her from pursuing her life goals. Told by doctors that she would be completely blind by 30, the now 36-year-old, New York City-based psychotherapist maintains a busy private practice, works as a spinning instructor, participates in extreme athletic endurance races, and recently hiked Mount Kilimanjaro. In the last year, she’s also traveled the country to speak about her acclaimed memoir Not Fade Away: A Memoir of Senses Lost and Found.
“I wanted to give voice to others who are also going deaf and blind and allow them to know that they are not alone. This has been more meaningful than anything else,” says Alexander of her book, which she decided to write at the suggestion of a literary agent who watched her tell her story on The Today Show.
With just 10 degrees of vision, a cochlear implant in one ear and a hearing aid in the other, Alexander lives independently with her beloved dog, Olive, uses a cane for walking at night and credits her “sanity” to daily high-intensity exercise. “To use the parts of my body that are as physically capable as anyone else’s, to the best of my abilities, is so empowering,” she observes.
“To use the parts of my body that are as physically capable as anyone else’s, to the best of my abilities, is so empowering.”
As a teenager Alexander was selected to be an Olympic torchbearer in the 1996 Atlanta Games for her volunteer work delivering meals to people living with HIV/AIDS. Active in her San Francisco Bay area synagogue, “The Jewish community was a huge part of my support system,” she says of coping as a child with vision and hearing loss and the divorce of her parents. “And my grandmothers were huge role models. They taught me how important it is to acknowledge the things in your life that are going right.”
Alexander also traces her resilience to an accident she had at 18. After falling out of a second-story window, she delayed her studies at the University of Michigan and spent a year recovering from surgeries and healing multiple broken bones. “I would spend hours picking up marbles with my toes and putting them into a cup, then dumping them out and doing it again,” she recalls.
After receiving her undergraduate degree in American Culture, Alexander successfully battled an eating disorder that arose because “I thought that if I looked as perfect as possible then no one would know I had a disability.” Determined to be in a “helping” profession, she earned master’s degrees in social work and public health at Columbia University and built a thriving psychotherapy practice. “I think it’s important for a therapist to be a real person,” she says of her professional success. “And my patients know they have to help me too by speaking clearly and louder if I don’t hear them.”
Fiercely committed to organizations such as the Foundation Fighting Blindness, Alexander hopes to keep inspiring others who face “their own challenges. I never imagined living with as little vision and hearing as I do today but I’ve never been more at peace with myself,” she says. “I’ve learned to stay present and deal with what’s in front of me.”