Rebecca Alexander’s world is slowly getting a little darker and quieter.
Every day, she loses a little sight. And a little hearing. But the 35-year-old athlete, spin teacher, therapist and new author refuses to let the shutting down of her senses defeat her.
Alexander suffers from Usher Syndrome type III, a rare genetic disorder that leaves most people deaf and blind by the time they are in their 40s. Alexander, who will be speaking about her new book Not Fade Away at Head Royce School on Monday, Sept. 29, and Books, Inc. on Fourth Street in Berkeley on Tuesday, Sept. 30, now has only about 10% of her vision left. She can see directly in front of her, but has no peripheral vision. It’s like “the end of one of those old Warner Bros. cartoons on TV, where Bugs Bunny sits in the center of the screen waving goodbye as the picture becomes an increasingly smaller hole, until it’s finally gone, leaving only blackness. That’s all, folks,” she writes in the book.
A recent cochlear ear implant in her right ear means Alexander will retain some hearing for the rest of her life, but it will not sound natural. Sounds from a cochlear implant are digital and Alexander had to train herself to understand what was coming through.
Alexander’s roots in the East Bay are deep. She grew up in Oakland and attended Head Royce school. Her mother, Terry Pink Alexander, is the former director of the Judah L. Magnes Museum and still lives in Berkeley.
Alexander was 12 when her idyllic life with her parents, her twin brother Daniel, and older brother Peter dramatically changed. Her parents announced they were divorcing. By the time she was 13, Alexander’s hearing had declined so much she couldn’t hear when someone called her name from a nearby room.
Her parents took her to a specialist who diagnosed her with Usher Syndrome, but her parents disagreed on how much to tell their daughter about her condition. Her mother thought the truth was best; her father thought she would cope better learning a little at a time.
While Alexander did not fully understand her fate until later, she knew that her vision and hearing were declining. A headstrong teenager, she didn’t want to be dependent on others. So when it was time to go to college, Alexander selected the University of Michigan. She was determined to move as far away from home as possible.
But an accident delayed those plans. The summer before her freshman year, Alexander drank heavily one night and had a fight with her boyfriend. She woke up at 4:30 a.m. and had to go to the bathroom. It was dark, her night vision was bad, and she got so disoriented she didn’t notice an open window. Alexander fell 27 feet to the hard ground of the patio, and broke almost every bone in her body.
“When I landed it felt like an explosion,” Alexander writes in her book. “I don’t remember the pain, just trying to rasp out a yell, but all that came out was the faint cry of a wounded animal.”
Alexander was rushed to Highland Hospital and was later transferred to Alta Bates Hospital in Berkeley. She spent a year in rehab, a time of boredom and loneliness and feeling sorry for herself. But in some way her accident was a gift, as it taught her about tenacity and confronting challenges — skills she would need later when her hearing and vision dimmed.
“The perseverance I would need every day of my life really began in that (hospital) bed. The rest of the long, painful recovery would come, but I had already learned the lesson, that I had to meet it head-on, one day, one hour, one minute at a time.”
Fast-forward: After crawling under the covers, despairing about her future, Alexander embraced the world and her challenges. She graduated from the University of Michigan and later got two master’s degrees from Columbia University. She is now an endurance athlete who has climbed the mountains of Peru and has ridden her bicycle from Los Angeles to San Francisco. She teaches spinning classes. She has a private psychotherapy practice in New York City.
Many of Alexander’s friends and the reporters who have written about her say Alexander is relentlessly upbeat, a woman who looks forward and doesn’t feel sorry for herself.
He brother Peter Alexander, a correspondent for NBC News, called her “the bravest person I know” on the Today Show.
Alexander’s sight and hearing have continued to deteriorate. She now uses a white cane. She learned to read Braille. She can lipread. She knows and uses sign language. She has a guide dog of sorts: her miniature goldendoodle, Olive, who lives with her in New York.
Now Alexander is traveling the country to talk about the life experiences she details in her book Not Fade Away: A Memoir of Senses Lost and Found. She will be speaking at Head Royce School on Monday, Sept. 29 at 7 p.m.; Books, Inc. on Tuesday, Sept. 30, at 7 p.m.; and on Monday, Nov. 17, at 7:30 p.m. at Kepler’s Books in Menlo Park.
“Maybe it’s just who I am, but, despite all that I have faced, I am happy, and profoundly aware of how fortunate I am,” Alexander writes toward the end of her memoir.
Are you a culture vulture? Berkeleyside’s Uncharted: The Berkeley Festival of Ideas is two days of provocative thinking, inspiring speakers, workshops, and a big party — all in downtown Berkeley on Oct. 24-25. Check out the program and buy your tickets at www.berkeleyideas.com
