Fading sight and sound turn Oakland native into a fighter

At 35, Rebecca Alexander has achieved what many others her age would envy.

After getting her bachelor’s degree, she earned two graduate degrees from Columbia University, then built a thriving psychotherapy practice in New York City. She’s extremely fit, teaching spinning and high-intensity training at a NYC gym.

Rebecca Alexander at her bat mitzvah in the early 1990s

The Oakland native was profiled in a lengthy New York Times piece, interviewed twice on the “Today” show — most recently on Sept. 15 — and appeared the next day on Meredith Vieira’s show.

Her memoir, “Not Fade Away,” came out earlier this month. The first-time author will be speaking at JCCs, bookstores and other venues across the country, including several in the Bay Area.

What’s her claim to fame? Nothing anyone would wish for.

Alexander has Usher syndrome type 3, a rare genetic mutation that is carried by roughly 1 in 95 Ashkenazi Jews (and 40 percent of the Finnish population). Though the harshest form of Usher renders infants blind and deaf at birth, type 3 takes its toll over time, gradually robbing its victims of their hearing and vision.

Last year Alexander was able to have a cochlear implant. Since the surgery, her hearing in that ear has improved significantly, she said recently by phone from New York.

But her vision — already down to a pinpoint view of the world — is worsening. “Right now I’m going through another transition,” she says. “One issue [the hearing] is on the back burner, another on the front burner.”

While Alexander is determined to promote public awareness of Usher syndrome, she is no smiling, passive poster child. She is a tough fighter.

Despite knowing since she was a young teen that someday she would likely be deaf and blind, Alexander has fiercely strived to live life independently, to its fullest.

She played soccer throughout her school years and participated in the Maccabi Games, the sports competition for Jewish teens. She excelled in high school academics and was fully engaged at Oakland’s Temple Sinai, where she had her bat mitzvah and went to Hebrew school. She attended the extracurricular program Midrasha and says “Judaism was a huge part of my upbringing.”

Rebecca Alexander with her companion dog, Olive photo/john blaustein

She can meet the rigors of military-level fitness tests and has completed marathons, including a weeklong California bike ride for AIDS. The ride also reflects her desire to help others: At 15, Alexander began delivering meals for Project Open Hand after an HIV-positive man spoke at her synagogue.

She writes that her father, attorney David Alexander, is a firm believer in tzedakah and an enduring role model.

Her mother, Terry Pink Alexander, also has played a large role as both an effective advocate for her daughter and a pillar of support. The executive director of the Judah L. Magnes Museum in Berkeley from 2005 to 2008, Terry Alexander notes that “before she loses her remaining sight and hearing, Rebecca is determined to do all that she can to help empower others with any type of challenge, whether physical, emotional or relationship-related.”

Besides dealing with the relentless loss of hearing and sight, Rebecca Alexander has navigated other major setbacks. Her parents’ divorce, she writes, shattered the “idyllic” childhood she and her two brothers enjoyed. A fall from a second-story window after a night of drunken partying broke “nearly every limb” in her body, resulting in acutely painful months of rehab and delaying her start in college. Her twin brother — always the life of the party and at the top of his class — began struggling with mental illness when he was in law school and now lives out of his car.

Though her accomplishments, persistence and drive are truly inspiring, Alexander says she did not set out to write an “inspirational” memoir. In fact, she put off a literary agent when first contacted several years ago. But after a more recent push, she was ready.

Writing the memoir was very difficult, she says, but “definitely cathartic.”

“More than anything,” Alexander says, “I wrote this book because I think it’s so important for people to know they’re not alone.” Citing her own experience when she was struggling and feeling isolated due to her disabilities, she says, “There’s no better feeling than being able to relate to someone [with similar problems]. … I think that’s the way that we’re generally moved to take action.”

And the more open you are about your needs and limitations, she explains, the more comfortable others are in helping you. A number of clients in her practice are deaf or disabled.

Alexander still lives on her own in an apartment, with a companion dog that she adores. She walks with a cane. She moved to New York to prove she could live independently in an urban environment, where she gets around without a car after giving up driving a few years ago.

With her book tour just starting, Alexander expects to be accompanied by her best friend, Caroline, or by her mother.

She is extremely close with her parents, brothers and extended family.

Her older brother, Peter, an NBC News correspondent who interviewed her on “Today,” called his sister “the most impressive person I know.”

Her mother is equally effusive in her praise, stating, “Rebecca continues to triumph over her disabilities. She is truly my hero!”

Sometimes her parents are so proactive on her behalf that “it’s embarrassing,” Alexander says.

Yet even she is sometimes blown away by her accomplishments. “It’s kind of hard to believe. I keep thinking things will slow down, but they haven’t yet.”

“Not Fade Away: A Memoir of Senses Lost and Found”
by Rebecca Alexander with Sascha Alper (Gotham, 320 pages, $27)

Rebecca Alexander will speak at 7 p.m. Monday, Sept. 22 at Book Passage, 51 Tamal Vista Blvd., Corte Madera; 7 p.m. Sept. 29 at Head-Royce School, 4315 Lincoln Ave., Oakland; and 7 p.m. Sept. 30 at Books Inc., 1760 Fourth St., Berkeley. www.rebalexander.com

Liz Harris

Liz Harris is a J. contributor. She was J.'s culture editor from 2012-2018.