Rebecca's story: Woman who will soon go blind and deaf shares story of loss, hope

Rebecca Alexander. (Family photo)

ARLINGTON, Va. (WJLA) – Imagine being told you would go deaf and blind by the age of 30—that’s exactly the diagnosis Rebecca Alexander got as a teenager.

Alexander, ABC 7 News Anchor Alison Starling’s sister-in-law, is now 35 and traveling the country, including the D.C. area, telling her story of loss, strength and hope.

Alexander is on a mission to teach Starling’s baby daughter, Ava, sign language as soon as possible.

“It would be wonderful, as Ava grows up, for me to be able to teach her that language, so that we can communicate with each other,” she said.

For now, Alexander can still see and hear Ava, but that won’t always be the case; she has a rare genetic disorder called Usher Syndrome type III. Alexander started losing her vision and hearing as a teenager, and learned she would be deaf and blind by age 30.

“There is no look to a disability,” she said. “Nobody would ever look at me and say, ‘Oh, she must be going deaf and blind,’ and so, it’s so important to say, ‘Yes, this is what going deaf and blind can look like.’”

Now 35, Alexander’s view of the world is narrowing.

“A normally sighted person sees 180 degrees when looking straight ahead,” she said. “I have just about 10 degrees of vision.”

Alexander recently received a cochlear implant, a surgically implanted electronic device that has helped improve her hearing loss. She has also learned sign language and tactile sign, in order to communicate with others who are blind and deaf. It hasn’t been easy.

“When I allowed myself to really experience my emotions and my sadness and to cry when I needed to, it made it that much easier for me to experience the emotions of happiness, the emotions of feeling fulfilled, of feeling satisfied,” she said.

Alexander tackles life with exuberance, joy and strength. She is an extreme athlete, leaving others in her dust.

“It is so empowering; it makes me feel so strong when my vision and hearing are limited. It doesn’t affect my ability to work my endurance, strength or body overall,” she said.

Rebecca says she doesn’t let herself think about the day she will be completely deaf and blind, instead focusing on the now. She is speaking out about her condition to help others dealing with similar issues.

Starling can only hope Ava will learn many life lessons from her aunt Rebecca.

“There is nothing more important than living where you are right now with what you have,” Alexander said. “You can prepare for the future, but you have to be present.”

Alexander has already signed on for her next big challenge—to climb Mount Kilimanjaro next summer. Until then, she is traveling and telling her personal story in her new book, “Not Fade Away: A Memoir of Senses Lost and Found.”

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