Sep 10, 2014

Ready for the Spotlight: Rebecca Alexander Shares Her Story of Living with Usher Syndrome

Beacon Stories

“…the best thing is to reach out and network, and access all the resources. The more invested you are in what’s out there, the more you get back.”

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Photo of Rebecca Alexander

Five years ago, when Rebecca Alexanderappeared on The Today Show with her brother Peter, she already had quite a tale to share. Nearing 30, she was single, living in New York City and working as a full-time psychotherapist and part-time spinning instructor. She also had Usher syndrome, a disorder that causes both hearing and vision loss—and which she’d mostly kept under wraps.

After the show, “a literary agent asked about writing a book,” recalls Rebecca, whose parents, Terry and David, are national trustees of the Foundation Fighting Blindness (FFB). “And I thought, ‘I don’t know what to write about, or that anyone would care.’”

She needn’t have worried. The just-published memoir Not Fade Away proves Rebecca has plenty to write about. And next week, she’ll launch a book tour by appearing on three TV programs: The Today Show (Sept. 15); The Meredith Vieira Show (Sept. 16); and MSNBC’s Morning Joe (Sept. 17). Fortunately, I was able to chat with her earlier this week.

How have you changed since that first Today Show appearance?
You don’t know how you’re going to respond to more vision or hearing loss until you’re faced with it head-on. And, like others, I struggled with showing what might be perceived as weakness. So the big difference is, I finally realized not using a cane was working against me. Using it, I quickly found that a) I walk a lot faster and more confidently and b) people sort of get out of my way.

Being single, especially in New York, it’s not easy to use a cane and feel like, “OK, this will encourage someone to ask me on a date.” But I’ve found that the more comfortable and confident I’ve become with my own circumstances, the more comfortable people are around me.

This morning, for instance, I had an intense fitness class with 12 people. At the end, I said, “You know it’s a great workout when your hearing aids start to turn off because you’re sweating so much.” Everybody laughed, because they know I have a hearing aid and a Cochlear implant, and it’s just part of me. It feels good to be in an environment where I’m not hiding anything.

What is your eyesight like?
I have donut vision. I have my outermost periphery still, which you can’t really use. And out of 180 degrees, I have about 10 degrees of central vision.

You write that your energy is focused mostly on day-to-day living, and that you allow others who support you to focus on research advancements.
With Usher syndrome, retinitis pigmentosa or any other retinal disease, if you were to worry constantly about going completely blind, or blind and deaf, it would be too overwhelming. You have to deal with what’s in front of you.

Years ago, before coming to terms with this, I had an eating disorder and was trying to be perfect, physically and academically, so nobody would sense there was anything, quote, wrong with me. If I knew then I was going to be as visual- and hearing-impaired as I am now, I would have thought, “Oh, my God, I’d rather die.”

And, yet, I’m 20 times happier now than I was then. In having made it through each stage of hearing and vision loss, I now know that, whatever the next stage is, I’ll make it work.

That’s because I have support—not only family and friends, but a network, like those I’ve met through FFB. It’s very difficult to get a diagnosis like this and, all of a sudden, throw yourself into the world of the deaf and blind. But the best thing is to reach out and network, and access all the resources. The more invested you are in what’s out there, the more you get back.

Dr. Jacque Duncan, your longtime ophthalmologist, is also chair of FFB’s Scientific Advisory Board. What do you find special about her?
I call her Jacque, for crying out loud! She’s like a member of the family. She knows the science inside-out, but she’s also very compassionate. Years ago, when her team got this new retina-testing technology, they were learning how to use it, so I had to be tested more times than usual. She profusely apologized. I said, “You know what? It’s not a problem.” I was so grateful that they now have this technology, and she wanted to get it right. She has been so giving and caring, I was happy to help further the research.