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Going Blind and Deaf, One Woman Turns to Spinning

Rebecca Alexander

Faced with what Rebecca Alexander has gone through, most people couldn't be blamed for giving up on exercise. At age 12, Alexander found out she was going blind due to a rare genetic disorder. Then, at 18, she suffered a fall from a second-story window, and her formerly athletic body was confined to a wheelchair for five months. Soon after that, she learned she was losing her hearing as well.

But Alexander hasn’t let these obstacles slow her down: At 35, she’s a psychotherapist with two masters degrees, a spin instructor, and an endurance racer living in New York City. In her new book, Not Fade Away: a Memoir of Senses Lost and Found, Rebecca writes about handling her disability with courage and positivity. Here, she tells us more about how fitness helps her cope with her day-to-day reality and the important lessons that anyone can take away from her experiences.

Shape: What made you decide to write your memoir?
Rebecca Alexander (RA): Losing your vision and hearing is not an ordinary thing, but I think there are a lot of people who can relate to it. Reading about other people’s experiences has been extremely helpful in the process of coming to terms with my own issues. I’m a big fan of sharing life stories and experiences.

Shape: You learned you had Usher Syndrome Type III, which causes vision and hearing loss, at age 19. How did you initially cope with the diagnosis?
RA: At that point, I became eating disordered. I decided I was going to make myself as aesthetically perfect as I could, so no one could tell there was anything wrong me. I wanted to have control over all the things that I could, because of all the things I couldn’t control. And during my recovery from the accident, a lot of my muscles had atrophied, so I used exercise to rebuild my muscles, but then I started over-exercising like crazy during college. I would spend an hour or two at the gym on the treadmill or Stairmaster.

Shape: How did you begin to develop a healthier relationship with exercise?
RA: I started to recognize what types of exercise I liked. You don't need to work out for two to three hours—shorter increments of high intensity make a huge difference. And if I’m not having fun while I exercise, it's not going to last. I go to The Fhitting Room (a high intensity training studio in NYC) almost every day. I have an absolute blast there. I love that its such an encouraging and fun environment. Exercise for me is not just a physical thing, it’s a mental thing. It helps me relieve stress and take a lot of the power back when I feel disempowered by this disability.

Shape: What made you want to become a cycling instructor?
RA: I became an instructor while I was in graduate school at Columbia because I wanted a free gym membership—I’ve been teaching for about 11 years. One of the great things about teaching spinning is that I'm on a bike that goes nowhere, so I don't have to worry about falling over. And I don't have to worry about hearing the instructor, because I am the instructor. Disability or not, I've always been very peppy, so this is a way to channel that. It also helps me feel empowered. There's no better feeling than pumping up a class and encouraging people to work hard—not because you're yelling at them to do better, but because you're with with them in moment, focusing on how strong you feel and finding out what you're capable of. 

RELATED: 8 Benefits of High-Intensity Interval Training

Shape: What is your vision and hearing like today?
RA: I have cochlear implants in my right ear. In terms of my vision, a normal sighted person has 180 degrees periphery, and I have 10. Living in a city like New York is crazy. It’s the best place and worst place for someone like me. It’s totally accessible with public transportation, but there are people everywhere. I use my cane at night now, which was a big step. I focused so much time on being as able-bodied as I can be that to have to use a cane at night felt at first like I was giving in, but now I realize when I use my cane I walk faster, more confidently, and people get out of my way. It’s not exactly the best thing to have out when you’re going out on the town and you’re single, but then I’ll go with girlfriends and hold onto them for support.

Shape: How do you maintain a positive attitude?
RA: I think that people have a warped idea of what life’s supposed to be like—that we’re supposed to be on our A game, and be happy all the time—and that’s not life. Life can be tough sometimes. You can feel down, and that’s okay. You have to allow yourself to have that time. I will go home and cry if I have to, because I have to do that to move forward. But things happen to me so much, like running into something or someone, that if I stopped every time and cried over it, I’d never get anything done. You just have to keep on trucking.

Shape: What message do you want others to take away from Not Fade Away?
RA: That you’re not alone. We all have things we deal with. You’re much more resilient and capable than you give yourself credit for. And I think more than anything, it's important to live now. If I were to think about the fact that I’m going to be deaf and blind, why would I want to leave my house? It’s such an overwhelming thought. We need to take life for what it is now and do our best in the moment.

To learn more about Rebecca Alexander, please visit her website

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