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How Fitness Helped This Woman Cope with Going Blind and Deaf

Rebecca Alexander was just 12 years old when she was told that she'd completely lose her vision by the time she was an adult. After she had trouble seeing the chalkboard in class, her parents decided to take her in for a series of tests. She was diagnosed with retinitis pigmentosa (RP), a genetic disorder of the eyes that causes vision impairment. 

She continued on, not understanding the magnitude of what it would mean to lose her eyesight by the age of 30. "It's nearly impossible for a 12-year-old who can pretty much see to understand, let alone try to comprehend what it would mean to be losing my vision," Alexander said on Megyn Kelly TODAY while promoting her new book, Not Fade Away.

A few years later, Alexander also started experiencing hearing loss. By the time high school rolled around, she was wearing hearing aids—something she felt pretty self-conscious about, she says.

Like most teenage girls, Alexander did everything she could to fit in as much as possible. But a part of her always felt like she couldn't truly be herself. "I just felt like if I was able to make myself look as physically perfect as possible, and be as academically perfect as possible, then no one would know that there's anything 'wrong' with me," Alexander tells Shape.

In an effort to be just another girl at school, she would go to parties and have the occasional beer or two with friends. One night, however, right before she was about to start her freshman year at the University of Michigan, she had more to drink than usual, and her twin brother had to carry her home. "I woke up in the middle of the night, trying to walk to the bathroom when I stepped out of my bedroom window instead," says Alexander. "I fell 27 feet to the stone patio below and broke nearly every bone in my body." (Related: How I Became a Professional Dancer As a Paraplegic)

"I had to stay in the hospital for a month," she says. "I had shattered my left foot and part of my left hand; I broke my right hand and broke my back. I ended up being in a wheelchair for four months, had countless surgeries, and had to totally rehabilitate my body." Doctors told her she'd never be able to walk normally again. (Related: What People Don't Know About Staying Fit In a Wheelchair)

During the next year, Alexander says she had to put herself back together, both physically and emotionally. "I had to come to terms with the fact that not only was I going to be blind, but that I would also be in pain for the rest of my life," she says. 

Thankfully, after undergoing some serious physical therapy, she was able to gain most of her mobility back—proving her doctors wrong. "My leg still hurts if I put too much pressure on it for too long, but for the most part, my body is pretty much back to normal today," she says. 

At 19 years old and a freshman in college, Alexander was just starting to adjust to her new normal. But one night she woke up after hearing a sharp ringing in her ears, loud enough to cause her to panic. After a trip to the doctor and a series of tests, she was diagnosed with Usher syndrome type 3A, an even rarer disorder that causes you to progressively lose your vision and hearing. 

At this point, she says she felt as though she'd lost complete control of her life. "I needed to find some control in such a chaotic situation and started wrestling with anorexia and bulimia," she admits. "I started using exercise as a coping mechanism and was spending four to six hours in the gym a day. I also began seriously restricting my calories and then overeating and making myself throw up."

It was soon after graduating from college that Alexander says she realized how much her health was deteriorating, so she decided to check herself into rehab for disordered eating. "The therapy made me ask myself what I was using the excessive working out and calorie restriction for, and I realized that it was my diagnosis coupled with everything else that had happened to my body," she says. "Over the next three years, I came to a point where I learned how to focus on the things my body could do versus what it looked like and what it couldn't do."

When Alexander started grad school at Columbia, she began safely using fitness and healthy eating as a way to take care of her body. "I really got into spinning during that time and started teaching classes," she says. "What started as a way to get a free gym membership eventually began a passion. So I got my certification and went on to become one of the first ever SoulCycle instructors when it launched."

Over the years, she's gotten into CrossFit and HIIT. Once she realized everything her body was capable of doing, she started delving into more extreme sports. "I've done eight civilian military combines, hiked Mount Kilimanjaro, and swum from Alcatraz to shore," she says. "These are all things that require you to be fully present, especially when you don't have two of your senses. You really have to be in the moment and that focus is what reminds me of what I can do, what I am capable of." (Related: Mandy Moore Hiked to the Top of Mount Kilimanjaro Over Spring Break)

Of course, these feats also present unique challenges. "When I climbed Kilimanjaro, for instance, one of the biggest obstacles I faced was that the higher we got up in altitude, every time I would blink, I would get a flash of light as though someone was shining a torch in my face," she says. "So I would try to hike for as long as I could with my eyes wide open so that didn't happen." 

Her hearing aids can be debilitating at times, too. "At the time I had one hearing aid and one cochlear implant," she says. "My implant batteries would keep dying and we would have to stop and charge them over and over again until eventually, they would barely last because of the altitude. But one of the guides assigned to me was amazing and taught me bits of Swahili and I taught him sign language. So once I stopped wearing the implant, he would use the signs that I taught him to help tell me where we were going or what I should be prepared for next." (Related: I Broke My Neck In the Gym and It Changed Everything I Thought I Knew About Fitness)

Today, Alexander is almost completely blind and deaf but feel stronger than ever, both physically and mentally. "So many people tend to think that life is the pursuit of happiness," she says. "But what I've learned through my journey is that life is suffering and if we're able to find comfort within the discomfort of that, we've hit the nail on the head."

"For me, I now know that pain is always going to be a part of my life," she continues. "But by being physically active, I've been able to strengthen other muscles to support the areas of my body that have to sustain significant injuries. I also truly believe that by eating the foods that are good for my eyes, I'm still able to see more than my doctors thought I would at my age." 

As for how she's able to stay so positive and strong in the face of so much adversity, she says this: "While you need to have outlets like being physically active to relieve the anxiety and stress that comes with adversity, it's also important to talk about what you're going through. I allow myself to experience my emotions and mourn my losses. I cry when I need to and feel scared, and experience a range of emotions. But by talking about them with a therapist, friend, or family member, I don't use them as an excuse to not be the best version of myself and I don't take them out on other people. Because of that, even though I have Usher syndrome, I'm in a much better place emotionally than most other people who still have all of their senses." 

Watch Rebecca Alexander reflect on her inspiring journey in this interview with Megyn Kelly below:

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