When Rebecca Alexander was in college, she was told that she would be completely blind and deaf by the time she turned 30 – and her world went black.
One winter morning in 1999, the then 19-year-old University of Michigan student, who was majoring in American Culture, woke up to ringing in her ears that sounded like she had just left a rock concert.
After two weeks and no improvement, she knew something was seriously wrong and decided it was time to go to the doctor.
“I went to the doctor at school and was told I had Usher syndrome,” Alexander, now a psychotherapist in New York City, tells PEOPLE. “I was going blind and deaf.”
Although shocked and devastated to learn she had a condition that affects both hearing and vision, this wasn’t the first time Alexander had received a heartbreaking diagnosis.
When Alexander was 12, she had trouble seeing words on her classroom’s blackboard, and after numerous eye tests, she was diagnosed with retinitis pigmentosa, a genetic disorder that leads to blindness.
“But here I was in college, finding out that I also was going deaf,” she says. “It was pretty startling. If I had known then how hard it would be now, I would have rather wanted to die.”
After reeling with her prognosis, she says she developed an eating disorder. “I was being told about these two things that were totally out of my control, so I tried to find something I could control,” she says.
Finding the Light
Throughout her 20s, Alexander thought she only had a few years left to see and hear the world, but now, at 36 years old, she isn’t living in the dark.
But her condition has left her with serious side effects. While most people can see 180 degrees when they look ahead, she can see a mere 10.
“People say, “Oh my God, you can only see 10 degrees,” and I say, “Oh my God, I can’t believe I still have 10 degrees of vision. I am very happy.”
Still, she hasn’t let her medical condition keep her from attacking life head on.
“In our 20s, we are just trying to figure ourselves out. We are figuring out life, we are dating, trying to be active and really just trying to understand who we are and where our lives are going,” she says. “I didn’t really have the mindfulness with my body at that time.”
Alexander moved to New York, got two masters degrees from Columbia University and started competing in extreme athletic races.
She even drove herself to her first mobility training session on how to use a cane. After the lesson, she threw it in her junk drawer. But then one night, five years ago, she walked straight into a steel door on her way home from work.
“It was very scary,” she says. “I walked right into it as if nothing was in front of me.”
The cane then came out the drawer.
“The first six, seven, eight, nine times that I used it, I would cross the street crying,” says Alexander. “But the only way that I could really accept or come to terms with it was by actually going through the experience of loss and feeling exposed and so vulnerable.”
Alexander wants people to know that this is what disability can look like.
She’s noticed people staring at her as she walks with a cane. And she proudly exposes her cochlear implant in her right ear, which has improved her hearing from 26 percent to around 94 percent.
“It can be a little surreal, but I want to be out there,” says Alexander, who also wrote a memoir about her journey titled, Not Fade Away: A Memoir of Senses Lost and Found, which is being released in paperback on Sept. 15.
Alexander wakes up early every morning, takes her miniature goldendoodle to Central Park, works out and sees her patients from around noon to 9:30 p.m.
“It’s a long day,” she says, laughing. “And then I do it all over again.”
The Hike of Her Life
Now that Alexander had overcome such amazing odds, she was ready for her next big challenge.
“I always wanted to do a big hike, and my stepmom and I have been talking about doing this hike for a long time until we finally decided it’s now or never,” she says about her decision to climb Mount Kilimanjaro. Alexander grew up near Yosemite and hiking was a big part of her life as a kid.
So on July 11, Alexander, along with her stepmom and sister, left for their epic trip that she calls “the hardest thing I have ever done.”
Even though she couldn’t see her feet in front of her, Alexander trekked for eight long days. And she had the full experience – no bathing, sleeping in a tent in five-degree weather and even having her implant run out of batteries almost every hour.
“It was challenging, but it made me that much more eager to do it,” she says. “I didn t want to feel like this was the only reason I wouldn t be able to climb it.”
After climbing Africa’s highest peak, Alexander came back down with so much pride.
“You feel really miserable throughout a lot of the hike,” she says. “There is no way to prepare for it. That made me realize that we live with so much discomfort in our lives, and for some reason, when we feel uncomfortable, we feel like we are not going to get through it, and we can’t see what the other side will look like.
“The most memorable things I have done are not the things I loved – they have really been the things I have struggled through.”
“Life is very much about struggling and being challenged and not necessarily being certain of how you’re going to get to where it is that you want to go,” she adds. “It’s about having to trust that you can get there as long as you can take it step by step.
“We have a tendency to really live in the black and white, good or bad, right or wrong – and life isn’t like that. Life is very gray. Life is very uncertain. My life is certainly uncertain. It’s amazing what we think we are not capable of doing.”