Climbing Mount Kilimanjaro with Usher’s Syndrome


It’s 10:30 on a Saturday morning, and Michael Jackson is blaring from the speakers in an indoor-cycling studio at an Equinox gym in New York City, where a sweaty crush of spandex-clad women and men is pedaling furiously.

“Here we go! Pick it up!” the perky brunette instructor yells. One minute she’s standing on the pedals, scanning the room and shouting encouragement to the class; the next, she’s off her bike, winding her way between the rows of cyclists, making sure everyone is OK.

This looks like any other cycling class—except it’s not. The instructor, Rebecca Alexander, 36, has a rare genetic disease that’s causing her to go blind and deaf at the same time. Today, what she sees in front of her is the equivalent of what you can see through a straw. Even that tiny peephole is slowly closing with every passing year. Her hearing loss is so severe that she has a hearing aid in one ear and a cochlear implant, an electronic device that helps restore sound, in the other.

Monique Dash, Rebecca’s manager at Equinox, didn’t know about Rebecca’s health challenges for years. Even when she did find out, she couldn’t fully comprehend what Rebecca was dealing with. It wasn’t until she read Rebecca’s memoir, Not Fade Away, last October that she understood. “The book made me cry,” Monique says. “Rebecca has never, ever complained about her disabilities. Ever, ever.”

Complaining is most definitely not Rebecca’s style. “I’ve never had a ‘why me?’ moment,” she says. “Bad things happen to lots of people. We talk about overcoming challenges, but it’s really about living with them and getting through them.”

Besides, Rebecca says, instead of focusing on what she doesn’t have, it makes much more sense to focus on what she does have. And by her own account, she has plenty to be grateful for: a close-knit family; great friends; a thriving psycho­therapy practice; her beloved dog and faith­ful companion, Olive; and the cycling classes she teaches. Rebecca has a “deep love” for fitness, which has gotten her through the difficult times. “Working out is such a huge part of my emotional well-being,” she says. “As long as my body is strong, I feel strong.”

A Series of Setbacks
Rebecca suffers from Usher’s syndrome type 3, a condition that causes progressive vision and hearing loss. By mid-adulthood, those with the disease can be legally blind and completely deaf.

There is no cure.
It wasn’t until Rebecca was 12 and began having trouble seeing the blackboard at school in San Francisco that her parents realized something was wrong. She was diagnosed with retinitis pigmentosa, a disease in which vision deteriorates slowly. (At the time, Usher’s syndrome type 3 was unknown.) Doctors said Rebecca would probably lose her sight completely by the time she was 30. “All I remember thinking is that I just wanted her to get through high school,” says her dad, David. “Then we would deal with what we needed to deal with.”

Rebecca says that as a kid, the idea of going blind someday didn’t really sink in. Instead, she focused on school, her friends and sports. She tried out for the soccer team, but her vision problems kept her from playing varsity. “I knew it wasn’t meant to be,” she says. “But I loved being competitive and run­ning down the field.”

Fitness soon became a critical tool for her survival. One night in the summer of 1997, Rebecca, then 18, was out with friends and had a little too much to drink. It was late when she got home. In her bedroom, she lost her balance and fell backward out the big windows, plummeting 27 feet onto a patio and breaking just about every bone in her body. She was in surgery for 12 hours while doctors took bone from her hip to rebuild her left hand and foot. The pain was excruciating. “I was in shock,” Rebecca says. “Landing on the patio felt like being in an explosion.”

She underwent several more surgeries to repair her broken bones and then spent months in physical therapy. By January, Rebecca was well enough to start college, where regular sessions on an elliptical and a stationary bike and lifting weights helped rebuild her mus­cles. At the same time, her vision continued to slowly decline, and her hearing, which she’d been having some problems with, seemed to be getting worse (doctors blamed it on infections she’d had as a child). “I realized that I might not be able to control my eyes and ears but that I did have control over the rest of my body,” Rebecca says. “If I worked hard at being fit, I could be as strong as anyone else.”

Pushing Her Limits
In the spring of 1999, Rebecca suddenly began experiencing a relentless loud ringing in her ears. She went to the University of Michigan Medical Center, where doctors did extensive testing to try to determine what was wrong. Finally, they broke the bad news: She had Usher’s syndrome type 3.

When they told her that she was going to lose her hearing as well as her eyesight, Rebecca was stunned. “I just couldn’t grasp it,” she says. “At that point I was still functioning fairly well, and it was hard to believe what was coming.” But as her hearing and vision deteriorated, Rebecca knew she had to accept the truth. “The best way to deal with it was to focus on the things I could take charge of. So I started waking up early to fit in my workouts, and I studied really hard. I might be going blind and deaf, but I was going to get tougher and smarter, too.”

An admitted overachiever, Rebecca decided to pursue a dual master’s degree in public health and social work at Columbia University. “I knew I wanted to be in a helping profession,” she says. Rebecca was also determined to land a job as a Spinning instructor to help make money for school. She had added Spinning to her workout repertoire and loved it. “The parts of me that didn’t work well seemed to disappear as I pedaled,” she says in her memoir. “I had recaptured that feeling of being fully alive in my body.”

To qualify as an instructor, Rebecca had to audition. Because of her disabilities, she worked extra hard to prepare, practicing for weeks. She got the job. “It was empowering for her,” says Alan Pinto, a former boyfriend who is now a close friend. “She loves being in front of a class, making people feel strong.”

Around that same time, Rebecca met her BFF, Caroline Kaczor, who was working at the gym. Caroline is the kind of friend who takes Rebecca grocery shopping, who helps organize her apartment so she can easily find things and who will drop everything to help her, as she did one evening, when Rebecca got stuck “somewhere on Madison Avenue” after her cane, which she uses to help navigate at night, got snagged in a grate. “Caroline doesn’t treat me differently for having disabilities,” Rebecca says. “It’s just a part of who I am for her.”

By May 2013, Rebecca’s hearing had become so bad that she decided to get a cochlear implant. Adjusting to the implant was not easy: Everything sounds different at first, and it takes months for a patient’s brain to learn to decipher what it’s hearing. Rebecca also suffered from vertigo because the implant threw off her balance. At times it was easier for her to crawl than to walk.

When she recovered from the vertigo months later, Rebecca needed something to make her feel strong again. So when one of her students suggested that she try the Fhitting Room, a boutique boot-camp workout, she did. “The energy there is incredible,” she says. “There is so much support from the instructors and my classmates. They know about my disabilities, and they encourage me.” Her father says, “That workout is like oxygen to her.”

Rebecca also began doing extreme races like the Civilian Military Combine, which consists of a functional fitness challenge as well as a military-style obstacle course, and is dedicated to supporting the U.S. armed forces, veterans and their families. “The races are about taking yourself out of your comfort zone,” their cofounder, Keith Gornish, says. “Rebecca runs right up to the wave pools, rips out her hearing aid [which isn’t waterproof] and hits the water. She’s there to kick ass.”

Coming Out on Top
Rebecca’s greatest physical feat is yet to come. This July, she’s planning to climb Mount Kilimanjaro in Africa with her stepmom, Polly, and her half-sister, Lauren. To train for the 19,000-foot climb, she has scheduled a series of smaller hikes this year, including her favorite, up Half Dome in Yosemite National Park. “Hiking has always felt like meditating to me,” Rebecca says. “It allows you to be present in nature while using both physical and psychological strength. And when you finally do get there, you feel a tremendous sense of accomplishment and fulfillment.”

Her family has no doubt she can do it. Six years ago, Rebecca and her mom, Terry, took a trip to Peru. Terry got altitude sickness, and Rebecca ended up doing the arduous hike up the Inca Trail without her. “I was worried,” Terry admits, but she didn’t have to be. Rebecca was among the first of the group to make it to the summit. “She looked as if she owned the world,” Terry said.

“I think Rebecca recognizes there’s no time for sitting on the sidelines,” her brother Peter says. “Her condition will take away life as most of us experience it, so she has to witness those sights and sounds and seize those moments.”

Rebecca sometimes wonders what she’ll be able to see and hear by July, when she’s on top of Kilimanjaro. But however bad her eyesight or hearing may be, she knows that she’ll embrace the experience and treasure it just like she does the sight of an expanse of sky, something she feels lucky to have seen when she was younger. “It means so much more to me to savor a view now because I might not be able to see it in the future,” Rebecca says. “My memory of what it feels like to be in the moment is so vivid.”