When Kyle Bryant was 17, he was diagnosed with a degenerative neuromuscular disease that doctors predicted would one day put him in a wheelchair. Worse, they said, his genetic illness, Friedreich’s ataxia, might send him to an early grave.
Bryant could’ve been paralyzed with fear. Instead he taught himself how to ride a recumbent bike and, at 25, embarked on a six-week, 2,500-mile journey from San Diego to Memphis.
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Twelve years later, he has written about that monumental trip in Shifting Into High Gear: One Man’s Grave Diagnosis and The Epic Bike Ride That Taught Him What Matters (Health Communications Inc., 2019). Bryant will read from his memoir at Exton’s Chester County Library on June 11.
During the ride, Bryant often found himself unexpectedly on roads he hadn’t mapped out in advance, yet he wound up getting to his next destination more quickly and easily. The experience offered him a powerful metaphor for how he might live with a life-altering disease: Instead of committing to an angry route through a life of hopelessness or despair, he recognized that life offers imminent possibilities, many of which can lead to hope and happiness.
“It took me a long time to see myself as separate from my disease,” says Bryant, who has used a wheelchair since 2011. “This was an important revelation for me. My bike ride helped me see that."
In the years since his trek, Bryant, now 37, moved from his childhood home in Grass Valley, Calif., to Exton and is now a spokesman for the Friedreich’s Ataxia Research Alliance. He is also the director and founder of its rideATAXIA Program, six annual bike rides that raise $1.2 million a year for FA research. And he cohosts a weekly podcast, “Two Disabled Dudes," from a closet-turned-recording-studio in his apartment.
“For three years, the working title of my book was Moderation is the Enemy because I don’t want to leave anything on the table in my life," says Bryant, who bikes 6 miles to and from work.
He was clumsy as a kid. He tripped often and spent a lot of time in ERs, getting stitches. But things got strange when he started playing baseball in his teens.
“My throws were going off target and I was unable to run down a fly-ball in the outfield,” Bryant says. “At 14, my skills shouldn’t have been going downhill. That made [my family] start to look for answers.”
They came three years later when doctors found too many repeats of a particular DNA sequence in Bryant’s FXN gene, which is responsible for producing a protein, frataxin, that helps cells make energy. In people with FA, the body doesn’t produce enough frataxin for the nerve, muscle, and heart cells to function properly. As a result, balance, dexterity, and coordination are thrown off. As the disease progresses, symptoms can also include vision and hearing loss as well as heart disease. (Speech also becomes slurred. By the time Bryant was 17, people often thought he was drunk — he was even detained by police once, because of it.)
The diagnosis was devastating for Bryant, who took pride in his athleticism.
“I felt like isolating myself,” says Bryant. “Running from my fears was my impulse.”
He moved forward anyway. He graduated from the University of California at Davis with a civil-engineering degree, landed a gig at an international firm, bought a house, and figured he’d eventually have a wife and 2.3 kids. And if he’d one day have to coach his son’s baseball team from a wheelchair, that would be OK.
Then he came upon an online ad for a recumbent bike — a three-wheeled wonder that would allow him to sit back, pedal, and traverse the world at his own pace. He bought one the very next day and his initial ride was a revelation: For the first time in years, he didn’t need to rely on his faulty balance to get from point A to point B.
On his own, "I could hardly walk a block,” he says. But on the bike, “I could go 25 miles.”
Bryant wanted to ride all day, every day. Where was the farthest he could go? “Cross-country” seemed to be the answer. And his parents would accompany him — his dad, Mike, pedaling alongside him on a two-wheeler, and his mom, Diane, driving an SUV with attached sleeper.
He had many epiphanies on the road. Among them: to accept his fate while not letting it define his future (which would be like “being defined by the color of my eyes,” he says.) To trust his gut and listen to his body — if he has to stop, he stops. And to partake in clinical trials for treatment of FA, which might help researchers find a cure for him and others.
“My vision for my future is different now than it was when I was 15,” he says. “The biggest thing I had to learn was that I couldn’t disregard my FA and move on. I had to include it — and still figure out a way to live my best life.”