Stargardt disease: Josh Bennett’s “race of truth”

You might not consider time trial cycling to be the right option for a legally blind man, but you’d be wrong. Josh Bennett illustrates how determination and grit can open even the most unexpected doors.

Josh Bennett, a competitive cyclist, racing against the clock in a time trial.

Josh Bennett, a competitive cyclist, racing against the clock in a time trial.

Josh Bennett is a remarkable athlete. The 38-year-old cyclist is not only wicked-fast during his time trial cycling races, he is also a student and teacher of Muay Thai boxing. Bennett’s secret sauce for his ongoing athletic prowess may very well stem from what he once considered the destroyer of dreams: Stargardt disease, the inherited retinal disease (IRD) responsible for the loss of Bennett’s central vision, and the condition that stripped Bennett of the military career he always thought he would have.

The Dashing of a Dream
Stargardt disease is the most common form of juvenile macular degeneration (JMD). According to the National Institutes of Health, it affects between 1 in 8,000 to 10,000 people. Symptoms usually present in late childhood to early adulthood, like they did for Bennett.

“What he decided not to accept, however, was the debilitating notion that vision loss had rendered his life incomplete.”

As it does for so many, the disease destroyed Bennett’s central vision but left his peripheral vision intact. It also stripped the young man of his hope to serve in the special forces, as a Navy Seal. “I did well on the military’s written exam, so essentially I could have whatever job I wanted,” recalls Bennett. “When I went in to the office, however, the Navy said, ‘Nope. You don’t pass the eye exam.’”

Stunned, Bennett refused to accept the verdict. “I was like, ‘Come on, just put me behind a desk. Or, come to the gun range with me, or the pool with me—you pick the place! I will prove to you that I can do it,’” he pleaded. The military representative apologized and told the young man that military policies were fixed. Bennett left the office, crushed. “I am not a normal blind person and I’m not a normal sighted person,” he thought to himself. Believing that he existed in a category of his own, and unwilling to take “no” for an answer, he tried to join the military another two times over the next decade. He was rejected each time.


Bennett prepares to teach a Muay Thai boxing class.

Bennett prepares to teach a Muay Thai boxing class.

Rebuilding a Life After Diagnosis
To say that Josh Bennett accepted his diagnosis is true. What he decided not to accept, however, was the debilitating notion that vision loss had rendered his life incomplete. Certainly, it changed his life’s trajectory. While he didn’t become a Navy Seal, he married, raised two children, and even got a driver’s license by using bioptic telescopic glasses. He also stayed in top athletic condition to push himself beyond the norm—as a legally blind Muay Thai boxer and time trial cyclist.

Bennett says that competitive cycling isn’t as dangerous as it sounds. “It’s relatively safe for a person with my condition,” he says. “You’ll rarely run into another competitor because you have to be at least 12 meters behind any other cyclists. On top of that, the crew will have gone through the course and removed any debris,” says Bennett. When the timekeeper says “Go!,” and the holder gives his bike a push off to start a time trial, Bennett hunkers down, digs in, and demands that his body give everything to the bike.

They call time trial cycling the “Race of Truth” because it’s just the racer and the clock. There are no excuses. The time of your race is the sole reflection of your own ability and effort. It seems a fitting sport for Bennett, who has used strength, endurance, and grit to shape the life he’s created for himself, even if it’s not the one he’s always expected. Truth be told, however, on any given day of the week in the boxing ring or on the race course, you can still see the determined spirit of a young, Navy-bound boy, alive and well in Joshua Bennett.


Share this story!

You might also be interested in:


 

Becky Andrews, diagnosed with retinitis pigmentosa at 18, found a new freedom in life when she decided to partner with a guide dog. Photo courtesy of Guide Dogs for the Blind. Read more

Disclaimer: The opinions and references found in this patient story belong to the author alone, and do not necessarily reflect the opinions of aSharedVision.com or Spark Therapeutics. Spark Therapeutics is not responsible for the accuracy of any of the information supplied by third-party sites referenced in this story.