BY PETER JONESSPECIAL TO WINGS OF HOPE
Imagine the odds.
Only about 100 people are diagnosed each year with Leber’s hereditary optic neuropathy, a rare genetic condition that causes fast and severe degeneration of central vision.
“You grow up wanting to win the lottery one day—and this is not the lottery you wanted to win. I mean, really?” said Jeremy Poincenot, who was diagnosed with Leber’s a decade ago.
Not that 29-year-old Poincenot is necessarily typical of those on the unlucky end of medical chance. Although legally blind, he is a better golfer than most people with full eyesight.
“I think losing my central vision—it’s weird to say it—was a great eye opener for me,” he said. “I had so much at 19 and I took a lot of it for granted. Losing my central vision has made me thankful for the peripheral vision I have. It made me thankful for the amazing family I have.”
One needs look no further than Poincenot’s golf game for a sense of that. With help from his father, the athlete can play some of the toughest courses in the world with his eyes closed—and in his case, that is no hyperbole.
In the last 10 years, the golfer has won seven national championships, as well as the Australian Blind Open and two World Blind Championships. Since becoming a motivational speaker, he has been featured on ABC’s 20/20, CNN, ESPN and MTV. Just two years after losing his sight, he was named Challenged Athlete of the Year by the San Diego Hall of Champions.
“My dad is my guide. He lines me up with every shot. He does all the visual work,” Poincenot explained. “I get to share the experience with my dad. It’s interdependence at its finest. When we make a birdie, I pick the ball out of the hole and we high-five together. It’s a team sport.”
Poincenot will tell his story at An Evening of Hope, a benefit for Wings of Hope for Pancreatic Cancer Research, on Saturday, Sept. 28, at Glenmoor Country Club, 110 Glenmoor Drive, in Cherry Hills Village. The fundraiser will include a cocktail reception and an opportunity to meet the speaker.
“What remains universal is the hope that people have in whatever challenge, hardship or difficulty they’re facing,” the speaker said of his message.
Golf is almost literally in Poincenot’s DNA. Raised in the golf mecca of southern California, his parents met while they both had careers connected to the sport.
“I played every Sunday since I was 12 with my dad. It was our bonding time,” the golfer said. “I absolutely love the game because it’s something you can’t perfect—I also hate it for the same reason. I’m obsessed with the game. What can I say?”
Potentially losing his knack with a golf club was one of his first worries when the then-student at San Diego State University began squinting at signs one day as he walked through campus. He met with specialists when the standard explanations of the doctors did not seem to fit.
“I thought I just needed glasses,” he said.
Although a brain tumor and multiple sclerosis were both eliminated as potential diagnoses, the ophthalmologists remained dumbfounded until Poincenot’s mother came across the words “Leber’s hereditary optic neuropathy” in one of her many exhaustive internet searches.
“My mom was doing tons and tons of research and told the doctors about it,” he explained. “They were unsure of it, but she wound up being right.”
As it turned out, a great uncle on his mother’s side likely suffered from undiagnosed Leber’s, a disorder that is passed down only through the mother.
“My sight is very similar to a doughnut. I’m missing the big hole,” the golfer said.
Although Poincenot went through his periods of depression and self-pity, he eventually learned an important lesson from a close friend who had registered for the same college courses in hopes of helping his newly-handicapped buddy find his way around—academically and otherwise.
One day after Poincenot apologized for being a burden, he was surprised when his friend countered that Poincenot had not been a burden at all—but a blessing.
“At the time, I had no clue what he could be getting from this,” Poincenot said. “I could have done those classes on my own and probably would have been fine, but the ability to take those classes with him was meaningful and purposeful for the two of us.”
Poincenot has taken much of the same formula onto the golf course with his father, who effectively acts as his son’s eyes.
“When I first heard about blind golf, I thought it was a joke,” the player said. “I used to be gung ho about being as independent as possible. It took a long time to realize there’s more power and beauty in interdependence.”
Although Poincenot still sometimes dreams at night as a sighted person, he says he has—at least in his waking hours—adapted well to the new normal and now fully embraces the opportunities he has experienced as the result of life’s unexpected twists and turns.
“I’m 10 years into it, so I’ve totally adjusted and accepted it. It’s part of me now,” the golf champion said. “At the end of the day, we don’t know if something is a positive or negative until we live through it and look back on it with hindsight. Losing my sight in two months at 19, I thought, was the worst thing that had ever happened to me—but after time passes, you start to realize, I’m living a really good life. There have been more positives than negatives.”
Relative blindness has also reshaped Poincenot’s “perception” on a broader level.
“Don’t judge a book by its cover,” he said. “I’m not able to see the cover. I’m all about experiences. What is my experience with a person—not what do they look like.”
An Evening of Hope is a benefit to raise awareness and funding for pancreatic cancer research at the University of Colorado Cancer Center. For tickets and more information, visit wingsofhopepcr.org.
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