Jeremy Poincenot isn't afraid to admit it: He did say "Why me?" Lots of times. Every day for months. And who could blame him? He was a 19-year-old business major at San Diego State who loved playing golf. And in a matter of two months, he had lost all of his central vision.
"I was definitely depressed," Poincenot says. "I didn't think you could go legally blind at 19. I didn't even know that was possible. I thought I was a good kid growing up. I thought I'd done everything right. I just didn't understand how this could happen to me."
Poincenot has a rare genetic condition called Leber's Hereditary Optic Neuropathy, an incurable disease that strikes only about 100 people a year. Men between the ages of 18 and 25 are most at risk. Jeremy's 16-year-old brother, Eric, has a 50 percent chance of getting it.
"That," Jeremy says, "scares me more than me going completely blind."
So Jeremy, now 22, has made it his mission to help find a cure for LHON, and being the reigning World Blind Golf champion has given him the platform to raise money and awareness.
"Having a disease with no treatment or cure has given me a purpose," he says.
Jeremy was misdiagnosed several times before doctors zeroed in on the true cause of his vision loss. He remembers having to squint to read a sign on campus, which surprised him because he always had 20/20 vision as a child. He went to the optometrist the day before Thanksgiving in 2008, figuring a prescription for contacts or reading glasses would do the trick. Instead, the optometrist dropped a bombshell on him.
"He thought I had a brain tumor," Jeremy says.
An MRI the next day -- Thanksgiving Day -- proved the optometrist wrong. But misdiagnoses continued.
"Then they thought I had opticneuritis, which is an inflammation of the optic nerve, and that just five days of steroid treatment would cure me and I'd be perfectly fine," he says. "They put a catheter in my hand and pumped me with steroids. Then it was NMO, neuromyelitisoptica. That would cause me to go completely blind and make me a paraplegic. The cure for that was a catheter in my jugular with something called plasmapheresis every other day for 10 days. It was crazy."
It took about two months for the right diagnosis, and by that time, Jeremy's mom, Lissa, had figured it out on her own with exhaustive online research, which helped her cope with his deteriorating sight.
"It was brutal in the beginning," she says. "Seeing your child suffer before your very eyes and not knowing how to help and knowing it's a permanent condition -- it was devastating."
So was the possibility of suffering from the condition herself. LHON is passed down on the mother's side, and although it hits just 15 percent of women compared to 50 percent of men, females don't typically show signs until they are in the 45-50 age range. Jeremy also has a 19-year-old sister, Julie.
Identifying LHON as the reason for Jeremy's vision loss removed the mystery, but then the depression set in.
"My attitude was starting to take a toll on my parents and my siblings," he says. "It was draining them. Then I heard this guy on the news in San Diego who had an F-18 plane land on his house and kill his wife and only two daughters and his mother-in-law. This guy's bawling his eyes out and says, 'If anyone knows how to deal with this type of tragedy, could you please help me out?' That was the major turning point. I wanted to change my attitude for my family. His attitude motivated me to having a better attitude. It made realize things could always be worse no matter what the situation. We should be appreciative of what we do have and not dwell on the little things. Yeah, I lost my central vision, but really it's not the end of the world."
Jeremy decided to start golfing again. In August 2010, he entered the International Blind Golf Association's world championship tournament in Britain. With his dad, Lionel (pictured), as his caddie/guide, Jeremy won the B2 class, which is for golfers who have up to 6 percent of their vision. (B1s are completely blind. B3s can see up to 10 percent.)
"I was the youngest competitor, probably by 15 years," Jeremy says. "People probably thought, 'Hey, here's this cute kid and it's cool that he's coming out here and competing, and that's really nice and sweet.' But then when I won, it was like, 'Wow, this kid can actually play.'"
The event takes place every two years. When Jeremy defends his title in 2012 in Nova Scotia, he won't be able to sneak up on the competition like he did the last time.
And he can do more than golf. Jeremy discovered a tandem cycling club in San Diego that specializes in having a blind person as the second rider, known as the stoker. In 2009, he and a fraternity brother named Mark Prophet decided to organize a 240-mile tandem bike ride from Santa Barbara to San Diego as a LHON research fundraiser. It has become an annual event, and Jeremy and Mark have done it each year. The 2011 ride generated $50,000 in contributions.
During the Thanksgiving break this year, Jeremy went on a family trip to Mammoth Mountain and skied for the first time since being hit with LHON.
"I was really nervous, but we skied two days and I didn't fall once," he says. "It was a great experience. I can look above something to see it with the bottom of my peripheral vision. My dad was leading me down the slopes, so I'd look above him to follow him. My mom was behind me and would yell if a pole was coming up or something like that. It took some getting used to, but we started getting better at it."
The next sport he might try is Beepball, a version of baseball for the blind. The ball is larger than a softball and beeps, while the bases also have sound effects to help the players get a sense of the field.
Regardless of what he tackles athletically, Jeremy says he will concentrate on motivational speaking. His first speech was two years ago at San Diego State's chapter of the Delta Gamma sorority, whose philanthropic cause is helping the vision impaired.
"I was hesitant at first to do it," he says. "Then when I did it, I spoke for about 10-15 minutes, told them about what I had gone through, and it was therapeutic to tell an audience."
It turns out he was natural at it.
"The notion of Jeremy motivational speaking never crossed my mind until it happened," Lissa says. "People would always tell me he has charisma and that he's going to run for president or be in sales, something where he could communicate and connect with people. When he'd go to baseball tryouts, when other kids would be fooling around, he'd walk up to the coaches and to say, 'How you doing?' He always had that skill, and he's turning it into motivational speaking."
Jeremy's favorite part of his speaking appearances is the question-and-answer sessions because he enjoys interacting with the audience.
"It means a lot to me when I give these speeches and people come up to me afterwards and they say, 'You've motivated me for this reason' or 'Hearing your story has made me realize that I want to do this in my life,'" he says. "It's really gratifying to hear that."
Lissa, who suggested the speaking opportunity at the sorority, also created a website with details about LHON and how to cope if it hits your family.
"If you have a great support system, if people help you understand that life doesn't end, then different doors open up for you to re-engage in life, and that helps," Lissa says.
The latest opportunity for Jeremy is another TV appearance. He was featured on an episode of MTV's "True Life" about young people losing their sight. Now, after he finishes his final exams this semester at San Diego State, he will head to the Doheny Eye Institute in Los Angeles for a status check, and a crew from the Golf Channel will meet him there to begin filming for a segment of its "Golf in America" series. It will also cover his world title defense in Nova Scotia in the summer, which means the show probably won't air until the fall.
Jeremy says he won't be nervous about having a camera stuck in his face because he can't really see it. That approach has also helped his motivational speaking.
"I think I was a good public speaker when I could see, but when I did my first speech after I lost my vision, I realized I couldn't see anyone's reaction to anything," he says. "I could hear oohs or ahhs but I couldn't tell if they were frowning or smiling, so I can keep my train of thought on what I'm speaking about.
"I don't feel any fear about what they're thinking because I can't see their faces."
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