Meet Jeremy Poincenot and his mother Lissa. An accomplished golfer with a 3-handicap, and a sophomore at San Diego State University, Jeremy was having the time of his life when suddenly he lost vision in both eyes. Today, he is an accomplished legally blind golfer with the help of his father and the love and support of his family. This is their story.
Candace Rose: Jeremy, at what age did you start playing golf and what inspired you to take up the sport?
Jeremy Poincenot: "I've been playing golf since I was a kid, but I started playing competitively when I was around 11 or 12. My parents met while working in the golf industry and my dad's still in the industry, so I got into the game by playing a lot with my dad."
Candace Rose: You and your husband met while working in the golf industry. How did you both feel when your son, Jeremy took up the sport?
Lissa Poincenot: "Jeremy grew up loving all sports – baseball, soccer, basketball- as well as golf. We were glad he also took up golf because it's a great game that you can play all your life. We like the fact that golf teaches life lessons, such as playing by the rules rather than relying on an umpire or referee to make the call, and learning to spend hours on the golf course with total strangers. My husband was particularly happy when Jeremy took up golf, because they spent Sundays on the course together."
Candace Rose: Jeremy, you're currently a student at San Diego State University, what made you decide on the campus?
Jeremy Poincenot: "SDSU has a strong Business program and I knew I wanted to major in Business. You can't beat San Diego weather, and the campus is beautiful!"
Candace Rose:Jeremy, can you tell us about your symptoms and how you were diagnosed with Leber's Hereditary Optic Neuropathy (LHON)?
Jeremy Poincenot: "I was walking on the SDSU campus one day during my sophomore year in college when I noticed a sign on campus and then that night I needed to squint to read a textbook. Since I'd always had 20/20 vision I figured I just needed glasses or contacts, but when I got to the optometrist and covered my left eye, I couldn't even read the big E on the eye chart. Over the next month I lost central vision in my other eye. I was misdiagnosed with other, more common problems that cause sudden, painless vision loss before my mom realized I probably had LHON based on what she'd read on the Internet, which was confirmed by a blood test."
Candace Rose: Jeremy, how did you react to the news at the time of diagnosis?
Jeremy Poincenot: "I was devastated and depressed, and asked 'Why me?' every day for a month. I didn't think it was possible to go legally blind so quickly at age 19, and couldn't believe there was no treatment and no cure."
Candace Rose: Lissa, what went through your mind at the time of your son's diagnosis? How did you and your family initially cope?
Lissa Poincenot: "When I realized that Jeremy's vision loss was permanent, I was distraught because I didn't know how to be a mother to a blind child. I have an aunt with macular degeneration who lives far away whom I'd only seen once since she'd gone blind, aside from that I simply didn't know anyone else who was blind. I feared that meant 'normal people' aren't blind, and that Jeremy wouldn't be able to live a normal life. I coped by spending hours upon hours on the Internet, learning all I could about the rare genetic disorder that took Jeremy's sight. I found others who also have LHON, and learned from them how Jeremy could successfully adapt to life without central vision."
Candace Rose: Jeremy, what inspired you to take up golf once again?
Jeremy Poincenot: "My mom found the USBGA which showed me that blind golf is possible. At first I was hesitant, but it also got me excited to play golf again, and to share the experience with my dad as my coach/caddie/guide."
Jeremy and his father, Lionel (Poincenot) with their first place plaque after winning the 2010 International Blind Golf Assocation's World Championship – Image courtesy of SDSU
Candace Rose: Lissa, how did you find out about the U.S. Blind Golf Association, and how did you encourage Jeremy to join?
Lissa Poincenot: "As I was learning about LHON, I connected with a man who lost his vision decades ago. He told me about Ski For Light, an organization that helps the blind to ski. He advised me that the most important thing I could do for Jeremy was to help him remain active and to find ways to continue to participate in sports. I found the Challenged Athletes Foundation, an organization that helps disabled athletes continue to participate in sports. They put me in touch with a tandem bike group called the Blind Stokers Club, where I learned that if you're on the back of a tandem (a stoker) it doesn't make a difference if you're sighted or blind. They put me in touch with a member of their group who took up golf after losing his vision, and he told me about the U.S. Blind Golf Association. I told Jeremy about it, but at first he resisted. He feared if he could play at all, it would be at a slow pace that would be intolerable for sighted golfers. After a while he was comfortable going out on the range, then to a Par 3 course, then to a full course, then finally into competition where he plays as quickly as do sighted golfers."
Candace Rose: Jeremy, you've since joined the U.S. Blind Golf Association and are one of the top golfers (congrats on your wins). Can you tell us about that?
Jeremy Poincenot: "My dad and I won the World Blind Golf Championships held in England in 2010. We went into the tournament wanting to have a good time. Not only did we succeed in that; winning the tournament was icing on the cake. We also won the USBGA National Championships in August 2011. Blind golf is cool because they aren't individual victories, they're team wins and sharing the experience with my dad is great."
Candace Rose: Jeremy, how does your family influence your golf game?
Jeremy Poincenot: "My dad directly influences it, as my guide out on the course. In general, my family's very supportive of me in raising awareness of blind golf and playing in blind golf events all around the world."
Candace Rose: What is a typical day like on the golf course during a tournament?
Jeremy Poincenot: "Early wake-up. Got the morning jitters. Excited to start the day. My dad and I hit balls to prepare for the round. Discuss any game plan we want to put into effect that day, such as how to play the course; i.e.- if the conditions are hard will we play more conservatively or more aggressively? We have a good time playing; keeping a competitive spirit while grinding out the best score we can."
Candace Rose: Jeremy, where do you find motivation both on and off the course?
Jeremy Poincenot: "I find motivation from being diagnosed with a rare disorder that has no treatment and no cure. I look at it as having shoes to fill. My purpose in life is to do everything in my power to help find a cure for LHON, by raising awareness and research funding. My mom is just as motivated as I am, if not more, to find a cure for LHON, and seeing her support and inspire others keeps me motivated. As a motivational speaker, and just in life, I enjoy inspiring others to do great things."
Candace Rose: Jeremy, how is life as a student at SDSU?
Jeremy Poincenot: "SDSU is great. The students were all very accepting of me when I lost my vision, and now they're proud of what I've accomplished. I'm a member of Sigma Phi Epsilon fraternity, and they've all been incredibly supportive. It's been a challenge to adjust to taking classes without vision, but fortunately there's assistive technology available which makes information accessible."
Candace Rose: Lissa, you created LHON.org, can you tell us about the site, and more about the organization?
Lissa Poincenot: "I created LHON.org so that other families impacted by LHON wouldn't have to suffer from lack of information the way we did. I took all the information I gathered over those very difficult first months, and put it all in one place so that there would be a 'roadmap' for the newly-affected. There's also a registration page so that people can be entered in a database to be alerted as new information about LHON is published and so that people can connect with others in their area."
Leber's Hereditary Optic Neuropathy – LHON.org
Candace Rose: Jeremy, can you tell us about the annual bike ride you founded called Cycling Under Reduced Eyesight?
Jeremy Poincenot: "It's a ride started by my friend Mark Prophet and myself as an annual event to raise awareness of LHON, and to raise funds for research of this orphan disease [www.lhon.org/cure]. We've conducted the ride three years so far, and have raised over $50,000 for LHON research."
Candace Rose: Jeremy and Lissa, do you have any additional information you'd like to share please?
Candace Rose: What's next on your schedule? Where will we see you next?
Jeremy Poincenot: "I'll defend my World Champion title in July, 2012 in Nova Scotia, followed soon thereafter by a feature on The Golf Channel. You can follow me on Twitter."
Candace Rose: Jeremy and Lissa, where can we go for more information?