Five years ago, I started to experience blurred vision in my right eye and then in my left eye. Then, during my senior year at Rutgers University I was diagnosed with Leber’s Hereditary Optic Neuropathy (LHON). I was 23 years old. In a matter of months, I lost my central vision in both eyes and became legally blind.
LHON is a genetically-inherited disease passed on by the mother that leads to a loss of central vision. LHON predominantly occurs in males in their 20s but can also impact females and people of all ages. Since my diagnosis in 2013, the sharpness, visual acuity and color vision has also decreased.
After having 20/20 vision for 23 years, it was extremely difficult to adapt. I struggled with eventually losing the ability to drive my car, recognize the faces of the people around me, and reading without magnification and other forms of assistance. Since there is currently no treatment or cure for this eye disease, I was left with little hope for ever recovering my eyesight.
I have been an athlete all of my life playing sports such as basketball, baseball, football, soccer, and track. This vision loss has hindered my ability to participate in sports but my competitive edge and desire to be active still lives on.
I have found enjoyment playing sports such as Beep Baseball, which is an adaptive version of baseball for those who are blind or vision impaired. Players rely on the sound of a special ball and bases that beep rather than relying on sight. I also recently participated in my first 5K walk/run in Denver, Colo., in conjunction with the Colorado Center for the Blind to raise funds to support Braille Literacy.
In October, I participated in a cycling event that allowed me to compete, and also contribute to research for this irreversible condition. Fortunately, many clinical trials have begun that may one day provide treatment for those affected, and possibly onset prevention for others who are in jeopardy of losing their sight like I did.
My brother, Mike, and I participated in the 10th annual C.U.R.E. Ride in California. The acronym stands for Cycling Under Reduced Eyesight. The event was a four-day bicycle ride from Santa Barbara to San Diego to raises money and awareness of LHON. Myself and three other LHON-affected riders pedaled on the back of tandem bikes with a group of 27 riders total along the nearly 250-mile journey. In all, our team raised just under $60,000 toward LHON research.
Riding again gave me such an exhilarating feeling pushing my body to the point of exhaustion and traveling at speeds I hadn’t reached on a bike in years. As we pedaled down the California coast, the smell of salt water and the feel of the ocean breeze made me temporarily forget about my vision loss.
Taking part in events such as the C.U.R.E. ride has helped me cope with blindness in several ways. It helps me detach from frequent isolation, which has been a particularly trying side effect of blindness. It also allows me to experience team camaraderie with a group of determined individuals aiming to achieve a shared goal. This feeling was reminiscent of my days playing sports when my vision was 20/20.
The ride also helped me feel like I was making a difference in the lives of others affected by LHON by pushing the needle forward and potentially shortening the time until researchers find a treatment or cure for this life-altering condition.
Although losing my sight has made me feel like a bird whose wings were clipped just before taking flight, the thrill of cycling down the coast made me feel like I could fly again. This ride showed me that many obstacles in life are mental and often times our physical limits are controlled by our positive or negative self-talk. Through the hills and valleys of California I knew that if I told myself I could finish the ride strong, I would. But I also knew that if I told myself I was too exhausted to complete the ride, I would be correct then too. At points when I was tired and fatigued, I reminded myself that pain is temporary, but quitting lasts forever. I take pride in the fact that I am not a quitter, and like the bike ride, I will conquer this life of blindness with faith, perseverance, and determination.