At fourteen I was diagnosed. At sixteen I restricted myself from driving at night. At 25 I stopped driving all together. Today, at 39, I continue to live and function with retinitis pigmentosa, a degenerative eye disease that has caused my peripheral vision to deteriorate over the last 25 years, severely restricting my night vision and impacting my life decisions.
When I moved to Portland in 1996, I wanted to establish a relationship with a local retinal specialist. There’s no known treatment for retinitis pigmentosa, but I wanted to be able to stay on top of the progression of my disease and the research related to it. My primary doctor referred me to Dr. Richard Weleber at the OHSU Casey Eye Institute. Since then I’ve been going regularly every couple of years and have participated in multiple studies, including one for the development of improved visual field testing that is now being used to follow vision in clinical treatment trials.
Giving up driving has definitely been life changing, and many people have often asked, “How do you not drive?” But my family and I have made adaptations and major life decisions around this condition – we live in a house within walking distance to a shopping center so that my wife is not always the one responsible for getting eggs or milk in a pinch. I also commute to work on my bike, though over time it has become clear that this passion of mine is the next thing I have to consider giving up. The decision to stop driving was easy compared to choosing to forego century rides and road races as they are my passion and my independence, though the loss of this is something I have been preparing for for more than a few years. With my vision loss as it is, I have good acuity with contact lenses, and I’m able to create the picture around me in a stable environment. But when driving and riding a bike, that environment is too dynamic for my brain to keep up.
Research invested in saving sight is one of the biggest challenges of our time and the OHSU Casey Eye Institute is broadly and deeply involved in that research. People tell me all the time that I’m lucky to live in Portland and to be able to have access to the resources at Casey Eye, and I agree. Please make a gift today in support of their great work. Your gift is the gift of hope.