Philadelphia Chapter Featured Volunteer

How Retinal Disease has Affected my Life
by Curt Woolford, MA
Outreach & Education Committee Chair

Where do I begin? How do I write about something that is so personal yet so universal among those with retinal disease? I’m resisting my deeper thoughts, feelings, and memories about my vision and my life.

The bottom line: I was born with ocular albinism, which from a retinal disease perspective affects the central part of the retina, the fovea. The fovea is responsible for detailed vision and allows us to read small print and see detail in the distance. My fovea is underdeveloped. I have never had 20/20 vision. I have never hit a baseball.

Maybe I hit a baseball once. When I was about eight years old, all the planets must have been aligned. There must have been a benevolent and playful angel that swung my bat at just the right time, in just the right way. This was the first time my friends had seen a miracle. Most of them fainted.

Reading has always been a chore. When I was in elementary school, I couldn’t understand why the print kept getting smaller as I grew taller. Was there some cosmic connection here? Where did all the extra ink and paper go?

I made it through elementary, junior high, and high school. I never got any help with reading. I never could really see the blackboard. Back then (1961-1974) schools just did not help students who needed a little something extra.

College, graduate school, career, and then…vision loss. Hey, time out! Ocular albinism is supposed to be a stable condition. Doctors; many, many doctors. Wow, there is so much they don’t understand about vision. But doctors are supposed to make me feel better. I thought they could fix things.

Acceptance is difficult; very difficult sometimes. My journey continued and my understanding awakened: 1) Vision is one of the most complex systems in the body; 2) retinal disorders are rare and complicated; 3) current medical treatments have limitations; and 4) doctors are human.

There is so much change that accompanies retinal disease. I used to teach a business workshop on dealing with change. I’m supposed to know something about it, to be a bit of an expert. Well, when it comes to dealing with vision loss, I have been in uncharted territory. This kind of change is hard -- getting struck by a bolt of lightning would feel more subtle. My vision changes have required me to dig deeper into my soul than I ever have before.

I now have less vision but see more clearly what is important in life. How can I help others to see?