The first time I heard about RP was from a story on 20/20 when I was a kid. Barbara Walters told the tale of a family – I remember all the kids looked like they spent a lot of time at the beach and were very blonde – who suffered from a rare eye disease that caused something they called “tunnel vision”. There were attempted examples of what an RP sufferers deteriorating vision is like and it was terrifying; can you imagine looking at the world through the hole in a straw? Knowing that the hole would get smaller and smaller until the world finally disappeared? I remember feeling so sad for the family and thinking how lucky I was that everyone in my family had such good eyes.
The second time I heard the words Retinitis Pigmentosa, I was in my late 20’s and visiting my optometrist for a routine refraction . I was just there to get some new glasses because things were starting to look a little foggy at night, but he had a different idea. I remember him asking if he could dilate my pupils and take a closer look inside my eyes; I remember it seemed like he was looking into my eyes forever and the bright lights burned, and then he said something about bone spicules in my eyes and a rare disease and that I should see a specialist named Heckenlively…….I nodded my head and took Heckenlively’s number and proceeded to blow the whole thing off. There was no way I could have some rare eye disease; no one in my family even wore glasses…..except me of course.
Fast forward about five years; I am walking out of a Borders bookstore heading toward my car, and as I turn a darkened corner, the sidewalk in front of me literally disappears. It was like the darkness had consumed the world for that terrifying moment before I looked up and found a street light shining a block away. I rushed toward the light telling myself to call the eye doctor in the morning because I obviously needed some new glasses.
Two days later I am in the Ophthalmologist’s waiting room, filling out the first time patient form, and I come to the question about previous problems with eyes. I hadn’t thought about my visit to Dr. Vogel, the aforementioned optometrist, or RP, in five years, but sitting in that waiting room I remembered and I think at that moment I knew something was wrong, something that couldn’t be fixed with new glasses. That afternoon I had my first visual field test and was once again referred to Dr. Heckenlively. This time I couldn’t ignore it.
Five months later, I was formally introduced to Dr. Heckenlively and Retinitis Pigmentosa.