RP is anything but straightforward; it comes with lots of extras that you wouldn’t expect. A year after my diagnosis, I thought I had become pretty versed in the language of RP and what I might possibly be faced with as the disease progressed. Night blindness had become a part of my fabric, light sensitivity was something I was constantly dealing with and I was learning how to become a vigilant scanner while walking down the street. But, I had only skimmed the water. And, at that time, I still had about 50 degrees of vision. This diagram may help with the whole degrees of vision thing.
As I understand it, normally sighted people have about 85 to 110 degrees of vision, well into the far peripheral. At the time of my diagnosis in 2002, I had about 50 degrees. Now, I have between 15 and 20 degrees, and in the RP world, that is actually pretty good. I think this diagram also shows how much of what we see is considered peripheral vision. This was a bit tangential, but I hope it gives some clarity.
So, back to 2003. I was due for my annual visit to the retinal specialist; Dr. Heckenlively had left UCLA to work in Michigan and his patients had been split between 2 other Retina guys. It would be my first time meeting Dr. Sarraf, and despite the fact that he would inform me of an RP extra I hadn’t expected, I loved him. Dr. Sarraf is an incredibly kind and gentle doctor, who gets genuinely excited to give good news and is insanely smart; he is one of those serious research guys and I am lucky to be in his care.
The day I met him, he walked into the darkened room, shook my hand, chatted to me for a while and proceeded to examine my eyes. I can’t lie, I don’t look forward to this eye exam; it hurts, a lot. My light sensitivity is extreme on a regular day, even with sunglasses, so imagine how much a bright light aimed directly at my dilated pupils feels; it’s like someone is poking my eyes with hot needles. Not fun. Anyway, I digress.
Dr. Sarraf does the exam, sits back down in his chair and, in his soft and comforting way, tells me that I have cataracts in both eyes. What the Fuck? Cataracts? Isn’t that something only old people get? Apparently not.
Here is a simple explanation of cataracts: A clouding or loss of transparency of the lens in the eye as a result of tissue breakdown and protein clumping. Cataracts affect most people who live into an old age. Symptoms include double or blurred vision and sensitivity to light and glare.
Cataracts are commonly seen in RP patients, but doctors and researchers don’t seem to know why. When Dr. Sarraf told me I had cataracts, I felt devastated, which was difficult for some people in my life to understand. I remember my step mom telling me that it wasn’t a big deal because cataracts can eventually be treated, but for me, it was a huge deal. Of course I knew that cataracts could be removed, but I was 34 years old and I sure as hell hadn’t met any other 34 year olds who had fucking cataracts. It was one more thing piled on top of everything else that RP had brought into my life; it was one more thing that made me feel defective, broken and different.
Almost 16 years later, the cataracts are still there, slowly ripening, but I don’t give them much thought. They are just another thing that comes with having RP, an added challenge to an already challenging disease. I don’t love that I have them, but I have accepted the cataracts as part of my RP journey.