I was 33 when Dr. Heckenlively told me I was going blind. After dropping the bomb, he took a vial of my blood to, as he so eloquently put it, “rule out syphilis”, gave me a list of vitamins that might slow the progression of my disease, and sent me on my way. I felt like I had been punched, like I was lying prostrate on the floor and couldn’t breathe. I was overwhelmed, felt clueless and afraid. I had no idea what RP was going to do to my life.
When I first heard about RP, it was from a TV show, and a million miles away from my reality. The TV program talked about RP being genetic and introduced families with multiple people affected by the disease; the first time it was suggested that I might have it, I ignored it because no one in my family even wore glasses, except me. I soon learned that RP is most often genetic, but not always; there are a handful of us that are the sole proprietors of RP in our families, and in my case, I was completely unprepared for it.
I did my share of online research in the months before my diagnosis, but a lot of it was about the genetic aspects of RP; this gave me a false hope that I didn’t have it. I read countless simplified descriptions of RP symptoms: Night blindness, loss of peripheral vision and eventually central vision, resulting in total blindness. I am not a particularly sciencey (yes, I know that isn’t a word) person, but I will try to throw a little bit in here. Basically, the retinas are made up of 2 kinds of cells (photoreceptors), called rods and cones. The rods are responsible for low light and night vision, while the cones are responsible for color and detail. There are way more rods than cones, and the rods are the ones that begin to degenerate first in a disease like RP; that is why we experience night blindness and a loss of peripheral vision. I am sure this is a very rudimentary explanation, but hopefully you get the sciencey picture.
When most of us think about peripheral vision, we think about stuff that is seen way off to the side, or out of the proverbial corner of the eye. The truth is, because peripheral vision is dictated by the rods and the rods are pretty plentiful, peripheral vision is actually most of our vision. It is what you see all around you, not just way off to the side.
About six months after my diagnosis, I remember looking for a coin purse that I had dropped on the ground; I was looking all around, repositioning myself, but I couldn’t find it. The person I was with was perplexed and said, “it’s right in front of you.” The thing is, that phrase, “It’s right in front of you,” means nothing to someone with RP. When you have RP, right in front of you can shift and change and disappear completely. It can seem to an observer that I am looking right at something, but if my eyes are directed just slightly to the side of whatever it is I am looking for, it may as well be a grain of sand in the ocean. Peripheral vision is huge and complex.
I have searched for my husband in our apartment, walking past his desk 10 times, and it turns out he has been sitting there all along. When my dogs are standing at my feet waiting to have their harnesses put on for a walk, I have to scan the area several times to locate both of them. In a restaurant, I never see the waiter trying to hand me a menu, and glasses of water seem to materialize out of thin air. If I drop something on the ground, I often have to ask for help to find it. RP comes with so many challenges that I could never have imagined, but I am learning to be more patient; to take the time I need to find things and not allow my frustrations to take control.
I am sure that I leave stuff out that people might be curious about, and I welcome curiosity, so please don’t hesitate to ask questions.