One of the first signs of RP is night blindness. The retinas are responsible for registering and responding to light, so when you have RP and your retinal cells are dying, they can’t tell your pupils to contract or expand according to the amount of light in the room. For example, most people walk into a dark movie theater and, at first, can’t see much, but in a few minutes their eyes adjust; RP eyes don’t adjust.
My first experience with night blindness happened not long before my RP diagnosis. I had been in a bookstore for hours, day had become night, and my car was parked on a side street a couple of blocks away. The first part of my walk was on a busy, well lit and heavily trafficked street, but when I turned the corner onto a darkened side street, the sidewalk in front of me disappeared. It was terrifying. It was like walking into shadows and not being able to escape. Eventually, I walked carefully toward the light from a street lamp about a block away, and found my car. It can sometimes be hard to understand, but another writer with RP, (Ryan Knighton) described it perfectly; he said that he could see the lights, but not what they were meant to illuminate.
That night, the night the sidewalk disappeared, I was freaked out, but I thought I just needed new glasses; I had no idea that I had RP. I also had more than twice the amount of healthy retinal cells than I have now, so my retinas worked a lot better and the night blindness happened in brief patches. I got in my car that night and drove home, but I began to notice that I was having increased difficulty driving at night. It wasn’t just the darkness, it was also the lights.
On the flip side of night blindness, there is light sensitivity. Just like the retinas don’t respond to things getting darker, they also don’t respond to things getting brighter. When most people walk outside into a super sunny day, their pupils will contract to protect their eyes from the light; RP eyes let all the light in. For me, light sensitivity has always been a bigger problem than night blindness. I call it light (as in, man, that is a bright light) blindness with spikes. That shit hurts. You know when you get your eyes dilated and any little bit of light feels like knives in your eyes? That is pretty much how I feel all of the time. I can’t go outside without sunglasses and a big hat. Occasionally, I will be rebellious and leave my hat behind, but the minute a hint of sun blasts through the top or sides of my sunglasses, I am totally blind and in pain. And, it isn’t just sunlight, it is any bright light. I can remember coming home from work, after a day under fluorescent lights, and collapsing on my couch, in tears, because my eyes hurt so much. I can’t read for long periods of time on any device that is back lit, because the light is too hard on my eyes; there are some days when I have just used my eyes too much and I pay for it the next day. Basically, sun and bright lights are my enemies. Give me an overcast day full of rain, and I am a happy girl.
I have talked to other people with RP who don’t have the level of light sensitivity that I do, and those whose night blindness is much worse than mine. I think it is important for me to stress that every case of RP is different; we experience symptoms in different ways and the rate of vision loss is different for everyone.
If you have any questions, about the RP light conundrum, or about my RP experience in general, please don’t hesitate to ask. I actually really like having the opportunity to address specific queries, if I can. Thank you for being a part of my story.
You can also find “Stories from the Edge of Blindness” on