I’d like to thank Dianna Amarich for sharing the following post from her blog at http://www.livejournal.com/users/diannaamarich.
I’ve been doing a lot of thinking today about my vision, or what’s left of it. I have light perception. At least I used to have light perception. I can’t say for certain now that I have it at all.
I don’t remember when I went to the eye doctor and found out that it’s been fading. I just know that there came a time when I couldn’t tell if a light was shining in my eye or not. At the time, I don’t know if I was too bothered about it, but I am now.
I used to have to wear sunglasses all of the time because the light would be so bright it would hurt my eyes. Even to have to look at it for a short time. I couldn’t even stand camera flashes for pictures. Nowadays, I don’t notice these things, or not as often. And I wish I did. At least I was seeing light for certain then.
Now my brain is playing tricks with my eyes. I don’t remember all that the doctor said about what’s being stimulated or how, it just is.
Anyhow, when I’m inside a building sometimes the light flashes when it shouldn’t. It’s as if the light is blinking very rapidly. When I’m outside, sometimes it’s bright and sometimes I don’t even notice it. So I’m not sure what I’m seeing or if I’m seeing anything. Very frustrating!
I’m finally admitting it, at least in writing, that I’m angry at losing what light perception I had. I’ve been like this on and off for a while but didn’t talk about it much. I didn’t see the point. I didn’t realize how much I depended on light perception when I was traveling. I could tell where a door was by looking towards it and seeing light coming through it–even from a distance. Not all the way across the room, but still. I think that’s one of the main things I used it for. Sometimes when I was little and was allowed to ride a bike, I used light perception to tell me when I was passing certain landmarks on the path I was allowed to ride on. Of course I didn’t use only light perception, I listened, too, however I traveled.
Just knowing what the weather looked like–if it was cloudy, sunny or whatever–was nice, too. Of course I can still tell those things by how it feels outside, but it’s not the same.
Sometimes it was neat to watch light patterns in glass. It was just fun to do. It’s not like I saw colors, but if I looked at glass, especially stained glass, the light just looked different depending on how I turned my head to look at it. (I knew I was looking through stained glass at the time, because someone told me.)
Sometimes it was bright and sometimes it was … soft. Sometimes it looked kind of cloudy. Sometimes it looked just plain normal–whatever that is. It’s hard for me to describe what normal looks like for sighted people, and I’m sure some are curious. That doesn’t bother me. I don’t mind trying to answer questions about how I see things.
I don’t like being in this confused state of sometimes seeing and sometimes not. One thing, and it may be small to some but it’s big to me, is not being able to tell when a light is on or off in my own home! I hate that! I can’t stand having to ask Eric all of the time, “Is the light off?” or the opposite. It’s one of those things I was able to do for, I guess most of my life. And now it’s almost impossible for me to be certain anymore.
Sometimes I wish it would just go away completely, and then I wouldn’t have to wonder anymore about what I was or wasn’t seeing. At least then it would be all dark. But then I’d miss what light I do manage to see.
There is no easy way to deal with this. I’m just going from day to day, wondering what will happen next.