Retinitis Pigmentosa (RP)

There’s a lot of talk on this blog about my eyesight troubles, and you might be asking yourself Just what the hell is wrong with this guy?. I have retinitis pigmentosa (RP), which dramatically impairs my vision.

From All About Vision:

Retinitis pigmentosa (RP) is a rare, inherited disease in which the light-sensitive retina of the eye slowly and progressively degenerates. Eventually, blindness results.

What does this mean to me?

• There is no cure at this time. The retina is in the back of the eye, and research is limited but growing. Some scientists are putting microchips on retinas to help them work better, but the technology is not overly successful yet.

• I have light and dark sensitivity issues. If I go inside on a bright, sunny day, I’m basically fucked. It will take a good five to ten minutes for my eyes to adjust. Restaurants and movie theaters are the worst, as they are usually dimmer than average places.

• I have what are known as “islands of vision,” which means only some parts of my eyes are actually seeing the world around me. My brain, the amazing computer that it is, fills in the missing data with what it thinks would be the right info, but as my eyes are ever-moving and the input is ever-changing, my sight has a flickering, grainy appearance. My best description is this: Think of old 8mm film that your grandparents shot in 1956. That’s how I see.

• I read everything in high-contrast, white letters on a black background, which means I can’t read regular books or newspapers, and menus are pretty tough. My wife sometimes has to read for me when we’re out. Subtitled films are exceedingly difficult as well.

• I can’t drive. The parts of my eyes that can see function at about 20/100 or 20/125, but my peripheral vision is shit. I rely on my wife, my friends, and anyone else willing to take me where I need to go.

“But you have glasses!”

Yes, but they don’t fix the RP, they just help with any problems in the front of my eyes. Mainly, they alert other people that I can’t see well. I have also started carrying a cane for that reason, although I currently use it sparingly.

Are all the posts here about blindness?

No. Absolutely not. I talk about kids, movies, music, religion, sex, philosophy and whatever I feel like talking about. I think it helps to have some knowledge of RP for context, but I don’t want to depress you.

Ask the blind man!
If you have any questions, ask away. I will update this page as necessary to aid readers in understanding what I’m talking about.


6 Responses to Retinitis Pigmentosa (RP)

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  5. clystra43 says:

    I had to laugh about “But you have glasses!” I can’t count how many times people have told me to put on my glasses…”you will see better.” They say. These are people that know me and still do not understand my situation. I have given up explaining.
    I am 53 and also have RP. Glasses only help for reading. I have less than 10 degrees but my central vision is around 20/50.

    • semiblind says:

      People just really don’t understand blindness. They think it means complete darkness. This is an ongoing struggle, but we are educators–albeit people forced into it by genetics.

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