G.T.

Retinoschisis

My name is not important. Actually, my wife didn’t want me to use my name because there is still a stigma attached to being blind or legally blind. When people do find out I am legally blind, they often suddenly treat me like I am stupid. My central vision is the problem. I need magnification to read a newspaper; but my peripheral vision is good, so I usually pass for sighted.

Most people don’t understand low vision. They think you are either blind or have 20/20 vision. I cannot recognize someone’s face from across the room, which can be embarrassing. But I can usually use other clues, such as their voice, or the way they dress or move, to identify them. When I see them out of their usual dress or context, I have to feign being distracted to avoid seeming gauche.

I was born in 1949. I did fine in school until the second or third grade, when they started using smaller print in books. I could not get fractions because they were written so small. The teachers and I just thought I was stupid. School screening pointed out my vision problem. When I was about eight years old, a resident ophthalmologist did a pioneering study of retinoschisis in our family. Apparently women are the carrier’s, and only the boys can get it. It has been described as the retina slowly peeling like an onion. Three of us four brothers have it, and they traced it back through my mother’s family. They said we’d be completely blind within 15 years and should learn Braille.

My parents were both paralyzed by their guilt. My mother would meltdown when she thought of it. My father would brag that he and his family always had 20/20 vision, proving that it was not his fault, as if our feelings were beside the point. We basically grew up in denial of our low vision. I was never offered bifocals or magnifiers, which would have helped.

In high school my vision was 20/50. I had trouble seeing the blackboard, so I always had to sit in the front row. We didn’t have very good lighting at home, so it was not optimal for studying.

In college I would avoid studying as long as possible because it gave me severe eyestrain, so I would usually end up pulling an all-nighter before a test, and do fine, except I’d be useless for a few days from the strain, and it certainly wasn’t best for retaining learning.

I got my driver’s license through an appeal to the state until I was around 30, when my eyesight slipped to about 20/70. I was without a driver’s license for ten years, and all I could pray about is that I be able to drive again. I entered the bioptic driving program in 1988. It was a godsend. The 5.5 power Beecher’s are awesome! I had 25 hours of driver retraining with the bioptics. The most important thing I learned was that you can glance down the road and not see any risk, but that is different from looking down the road and actually identifying a clear road. Those of us in the bioptic program need to respect the privilege we are given, and take special care.

In college, with the help of Vocational Rehabilitation, I went to a low vision specialist who identified that I needed very strong up and down prism correction. It is like being cross-eyed in an up and down direction. I used to wonder why I would get so exhausted just driving down the road, or having a conversation with someone. Turns out it was because I was fighting my eyes the whole time, trying to force them to see together.

After college I was an accountant/computer guy for several years. My vision was an impediment, but I managed to overcome it to a large extent, extra strong reading glasses and magnifiers when I had to. My vision finally got bad enough that I could no longer do that detailed work, so I went into the Randolph-Shepherd program, otherwise known as the Blind Vending Program. It is more physical than I was used to, but it is nice to do a job that is not all detail work, and where there is a lot of support and people understand and can help with your shortcomings.

I carry a 5X pocket magnifier wherever I go, and a pair of 8 diopter half-eye reading glasses. I slip out the pocket magnifier to read prices at the store and things like that. At home I use a pair of 4X microscope insert glasses to read. I take my low-vision aids so much for granted that I am suddenly at a loss when I misplace any of them, and have to scramble to find them so I can function normally. I have used a computer at home with a 21 inch monitor and 3X magnifying glasses, but the computer died of old age, and I hope to have a new one soon with a copy of Zoomtext screen enlarging software, to do the bookkeeping for my business.

As I think back, my slow loss of vision over the decades has sometimes coincided with blows to the head. Nobody told me jarring the head could cause vision loss, until Dr. Richard Windsor of Eye Associates did. Now my vision is 20/200, and hopefully it will hold, as I am trying to be very careful. Dr. Windsor has been a blessing to me. I used to get so depressed when I went in to a regular optometrist for an eye exam. Without thinking, they would actually say things like, “Boy, you really have bad eyesight!” It is great to go to a place where they understand low vision.

I have had cataracts removed from both eyes. And two years ago a shadow appeared at the top of my left eye got bigger over several days. I called Dr. Windsor at home at 5pm on a Saturday, and he arranged to have a retinal specialist see me the next day. She reattached my retina in a two hour operation that Sunday, and the vision has pretty much been restored.

I am married with a six-year-old boy and a 10-year-old girl. Neither of them have retinoschisis, although my daughter could pass it on to her male offspring. My hope is that if that happens, by that time there will be a cure. In any case, it is a blessing to know that there are plenty of low-vision aids available, and people like Dr. Windsor to help us out.