On Being Blind, Yet Not
I mentioned earlier that I am legally blind. There are a couple of ways to be defined that way. One is that your visual acuity is not correctable with glasses beyond a certain level. That’s not my problem. I fall into the other category of legal blindness. That is, I have a visual field of less than 20 degrees. These days, quite a bit less than that, but I haven’t had it measured in a while. I have retinitis pigmentosa, a term that refers to a constellation of degenerative diseases, all characterized by slow death of the light sensing cells of the retina.
I have a fairly typical case. I was diagnosed when I was in my early 20s, and, while the disease is caused by defective genes, there is no family history. My symptoms are classic. My night vision is extremely poor, and getting worse, and my mid-peripheral vision is pretty well shot. Oddly, I still have a little vision in the extreme periphery, but, believe me, it’s pretty much useless. I gave up driving at night in my mid-20s, and completely when I was about 31. Gave up the bicycle a few years after that (post a couple of bike-bike accidents), and now walk or take public transit when I need to travel alone. I still have good enough central that I can read in decent light, and I can use a computer more or less without any accessibility aids, although I do prefer light-on-dark color schemes for writing code (which is what I do for a living).
I carry a white cane for identification when I am in unfamiliar or crowded locations. It says to those around me, “STAND CLEAR! THIS LARGE MAN CANNOT SEE YOU, AND WILL CRASH INTO YOU IF YOU DO NOT GET THE HECK OUT OF THE WAY!” Quite useful really. But I think it throws people off that I can clearly see a little. It’s sometimes an interesting conundrum to decide just how blind to “act.” Sometimes, I can seem so sighted that people forget that I can’t see anything I’m not looking at directly, and hilarity may therefore ensue. But if I act too blind, people can try to help so much that I feel a little embarrassed, or at least get my pride wounded a bit. I’ll keep trying to strike the balance, but I know that, eventually, there won’t really be much balance left to strike.
Didn’t mean to sound self-pitying. I have a great life, despite my visual impairment, but wanted to explain a little what my situation is in this regard.
Thank you for sharing. My son was diagnosed with RP recently and it is helpful to read of other’s experience. Best wishes.