Tuesday, September 05, 2006

Funnel Vision

This blog is just more or less a conversation describing what I can do. I am just going to let the words flow in and out of my head or rather, should I say, "let my fingers do the walking (typing)?"

The world is getting narrower and narrower. A genetic disorder called Usher Syndrome slowly narrows my field of vision due to retinitis pigmentosa while my hearing is lost in the higher frequencies. I am labeled "deafblind," though I don't really think of myself as that because in my mind, it's I am not totally deaf or blind. I have less than 20 degrees of central vision. LIke the title of my blog, I am literally blind-sided. I wear hearing aids. I have severe-profound loss in both ears. I was born hard-of-hearing, but my hearing has worsened over time. Then the night blindness started. Then every once in a while floaters and lightning flashes are having a party in one or both of my eyes

What's it like? You bump into things that are in your way. Sometimes you see it, and sometimes you don't. It's like you see the object in the distance, and once you get there, it's outta mind, outta sight and then you bang your shin into something. They call it "tunnel vision." It's like looking through a tunnel, but really it's "funnel vision." You can see more in the distance, but not up close. I have bruises on my shins that won't go away. They are ugly and (faded) brownish in color.

There are days when you have someone tell you that there's a lawn chair or something in front of you. If you didn't see it, you are like, thanks for the warning. But if you did see it, then you get mad because you saw it and get defensive. "I see it!" You really don't want anyone's help, but you know that sometimes it's a necessary evil.

I gave up driving earlier this year. It was so hard. Your independence...is gone. You don't have the option of going out at a whim. I haven't driven in the dark for about a decade. Slowly, you admit to yourself that you are putting yourself at risk and you know it's time to "hang up the keys." No wonder elderly people aren't ready to stop driving. They don't want to depend on anyone. It happens. I knew I was becoming a "granny driver" when people started passing me on a 25 mile speed zone in the city. I was too cautious. I was afraid that someone may cut in front of me or worse, a kid walking or biking. I was scanning the road, and both sides of the road. Not a good thing.

I was happy to have a wonderful support group of other friends affected with Usher Syndrome Type II who have been there. I don't know what I would have done without them. I would probably have coped, but maybe I would not have bounced back as quickly if I didn't. The hardest part is not being able to get your kids after school. It's hard to run around when they have after-school activities. I am glad that the oldest isn't as athletically inclined so I don't have to worry too much at this point except for the time when it gets too cold. They may have to bundle up very warmly. Kids used to walk 2 miles in the winter in the old days. I (may) have to arrange for rides. Call other parents. That is not so easy as it sounds. I don't hear so well on the phone so it's frustrating to speak to other people and arrange rides for your kids. (Sigh)

I feel like my oldest, who is 12 now, is growing up too fast. She is mature (well, sometimes-she just has an "old" soul) beyond her years. She knows how to fingerspell the alphabet. I am culturally hearing, meaning that I mostly speak with hearing people though I do know sign language. It has been increasingly harder for me to understand other people. My hearing is not what it used to be. My vision is slowly diminishing so it's harder to lip-read. Talk about double whammy!


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