Tuesday, January 02, 2007

Closed In

I don’t want you to think I am unreasonable. Or selfish. I am just telling you how I feel. It’s not like I carry a big chip on my shoulder. I am a friendly person. I can be considerate of others. I have been re-reading this post and trying to see how another person reading this will think. But this is just something I feel. I can’t change that.

Narrow spaces and hallways never bothered me before. I just walk through.

Now it seems that the narrower my field of vision gets, there’s an almost a claustrophobic-like feeling to have to walk through a narrow hallway. I want to tuck my arms against my body in a protective way and walk a little bit more slowly. I feel like I must stay in the center of the hallway. I feel closed in. I am scanning all over-watching my feet, watching for anything that may be against the wall. A chair? A printer on some sort of stand? Anything. I feel funny as some sort of “flight or fight” defense mechanism sends warnings to my brain of danger of bodily harm.

If I walk in a larger hallway, if it’s empty (hardly anyone or anything in the hallway) I will be confident. I will stay in the middle, though, in case someone does come out of a corner or doorway. But if there are some people walking, I want to slow down and stay closer to the edge. It just depends on the traffic.

Those who know about my Usher will turn around and glance at me. They worry I will hurt myself.

I get resentful. I resent having defective genes. I resent people treating me like a handicapped person. I do not like this at all. I don’t want to feel this way. I hate it.

I try to stay positive. I try to keep things light.

There are days I carry a dark cloud of depression around me. Just hating what is happening. Hating the way people look at me. Other days I am flippant, confident. I either put up a good front or I am strong. I am ME.

This is a frustrating eye disorder to live with. There are constant adjustments-major life-altering adjustments, such as giving up driving privileges and making changes to make things easier for me. The worse is losing the independence.

Sometimes I think that I should feel lucky because I am not going blind overnight. I can still enjoy looking at things and do things. But sometimes I think it must better to lose it all than to deal with the constant adjustments. The constant changes in my vision. But I know, deep down, I do want to see. As long as possible. Hopefully forever.

I hate it when others think I am worse than I am. That I need help. I only want guidance when it’s dark out or in dark places. I don’t like it when someone wants to take my hand and guide me when it’s not dark. It makes me feel like a liability-an accident waiting to happen. Sometimes I let them take my hand only because I know it makes them feel better so I just swallow my pride. Why make a big deal out of it? It just makes them think they are keeping me safe. I tell myself to just let it go. They can't see through my eyes and see what I see. I've tried to describe it the best I could. It's hard for them to imagine. But I can say that the brain seems to fill in the space that I can't see so that it seems like I can see more than I really do. Maybe that comes from scanning. You know it's there.

I understand. I really do. Maybe if I were old, it wouldn’t seem so bad to me...maybe. (Now that I think of it-it must be hard on the elderly to have to depend on others-knowing that they were once able to do things effortlessly, but their bodies are older and can’t do certain things anymore.)

Not everybody treats me this way. But for those that do, I just feel paranoid.

If I watch the doorway as I come to it, I can pass through it. If I get distracted or someone talks to me before I walk through that doorway, I get disoriented and need to look for the doorway so I don't bang into the doorframe. It's that "distance thing" I like to call funnel vision (someone else thought of it and I love it because it's so true).

Please let me keep my dignity. I am not totally blind. I don’t like to call attention to myself. I can read 12 font size just fine, though I have moments I may have to read it again because I am not paying attention. That can happen to anybody. I can get around. I don’t even use the cane (yet). I still have central vision. I can see distances. I have a harder time seeing things up close. My "blind spot" is much wider and noticeable the closer things/people are. I may scan more to make up for the field of vision that is lost-look at my feet, dart my head from side to side for any obstacles, and repeat the action-over and over. I cannot always keep looking straight ahead like people with normal vision because they have more peripheral vision than I do, thanks to the killer DNA genes that send self-destructive messages to the rods and cones and photoreceptors of my eyes.

Just keep your distance. That’s all I ask. (“Distance” with help, but also “distance” because I see better when something/someone is farther away.)

I am the “touchy-feely” kind of person. When I laugh, I want to put my hand out on the other person’s upper arm. When I see that they are sad, I want to touch their upper arm. I don’t know why I do this. (It seems ironic that I can be like this, but want my distance when it comes to my Usher condition.)

If I want help, I’ll ask.

I feel closed in enough as it is.


At Fri Jan 05, 11:36:00 AM , Blogger Sara said...

Hi Shari, thanks for this post. I think you are amazingly positive. You are an inspiration. I'm glad you have shared these thoughts. It can be so difficult to understand what someone else is going through and difficult to know what is the right thing to do or say. The obvious thing is to ask and find out but somehow we don't often seem to do that. I'm not sure why.


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