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Thanks for visiting my diary. I've been journaling since 1984 and have chosen to share some of my entries online. They are not all positive thoughts, but I hope that reading them might be a blessing to someone who needs encouragement.
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The first two weeks of this year went so well. I guess I had to get something else thrown into the picture sooner or later. But I didn't think I would react like this.
I remember in my classes we talked about vision loss being like a death. I didn't think that applied to me--I was already blind. Losing this little bit wouldn't be such a big deal. I wouldn't have to learn braille or how to use a cane. I already knew.
But in 1998 I found out that it did apply to me. I lost the vision, and I was terrified of becoming like the children I knew when I was very young. I now know that in addition to being blind they also had autism. I know that I am the same person with or without my vision. But that didn't stop me from pursuing the surgery which gave it back to me.
I had questions then about how I would react if it didn't work. I guess I tried to settle the issue in advance. I would be glad that I had seen for a little while.
I've known for several months that the transplant failed. The reattachment of the retina obviously worked. I still see objects and bits of color sometimes, but it's all clouded over and bright light hurts. I know what it means. It means I can no longer put off seeing another cornea specialist.
But what if he won't do the surgery? And if he does, what if it fails? What about working on Tuesday mornings? Is that worth not having surgery? Last week I thought I'd like to keep my "baby days". I'm having second thoughts about that now. How long can I endure not knowing? I remember being disgusted, even as a little girl, when the makers of the "Little House on the Prairie" TV series had Mary screaming on the day she opened her eyes and couldn't see and then sitting around refusing to see people for weeks afterward. But I feel like screaming, and I don't want to go anywhere. I'm afraid I'll cry and people will ask why. It isn't that I don't want them to care. But these are people who don't really show much interest in me as a person. If they were going to care, why haven't they already done it? If I'm going to fall apart at the seems, I'd rather do it in front of people who know how to put me back together--or, if I can't, then I'd rather do it by myself.
What about all the times I've told parents that it's ok to be blind? What does my falling apart say to them? No matter how much I thought I had come to believe it is ok, I can't stop these feelings.
I'm on an email list for people in their teens and 20's with glaucoma. Some of them said they turn off lights and imagine what it will be like to not be able to see. I tried to explain that blindness is not like being in the dark. When you're in the dark you can see that it's dark. It's black--sometimes just a little black like on an ordinary night and sometimes very black like on a night when there's nothing but clouds. I can't see black or white, night or day, now. My eyes are covered with a film that has no color. How long was I in denial as it got worse and worse?
What if the surgery doesn't work? What if I lose what little I have? At some point that was a valid question. It isn't anymore.
I'm going to call doctors today. Oh, God, please don't let anybody yell at me. Yelling isn't really the right word, but You know what I mean. And please let me see someone soon.
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