Well, nobody yelled at me, and I'm glad. That's one less thing to worry about.
About the only positive thing I can find in this is the idea that my understanding of people's reactions to a new diagnosis is getting deeper by the minute. Strange how I've known about all these possibilities for so long and only now am I understanding what they mean. Vision loss is like a death...? It has to be grieved like a death.... If I said that to a person who was grieving the death of a loved one, would that person think I was making light of his/her grief? If I cry about it in front of most people, won't I be communicating to them that blindness is the terrible thing they fear? Why am I crying so much? Because I derive meaning from everything. I've been moved to tears by things I saw, connected with an aspect of reality that there is no other way to understand. I was watching the news one day or some documentary or something. I was watching the colors on the screen--bursting flashes of light that reminded me in a way of fire crackers.
They weren't fire crackers. They were real pictures filmed during Desert Storm. There were plenty of sound effects to go along with it, and sounds are frightening in their own way. But I have been somewhat desensitized to sounds associated with war by exposure to movies involving guns and bombs. I had not watched television since I was a little girl--close to 20 years since I had looked at it with my eyes. The fact that I was looking at a war disturbed me greatly. I was no longer fascinated with the lights... I was humbled by the power they represented ... and I was horrified at their reality, at the lives which had been lost. I turned away from the television, weeping as I understood for the first time the seriousness of events which only moments earlier had been "history" or "the news," about as real to me as a novel.
Nine years ago, when I first faced this kind of loss, I was startled by it. I don't remember much of the three months from October, 1991, to January, 1992, during which I lived as a totally blind person. I do remember straining to see anything ... and finding I saw nothing. I must have ached inside then the way I do now. Only then I told no one the truth about how I felt--and apparently I paid for it by "forgetting" so much of that time.
In the spring of 1998, when I again entered this place, I became anxious. I do remember that time... Maybe I remember it too well. My family was moving. There were boxes everywhere, and I was often led through the house in which I had spent 19 years of my life. I was angry. I didn't talk to my parents--they wouldn't have time, I assumed.
It would be eight months before I had any stable vision. There were a few periods when I would have a small bit of vision, but usually if I had anything it was not very functional.
Two weeks ago, my niece and I were playing with a flashlight. She enjoyed pretending we were camping in a forest, and I secretly enjoyed the comfort of being able to see the flashlight. I had been wondering if I was about to experience another loss for several weeks. Things haven't quite been the same since I had the flu in December. Seeing the flashlight allowed me to settle in and dance the denial dance a bit longer.
Now I can no longer even ask the question, "Will it be worth it?" I have nothing to lose--at least nothing more than what I had in 1998. I am afraid. I am forgetting what things look like. My mind is overcome with now, and the memories of things I saw as a child, a teenager, and even during the last two years are slipping away from me. Is my brain removing them so that I can somehow cope? I don't want to lose them, especially if they are all I have left.
I am finding myself almost consumed by this. I am trying hard not to talk a lot about it at home. I think it would drive my parents crazy. Will it drive my friends crazy, too?
My friends are all far away. Some of them know without a word ever being spoken what I need in times like this. They know, and they would give it if their arms would just reach this far. But there they are, and here I am. I don't want to talk. Not really. I want someone to hold me, and I want to cry without thinking that I need to stop before anyone sees me--because someone WOULD see me, and my crying would be a perfectly appropriate thing.
Instead, I write and I try to find things that distract me ... because I cannot handle this. I don't want to handle it. I don't feel strong or brave or even like I have a little faith in the One who is strong when I am weak. I want to wake up and find that this is all a very, very bad dream.
My therapist says I have post-traumatic stress disorder. Sure, I had all the symptoms. Ok, maybe losing a best friend (like a sister) to suicide is enough to make someone have PTSD. But when I think of it, I don't suppose being plunged into this place--I can't even call it darkness--over and over is anything less than traumatic.