I took a walk with my dad today. It was a beautiful day, and I wanted to take a good look around. Surgery is on Tuesday, and once that's done I will not have the use of my right eye until the second stage is done, probably in late May or early June.
People ask what the prognosis is... There's not really a way to know. I can only refer to what I was able to see when my cornea was last clear. But one of the things I learned after my procedure in 1998 was that things may not appear the way I remember seeing them. I will learn to use the vision again, whatever it may be. But I can't go in expecting to see what I saw as a child or even what I saw six years ago.
Describing my visual ability is hard in the first place. I don't think I could do a better job now than I did in 1998. I wrote about it in my journal on December 2:
... The other day I was able to tell that the two little lights above the bathroom sink were both burning. This is something I have not been able to do for several months. Everything has been very blurry and fuzzy. I have no way to describe it. I've heard friends use the term"murky". I do not know the meaning of this term. But I find myself wanting to try to describe the changes I have experienced over the years. During much of this time I did not realize how much change had taken place--not until I thought about it and compared what I see now to what I saw then. I thought that today I could describe what I see now, and perhaps tomorrow I can try to describe what I saw then. Instead, I seem to be stuck looking for a word which would convey an image to a group of people whose world I cannot understand.
I thought of trying to describe it in terms of texture. That is something with which I am familiar. The advantage of doing this would be that my friends who have never seen might understand onsome level what vision and vision loss are like. But will a sighted person relate to this comparison? I can detect things with my fingers which are not even noticeable to the eyes unless the observer pays very close attention.
When people see me reading a braille book, they often want to touch the pages and are amazed that I can distinguish those minute patterns of dots. To some of them these dots all run together. I suppose I could say that this is how the visual world appeared to me during my childhood. I could distinguish the shape of large objects if there was some space between them. In the same way, a sighted person can place her fingertips on the braille page and determine that there are spaces between some of the groups of dotsand that one group of dots might be more dense or occur in a longer string than another group of dots. The denseness of the dots I will compare to the amount of contrast between a given object and its background.
If one pushes down in a certain way on the braille dots, they will begin to blend with the page--to be "erased". I have perfected the technique of erasing to the point that when I took a pilot test for teachers of visually impaired students during my time spent in a teacher preparation, my erasures were not detected by the graders. Such complete erasures might be comparable to a complete loss of vision. Today if I were to compare what I can see to the reading of braille, I would say that someone must have tried to erase the dots from the page because they just don't stand out much any more. There is very little contrast. I know somehow that I can see light, but I know this only because staring at it hurts my eyes.
I wonder what it will be like to see again if the surgery is successful. Will things look as I remember them looking? Will I be overwhelmed with the pouring in of light and be unable to put any meaning to it? Will the sharpness of contrast available to me restore some kind of meaning? Will I have the ability to see myreflection in the mirror which I had as a child? Will I be able to watch the blinking lights on the Christmas tree without the imagebecoming blurred? Right now I cannot see them at all. The few things I can still see disappear in a blur after a moment of looking at them so intently.
These are the things I want to write about. It's important to me to preserve and communicate my experience of blindness at all levels. There have been times when images, though distorted, were pleasing to me. There have been times when the gblurry glare which I've attempted to describe today was completely unavailable to me. These were, perhaps, the most frightening times for me. But pleasant or frightening, all of these things make up my experience, and I feel that they are important.
A few days later, I began to talk about my childhood memories of seeing--and I was also compelled to examine the impact of some events from my childhood on my attitude about blindness.
Some days my memories of seeing are very clear. Other days I am afraid that I will forget what seeing was like. I don't know why this matters to me. It just does. I always took some kind of pleasure in the fact that I could see. I don't know that I thought of myself as not really blind. Perhaps I did. I hate to admit that. It's so crazy! Of course, I was blind. Just not totally. I suppose that at some point someone or, most likely, several someones treated me with pity, assuming that I lived in a world of darkness and that I could not possibly know what my environment was like or something. Why else would I not want to be blind? Maybe it just had something to do with the fact that I knew that when someone said, "Oh, you're blind," it usually meant that I was not like them.
Was I worried about being like other people at such a young age? I usually assume that knowledge of my differentness set in around age seven. I suppose it was developing during all the time before and that really what I am remembering is that age seven was when I began to experience the extreme feelings of isolation and depression that are so familiar to me now.
In any case, seeing is an experience I am glad to have had and wish that I could describe. There are many reasons I want to put it into words. Sometimes I think that putting it into words will help me to preserve the memory in case the surgery does not work. But there are no words to describe those pink "flowers"--ok, they were weeds--which I loved to stare at in my grandmother's yard. There are no words to describe my thoughts as I went out into the back yard one day and counted seventeen huge mushrooms with my very own eyes. I could not see the stems. I could only see the huge round white tops. I wanted to touch one. I wanted to know if they were fuzzy. They looked to me as though they would be fuzzy. What made them look that way? Maybe I was wrong. In a moment of excitement, I pointed to a pink rubber ball and said, "There's another one!" Could I have known the difference if I had looked closely? Or was I simply judging by the fact that it was a bright, round object?
Colors were difficult for me to comprehend or identify. I knew that black was a very dark color. Blue was not so dark, but red and blue were difficult for me to distinguish. Green was a rather pale color, and I could not stand grey. Orange was less pale than green. I don't know where pink fit into the spectrum, but I know that it is a familiar color to me. With my limited perception of contrast, it takes a lot of comparing to distinguish pink from white or yellow. The last time I clearly recognized any colors, I was sixteen years old. In 1992, I had a fleeting recognition of a pink object, and this summer I identified yellowin someone's shirt. However, most things today either appear or don't appear. It is even difficult to see my black cat on a white blanket!
The world is becoming more and more dim. What causes this dimness? Is the whiteness of my cornea preventing enough light from getting in and resulting in some kind of fog effect? The cornea specialist doesn't think so. He told me that even people with very damaged corneas should still be able to identify a red light. I've never identified a red light. In fact, I remember ateacher showing me three lights over and over when I was six. One was green, one blue, and one red. The green one I could identify on the spot. I could only distinguish between blue and red because the red one buzzed.
The cornea specialist's comment made me feel angry and confused. Other doctors who have seen me over a period of time have expressed concern at my loss of vision and alarm at the condition of my cornea. Who do I believe: a cornea specialist who has seen me once or an ophthalmologist and optometrist who are not cornea specialists but who have seen me enough times to note the changes in vision and in the appearance of my cornea?
Why is losing this vision such a frightening thing for me? The other day Mom noticed me running into things in the house and suggested I put my hand out. Something inside me shrieked inhorror. Absolutely not! Why not? Why was this such an awful idea to me?
I think it has something to do with Kim. She was one of the first people I ever met who was totally blind. I was seven; she was nine. I remember her first day of school like it was yesterday. I sat doing some work in the resource room for visually impaired students. The other visually impaired students (all of whom had enough vision to read large print) were in their respective "regular" classrooms. Someone came in with another girl. Mrs. Richards, the resource teacher, began talking to the other girl, walking around the room with her, showing her where to put her coat. The girl's name was Kim. Something was wrong with her. I just knew it. There was something about the way she talked. She wasn't relating to things or to Mrs. Richards like other kids did.
"Do you feel these hooks here, Kim?" Mrs. Richards asked. "These are for your coat."
Mrs. Richards continued taking Kim around the room, telling her to feel things. That must be it! Kim couldn't see anything in the room. She couldn't see where the window was or where the doorway was.
After Kim's tour, Mrs. Richards came and told me quietly that we had a new student who was totally blind. "I know," I said.
I loved Kim dearly. She was always nice to me and never ignored me. I could help her instead of always being the person who needed help. But I will never forget walking with her to the bathroom at school. I will never forget how slowly she walked and how she was always groping. I don't want to be like that. No matter how many totally blind people I meet who are not like that, I cannot shake the fear that I will become like Kim. Acknowledging this fear hurts. It reveals my attitudes about blindness. How can I have this attitude when I know very well that I can do things without vision? I've been walking around with a cane for a long time. I've been doing most things without vision. But I had just enough to give me clues about the environment and pleasure in looking at certain things.
More than that, this fear reveals an aspect of my attitude toward Kim which I cannot tolerate. I looked down on her. Somewhere within myself I thought of her as less capable, needy... I pitied her. Kim's difficulties were not caused by her blindness. They were caused by mental retardation. But in any case, there is no excuse for me to have thought of her in this way. How can I acknowledge my fear of becoming like Kim and not understand that a fully sighted person fears becoming like me? This is a bitter pill to swallow.
I had had previous encounters with the fact of my limitations, and some were negative; but unlike the incident with Kim, they resolved fairly quickly. As a blind child, I was not able to see (and thus come to understand) people doing things with their eyes that I could not do. Because I had some sight, I thought that all people saw things the way that I saw them. Going to kindergarten offered me my first opportunity to begin to understand the implications of blindness for me.
I had a playmate from church, Laura. Laura and I loved to play with books. I remember taking them down from her father's bookshelves and sitting side by side flipping pages. I was often attracted to the dark blobs which I knew were pictures. Of course, I didn't know what they were. It didn't matter. Neither I nor Laura could read, so we made up our own content; and since we were flipping through big, fat grown-up books it didn't matter what we were "reading". But when we started school, Laura became able to point out things like the fact that there were no words on that page. Our "reading" wasn't just play anymore. Laura was beginning to read; I was pretending.
Soon Laura and I "grew apart". I'm sure there were a number of reasons for this, but as a six-year-old I only knew that she didn't talk to me at church anymore and she didn't want to play with me when her family came to our house. I could not verbalize my feelings, but I remember wondering if it was because I couldn't read. Perhaps Laura recognized my difference too. Maybe I was boring to play with now.
I soon learned to read in braille; and although my friendship with Laura was not rebuilt, I gradually stopped thinking of myself as inferior because I couldn't read print. I greatly enjoyed having a closed-circuit television for a couple of years and became very upset when it was taken away because reading print was too laborious for school assignments--I wanted to read the same books from the library that my peers were reading. Much later, getting a scanner allowed me to resume reading most things independently. Nothing addressed my fears of becoming "like Kim" until I confronted them in 1998.