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. ... 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 on some 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 dots and 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 my reflection in the mirror like I could when I was a child? Will I be able to watch the blinking lights on the Christmas tree without the image becoming 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.
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 many colors, I was sixteen years old. In 1992, I had a fleeting recognition of a pink object, and this summer I identified yellow in 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 a teacher 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? One day Mom noticed me running into things in the house and suggested I put my hand out. Inside my mind, I shrieked in horror. Absolutely not! Why not? Why was this such an awful idea to me?
I think it has something to do with Laura. Laura 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 Laura. 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.
"You feel these hooks here, Laura?" Mrs. Richards asked. "These are for your coat."
Mrs. Richards continued taking Laura around the room, telling her to feel things. That must be it! Laura couldn't see anything in the room. She couldn't see where the window was or where the doorway was.
After Laura's tour, Mrs. Richards came and told me quietly that we had a new student who was totally blind. "I know," I said.
My experiences with totally blind children at the school for the blind had been similar. They could not distinguish between their skirts and a slip. They did not run and play outside or ride the Big Wheels. Most of them could not read and did not speak to other people. One of them cried constantly.
I loved Laura 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 Laura. 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 Laura which I cannot tolerate. I looked down on her. Somewhere within myself I thought of her as less capable, needy... I pitied her. Laura'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 Laura and not understand that a fully sighted person fears becoming like me? This is a bitter pill to swallow.
Most people experience vision loss gradually. Their experience is similar to what Charlotte Sanford describes in her book, Second Sight.
I was like the men and women whose hearing gradually becomes impaired in later life. Without being aware of what is really happening, they become unable to hear high tones, such as bells and whistles, begin to misunderstand conversation, and grumble about people who don't "speak up," and keep turning up the volume of the television, complaining that the words aren't clear. In exactly the same way, my world was becoming shadowy...
My experience was different.
I've had a difficult time pinpointing a time when the vision loss began. Perhaps the few aspects of the environment which I was able to see were, for the most part, stable. Perhaps they could be detected by other senses--voices heard, a brief movement of air when someone passed me, etc--and my mind created a general image which I thought I saw. Or perhaps the world just became dimmer and smaller. Maybe all of these things played a part. In any case, it usually took returning to an environment where I had not been for some time or having something about the current environment change or present the need to see to cause me to realize that vision had been lost. It made the losses feel so sudden!
Then there are the fluctuations. On some days I can still perceive some very distorted version of the world I once could see. On other days, I cannot see anything. Is this because my vision is worse on those days or because the days are not as bright as other days?
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