During the first weeks after the surgery in 1998, my eyes were dilated with Atropine so that the movement of the iris would not cause pain during the time when my eye was sensitive. I experienced a pattern of light sensitivity followed by adjustment and visual improvement wimilar to the pattern I had experienced in 1992.
I had forgotten about this pattern, and when the brightness began to fade after the first week I became afraid that I was experiencing visual loss and should report it. I also began to experience urges to harm myself. These urges were frightening to me. I had no rational desire to harm myself. After I realized that I was following my normal pattern of recovery, I expected the urges to subside, assuming that they had somehow been related to the fear of vision loss.
The urges did not subside. I began to look for information about my eye medications online. I also called the optometrist who had taught a course I took about eye anatomy and pathology. He was very alarmed to know that I was taking Atropine and told me that it could cause a number of neurological problems as well as severe depression.
I began to write down the times when I took my various medications and the times when the urges to harm myself were most intense. Finally, I was able to see that the urges were strongest about two hours after I had taken the Atropine. I obtained permission to stop the Atropine, and the urges vanished. I relaxed and began to enjoy the positive results of the surgery.
I continued to experience visual improvement for several months. I was amazed at some of the small objects I could see. My parents shared in my amazement as I discovered that I could locate individual bites of food on my plate and watch ground beef change from red to brown as it cooked. I kept family and friends informed via an online journal, exclaiming over small things like the food on my plate as well as big things like the first snow on New Year's Day, 1999.
Regaining vision is in some ways similar to losing it. It requires a person to adjust and cope with different kinds of input. I had no assistance with this adjustment process, and I found very little information in books or on the Internet about people whose sight had been restored or adjustment to sight restoration. Charlotte Sanford and Sheila Hocken's books were comforting to me, and I found a couple of old books and articles about "visual rehabilitation." However, none of these resources provided real guidance in just how to go about learning to use my vision for me.
I needed to learn all over again how to use my eyes and how to interpret what I was seeing. I learned most things through trial and error. Because I did not know how reliable my vision was, and because I had lived so much of my life with less vision, I relied heavily on my sense of touch to confirm anything I thought I saw. While browning meat, I relied on the texture and smell of the meat while watching the change in color. When I saw an object on a table, I touched it in order to identify it.
The most difficult aspect of adjusting to the restored vision was the difference between my perception and my memories. While preparing for surgery, I had basked in memories of colors and objects, noting every detail of the memory from the size of the object to the brightness of the color. However, what I saw after surgery often did not look like what I remembered seeing as a child. Since I lived with my parents, I was exposed to many of the same objects which I had seen during my childh ood and adolescence. I relied on visual memory to help me make sense of what I was seeing now; and I was troubled by the inconsistency. Furthermore,, I was troubled by my reaction to the concept of losing my vision. Struggling to make sense of my thoughts, I wrote them down in a journal.
I'm kind of disappointed. Things don't look like I thought they would look. They don't look like I remember them looking. This doesn't mean I am regretful, but it does mean that I'm having to somehow reconcile the differences between my memories and the present. Does the table look like it looks now, or does it look like it looked back then? And now that I am old enough to understand that there is a difference, is the table supposed to look like it looks to me, or is it supposed to look like what other people see?
Questions like these really drive home the point that reality is not what we see. What we see is merely a certain perception of reality which can change. I've questioned my reasons for having the surgery and my reasons for having difficulty with vision loss. It wasn't so much that I could not live with the loss. I could. What was I trying to hold on to? My perception of reality? Something from my past in a time when I was leaving a lot of my past behind me? Something that would somehow help me to make sense of all these other changes? If I could see the table and realize that it looked the same as it did yesterday or last week, would it help me to make sense of the fact that it is still the same table even though it is in a different house?
All of this seems very silly when I write it out here, but it's what I've been thinking. I am and have always been a very visually oriented person in spite of not having much to work with. When I organize a mental map, I see the images in my mind and rearrange them. Of course, I'm rearranging my own perceptions of images, but it is still a visual process. I am not automatically rerouted to using tactual or auditory processing methods, even though I do both of these quite well. Losing the vision was more an issue of losing the input into my preferred channel of processing than an issue of losing the ability to function in the world. I held onto something--a set of memories of what things "were supposed to look like"--and put all my hope in this surgery. Things would return to "normal" after the surgery. Everything would look right. And it isn't that way. Some things do, and some things don't. Why? I will never know. It's just the way it is.
Over time, I adjusted to the conflict between memory and the present, and I built a new frame of reference based on the present. I asked Dr. Trese whether he thought i might be able to learn to read very large print and identify objects visually again. He said that most people could not learn these things with such a small amount of vision but that I might be able to with self-discipline.
One thing hampered my progress in learning to use my vision. I was prone to temporary vision loss which could indicate that my body was rejecting the cornea. I was to report any vision loss and see the doctors very soon. However, I was often uncertain whether I had lost vision or whether some aspect of the environment--lighting, weather, or even my own fatigue--had changed and was causing me to have difficulty seeing. I eventually learned to evaluate visual loss not only by assessing the contrast I could perceive but also by noting my ability to locate specific types of objects. This enabled me to know when I needed to report changes in my visual functioning. It also allowed me to set fear aside and enjoy some things I had never seen before.
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