Vision loss was nothing new to me. I had experienced it several times in my life. Furthermore, vision loss did not require me to learn any new techniques for reading, writing, moving around, etc. I already knew them.
I was born three months prematurely in 1972. The fact that premature babies often developed eye problems which caused legal blindness was not unknown then, but my parents were not prepared for the possibility. A diagnosis of blindness due to what was then called retrolental fibroplasia (RLF) came as a complete surprise to them when I was five months old.
The fact that I had some usable vision was also a surprise to them. As I grew older, they learned about what I could and could not see by observing my play and reactions to visual stimuli. Part of my education involved learning how to use the vision I had to get information about the environment. I was able to recognize shapes, but my efforts to learn to recognize color resulted in frustration at my inability to match colors with names.
I learned the print alphabet easily using flash cards and magnetic letters made by PlaySkool. By the time I entered kindergarten, I was already familiar with the alphabet and numbers 1 to 10. However, doctors had warned my parents that people with RLF often develop additional eye problems, or complications, and that I could lose my vision and might even need to have my eyes removed someday. When i entered school, my parents decided that I should learn braille. By the time I was in the second grade, I was a fluent braille reader and had also begun learning to use a white cane.
I developed my first complication when I was eight years old. One Friday night, I woke up from a deep sleep with a burning, stabbing sensation in my left eye. My parents called the ophthalmologist, who recommended that they give me aspirin and bring me to the office first thing in the morning. While we waited for the doctor that morning, my mother noticed a white spot in my eye. The doctor diagnosed glaucoma in my left eye and prescribed medication for daily use. He diagnosed a cataract in my right eye which had reduced my vision dramatically--and he recommended emergency surgery in an attempt to save my remaining vision.
I don't remember much about the events leading up to the surgery, but I do remember opening my eyes for the first time following surgery in which the doctor had removed my clouded lens.
For two days the doctor had coaxed and begged, bribed and ordered me to allow him to pry my eye open and look inside with his retinoscope. I'm sure I wondered then, as I sometimes still do, if he had any idea how painful his "little bright light" was to me. Without the clouded lens, the light was even brighter. Eventually, I took things into my own hands.
On the third morning, a nurse gave me a sedative to help me relax. I fought it. When the doctor came in, I was still wide awake, and I had a plan. You want me to open my eye? I thought. Then you have to make me want to. "No lights," I ordered. "Open the curtains and let me open my eye by myself."
I held my stuffed white cat and began willing my eye to open in spite of the pain that worsened every time I moved it. Finally, I succeeded.
Was I imagining, or could I really see my cat in my lap? There was only one way to prove that this was real. I had to go to the window. I had to go out in the hall. I needed to see what kind of light bulbs were there. I hadn't seen them before. ... Sure enough, they looked like the bulbs at school. I didn't remember losing the vision, but I knew then that I could see what I had not been able to see when I arrived at the hospital. "I understand now," I told my mother.
When I was 14, I faced a new kind of vision loss. I remember the first incident very well. I left the house where I was living for a few weeks on the campus of the Texas School for the blind and began walking in the direction of the dorms where some of my friends were living. We were planning to go to the recreation center to play some games. My route took me past a residential instructor's house, two houses that were located directly across from one another on either side of the sidewalk, under some trees and across a little bridge, and across a road with hardly any traffic.
I walked along, tapping my cane from side to side and watching the trees get closer. Suddenly, I could no longer see them. I knew I was not under them yet--the sun was still beating down on my shoulders. But I could not see the sun either.
I stood still for a moment, wondering what I should do. Something was wrong. All I wanted was to get back to my house and rest and find out what was wrong. I could play games with Debbie and Melanie later.
I carefully turned around so that the sun beat mostly on my left shoulder, and I picked my way past the two houses where the students lived and past the residential instructor's house, locating the intersecting sidewalks with my cane, and finally reached my own sidewalk.
Within a couple of hours, my vision had returned to its normal state. However, I continued to experience the phenomenon several times a week. Without warning, the world would disappear behind a gray curtain that I could not remove. Although the condition was diagnosed as ocular migraine, I could not stop thinking about Emily.
Emily and I had met at summer camp when I was 13. Emily was losing her vision gradually as a result of glaucoma. She experienced intermittent vision loss, and she never knew whether it would be permanent.
I couldn't stop thinking of Emily because I knew that glaucoma was a complication of my eye condition. In fact, I already had it in my left eye, and I could see nothing out ot that eye. Would I lose the vision in my right eye just as Emily was losing her vision?
I became used to the gray curtain's coming and going, and eventually it stopped coming as regularly. In fact, it stopped coming for such a long time that I forgot about it--until my second year of college.
Early on the morning of October 4, 1991, I put the harness on my black Labrador retriever, Elli, who had come to be my guide that summer, and set out for class. It was a chilly morning in Indiana, and I looked forward to getting the walk across campus over, even if it was a short walk. I headed out the side door of Myers Hall and down the sidewalk that led between Myers and Morrison Hall, where most of the freshman girls lived. Once I reached the front of the buildings, I would turn right and head for the main walk in front of Morrison, leading to the street where I would cross over to the main part of campus.
But something was wrong. The pavement under my feet was not concrete. It was asphalt. Where was I? I must be in the parking lot! I must be between two cars. But I should be able to see over the tops of them. Why couldn't I see over the tops? Why couldn't I see the sky? It wasn't sunny, but it wasn't dark either.
The gray curtain had returned--and this time it did not go away
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