My memories of my early years are very hazy, both in the literal and figurative sense, and there is a very good reason for that. When I got my first pair of glasses I was already six years old , which is quite late. I was raised by my grandparents, and here you can read how they first discovered exactly how bad my eyesight was.
I was born with Duane’s syndrome. That is a rare condition in which two of the motor nerves behind the eye are reversed. I cannot make my left eye turn further out than the center. If I want to look to the left, I have to turn my head, or else I use my right eye. Like many people with the syndrome, I also have a congenital abnormality of the eyeballs – they are not round – not even close – and in my case this means I can’t focus properly at any distance without glasses. I do see things a little better up close, but that’s mainly because they appear larger. On top of that, the shape of both eyes is very different, so my brain cannot merge the two images into one. Consequently, I have never experienced depth perception, although fortunately there are other ways to determine distances.
One eye at once
More importantly, I learned to see with only one eye at a time. And because my right eye saw a little better and was more mobile, I primarily used the right eye instead of the left. That didn’t affect the eye itself, but it did mean that the part of my brain that handles vision in my left eye never developed properly. My left eye today, even with glasses, remains virtually useless. The part of the brain that takes care of my right eye also deviates from normal, because my right eye had to take over the job of the left eye to a large extent.
Fortunately, I experienced little inconvenience from this as an adult because my right eye was correctable, albeit with very strong glasses. I was allowed to drive for thirty years, but I knew that when I got older and my eyes got weaker, I probably wouldn’t be allowed to anymore.
But fifty years later, for the doctors in Pellenberg after my stroke, these abnormalities would cause a great deal of confusion. After all, they weren’t aware of this history, and I did not yet have the words to explain it. It wasn’t until late 2017 that I first heard about Duane’s syndrome. After my stay in Pellenberg, I was referred to Low Vision at UZ Antwerpen, as they have more experience in adult neuro-ophthalmology there. There, among other things, they established this diagnosis. Through long experience, of course I knew all about the problem and the consequences, but I had never heard of the cause or the name!
The syndrome also caused both my eyes to never quite point in the same direction. I was very often asked what exactly I was looking at: “Are you talking to me, or…?” In addition, I found it impossible to look someone straight in the eye, which also often gave the wrong impression.
Learning to read
I learned to read before I went to school, and I could often be found with my nose in a book. Literally, because I had to hold the book so close to my eyes, and sometimes I still do!
My brother is a year older than me, so he went to school a year earlier than I did. When he started learning to read, my grandma included me, and it seemed to work. One day we went to pick him up from school. His teacher had a hard time believing my grandma when she told her that I could already read well. I was four years old, small for my age, and besides, it was obvious that I couldn’t see much. But she gave the book to me anyway, and I began to read….
I loved sitting down with a good book to read, and so many years later I still do. Perhaps it also had something to do with the limitations imposed on me by my poor eyesight. But like any small child, I needed exercise, and I was often difficult to stop. And that often got me into trouble. Always and everywhere bumping into things, leaving torn clothes, scratches and grazes. And of course, I always wanted to go full throttle…
Careful with the new car!
My brother and I had a scooter that we rode in the garden or the driveway, and of course I was always eager to join in.
One day my grandfather got a brand new car from work. It was a dark blue Ford Cortina. All Saturday morning he had worked to install fog lights under the front bumper. In the afternoon, we went outside to play. “Careful with the new car!” shouted Granddad. A few minutes later I grabbed the scooter and went for a ride. I heard a startled sound from my brother, felt a crash, and heard the tinkling of broken glass in the driveway. It was not my finest hour…
Whenever I walked anywhere, I always held on with one hand to a wall, a fence, a hedge – anything that didn’t move. The result was not surprising: I always had dirty hands, and there were always cuts and splinters in my fingers. Then I would come home and hold my dirty hand against the clean wallpaper!
I was constantly told to keep my hands away from the wall. It was well meant. They just wanted me to walk normally, but the reality was that I couldn’t see well enough to walk normally. My grandparents knew, of course, that I had problems with my eyesight. But they simply hadn’t realized yet just how how bad my eyesight was.
Telling the time
But the year I learned to tell the time, all that changed forever, and it was a story my grandmother often told in later years.
We went on holiday every year to Skegness, a seaside town on the east coast of England. There is a clock tower there, perhaps twenty meters high. My grandmother saw a chance to practise. “What time is it?” she asked. I replied that I didn’t know.
“But there’s a clock over there,” she said.
“Where?” I asked.
“There, at the top of that tower.”
“What tower?”
There was silence.
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