The first time that I realised more and more that something was wrong in comparison with other children was about 1996. For all I know, I have been severely hard of hearing from childhood and I have worn glasses since I was about six years old. I also used to stumble over things and then I usually was told, ‘watch where you’re going’.
The ball slowly got rolling when I went on the well-known camp with group 8 in 1996. I was about twelve years old. I like the camp very much and exciting, and I still have good memories of it. In spite of this, it was not all positive. In my memory this also was the first time I felt that the notion of night-blindness really became visible and was given a place. This was an important moment to me. When I got home from camp, I immediately said that I was nigh-blind. I told about my negative experiences with the ‘night game’, which was first played in half-light and eventually in the dark. Then I stumbled over tree roots, ran into trees and the like.
I have no idea where I got the term ‘night-blindness’ from, but I was absolutely sure about it. After all, I could not see well in the dark. Of course, I could not see in the dark before I went on school camp, but that very moment during this camp was so clear in my memory, that it slowly set things in motion.
A few years later, when I was on lower general secondary education, my mother got into conversation with an ophthalmologist. She listened to my mother’s story and asked my parents to bring me to her. When we came, it was the first time that I was subjected to a field of vision test. My parents were quite shocked about the result. They had known for some time already that my eyesight was below average, but facing reality actually is a step further. This was the first time that the ophthalmologist mentioned the double impairment Usher Syndrome! After a look on the Internet everything seemed to fall into place. A short time later, in May 2000, I was indeed definitely diagnosed for Usher Syndrome in the Oogziekenhuis Rotterdam. Later it was also determined that I have type 2a.
By now, we are many years further and there are still first times for many things. Also walking with a white stick for the first time was strange, difficult and special. However, everything is given a place every time again and I keep trying to maintain a positive look at life. Fortunately, my glass has mostly been half full so far.
Tim de Reuver
#stopUSH and make our dream come true!