My first time going home in the dark. After I had just moved to Purmerend, I could not find my way home. My mother told me that I totally panicked for I cannot remember myself ….. then the ‘Usher ball’ got rolling. Not much later, I went to Amsterdam for a night out. Dark pubs with stairs which I fell off. People thought I was drunk and stoned, because my pupils were big. I made jokes about everything, but I often felt embarrassed and ashamed. With ‘my first time’ I also think about the first day I brought my eldest son to school. So many children, so much concentration and energy needed to pick up everything and not to mess things up. The first time I did not say hallo to a mother and, consequently, she totally ignored me. The first time in the swimming pool where there was no daylight because it was getting dark early. There was only atmospheric light, so that I almost could not follow the lesson.
My life is a sequence of first times. Fortunately it is, otherwise things would be quite boring. However, due to Usher Syndrome first times often are great challenges. Many first times confront me with my loss of eyesight and hearing. And with each deterioration I loose something, notice I can do something less easily or not at all and this can be hard to swallow. Without these first times I would not be the person I am now.
All those first times with Usher Syndrome are not easy, but I fall and get up again, learn my lesson and go on a bit wiser.
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