How much do I see?

If you were to meet me on the street, your first impression would probably be that I was blind. I conform well to the stereotype – I have a white cane, I usually wear dark glasses that completely enclose my eyes, and on my left hand side you’d see Nino, my guide dog. It’s obvious that I can’t see very much. On the other hand, if you were to come across me in a quiet place where there wasn’t too much movement, it might soon become apparent that I see rather more than you expected. So, it’s not surprising that I regularly get asked the question: how much can you see?

To someone who has always been able to see this seems like a simple, logical question. But for someone with a visual impairment it can be anything but simple to answer. And  doubly so if you have CVI.

I still haven’t found an easy answer to it. In fact, it takes a very long time to explain to someone how I experience the world now. I just know that if I tried to explain it to the Andy of four years ago, he would have a hard time understanding it. Still, I might as well try.

Much, a little, nothing?

The simplest answer to how much I can see is this: sometimes I see a lot, usually much less, and sometimes nothing at all.

I don’t really know what my vision is going to be like from one day to the next or from hour to hour. Sometimes not even from minute to minute.

Sometimes, most often when I’m outside in the street, something sudden and unexpected will happen that overwhelms me. It could be a pneumatic drill at roadworks, a siren or brightly flashing lights . And suddenly I can’t see anything at all. I’m temporarily completely blind. My vision has always returned up to now , but it happens slowly. Usually it takes quite a long time before I can continue on my way. The first time it happened was also the first time I went to the busy centre of Leuven with my wife during my rehabilitation. Fortunately, I wasn’t alone, but that first time I didn’t know if my sight would ever come back. As you can imagine there was a bit of a panic!

The same thing occasionally happens indoors if it is very busy around me. Mostly my life’s not like that though. Those are the most extreme moments, and of course I try to avoid them as much as possible. But unexpected things always happen when you don’t expect them to…

When I’m sitting still and everything around me is calm, I sometimes see quite well, though not nearly as well as I used to. And sometimes I see very little at those moments too! Usually I’m somewhere between the two extremes. As a rule of thumb, the more that is happening around me, the less I see.

Blind or not?

My grown-up children were the first to call me blind to my face, and I didn’t like it at all. Since then I have learned to describe myself as blind, just to keep it simple. If I didn’t, I’d be constantly having to explain everything all over again.

So yes, I am a blind person. I’m completely blind – sometimes. But I do see a little – usually. Life can be complicated sometimes!

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