Photo shows Andy wearing black running vest and white shorts with friend and long-distance running partner, Rachel in foreground, wearing blue vest.

My Life With Nystagmus

Friend of LOOK Andy Smith tells us about living with Nystagmus, ahead of Nystagmus Awareness Day.

I was born with congenital Nystagmus, so my current type of vision is the only type of vision I have ever known.

It’s hard to say if my vision is bad, because I don’t know what I should be able to see; my glasses only help a little bit.

On a day-to-day basis, I can function fairly normally. I am independent – I have two teenage sons and a wife, who support me when I ned them to.

People will see my eyes moving and think I’m not looking at them or that I’m not concentrating, but in fact, I see straight ahead, or to the left and right, as most people do. People also ask if what I am seeing is moving about – like my eyes. The truth is, I don’t know that my eyes are moving. I’ve tried seeing them in the mirror but I can’t.

The Difficult Bits

The things I find difficult, are: reading ingredients on packaging or instructions for how to cook things. My kitchen always has a magnifier in the top drawer. My family always offer to read things for me, but I have something of a stubborn streak, and I won’t let people do that for me unless I really need them to.

I find judging distances and speeds very difficult and I have to take extra care when I’m out. It doesn’t stop me going for a run, but I do have to slow up more than other people, to ensure that the car coming isn’t going to run me over.

I find uneven surfaces very difficult as I can’t tell how high or bumpy something is. We climbed a mountain in the Lake District a few months ago, and descending was difficult as there was an inconsistent stepped path which took me longer to navigate than it would for a person without a visual impairment.

If I am out and about, someone may wave at me; if it’s not from a big distance, I will see them waving but I can’t recognise their face until they are much closer. If they drive past in a car, I probably won’t recognise them.

I like to go and watch sport, but I’ll struggle to see what is happening on any more than a third of the pitch, so it’s great to have my wife and boys with me to explain the action.

Photo shows Andy in black vest and white shorts running along a path next to a large expanse of water.
Andy enjoying a run

The Hidden Problem

I think that my Nystagmus is a bit of a hidden problem, because I look like someone who just wears glasses, but it defines me. I try not to let it get in my way. I am currently working, I have a loving family and friends who support me when I need them to.

I am training to run a marathon and most of this I am doing alone, so does it hold me back? Yes, in some ways. If I stop doing things then Nystagmus wins and I don’t want that to happen. I can’t drive, I get tired eyes. But I still enjoy doing the things that everyone else likes to do, so no – I won’t let it stop me.

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