I think during childhood my daytime sight was pretty good but I have always had problems with night vision. From when I was about seven or eight, I could tell my eyes were struggling to adjust from light to dark.
I had fewer problems during the day. With things like street lighting, if an area was too dark it was hard to focus my vision.
When I hit puberty, my night blindness became worse. From there, it changed slowly and my vision started fading. It was small things that started disappearing like markings on the floor. I started walking into glass doorways frequently and I found it hard to judge distance. If I went into a bar or the cinema I couldn't see very well what was in front of me. The last movie I remember seeing was the Lord of the Rings. After that I couldn't see the finer detail. Walking down the street during the daytime, going shopping, going to restaurants - unless people are very close to me, it's hard to make out detail. Sometimes things seem merged together.
"When I am walking, I am always looking at things. It could be a design on the floor, it could be the River Thames or the trees...I try to take images of my immediate surroundings and how I see"
A turning point
Being diagnosed at Moorfields Eye Hospital helped me to become more confident in myself. Before my diagnosis, I was always under the impression that my sister and I had the condition because we didn't eat enough carrots. Now I understand Usher Syndrome more and am able to live better with the condition. It was through my first consultation in 2003 that I got the inspiration for the exhibition.
I've never thought Usher syndrome to be a problem. It's hereditary, it's progressive and there is no cure. I can still see and I am always grateful for that. In terms of the changes to my sight there is a concern because I don't want to lose my eyes. The idea of not being able to see colours, shapes or judge distance between steps and the pavement, of not being able to read the train timetable or fine print – that’s daunting.
They are little things but they are important. When you start going down that path, you have to rely on other people. I feel like my independence is drifting away. I think the main thing for me is to stay positive and creative.
With Usher syndrome, I could explain it as much as I liked but people wouldn't get the gist of it. My exhibition at Moorfields created an experience for those who wanted to understand what Usher syndrome is. A picture tells a thousand words - it was that kind of approach.
I have always liked photography, media, architecture and sculpture. When I am walking, I am always looking at things. It could be a design on the floor, it could be the River Thames or the trees. It might be something that has a particular shape about it, clothing that someone is wearing or a new car. I'm fascinated. I try to take images of my everyday surroundings and how I see. Usher Syndrome allows me to view the world around me in a specific manner. Using photography, I want to capture this specific experience in an artistic and realistic way.