“My parents each wanted to give me one of their eyes so I’d still have a working pair.”
Mum and Dad noticed something wasn’t quite right with my eyesight when I was 5 years old. I always held books too close to my face. Mum would point out friends from school at the park but I wouldn’t go over. She assumed I was shy, not that I couldn’t see them. But I passed the eye tests, so no prescription was given.
It would be another 10 years before I was diagnosed with macular disease, aged 15.
I’d started noticing problems with my sight much more when I got to secondary school. I couldn’t really see the board, so my parents took me for another eye test. My optician was quite puzzled – he said the backs of my eyes were like those of a much older person. He referred me to the local eye clinic – back and forth I went, over several years. They didn’t know what was wrong. ‘You’re a bit of an enigma,’ they said. ‘Come back in six months’.
After being fobbed off for too long, we went for a second opinion at Moorfields. They confirmed I had Stargardt disease, a juvenile form of macular disease. Mum and Dad were pretty devastated – their daughter was going blind, and there was nothing anyone could do. But they were also relieved, as I was, to finally know why I had been struggling.
The consultant there was brilliant. He told us there were plenty of people with sight loss who lived full and active lives. He said I could do anything I wanted – apart from the obvious, like being a train driver or a pilot.
Still, I had been saving up all my money for driving lessons and a car, only to be told that my eyesight was already too poor for me to ever get my licence.
Knowing that I’d never be able to drive, that was one of the biggest things for me. When you’re diagnosed with macular disease in later life, at the very least you’ve lived some of those experiences, you’ve had those opportunities. Yes, you’re having to give them up – but I didn’t have them at all.
That’s why research into macular disease is so incredibly important. If a cure could be found, we really would be able to do whatever we wanted, including being train drivers and pilots! We’d get our lives back.
I’ve been a member of the Macular Society since 1995, and became a befriender some years ago. It’s both empowering and fulfilling to be able to support other people with macular disease. And it helps me too, as they understand the frustrations. We’ve had a different experience and different emotional journeys, but we’re all in the same boat too. We share the same struggles.
Sight loss is progressive; the deterioration can take you by surprise. I can’t recognise my husband or my children anymore in a room full of people. It has taken me a long, long time to accept that this is the way things are, particularly when you think it has been 27 years since my diagnosis.
I’m 42 now, and I have never been able to be spontaneous and just get in the car and go. I’ve got to plan bus routes, or I have to ask my mum or my husband if they’ll take me out. Sometimes you just want to wander around the shops by yourself, you don’t want to be with somebody else. It’s the loss of independence that people with macular disease mourn.
When you’re losing your eyesight, you have to do everything you can to hold on to what independence you have left. A few years ago I kept bumping into things and tripping on kerbs. I thought, ‘I’ve got something at home that can help me – I just need to get over myself and use it.’
That’s my long cane; Michael Cane, I call him. I never leave home without him now.
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