We belong to many tribes, often overlapping, during our lives. The story of my nystagmus tribe starts in 1984. In particular, the day I first met others with nystagmus and parents, like Vivien, of children with nystagmus. It still ranks as one of the most important days in my life.
That summer evening opened a door into a new world. At last, I could ask questions about nystagmus and get answers. And, when none of us had the answers, we’d go looking for them. Crucially, together, we could even laugh about nystagmus. And agree that not being able to do things like drive, well that’s not the end of the world.
The community that began 40 years ago continues to provide answers to tens of thousands of people around the world. And the Nystagmus Network still helps to dry the tears and spread a little laughter.
Not surprisingly then, volunteering with and eventually working for the Nystagmus Network have been far more worthwhile than the years I spent as a financial journalist. And, even though I’m no scientist, the research side continues to fascinate me.
Forty years on I’m lucky to still be volunteering with other sight loss charities, as well as occasionally helping the Nystagmus Network. As part of our ruby celebration, I would like to recognise the contributions to this charity of some who are no longer with us, among them Bruce Green, Steve McKay, Andy Machin and Richard Wilson.
Because of nystagmus, like me, neither Steve nor Richard could drive. That didn’t stop us enjoying life – or even travelling. In our own ways, all three of us realised that the world is full of drivers. The world really is our chauffeur.
