I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters.
In school, I sat at the front of the class and was teased a lot as I struggled with ball sports. I always thought that if I just tried harder, I’d get better. Unfortunately, that never happened. Instead, I took up gymnastics.
In 1984 I was living in London. I’d traveled from New Zealand five years earlier, eager to explore what the UK and Europe had to offer.
That year, at age 33, I learned for the first time that my short-sightedness was due to nystagmus and albinism.
I received this new and “eye-opening” information when I was a patient at the London Refraction Hospital (now the Institute of Optometry). As a teaching hospital, students were eager to inform and discuss; I learned so much during those appointments. It was at one of those appointments that I heard about a new group for people with nystagmus. I went to the inaugural meeting, where I discovered there were other people like me. It was very liberating.
I never imagined that the small group who met that night forty years ago would grow into the organisation that Nystagmus Network is today, helping and educating so many.
In 1986, my husband and I moved down to Cornwall, where we purchased a small tearooms. I’ve always enjoyed baking, so baking cakes and serving cream teas was right up my alley. Three years later we moved to New Zealand.
This meant I wasn’t able to contribute to Nystagmus Network as much as I would have liked. However, I am grateful for the part they have played in liberating me from myself. I’m now happy to talk about my visual challenges, something I never did when I was younger.
I am also grateful for the continuing Zoom meetups, which keep me connected from the other side of the world.
