I want to encourage people living with nystagmus and give hope that they can achieve beyond their expectations and those of others.
I was born with nystagmus in 1956. At first it was thought I wouldn’t see at all and have limited mobility. As I understand it, my sight developed after about 6 months and I was able to move around like other children.
Little was known about nystagmus in those days. I initially went to a mainstream infants school. When it became evident I wasn’t able to manage in that setting due to my sight, my parents were pressured to send me to a boarding school for partially sighted boys. I was 6 years old at the time and found it a real struggle being away from home.
I always enjoyed sports, though I was not that good at them. Academically I didn’t feel stretched particularly in subjects like maths which I enjoyed and had an aptitude for. I feel that the lack of academic rigour led me to drift a bit and do less well than I could have done and there is evidence from the school reports that this was the case.
I left school at 16 and, after a year at technical college, I managed to get a job in finance at British Rail. I worked there for 21 years before taking a voluntary redundancy and subsequently getting a similar role with the NHS where I worked up to retirement in 2014.
Whilst nystagmus was always a challenge at work due to small print and other factors, the introduction of computers made a big difference. It reduced the need to read people’s handwriting and allowed me to change settings. I largely felt supported by colleagues. Of course, not everything went well. Technology was not always accessible and adapting to
changes could be problematic, but, overall, I’m proud of what I achieved, especially as often I was the first and only disabled person there.
I passed my accountancy exams in my late 20s and graduated at the age of 48. It was not easy to find study books that had clear, readable print but, somehow, I got through and found a way. Having nystagmus has been a challenge, but it can make you a good decision maker and force you to become resilient and determined.
Since retiring I’ve had opportunities to become more sporty and get involved in the visually impaired community. I’m a regular parkrunner and have achieved far more through this than I could have ever expected. I also play VI tennis and cricket and I’m looking to starting VI dance classes this year.