FROM SHYNESS TO SUCCESS: LIVING WITH ANIRIDIA & NYSTAGMUS
BORN WITH A VISUAL IMPAIRMENT
My name is Glen, I'm 34 years old, and I was born with a visual impairment. Events during my childhood left me severely lacking in self-confidence, but over the last few decades I've developed into a very different person. Over the past year alone, I've started a significant new chapter in my life, having adventures and experiences that I never thought would be possible before.
MY CONDITIONS: ANIRIDIA & NYSTAGMUS
My primary condition is Aniridia, which literally means 'no iris'. So I can't tell you what colour my eyes are. But the iris isn't just there to look nice. It's actually a muscle that controls the size of your pupil, to control how much light enters your eye. It tries to stop you from being blinded in bright light, and helps you to see better in the dark. But I can't do that. So I'm overly sensitive to glare and brightness - meaning I wear green tinted sunglasses outdoors, and invert the colours on computer screens to have light text on dark backgrounds. And I struggle to adjust in the dark, so I have to stick to areas that are well lit.
My other condition, Nystagmus, is a side effect of Aniridia. Not everyone gets it, and it can be part of the package with many conditions, but it is common in Aniridia patients. It makes my eyes shake and wobble involuntarily all the time. I don't notice the shaking unless I'm tired or stressed, as my brain compensates for it. But it does mean I can't focus on things unless they're near to me or enlarged. When I'm out, I'll use a monocular (a small telescope) to read things like signs. And on computers I will zoom things in and enlarge the text. It also means I can't drive.
MY SCHOOL YEARS
At my first mainstream school near my home in Devon, neither the teachers nor the other pupils knew how to help me. So I struggled in class, unable to read the blackboard or my work easily. And I was bullied by some of the other kids. So the only thing I learnt at that school was that I wasn't normal, and that nobody outside my family cared. So, as you can imagine, I became very shy and withdrawn.
My parents quickly found a school for the visually impaired and transferred me there. But there was now a lot of damage to repair in terms of my confidence. And that wasn't helped by the fact that I was soon being teased and bullied by some of the kids at this new school as well. Not because of my sight this time, but because I was so shy and quiet and easy to upset.
As the years went on, however, I gradually opened up and did make some very good friends. And, thanks to the wonderful teachers we had, I also did very well with my schoolwork - as a result of which, I started to get little perks and rewards that the bullies didn't. And that caused our relationship to change. Their initial jealousy turned into respect. And as I got to know them, I came to understand why they behaved the way they did. As tends to be the case with bullies, there were underlying factors that they really needed help with. So by the time I left school, we were actually good friends, and I was a lot more confident than when I'd started.
MY TRANSITION INTO ADULTHOOD
Moving from a disabled school to the mainstream environments of college and university was a new challenge, as I didn't know if people would be understanding, or if I would just seem odd to them. So I was still a bit shy then. I did chat to people and got on well with them, but I didn't develop any close friendships, as people only saw me in lectures and so didn't have a chance to get to know me. But, again, I did well with my work, and I still met up or chatted regularly with school friends, so I wasn't lonely.
But my biggest confidence boost was getting a job. Soon after getting my Accounting & Finance degree, I got work experience with my local council - first with their finance team, and then with their printing team, after word got around about my computer skills. Again, I was shy and nervous to begin with, and some of my colleagues were also nervous as they weren't used to working with a disabled person. However, I soon settled in and quickly earned a lot of respect from people in my department and elsewhere, resulting in many good friends and a full-time job.
And then, 6 years after starting my career, something happened that changed my life completely, and would give me the opportunity to make full use of my heightened confidence.
A FRESH START
When my father passed away at the age of 65, followed 2 years later by my grandmother's passing at 105 (yes, seriously!), we were in an unexpected position. Mum and I had now inherited my grandmother's London home - which would have been sold if Dad were alive, as he wanted to retire in Devon. But without him, we had the opportunity to move to London instead. And given all that the city has to offer, it was a no-brainer. So, after a few years sorting stuff out, that's what we did, moved to London during Christmas in 2016.
It was very exciting to be moving there. But it also carried a very real risk of isolation, because I didn't know anybody there. Not only that, but my employer in Devon was keeping me on as a homeworker, keen as they were not to lose me. So, happy as I am working on my own, it meant I wouldn't be meeting anyone during working hours either.
So, determined not to be lonely, and calling on all the confidence I'd developed over the last 3 decades, I took the plunge and dived into London life as much as I could. I joined social groups (for disabled and non-disabled people), I went on walking tours, I visited museums, I saw theatre shows, and so on. And I had a go at blogging and making videos about it all. I wasn't sure what would result, but there was no harm in trying.
And it's paid off more than I'd ever expected. I've been given amazing opportunities and experiences, including my first ever public talk about my disability - something I would never have had the guts to do in the past. And I've been having lots of fun and making many new friends.
I don't know where all of this will lead. All I do know is that I'm in an exciting new phase of my life that has further strengthened my confidence. By grasping the opportunities being presented to me, many others have resulted, so I'm continuing to build on them as best I can, and enjoying myself as much as I can.
These new experiences have confirmed all that I've learnt over the years - that having dodgy eyesight doesn't make me any less of a person, that I can still achieve things, that I can still do the stuff I enjoy, and that I can still make friends. I wasn't being limited by my disability, but the limits I was placing on myself out of fear and uncertainty. There will always be an element of that within me, but it's nothing like it was. It's been a long journey to get to this point, but it's been worth it, that's for sure.
If you want to follow my adventures, you can find me here:
Blog - https://welleyenever.com
Youtube - https://youtube.com/c/WellEyeNever
Twitter - https://twitter.com/well_eye_never
Instagram - @welleyenever