My eyes never stop moving.
That’s not a clever way of saying I spot everything (quite the opposite actually) or that I’m constantly busy (ditto), it’s just a statement of fact. it sounds like a small thing, eyes which jerk or swing from side to side, the way mine and my R have done since we began to see, but as a member of the Nystagmus Network, named after the condition we both have, I see so many questions daily, so many confused parents and worried adults, people who have to work just as hard as their eyes do to get on with a normal day, that when Wobbly Wednesday (a day to spread awareness for Nystagmus) rolls around, I can’t help but jump on the bandwagon.
Spreading awareness is a funny thing. Especially in a blog form. While my closest friends probably know more about Nystagmus than the average person who has the condition themselves, I can ply them with lattes and croissants, and distract them with questions about themselves interjected into an otherwise self-centred conversation about my life and my child and my fears, y’know, to make them think the conversation is two sided.
I can’t do that anywhere near as effectively on a blog. I probably have only about 3 more minutes of your attention span before you realise the jokes are drying up and click through to something about Kanye West. So I’ll try for a top 3.
Top 3 things I wish you knew about Nystagmus
- My glasses don’t mean I can see as well as you, any more than a walking stick turns an arthritic into a cross country athlete. I wear glasses, and so does my son. They support us, help the development of the eyes, and in my case-improve my vision where short-sightedness is involved. But Nystagmus means our vision is poor, with or without our specs. In R’s case, it means he is registered partially sighted. No amount of “lens 1, or 2? better with? or without?” will make a difference to that.
- We’re so tired. The simplest way of explaining it is that our brains have to work a lot harder to produce a still image for us to understand what’s going on around us. It’s an extra step in processing information, in seeing what someone is showing us, in reading a book, in playing a game. New settings are particularly difficult. It can be frustrating (especially if you’re five), it’s always exhausting, and often when I’ve been to a new place for the day, my eyes physically hurt by about 4pm.
- I just can’t see that. Whatever it is that you’re pointing to on your computer screen, yes even if it’s font 18. The faces of the people on stage, yes even from the front row. That sign out of the car window, yes even if you slow down. The detail in that drawing, yes even if I hold it closer to my face. Your face in the sunlight, yes even when it isn’t hot ouside. Who you are when you drive past me in the street, yes even if you beep and wave.
Next week, my R is having an eye surgery to help with some of the symptoms of his Nystagmus, in particular his head tilt, (adorable though it may be.) We are nervous about the operation as any parents would be, but we are also indebted to the UK Nystagmus Network and the Barnet VI team for being not only a font of knowledge, but also a community of kind listeners and intelligent answers and support. There is no cure for Nystagmus, but people like the ones we’ve come across not only never stop tirelessly looking for answers, but also help us get on with our daily lives so effectively that we have to suffer through people insisting there’s nothing wrong with us in the first place. A great testament to their hard work.
Lastly, I don’t run marathons, I don’t do sponsored mountain climbs, but I do write things down.
If you enjoy my writing, if you’re one of the people who stops me in the street and says “Hey, you haven’t blogged in ages”, please consider texting WWNN15 followed by any amount at all to 70070 to donate to Nystagmus Network.