Living with Nystagmus

April 7, 2024

A lot of people have a similar expression on their face when they meet me, one that screams “Hey this guy has googly eyes 👀“.

They’re not being mean, it’s just something you’ll probably notice straight away if we were to meet.

Some nystagmus facts:

• Nystagmus is rapid eye movement that never stops, it can get temporarily worse depending on stress.
• It’s estimated that 1 in 1000 people have it, so it’s quite common population wise.
• You can be born with it or develop it later in life, which is probably way worse…
• There are many different types as you’d expect, some movements are circular, some are side to side like mine and some are up and down.
• From what I’ve been told there’s no known cure but honestly at this point I can’t imagine my life with normal eyes 😂 my brain would find it hard to cope.

It’s something I was born with and seems to run in the family as my cousin also has it. Most people don’t ask me about it and pretend it’s not there, which I of course appreciate but my days of being sad about it are loooong behind me so I’m always open to questions.

Those that do ask usually have the same question:

How do you cope with your eyes moving all the time? 

The answer is:

Surprisingly well! Because I was born with it, my brain has adjusted 100% and I never see the room move at all. I am sometimes aware of it when I’m in a stressful situation but it’s just a feeling rather than an experience, it’s hard to put into words.

Another question I often get asked is around driving. When I was younger I asked my optician if they thought I could drive and I recall them just laughing, which at the time hurt my feelings but now it’s funny as fuck. I can’t get close to the 21 metre licence plate test needed, I can barely do 5 honestly. While my brain does compensate for the shakiness, it’s not a miracle maker and the cost is my sight itself. More specifically, I have a very hard time reading text at a distance. It’s EXACTLY like modern AI (2024), my brain can fill in a lot of gaps and makes accurate sharp images of my surroundings but it’s struggles with replicating text. Cool huh? The brain is awesome. This of course created a lot of issues in school, I had a very tough time reading the whiteboard despite being at the front of the class. Oh well.

Another issue I have is I’m susceptible to migraines more than the regular person, so I tend to get one every few months, but I’m noticing more than it’s tied to my water intake as well.

Overall, I’m happy with it and content. Celebrate our differences! Hopefully you learnt something new about me and the condition 🙂