I have nystagmus, but I’m still me!
People at school are often surprised when I tell them I’m legally blind. I don’t always look like it. I can walk around, talk to my friends and do theatre. So I think some kids assume I’m joking or making it up.
But I’m not.
I have a condition called nystagmus, which makes my eyes move on their own. I don’t control it. I don’t do it on purpose. It just happens and it makes it harder for me to see things clearly, especially far away or in bright or changing light.
One of the hardest parts isn’t even my vision. It’s when people don’t believe me.
Sometimes at school, kids will take my glasses off and hold them away from me like they’re testing me. Other times they’ll put their fingers up in front of my face and ask me to count them, like they are trying to prove something. And I guess they think if I can do something in that moment, then I must not really be blind.
But that’s not how it works.
Those moments make me feel embarrassed and frustrated. I don’t like feeling like I have to prove something about my own eyes.
I wish people understood that being legally blind doesn’t always mean you can’t see anything at all. It means your vision is affected in a way that makes everyday things harder and it can change, depending on lighting, tiredness and a lot of other things.
Even when those moments happen, I still try to keep going. I like theatre, I like my friends and I like being part of things. I don’t want my condition to stop me from doing what I enjoy.
I’m still me.
And I want people to understand that I’m not pretending, I’m not exaggerating and I’m definitely not making it up. #ImNotMakingThisUp
If someone like me tells you they have a condition, the best thing you can do is believe them and be kind. That makes everything easier than any test ever could.