Living With Nystagmus

I’m 29 years old and my eyes shake. They dance. They quake. They don’t stop. I was born this way. In my life, I know only two other people who have it, one is my own brother. It is involuntary and is fairly rare I’ve been told, so not many people know exactly what it is or what is like so they always have all sorts of questions which I am always eager to answer. If you also have Nystagmus and are reading this then maybe you can relate with me or perhaps I can answer some questions for you.

How it works for me:

  • The further something is from my eyes, the faster they shake.
  • The closer something is from my eyes the slower they shake.
  • When I am tired they shake faster or I can’t stand to keep my eyes open.
  • Alcohol slows my eyes down (or so I have been told).
  • Bright lights agitate my eyes.
  • I can move my eyes further to the right than to the left.
  • Emotions and stress affect the speed my eyes shake.
  • I have a ‘null point’. When I angle my head and eyes a certain way it helps me focus better. My brother shakes his head with his eyes.

I am short-sighted. If I am trying to read something, it needs to be nearly right in front of my face for me to focus on it comfortably. In school, I was that kid sitting at the front of the class all the time. From Grade 1 to University, front row. Reading from the chalkboard would be troublesome too because I read slower than the class. Teachers were always accommodating though and would give me a little bit more time or provide me with physical notes. In the early days, I had friends who would let me copy directly from their notebooks. As a kid, this was super helpful. Nowadays I just ask to be sent the PPT slides or take a picture to look at my own pace. Big prints good, small prints bad.

Everyone always said I would go blind because I sit so close to the TV. I can’t sit back on the couch because it just isn’t comfortable. Trying to focus on the screen from a distance feels annoying. I always need a seat about an arm’s length away. This is especially true for me playing video games. I would be a terrible sniper if I didn’t sit close enough to the screen.

Luckily, I can drive with the help of glasses.  I’ve read that many people with Nystagmus can’t so I consider myself blessed in this sense even though it does get very frustrating because I think I require more focus than the average person. When I begin to feel my eyes get tired I have to find a way to pull over and rest them otherwise I feel too agitated to focus on the road. So even though I was able to get my license, I try to not spend too much time on the road. \

Sports were tricky. Playing basketball, for example, if I shoot the ball, I might see the hoop here, but it’s actually there…almost an inch or more away. Same goes with any ball sports. Never could play as good because of that. Maybe I just didn’t have the talent for that.  For parents who maybe worry about that, I would recommend something like swimming. That is what I did. Doesn’t demand the same sort of vision like for baseball, cricket or basketball.

I never felt bullied or anything about my eyes other than a few jokes which would be pretty funny. I grew up with my eyes like this and I am very comfortable talking about it. People are sometimes worried asking but it isn’t anything shameful to talk about. The weirdest question I ever been asked was if I was on drugs! That one was funny. Making eye contact can be difficult if I am tired or if there is too much light in the room. I try to let people, especially interviewers know so that it wouldn’t affect the interactions. I teach ESL to Korean elementary school kids mostly, so when they notice my eyes they’re always surprised and they come up with funny ways to describe it. Like an eye-quake (play off the word earthquake).

Having Nystagmus to me has been a bit of a disadvantage but I wouldn’t call it a disability. What does bother me the most is that my eyes do get tired very quickly and it interrupts my reading and studying. I  need to take breaks to close my eyes and relax before I can continue. I can still do most anything. It’s my quirk I guess. It’s a cool icebreaker sometimes. Would I fix/change it if I could? Undecided.

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