When People Ask Me If the World Shakes Because of My Nystagmus


People often ask me, “Are you nervous?” when they look directly into my eyes. To which I smile and say, “No, not until you asked me.” I was born with nystagmus, which is the movement of the eyes.

Emily Parma

Growing up, I didn’t notice it until I was an adolescent and my friends asked me about it. I remember closing my eyes, touching my eyelids with my fingers and feeling my eyes shake. As I grew up, more people became curious about my condition, but it wasn’t until recently (in my college years) that I could truly explain what it feels like to have nystagmus.

The most common question people ask me is, “Does the world shake?” The short answer is no, but it can be difficult to understand. My friend asked me to explain it to her, so I told her to focus on my finger in front of the clock on the wall. I moved my finger left, right, up and down, and her eyes followed. “Now is the clock or the room moving?” I asked her. “No,” she said.

You see, nystagmus doesn’t make the world shake, it just makes focusing on one space difficult, but I don’t notice it most of the time. I used to take ballet classes, and it was fun until the instructor taught us twirls and told us to focus on a spot on the wall while we would spin. Adding nystagmus to this just made me dizzier than others in the class. Focusing on a spot was almost impossible during a spin, but I practiced in my own way.

I have also realized that if I have too much caffeine or get anxious, my eyes move faster and then not being able to focus at all bothers me. Under normal circumstances, however, the movement doesn’t bother me. The world doesn’t shake; my eyes just scan multiple things at the same time.

I’m sure for other people the nystagmus can be more or less extreme, but this is my perspective, from someone who has learned to adapt to the conditions for the past 21 years.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

 


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