By Avery Maddy

Hi, my name is Avery. I am 14 and I am a member of ANN’s Junior board. I do competitive dance and love making friends. I am a freshman in high school. I was diagnosed with congenital nystagmus when I was a baby and had cataract surgery when I was a few weeks old. To me nystagmus is like a math problem. You spend time solving the first step then eventually you get the right answer only to realize you have to solve the next step, then the next step, and then the step after that.

When I was younger, I didn’t know anyone with nystagmus. After the ANN’s bi-annual conference in 2023 I was entering seventh grade and having a hard time dealing with the stares and the questions as well as navigating a new school. I had exchanged phone numbers with some of the older girls at the conference; I reached out to them, and their advice really helped me. The ANN community is so special and made me realize that I was never alone. 

I used to always have a hard time telling people about my vision because I was embarrassed about what people would think and say. Learning to have more self- confidence helped change my perspective; I realized so many people know about my nystagmus, and it changes nothing. People with nystagmus are the strongest and most resilient people I have ever met. We aren’t afraid of a challenge. It’s important for me to do what is right and works for me. What works for me may be different for you and that is okay!  Advocating is not easy, but it is a superpower. Something that I always do before I advocate is acknowledge that I’m doing a hard thing and remind myself that this will help me moving forward.   

Always remember that asking for help is a strength and not a weakness. You are amazing the way you are. Never let anyone make you think otherwise.