My Story

I was born 37 years ago, a healthy 7 lb. 12 oz. baby girl. I appeared to be developing normally until my pediatrician noticed Nystagmus at my first newborn well check. At the time, little was known about the eye condition and not much progress has been made in my lifetime toward understanding and curing or preventing Nystagmus. I struggled through twelve years of public school without any special provisions. School was a nightmare, but I did graduate (barely). I lived my entire life frustrated and tired all of the time. I made mistakes that caused me to loose jobs. Finally, when I was thirty years old a councilor at the community college I was attending referred me to the Services for the Blind. At first I did not understand. I wasn’t blind, in fact my, visual acuity was 20/30. Eventually I contacted the agency and was immediately embraced by the case worker I first spoke to. He arranged to have a low vision nurse come to my home and my school and help me find ways to make life easier. She introduced me to the bar line magnifier, the talking calculator, the talking clock, special lighting and even marked knobs in my kitchen and made adjustments to my computer. She also encouraged me to get books on tape or CD, which I am crazy about now. I made the Dean’s List and was accepted into Honor Society. I also found that life was so much less frustrating will all of the adjustments. I wondered why nobody bothered to show me these things before. Instead I was treated like a fully sighted child during my school years, when in actuality, Nystagmus produces low vision no matter what the visual acuity score says. And now children (and adults) with Nystagmus are entitled to an IEP that allows special classroom and material provisions to compensate for their low vision. I had to take a break from college because I developed Lupus and Fibromyalgia and became very ill, but I hope to get started back sometime in the future, once my health is under control. I have learned to cope with Nystagmus because I was born with it, I didn’t have a choice. It often affects my self confidence, I usually avoid eye contact  and the eye movement interferes with my daily functioning, however the low vision nurse really helped make things better for me with her suggestions, and the equipment which was given to me by the services for the blind were very beneficial. I have only met one other person with Nystagmus. Sometimes it is lonely to be the only person experiencing this condition, but I try hard not to focus on it and I rarely think about it unless I am meeting someone new (that is when I become very conscious of it.) I have three children, and thank God none of them inherited Nystagmus. I am praying for researchers to find ways to cure and/or prevent Nystagmus but until then I guess we just have to live with it.