From what I can remember, I’ve always seen the world through static and thought it was normal. If I stared at something or someone for too long and then looked away, I would see the shape of that person or object in the opposite color. I’ve always had trouble seeing in the dark, as it turns completely black for me, making me feel as though I’m blind.
When I was eleven, I finally decided to speak to my pediatrician about it. I shared the same things I mentioned earlier, but he pretty much called me delusional and didn’t listen to my concerns. After that, I kept quiet about it, thinking that if my doctor wasn’t concerned, I shouldn’t be either, right?
Last year, I finally looked up my symptoms and discovered the Visual Snow Initiative. For the first time, I understood that I wasn’t crazy and that I wasn’t alone. During my last eye appointment to get new glasses and contacts, I was asked if I had any concerns to share with the optometrist. I finally gathered the courage to mention it since I was at the eye doctor’s, after all.
When I was called back, he gave me an official diagnosis and told me that I was the fourth person he had met with VSS, and the sixth person he knew of with it in my area. I finally felt seen. He also mentioned that I have unique eyes due to my astigmatism being close to a perfect oblique at 45 degrees, while mine is at 50. He encouraged me to participate in any studies regarding VSS, and I’m 100% ready to join once I find one.
I’ve found that wearing sunglasses helps reduce the static and gives me a sense of normalcy, for lack of a better word. My advice to others like me who have VSS is this: know that you’re not crazy. Your concerns and feelings are valid. You are a human being with inherent value.
