My name is Jonathan Rizkallah and I’ve had Visual Snow Syndrome for as long as I can remember. I can’t imagine ever seeing the world without flickering/flashing dots. Although the VSS is very challenging to deal with, the mental toll that’s it has is sometimes equally as bad. I also deal with tinnitus and night blindness. This always made it very difficult to do my daily tasks especially while I was in school.
The first time I realized I had VSS was when I was young, around 8 years old. I have a vivid memory of looking up in the sky and asking my mom “What are all these flickering dots in the sky”. I just remember being confused about what I was seeing but I was too young to realize it was affecting my daily tasks. Now that I’m older, I don’t drive, and I try not to be out at night as much as possible. I go through each day trying to forget I have VSS as it feels like there’s nothing I can do.
Now I am 21 years old but when I was younger, school was not my best friend. School requires a lot of reading and when I am reading, the whole page is flashing at me. This always gave me migraines and I sort of resented school because of it. My mother and I tried to explain my VSS to my teachers, but no one knew how to help. To be frank, I didn’t even know how to help myself. I just didn’t want to be in school anymore. But I struggled through it and now am on my way to graduating with my bachelor’s of Computer Science.
As many of us with VSS, we’ve been to countless doctor’s appointments and specialists for everyone to tell us we are fine and they don’t see anything wrong. There was a moment where I thought I was crazy when I talked about having VSS. To this day, I feel strongly about not bringing it up or telling people unless I have to. It’s also very hard to explain and visualize it for someone, and some just don’t believe you. But I have had supportive people in my life. My mother who is always researching and taking me to doctor’s appointments, and my job who works with me for work accommodations.
What I do to overcome some of the symptoms is remove myself from certain situations. When I am overwhelmed, I can notice the Visual Snow is heightened. So remaining in a calming environment can help mitigate the symptoms.
I know it can be draining just thinking about having VSS but my one piece of advice is to not be scared to ask for help. If you need something, ask for it. And the visual snow initiative is making me feel more comfortable with all of this. I enjoyed this exercise and I do find value in reading others’ stories. It gives a normalization effect to all of this.
