I have eyes like my mom. She used to like telling the story about how she came home from work when I was a child to find me crying. I was scared and telling my older sister that there were “ants” everywhere. My older sister couldn’t figure out what I was talking about because, to her, there weren’t any “ants” she could see.
My mother said she knew in that moment that I also had whatever the eye condition she had was. And I think in some way my mother found comfort in the thought that there was also someone else with eyes like hers.
Much like my mother did, I grew up not understanding why my sight was different. I grew up finding no one else related to my vision difficulties. No one else besides my mother seemed to have eyes like mine.
Living with Visual Snow Syndrome is unique in that so much is unknown about it, and was even more so unknown back when I was younger, before communities like Visual Snow Initiative (VSI) existed. I remember the days when the Visual Snow Wikipedia page was about two sentences. And to see the way the community has developed all these years later, I am filled with gratitude to Sierra Domb and all those who have come together so that so many people don’t have to wonder why their eyes are different anymore.
There has been so many great strives made recently for Visual Snow Syndrome, such as the WHO recognizing Visual Snow Syndrome as a condition or even the fact that such a community as VSI exists. I’d hope that even if not in my lifetime, that someday this work regarding Visual Snow Syndrome cultivates a future where it’s fully understood and has proven ways to cure it.
