I still remember the moment so vividly, when my reality changed. What was seemingly an unremarkable summer evening at 19 is now a hallmark for when my perception went haywire. And instead of the clarity and certainty I was accustomed to, a haze of static and a feeling of unsteadiness took its place. My name is Adam Calcaterra, and I have Visual Snow Syndrome.
Imagine trying to convince your boss that you deserve a Ferrari for a company car, with 3x your base salary, and you only need to go to the office two days a week.
Thats what it’s like when you’re trying to convince a doctor something is wrong with you. Or anyone, for that matter. I went from a happy, well adjusted, thriving young adult to the equivalent of an agoraphobic vegetable. And honestly, the static itself was the least of my problems. I had never experienced true anxiety prior to my onset. The concept of not feeling sure of my equilibrium was also new. And all those other accompanying accoutrements you see on VSS youtube shorts? Yeah, I got those too.
What I perceived as a rapid deterioration of my health was in hindsight, the manifestation of my VSS onset. Hindsight is always 20/20; as is my vision, according to neuro-opthamologists. And after 6 times of the buck being passed from specialist to specialist, I decided to accept my fate, and learned to live my new normal.
How I cope? I embrace the chaos. Yes, the static is there. So are the floaters. I avoid gazing at the sky on a nice day. I always bring my sunglasses, even at dusk. I remind myself that I’m not alone, even when I feel the most detached. And if you’re reading this as a kindred spirit of shared suffering, the most important advice I can relay to you is to understand your limitations, and to measure them empirically. Trial and error is an inevitability, and you will make your symptoms worse temporarily, but you have to know what influences it and aggravates it, to better understand it. Knowledge is power, after all. Isn’t that how we all found ourselves here?
It’s been 13 years since my life became enshrouded in a polychromatic fog. I’m still here. Take solace in the fact that you will be too.
