Meet Our

Warrior of the Week

These inspiring individuals with Visual Snow Syndrome are sharing their experiences living with this condition and how they try their best to overcome its symptoms everyday.

Spotlight on:

Finnian Charlton-Jones

Meet our #Warrioroftheweek, Finnian Charlton-Jones💙
Spotlight on: Finn

Hi, my name is Finn. I’m a drummer and web developer from the UK, and I will be running the Berlin Marathon next Autumn for the Visual Snow Initiative. Here’s my story and what I think about the whole thing.

About 10 years ago, I began experiencing a gradual onset of Visual Snow symptoms: constant static, confusion, blurriness, brain fog, light sensitivity, afterimages, sudden light flashes, weird color shifts, light halos, and glowing outlines around objects. It terrified me. Under such circumstances, it feels fairly valid to doubt your own sanity and grasp of reality, and the mind runs wild with questions, what-ifs, and paranoia. If that’s happened to you, you’ll know how destabilizing, isolating, and totally dominating it can be. Most of all, though, Visual Snow really undermined my sense of connection with the world around me and the people closest to me. It made me feel like I had, on some level, lost my soul.

You and I have not lost our souls, I hope. We are also not alone in having this condition. What we have perhaps lost, temporarily, is the ability to reframe our lived experience under new, grim conditions that are thrust upon us, and for which we were not at all prepared. The world we lived in before might never come back. So it’s really that same common human story all of us have to go through at some point in our lives: How do we come to terms with disaster and keep on living? How do we adapt to a world that is no longer recognizable? How do we move forward?

Everyone has to find their own answers. I try my best not to fight Visual Snow, not to get sucked in with questions and worries, and not to let it take my attention. Just like all the other noises, including my neighbors, who always play techno until 2 am.

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