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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.

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Hi, I’m Leah and I’m 33. I’ve had mild visual snow (I learned from this website that it would be classified as mild; the visuals are very helpful!) for as long as I can remember, so I can presume it was always there. If it weren’t, and it suddenly developed, surely that would be very notable in my memories. I do remember as a little girl, taking note of all the swirling psychedelic colors behind my eyelids when my eyes are closed in the dark at night.

I also have a very hard-to-describe slight double vision, which I’ve tried many times to describe to optometrists, and they have no idea what I’m talking about. Tests on my eyes show I do not have double vision, so I can only assume it’s another mild malfunction in the way my brain interprets the world visually. Again, it doesn’t affect my daily life at all. It’s just another weird thing.

I also have mild tinnitus, mostly in my right ear but a little bit in my left too, which I don’t think has been there my whole life, yet I can’t define when it started.

It almost feels frightening to write about both these things because I have read stories where it is so much worse and much more debilitating, and so little is known about it that I sort of get a little paranoid that by acknowledging it for too long, I’m tempting my brain to make it worse!

In my daily life, I don’t notice the visual snow or the tinnitus without consciously deciding to, or of course as is typical, if it’s very quiet or very dark. They’ve both been there so long they’re normal to me, and it would solve nothing to get upset about them being there, as I can’t change it.

I do sometimes wish I could see the world like everyone else, with smooth liquid clarity, but again it’s best not to dwell on things you can’t change, so I just keep those as fleeting thoughts and let them go.

I’m writing this so that my story can be another for someone to read who may take comfort in simply knowing that they’re not alone. I’m glad it seems that doctors are starting to pay attention and hopefully in 5-10 years more research will have been conducted, maybe even successful treatments developed, and people won’t have to go through the awful scary loneliness of experiencing visual disturbances and nobody knowing what it is.

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