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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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Smirnov Vladimir

For as long as I can remember, I have always been a cheerful child, madly in love with art: literature, music, cinema, and my friends. But my life changed drastically one fine day, and I remember this day as clearly as any other. It happened on Tuesday, October 30, 2001. Nothing would have portended anything terrible or unusual that day; as always, I came to school for lessons by 8:30 in the morning and went into the classroom when the math lesson had started. A new topic, ordinary examples…and at the end of the lesson, looking into the book – I noticed a small point in the field of my view in the middle, a small one, inside of which flashes of light flickered, after 5 minutes it grew and almost filled the entire field of my perspective – flickering flashes, zigzags, bright colors, flies and lightning.

I was very scared. I asked the teacher to go to the toilet. I ran out of the classroom…When I got to the bathroom, I saw myself in the mirror, and I could hardly see myself; there was only my silhouette, blazing in flashes of light and bright blinding images.

I started crying… I was shaking… I thought I would die now or soon… I didn’t leave the toilet for about 20 minutes… gradually noticing that the terrible images gradually weakened sideways to the periphery. I went down the corridor and ran to drink water…my heart was pounding like crazy, my hands were shaking… what happened to me? Am I terminally ill? Do I have brain cancer? Incurable rare disease? How am I going to prepare myself to tell this to my parents, teacher, and friends?!… I didn’t know.

An hour later, the headache went away my vision returned to me…but it became different – I mean – TOTALLY different. I began to see the world in a completely different way from now on; millions of small black and white dots became visible in my field of vision everywhere, both with open and closed eyes – the world became different for me. I was 9 years old…

Migraines have become a part of my life. I consistently have 2-3 episodes of migraine per year with an aura, sometimes lasting from an hour to three … I’m already used to it … but the worst thing is that the ripples in my eyes stayed with me for life 24/7…millions of tiny dots with closed and open eyes…after imaging and tracers, in the sun the dots turn into dots of blue, green and red…and at night, after getting into bed – you close your eyes – you see flashes of light – purple and green, forming balls and other bizarre shapes … as well as a deafening noise in a perfectly quiet place.

Until that ill-fated day – I remember how this world was – beautiful, colorful…such amazingly bright colors after what happened – unfortunately, the world never returned to its previous state for me.

I have always envied people who have never experienced it or even heard of this condition…In my family – no one had any visual snow, no depression, no migraines, with or without aura…nobody. Why did I experience this as a child? For what? I have never had any ailments…But it was meant to be…

I got used to the idea that I have it forever … as a child – I explained my condition to both parents and doctors – the doctors said that I was exaggerating and this could not be true; I got tired, nervous, and so on.

A neurologist diagnosed me with Visual snow; when I was 25 years old. I did an MRI scanning of the brain, vessels, and arteries of the head and neck. I took a biochemical blood test and checked for infections – perfectly clean … I never had a head injury.

Now I’m 31 and have been living with visual snow for 22 years, 24/7, every day, every minute, and every second.

On that day, October 31, 2001, at the age of nine, my life changed … it was then, because of the fear of dying, I experienced a panic attack … no one could help me. Only when I became an adult did I realize what it was… My psychotherapist diagnosed me with “Depersonalization disorder” because of stress, depression, migraine with aura, and visual snow.

Lamotrigine and antidepressants don’t help… it’s IMPOSSIBLE to get out of this prison. Medication doesn’t work, I mean – AT ALL. Sometimes meditation could work, but this help is too small compared to the scale of the main problem.

I decided to share my story with people and all of you guys who have experienced and are experiencing the same thing as me.

Despite the difficulties – I learned how to live with it…I finished primary school, but I could not graduate from the University … cognitive impairment – problems with memory, concentration … with remembering … it is very difficult to study, almost impossible, to work too … I had to leave the University because of visual snow and its symptoms.

However, I became a professional athlete; I did 100,200m track and field, won competitions…became a bodybuilder and powerlifter…having a healthy lifestyle all my life…I don’t drink, smoke, or use any drugs.

I also graduated from a music school with a class in percussion instruments, a jazz school…I play guitar and piano.

For me, Visual Snow Syndrome is cognitive impairment, depersonalization/derealization, a feeling that time doesn’t exist…memory too..understanding of the world…you live in a prison of yourself in a world of millions of pixels and visual distortions, flashes, and flashing dots.

It’s hard to live with it, but it’s possible.

I want to tell all people not to lose faith that someday we will learn how to cure this hell… I want to say that I love you, my friends – patience with you and faith in the future. We can find a cure.

P.S. I’m very proud of being a part of this wonderful community, and thanks for having me here.

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