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Looking for the positives during hard times: visual snow syndrome

Written by Irena Nazarian

Every good story has a twist and a major plot, right? An interesting story that has many chapters. That’s the same way I look at this experience. A story with a long and difficult journey, but a good ending. Life is meant to be filled with challenges, but only to overcome them. My story isn’t different in that sense, but I would hope it gives you some hope as you read this.

To introduce some context, I will explain my past condition. I was diagnosed with visual snow syndrome (VSS), which was unheard of really in the medical community, other than in a few instances. It was also known as static vision. It wasn’t something commonly dealt with, so I felt out of luck. I developed the condition because of a sports injury during a soccer game. A concussion if you would believe. I never believed that would develop into such a condition, but that was the twist in my story.

I ran to different hospitals because I thought I could be rescued from this. Different emergency rooms had different ideas of what this was and gave me all sorts of medication. I tried everything and called concussion specialists who didn’t know how to deal with this problem, nor could they offer advice after our conversations.

It is unimaginable that there was not a lot of research behind this condition—it was terrifying for me. I wondered why this happened to me. Even optometrists and vision specialists couldn’t offer solutions to fully recover. It wasn’t their fault in any way, because there wasn’t much research behind this condition.

Visual snow syndrome

Visual snow syndrome, in my explanation, is a life-altering vision condition. To give you an idea, imagine your current vision filled with a million tiny black specks growing at different sizes and flickering in your vision. Sometimes it looked like lightning strikes in my field of vision. Often making it hard to look at anything and glasses would not be helpful in this case. It came along with severe migraines, eye pain, blurriness, dizziness and eye twitching. It felt horrible every minute and it happened right before I was going to start university.

In medical terms, if you Google it, this is what would come up: “Visual snow (VS) is a form of visual hallucination that is characterized by the perception of small, bilateral, simultaneous, diffuse, mobile, asynchronous dots usually throughout the entire visual field, but it can be partial, and it is present in all conditions of illumination, even with the eyes closed.”1I thought perhaps this was the major plot in my story and now I needed a good twist.

It did genuinely feel like my life was over, how could I even read a textbook or stare at the words on a screen clearly? Worst of all, I was told there was no cure. But in every good story, there’s another twist. I found the right specialist who dealt with concussions and has heard of visual snow syndrome. At that moment, it felt like a miracle. My prayers were answered.   

I was able to make a full recovery from this condition, back to my normal vision. Yet, I only got this far for one reason. Simply, because I had hope and didn’t want to give up on myself.

Hope

I’m a huge overthinker. I was thinking about what kind of career I could have with this condition. My mind was all over the place, but I hoped that I could recover so I could pursue my dream career in law. It was hard to believe that my life could go back to the way it was before, but it would be worse if I chose to give up on myself.

That would be the worst feeling truly, I would say, giving up on yourself. Sometimes it doesn’t matter if everyone tells you there’s no cure: you have to look for one yourself. It is worth it 100% because it’s your life.

The important thing to take away from this story is that I felt scared, but I didn’t want to give up hope. I kept searching and searching, calling doctors and concussion specialists from different provinces. It was almost as if I was stuck. What could I do now? Live with the condition forever? Absolutely not. I didn’t care how much time I would spend on this, I wanted to get better, so I could go to university and begin the next chapter. Eventually I did find someone and, luckily, it was nearby. Quite a coincidence, but I was eternally grateful.

Giving up is easy, but refusing to give up is different. Remind yourself that you’re strong and you can handle anything. Think about all the reasons why you shouldn’t give up.

The real solution to my recovery was being positive and keeping my hope. I admit at times, especially in the beginning, I was losing it, but I didn’t want to give up just yet. Being positive and persistent was the key. I hope that’s what you take away from my story.

Stay positive, never stop looking for your solution. I learned how important this is from my experience. You have yourself in the end, and the solution to recovery is in your hands. Don’t give up on yourself please, life has so much to offer.

Believe in all the best possibilities in the world, because it will happen for you. You have to believe in yourself to get better. Use your inner strength to fight this—it is worth it. I promise.

Image credit: Focus Imaging Inc.

[1]eyewiki.org | visual snow


Any medical information included in this article is not intended to form medical advice. It must not be used as a tool to help understand or assess potential options around diagnosis and treatment. Patients must consult a doctor to receive medical advice, diagnosis and treatment that is appropriate to their specific and unique circumstances.

Share your own rare disease story by emailing the RARE Rev team:hello@rarerevolutionmagazine.com


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