The story of Katie
I know there’s some stories up already about VS but I would still like to share my own, as im sure its at least a little different. It all started when I was seven years old. Very young! I can’t remember if I had it since I was born and at seven it was more apparent and that’s why I called attention to it or what, but it startled me. I noticed how the skies started to look weird. Never clear. I first talked to my parents about it. They seemed really concerned at first, but I guess they didn’t believe me because since then they have never brought it up again. It’s almost nine years later, so it’s a pretty big timeframe. I remember talking to my best friend about it. At the time I was probably eight and I had assumed that I just got hormones early or something and that’s why my parents didn’t make a fuss over it. So there I was, an eight year old in the park, looking up at the sky with my cousin. I asked her if she had gotten her puberty static since that’s what I thought it was. She said it wasn’t a thing, and that’s kind of when it hit me that I wasn’t normal. I still didn’t look for help though.
Years went by and I still hadn’t looked up anything and I only knew what I had experienced. All I knew was that static wasnot normal and my parents did not believe me. I have had tinnitus as long as I can remember, I’ve had starbursts, halos, obviously static, ectopic blue field phenomenon, floaters, 24/7 for the last almost nine years. Never stopping, never taking a break not evenecessarily when I close my eyes. It follows me everywhere! I’ve even had the other non visual symptoms like, as mentioned, tinnitus, and others including but not limited to; depersonalization /derealization , depression, anxiety (these have note been diagnosed, but I research this stuff till my brain explodes with information. I’m 98% positive I had these). Had? Yes had. I have always had DP/DR and I don’t want that to leave. But depression has gone and anxiety I’m afraid has not, yet.
Wow rabbit trail! Back on track.
2013 I looked into “static vision” and immediately got several web pages with information on a syndrome called “visual snow” I also read the words “currently incurable disease” underneath the headline. It broke me, but I kept researching. The ore I researched, the more I related to what people were saying it was like. I then discovered DP/DR and looked into that, self diagnosing myself with it. The more I r3ad, the more depressed I got. It all linked back to visual snow, the incurable disease, which is thought to be caused by a hyperactive left lingual gyrus. Which scientists know close to nothing about, yet. At least nothing they’ve shared.
Anyways two years later, here I am. Ive sorta learned to live with it. The tinnitus is really annoying when I’m trying to sleep but I’m still used to it. I try to block it out. Everything is gonna be okay. All we want is a cure so no one will have to go through what we have to deal with daily. That’s something all rare disease sufferers want. We don’t want our pain to be in vain. We just want to be cured.
Everything will be okay in the end. If it isn’t okay, it isn’t the end -Ed Sheeran