Meet our #WarriorOfTheWeek, Lee Bland! ????
Spotlight on: Lee Bland
“Hello, I am a VSS sufferer from The UK.
I first developed VSS around 10 years ago. I had spent 3 days with a migraine that would not shift while visiting family. A day or two later I was looking at the living room wall in the low evening light and commented to my Sister “Isnt it odd that in this light it looks like the walls have static on them”. My Sister stated that she didnt see any such disturbances. I didnt pay it much thought at first, until a couple days later back at home, I started getting eye strain and tiredness. My eyes felt heavy like I needed a nap; but it would still only be midday or early afternoon.
At night I would go to bed, and within a minute of closing my eyes they would start twitching and moving of their own accord for about 5 minutes. I woke up in the night to the sound of commotion outside, and noticed the dark room was alive with static. It was then that I began to think something was wrong. Initially I saw my optician – thinking it was a prescription problem – who told me my eyesight and eye health was fine. I therefore visited my Dr and described my symptoms; I was seeing static, and everything looked like I was watching it on a badly tuned TV. While this in itself was distressing enough, what was worse was their deadpan reply of “Im sorry, I dont understand what you are describing”.
Over the next few months I visited several other Drs, each time asking to see a different GP; however each visit generally went the same way… I would tell them my symptoms, they would ask me if I had shadowing or darkness in my vision, I would say “no” , they would ask me if I get “police flashing lights” I would say & “no”. They would ask me if I did drugs, I would say “no”. They would tell me they didnt understand what I was describing.
Meanwhile throughout this, it was taking its toll on me personally. I was constantly tired, not just from heavy eyes, but also from the mental toll of worry. It is bad enough to feel you have something wrong with you, and is even worse to have medical professionals confirm something is wrong with you if it is serious….but it is even worse to be told by medical experts that they don’t even understand the symptoms you are describing.
So my social and professional life took a hit, I struggled to focus on my work when my computer screen was alive with dots; and I lost enthusiam for catching up with friends and family. Out of desperation I took to Google, which as I am sure you know, always throws up horror stories of serious chronic conditions; but after weeks of searching I stumbled across an article in which the author was describing a number of my symptoms; and they called it “visual snow”. Finally I had a name for it, so I Googled visual snow and got a lot more hits from articles matching my condition. With this new name, I went back to my GP and asked to be tested for Visual Snow. They had never heard of it, but promised to read up on it over the next few nights if I came back a week later. I did and they did. And they confirmed from my symptoms that I indeed qualified for a VSS diagnosis.
As per your own heartbreaking experiences, I was then told there was no known cure; but was sent to a Neuro-Opthalmologist for exams and MRIs to rule out anything sinister. These exams involved staring at a screen with alternating black and white squares, and swirling spirals etc while wired up to a machine for hours at a time; to establish the delta between what my eyes were seeing, and what my brain was registering. Alas the Neuro-Opthalmologist confirmed it was indeed VSS, and indeed there was no known cure.
However, assured me my brain would eventually learn to filter it, thereby reducing my awareness of it day to day. To his credit also; admitting he had little to know knowledge of the condition, he offered to speak with me every 12 months to monitor my progress with the condition, as a means of compiling further information on it. This became a regular consultation until COVID disruptions, I am currently trying to re-establish said consultations. As someone who has had it 10 years; I wanted to offer some hope or info to those of you only just developing VSS.
Overall, I would say my brain has learned to filter most of it out. I generally dont consciously think “wow there is a lot of static on that object” when looking at things, it is only when I deliberatly look for it. Thats not however to say that I am not affected. My vision in low light is diminished, I struggle to make out the fine edges of where one item ends and another begins for example. One thing I would say, especially if you get anxious over diminished night vision. is while its easy to worry that the static is hampering your ability to make objects clearly in the dark, sometimes its worth reminding yourself that in a lot of situations, you wouldnt be able to make the objects out clearly even without VSS. Ask yourself “how much easier would someone without VSS find it to complete this task in the dark”.