Hi friends, due to the massive influx of emails and messages I've received about this post, I will no longer be responding to messages. Thank you for understanding! Please check the FAQ at the end of this post for my answers to questions I receive the most.
On November 22, 2015 I was fine. On November 23, 2015 my world looked unrecognizable.
Living with a chronic condition sucks. I may be an English major who knows lots of prettier and more sophisticated words to use, but there is no other word I would put there. It just really sucks. And although keeping it bottled up inside is also quite sucky, I've had a lot of hesitations about writing about my experience.
I worried that writing about my chronic condition would make me feel worse—that writing this post would only make me more aware of my challenges. I worried that I would sound like I was complaining or asking for sympathy. I worried that people would scoff and testily remind me how other people have it so much worse. I worried that my words wouldn't help anyone. But as I neared the one-year anniversary of living with a chronic brain condition called Visual Snow, I knew I had to put pen to paper. It was time to find some sort of creative release.
You've probably never heard of Visual Snow. My doctors hadn’t either. As an extremely rare, under-researched condition, Visual Snow is only "treated" by one doctor in North America. And just why did I put the word treated in quotes? Visual Snow is untreatable.
Visual Snow is a condition in the brain that causes me to see television static ( “snow”) in my entire field of vision in both eyes and in all light conditions—even with my eyes closed. It’s hallucinogenic, meaning that this thick layer of little tiny dots moving and swirling and pulsating are not actually present in my physical environment. My Visual Snow causes double vision in the very center of my field of vision, light sensitivity, and palinopsia. It makes me feel like moving objects are flying at me much faster than they are, and that nonmoving objects are moving. It's a struggle to read a sentence without accidentally skipping up or down several lines, and I have trouble transitioning between focusing my eyes on something near and then far (or vice versa). I see stars à la old-school cartoons. Visual Snow has also caused my tinnitus, dizziness, heavy pressure in my head and face, lack of concentration, the feeling of my whole body buzzing, bright red eyes at the end of the day, and general cognitive fogginess. (Here I am sounding like an elderly lady at the ripe, old age of twenty-two. Pass the prune juice.).
Looking at me, you probably would never guess that I have a brain condition. Since VS is traced back to the occipital lobe, knowing that Visual Snow is "all in my head" doesn’t make it any less real—it actually makes it worse, as it means my condition is completely inescapable. The problem is inside my brain.
It's hard to put into words what Visual Snow looks and feels like, but below is a simulator to help you with visualizing it. As I didn't make this animation, it doesn't perfectly align with my experience. If I could edit it, I would make the dots more transparent (which means I can still definitely read and drive and do all that, but it's like there's this staticky layer in my vision that I desperately want to peel away).
To someone who isn't afflicted with Visual Snow, this all sounds hard to comprehend. I get it. In the early days of my VS, I remember the pure frustration of trying to explain to the urgent care doctor what was going on. He was baffled, took X-rays of my neck (all clear), and told me to seek medical help elsewhere. A few weeks went by, and my weird symptoms hadn't cleared up, so I went to the emergency room and got a CT scan of my brain. The scan came back clear, and the ER doctor told me it was probably a migraine aura that just so happened to be lasting for a month. He gave me a muscle relaxant and shooed me out the door. I then went to my primary care doctor. He had no clue what I was going on about, but he ordered a cervical spine MRI for me, as I had experienced a low-key whiplash event (slamming on the brakes in the car—not even a true car accident) right around the onset of my Visual Snow. The cervical spine MRI came back clear, so I was then referred to an ophthalmologist and a neurologist. After several tests, the ophthalmologist said that my eyes were structurally fine, and that there was nothing he could do to help me. The neurologist also did several tests and ordered a brain MRI for me. The tests and the brain MRI came back clear, so she told me to wait it out and come back in six months (!) if I were still having problems. It felt like one very frustrating game of hot potato. I, the patient, was the potato that none of them wanted to deal with for more than a few minutes. I so badly wanted a doctor to fully commit to helping me find relief. Instead, I was passed on from one doctor to the next, none of them wanting to take on my case and advocate for me.
At that point, I had exhausted my local options, and I felt so alone in dealing with my mysterious condition.
I had always pictured doctors as these all-knowing superhumans who, with their incredible intuition, could quickly figure out what was wrong with a person, treat them, bandage them up, and send them home with a lollipop in a matter of a few hours. Through my several-month escapade trying to find treatment for my Visual Snow, I realized that doctors and researchers are just humans. And that in the case of this exceptionally rare, under-researched condition, their guess was as good as mine. It was a very, very scary realization.
There are Facebook pages and support groups and websites and forums populated by people suffering from Visual Snow and trying to find relief. And although I looked at those resources for a short while, I quickly realized that reading about other people's struggles with VS made me feel worse—reading other people's posts made me feel helpless, anxious, hopeless, and ultra-aware of the jumbled, whirling visual mess in front of me. I needed a plan to help me cope.
...so I did nothing.
Well, I very strategically did nothing about my Visual Snow. I decided that if dwelling on my condition made it worse, then I needed to do the opposite. I needed to teach myself to forget about my condition. So I clicked out of the forums and Facebook groups. I stopped reading the jargony medical literature that I could barely comprehend anyways. I told my family to not even utter the words "Visual Snow" in front of me unless it was absolutely necessary. And I almost never brought it up with my friends. I was carefully guarding myself from spending any extra mental energy on my condition. I then turned to a twofold plan of my own invention:
1- get my anxiety attacks under control, and 2- be very, very busy to distract my mind.
The latter was undoubtedly the easier of the two. Anxiety is something I haven't written about much here, as I try to keep my public writing centered on more joyful topics. But anxiety has had a presence in my life for a very long time, and its sharp edges make VS all the more mentally painful. Once I started reeling in my anxiety—which is probably worth a post of its own—I turned to part two of my coping strategy. I needed to be very, very busy in order to distract my mind. I thought about the things I was passionate and curious about (Religious Studies, filmmaking, literature, nature, entrepreneurship) and began pouring out my heart and soul into meaningful organizations, activities, and relationships. And after a few months, a strange and wonderful thing began to happen. I started to forget (at least on a surface level) that I had a brain condition. I just sort of stopped noticing that I was seeing the world through a very muddled lens.
Of course, it hasn't been a perfect plan. I mean, it basically centers on denial. And there are certainly days or weeks where I have flare-ups, and my symptoms feel worse than usual, and my brain can't stop obsessing over it (...like this week, for instance). But I try to forget. I try to stay busy. And I try to stay calm. I am, of course, praying for new development in the medical world. I'm praying that the research currently underway in Europe is fruitful. But until then, it's reduce anxiety and do really neat things so that my brain has other thoughts to occupy itself with. So, friend, if there's something you're going through that's leaving you bruised and battered, I encourage you to sit with it and figure out a plan of action. Unlike mine, it probably won't include techniques for forgetting. It just might be one of those bear hunts (à la Helen Oxenbury's picture book), where you can't go over it, you can't go under it, and you've got to go through it.
Abounding in hope,
As a reminder, I no longer respond to emails and messages I receive about VS because there are just too many! My heart goes out to all of you, because I know that VS is scary in the early days. Since my story has been a comfort for a lot of people, here is a recap of the questions I'm asked the most, as well as my answers.
1. How do you deal with your Visual Snow?
I try my absolute hardest to not let it control my days or my mental state. I make a very concentrated effort to stay very busy and fill my life with things that bring me joy.
2. Isn't that easier said than done?
Yes, in some ways. I've had Visual Snow for over three years now, and staying busy has been the most helpful thing for me--I can actually forget about my VS on most days now! It takes a lot of mental toughness and tenacity to stay busy and focused on my goals and daily joys, but I promise it becomes easier with practice, like all things do. My advice is to keep pushing yourself to continue the activities you enjoy (in whatever capacity you’re able to do them), explore new hobbies, and spend time with people you love. Don't let your vision take those things from you--you do have some power over your VS, even if it doesn't feel like it.
3. What about visual snow-related anxiety?
I like to journal to stay calm and work through my anxieties. Talking with a therapist also helps. I've found that anxiety makes my VS seem worse, so being extra gentle with myself and tackling my anxiety helped my VS as well. Like any chronic condition, dwelling on your symptoms is only going to make you hyperaware of your condition and trap you in a toxic cycle of anxiety.