**Caution, this entry gets a little real***
I’ve jokingly said before that I’m “famous on the internet”. Yeah, I say it kind of facetiously, but for a small community of people, I actually am kind of well known, and a lot of people manage to stumble on the things I’ve written and filmed regarding one area of my life I try desperately to keep separate from my day-to-day personal life.
That’s right kids, tonight we’re going to talk about my movement disorder.
Tonight I checked my email (like I do), and, like I often do, I found a notification from Youtube telling me that someone had commented on one of my videos.
And it got to me.
I got an email from a girl named Katie asking me how the hell she is supposed to live with a movement disorder for the rest of her life. She went on to explain how bad the pain is, how frustrating it is to not be able to do the things she wants to do, how she’s lost friends, how basically, this thing has ruined her life.
She ended it with a question. “After everything you’ve been through, do you think you can ever be happy?”
Two years ago, I went through…well, a lot. I don’t like to make this blog about my woes and miseries (and I feel like medical information borders on the “overshare” category,) but basically, I fell and hit my back. And when I fell, something happened to my back that basically set in motion a constant twitch… thing (and a bunch of other crap that I don’t feel like talking about right now) that I dealt with for almost a year and a half. After months and months and months of medical testing and literally being a case study, they determined that I had “a movement disorder”.
That was it, that was all. After all of the testing, and the constant trips to specialists and drugs and procedures and 6 inch needles and everything, they said “oh, it’s just…a thing you deal with” and went on their merry way. Not only that, but double bonus: while there are something like 27 specifically named movement disorders that exist, my particular set of symptoms are so distinct and unique to my case that there isn’t even technically a movement disorder that describes what I have. So the nice specialists patted me on the head and sent me away, and kind of left me on my own to figure shit out.
That year and a point five (or so) was…I don’t talk about what happened a lot. Jake was there, and he knows, and some of my close friends know exactly how roughballs it was, but it was…awful. I was, frankly, hopeless and terrified for about 98% of the time, and the other 2% I spent drugged out of my mind. It was a shitty fucking way to live.
I could talk about how fucking shitty that experience was for me, and how that year and a half was one of the most painful things that’s ever happened to me, but somehow, (and I know this sounds cheesy) against everything the doctors told me, I started getting better.
During the whole ordeal, I started posting little video diary things on Youtube. I don’t know why. Part of me wanted an outlet, part of me saw the videos of other people struggling with the same types of things and wanted to reach out to them, and part of me just wanted validation that I wasn’t crazy.
That was the hardest part of the entire thing. For nearly two years, I questioned my own sanity (and had it questioned by a number of registered medical professionals). Why was this happening? Why couldn’t I make it stop? Some days it was better than others, but the stares and the gossip and the general shitty-ness of the situation became so much that I think it made things a lot worse.
And then the comments started coming in. From all over the world, from all different types of people from all different walks of life, people started sending me comments of support and hope after watching the videos. I’m not to proud to admit that some days, they were what kept me going.
I put up a good front. I’m really, really good at that. In fact, that’s one of the biggest things I learned that year. Was just to keep smiling. And it became so hard to break down that barrier and admit that I was feeling crappy or needed help that my built in response because “everything’s fine”– and so I started pushing people away.
And that was shitty of me.
But anyway, people started watching my videos. In them, I was very candid and open about what I was going through. There is also actual film evidence that I cry. They got a lot of views A LOT. I’m not viral or anything, and I don’t think I’m going to be a millionaire because of them, but I left them up.
Life moved on, and I learned to deal with things.
The twitching itself calmed down, and I learned how to manage my daily existence so I can eat soup (get it? because I twitch…never mind)… I learned what sets it off, how to make it NOT start twitching, what to do when I start, and, basically, started living very carefully. It sucks sometimes, and (god, again with the cliches) some days are better than others, but all in all, I improved dramatically.
Since then, I’ve been featured on a number of blogs and a podcast or two specifically marketed towards families of people living with movement disorders. But I was the “success story”. I was–am– an anomaly. Sure, it’s not totally “gone”. It’s something I deal with every day, and it’s something that I have taught myself to be aware of. I’ve had to give things up. But to the people who contact me, I’m the girl that got better from something you’re not supposed to be able to get better from.
Movement disorders aren’t supposed to just stop. They don’t disappear overnight. But mine…kind of did.
So I stopped making videos. Part of it was I just got busy. Part of it was I thought to myself “Well, you don’t LOOK like you have a disease anymore, why post?” The biggest reason though, goes back to the comments. I just didn’t have anything to say anymore.
Recently, though, that’s really started making me feel guilty. People like Katie make me feel guilty.
Four or five times a week, I will get a desperate plea for help from someone going through something similar, begging me to give them advice and asking me if I have ANY clue what could be wrong with them, if I can direct them to a doctor or some type of therapy or treatment or whatever– and while I’ve made it my rule that I ALWAYS answer every message with as much information and as much positivity I can muster, it’s so hard to read those messages, especially right now.
Because I am happy. I don’t know what the future holds– I am happy and content, but I also live with the knowledge that any day things could go exactly back to the way they were before– and I’m also content in the life I’ve built that no matter what happens– twitch or no twitch, the people around me love me and support me, and that’s an absolutely amazing feeling. I’m fucking lucky, and I know it. I have no words to describe the gratitude I feel when I think of the amazing support system that I have to rely on, every day, no matter how shitty things get.
However, I constantly hear stories of people who have been rejected by their friends or family, made fun of, and are desperate for an answer– especially on how I made it stop. I know what it’s like to be in constant pain and to be so scared and confused and just– desperate– that you’ll email some stranger half a world away with the hope that maybe…MAYBE they’ll be the one who says the right thing or gives the right lead. I did the same thing.
And now, people are reaching out to me.
And I don’t have the answer. I just don’t know.
It’s stupid, but I feel guilty because I got better.
I know it’s not my burden to bear and that I can’t solve the world’s problems.
But it’s just so hard because I remember what that feels like, that feeling of grasping at whispers and grains of sand and the absolutely hopeless feeling of getting a response back of “we don’t know” or “I can’t help you”.
Sometimes it just gets to be a lot. And it makes me sad. And for people like Katie, there’s not much I can say except “it might get better” like the world’s tritest dick.
Sometimes, being famous on the internet sucks.