It’s with me every minute of every day. Sometimes, for a few hours, I forget that I was diagnosed. I forget that everything changed a year ago. It’s amazing because when it all first happened, I thought I wouldn’t ever stop thinking about it. It’s gotten better over the past year, but there’s still some everyday reminders that it’s still with me. Specifically, the myoclonic twitches.
In my first year of college, I noticed that the mornings after I went out, my arms would twitch completely out of my control. I dropped cups and plates in the dining hall. The morning after my cousin’s wedding, I was noticeably unable to hold my fork and actually eat. My whole family noticed. Even the morning of my first seizure. I was trying to eat, but my hands had a mind of their own. I literally wasn’t able to hold anything.
But, to me, that had always just been “what happened when I was hungover”. It didn’t have any other meaning to me. It didn’t mean that I was sick or that I was in danger, it just meant that I had been drinking. It was one of those things that was quirky about me, something I laughed with my friends about.
But then it wasn’t a joke. When I went to see my first neurologist, he told me that he thought I had epilepsy based on the severity of the seizure. He asked me if there was anything else I had noticed in the past few months, and I described the twitches I had been having. He told me each of those were minor seizures, which he called “myoclonic jerks”. That news scared the living crap out of me. Each little one caused very minor brain damage and were and are warning signs of a more serious seizure.
Ever since that moment, each twitch has freaked me out. The doctors have tried all different medications to stop the twitching, but it hasn’t fully gone away. Since then, my doctors have told me some of the twitches can be from anxiety.
I’m not sure how it’s been this long and it hasn’t been solved yet, but I’m not sure it ever will be.
Almost everyday, they’re still there. I can’t stop them. Sometimes it’s just my arm, sometimes my leg, and sometimes my entire body. Those are the moments that scare me the most.
Knock on wood, I’ve been stable for about six months. The twitches have been there, but haven’t necessarily warning signs. And if they are, they haven’t warned me about anything so far.
The twitches have and always will be a constant reminder that it’s there. The disease is there. It’s with me, and it always will be. It’s the constant reminder that I need to be careful, and that I’m always going to be in danger.
Even now, I still feel that same panic everyday. It’s been a year since they told me what the twitches were. I feel like I should be used to it by now, but I’m not sure it’s ever going to go away.
It’s a constant in my life that I might not be able to get rid of. And at the end of the day, I just have to live with it. And it will be a reminder of my past and unavoidably, my present.
There’s going to be things that happen that you’ll feel like you can’t get over. And that’s okay. Maybe you won’t get used to it, but you’ll start to be more comfortable with it. There will be things that remind you and they will always be there. Don’t be afraid – just accept them. You are more than your challenges, and way more than your fear.