Today is March 26th 2014. March 26th - Purple day. A day that I usually celebrate my epilepsy, spread the word about epilepsy, think of the people who I have met, and the good things that have come from the disorder that most people don't understand, or have no positive memories of.
Today was different though. Today I started to feel helpless.
For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.
But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.
My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.
Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.
As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.
When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.
I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.
I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.
The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.
I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.
For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.
As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.