This whole time, I’ve been commisurating with other people who have MS, and still feeling like almost no one still *gets* what it’s like to be me.
And that’s because they don’t. They don’t have seizures.
Thankfully, the good people at Patients Like Me have finally put together a community for people with epilepsy.
Now, this is not to say that I’ll abandon my friends over at the MS side. That would be incredibly lame… but it IS to say that when I was filling out the symptom charts, the neurological symptoms (including mood, memory, seizure (including number, types, and severity)) much more accurately matched the kind of thing that I deal with every day.
What’s even more interesting to me is coming to the knowledge that my my seizure disorder puts me in a place where my seizures are more severe and occur more frequently than your average epileptic.
I could be upset about this, and perhaps a small, childish part of me is angry at God for it, if not for one thing that really made me smile.
On the forum there, in a topic about whether or not belief in a deity helps us through our seizures – how we cope with the “why” of having epilepsy, one poster wrote something I 100% agree with. She typed, “We are sick to help others deal and learn. Although each has more detailed reason’s, that is what it comes down to.”
I think we obviously learn from it ourselves, too. But it’s something that rang as true. I mean, at first I thought that developing the seizure disorder was a punishment of some sort, but that was just because of the timing. I mean, I developed the seizure disorder because of my multiple sclerosis… and my first *real* episode that turned into seizure-after-seizures-after-seizure happened 2 weeks before I was supposed to take the CA Bar Exam in 2008. I was hospitalized just before the only CA bar exam where they let in 60% of applicants. How’s THAT for bad luck?
But I’m a good person. Like a really good person. I used to put together all kinds of things for philanthropies before I got diagnosed with MS and this seizure disorder knocked me on my ass, and since it has, I still I foster kittens for the animal shelter even. So after praying a bit, I realized, if this is a punishment, it isn’t my punishment.
So – yes, I find immense comfort in God through the idea of suffering this near constant physical annoyance because it helps make people better. I would much rather be His instrument to help me and others learn than to simply be a piece of of someone else’s punishment, so it really pushed me to find the best way I could use my situation to be an active force to help others learn and to deal with what we deal with every day. To remind them that we’re here, suffering from time to time, but still being awesome, and that we deserve their care, empathy, and time.
That’s why I keep this blog and why I participate in Patients Like Me, both on the epilepsy and multiple sclerosis sides, as well as forums here and there, and on Facebook and LiveJournal. It’s like if I can’t go out into the world because I’m going to have unexpected seizures throughout the day, I’ll make my mind – my consciousness about the conditions and health and whatever else, travel the ether as much as my body remains still.
I just want to make the biggest positive change possible that I can in the world.
So, I’ve found a new way to relate to the world for support purposes — as an epileptic, though I don’t have a diagnosis of epilepsy, it’s a much easier way for people to understand “seizure disorder,” since to the average person, they pretty much mean the same thing. At least from a safety-perspective, it will make it easier to find ways to improve my mobility and self-esteem.
But I never would have found out that there were more people out there, dealing with life the same way I have to, day after day on a couch or a bed, or holding the hand of someone they love just about wherever they go because they don’t know when their body will just go *boom* — if not for Patients Like Me.
So thanks, guys, for making such a difference in my life, and likely, in the lives of so many others. 🙂