by Caitie Shaw
I’ve written my story before. But I’ve always focused on the positive because I believe that’s the way to moving forward. Lately, I’ve noticed that while positive attitude is awesome it’s important to acknowledge the bad stuff, too. Especially when sharing with others who are suffering from Epilepsy.
The truth is every day is not a great day. I know that’s true for everyone but it’s different for people with Epilepsy.
For me I struggle with the constant worry that I’m going to have a seizure. Especially in social situations. And as a teenager that’s really tough to deal with on a daily basis. I’ve never seen someone have a seizure but I’ve seen videos of myself having a seizure and it’s not a pretty thing. Often I stop breathing. Then, I snort. Yes, snort. It’s not at all attractive. My eyes roll back. I go stiff and then I jerk around. A lot of times I also throw up.
Can you imagine doing that with a group of teens? How would you react? How would I react?
I’ve been really lucky because almost all my seizures have been with family. My little brother still makes fun of me having them but he’s my brother and that’s what he does. He loves me (even if he doesn’t show it). But what about kids I don’t know too well? If my own brother makes fun of me, I can only imagine how some people might react. I want to believe that they would be understanding but part of me is scared they wouldn’t be.
So my coping mechanism has been to stay home when I feel like I might have seizure. This has resulted in a LOT of missed school, not to mention missed parties and social events.
But this year I decided I was going to put myself out there and try to go to as many things as I can. Because staying at home so much is pretty lonely. I like being around people my age. I don’t want to miss out on all my teen years.
Even though I’m turning over this new leaf, it’s still very hard to work up the courage to go to these things. Every time I go into a new social situation, I’m scared. I have to force myself to go out the door.
Being an Epilepsy advocate and co-running this website means I read a lot of stories from people who have Epilepsy and too often those stories are sad. They are about bullying and stigma – at school, in social situations and at work. Sometimes even in their own families. It’s heart wrenching.
Even people who get through their teen years relatively unscathed have to deal with ongoing issues related to seizures: brain damage, side effects of medication, the worry that they won’t be able to have children of their own. And I wonder if my future will also be filled with such worries.
I’ve had a lot of good happen to me through my advocacy. I’ve made life long friends, I’ve won a national youth award from Canadian Living and Me to We, this website is even a finalist for a world-wide award. But the shadow of Epilepsy affects my life every day. The challenge is to not let it win.