This is a hard post to publish. I rarely speak about personal matters on this blog, and I don’t plan on changing that, but fact that I am afraid to publish this post tells me I need to. There’s a fear in telling someone you have epilepsy, an assumption you will be judged. And there is fear for those around you when they find out you have epilepsy. In publishing this post I hope to stamp out some of the fear for all of us (fist pump).
March 26th is Purple Day, a day to raise awareness about epilepsy. I wrote an article about my epilepsy story and posted it on Medium in honour of Purple Day. You can read it on Medium, or below.
Here’s the Thing About Epilepsy
Here’s the thing about epilepsy: you might not know you have it. That’s how it was for me. It was a silent thing, a monster in my brain, lying quiet until suddenly it wasn’t. Or something happened that made it grow there. Most of the time no one knows where it came from.
I found out when I woke up on the floor of my home office, my pants soaked with pee. I was lying flat on my stomach, my face resting on my folded hands, the posture you’d take after an aggressive back bend in a yoga class. The sun shone in the office window. My cats sniffed around me. It was like I’d just lain down and taken a nap. Except my pants were wet and my head hurt like someone had smashed me with a sledge hammer. I texted my husband (then fiancé): Something weird happened. He left work early and found me sitting on our stairs, now in dry pants, entirely confused. But he knew right away. I have snapshot memories of the drive to the hospital, my husband cursing when he took a wrong turn, the bleeding face of a man in the waiting room, me puking in a dirty bathroom, me puking more in a pan a nurse gave me. My brain, hurting in an incredible way I never thought possible. Twelve hours in a hospital waiting room and a lot of vomiting later, I woke up just as I was ferried into the CT scanner.
“Nothing on the scan. She seems fine.”
And home I went. Until it happened again, six months later. But this time my brother found me mid-seizure, and then my husband saw me have another one at the hospital. “I feel funny,” I told him right as it started. That time I remember almost nothing, except a very nice doctor holding a cardboard bowl that I threw up into. For me, epilepsy means lots of throwing up. My husband took my writing notebook from my purse and recorded everything that happened. The drugs they gave me. The drugs they missed giving me that prompted the second seizure. Did you know that anyone can have a seizure? One in ten people do in their lifetime (source). But it’s the second one that makes it a ‘thing’.
The worst part about having a seizure for me is the headache after. The massive migraine. And the forgetting. I can’t remember two years of my life. I can’t remember the movies I watched, the books I read, the things we did. The only things I do remember are the things we have pictures of, so do I really remember them? Probably not. Friends know not to press me when I can’t remember something from those years. We make it into a joke: “The lost years”.
After the second set of seizures, they put me on medication. It gave me massive hives. I switched medications. The déjà vu’s I’d been having for 10 years stopped. Turns out they were simple partial seizures — petit mals, they used to be called. I like that word, petit mal: little illness. The big ones, the ones you see re-enacted in movies, where people shake about on the ground and foam at the mouth, are called generalized tonic-clonic seizures, or a grand mal — big illness. I’m incredibly lucky. The second drug I tried worked. The side effects waned after six months or so. I got my driver’s license back. I could take baths alone again. My husband stopped worrying when I didn’t respond to texts immediately. My life returned to almost-normal.
But when you’re epileptic, your life is always almost-normal. You have a ticking time bomb in your brain. Even when your disorder (they call it a disorder, I think mostly because so little is known about it) is controlled, like mine is. After my first seizure, I worried all the time. What if I fell down in the street, just walking along? What if it happened at work, at a party? What if I peed my pants in front of my co-workers? What if it happened when I was alone, in the bathtub, driving a car, running on the path in the woods? What if I fell and hurt myself? What if it started while I was walking down stairs? With epilepsy there are so many what ifs.
And then there’s the way it scares the people you’re around. Some people don’t want to talk about it, usually out of politeness. Some ask what they should do if it happens. That makes me happy. It’s nice to be open about it. Because when you’re not it’s a dirty, scary secret. It scares people to think at any time you might start freaking out, fall down, lose total control of your body and mind. Trust me, it’s frightening to be the one it happens to, but I think it might be worse when you’re witness to it. I’m so confused when I have a seizure that it’s not scary until much later.
I know it’s worse to watch a seizure than to have one, because I know what it’s like to be on both sides of a seizure. My brother is epileptic too. His first seizure came out of nowhere, just like mine. One day, he was a normal nineteen-year-old guy who’d just picked up coffee at Tim Horton’s with his brother. Three minutes, later, he was having his first seizure in the passenger seat of a car. For my brother, epilepsy meant he missed his 20s. An entire decade spent with doctors, on different medications, in hospitals, and eventually in an operating room, having part of his brain removed. But he’s okay now too. He’s better than okay. We’re so, so lucky.
I’m going to try to explain what having a seizure feels like for me. Because it’s the unknown that’s terrifying, and maybe this will make you feel better. I get a weird taste in my mouth, like blood or metal. And then everything feels like it has happened before. Déjà vu. Black. And then snap, I’m awake. My head kills. Nothing makes sense. I think I sound like a child, confused, quiet, small. Sometimes I laugh. And then several hours later I’m back, just in time to deal with the massive migraine. I don’t know where we go in that in-between time, after a seizure and before we really wake up. It has a name, that time: postictal. Haha. Post-Tic. You are in a room of your own, a room in your own brain. Or maybe you leave your own brain because there’s a wild, rocking party of dancing electricity that you can’t control going on.
There’s a letting go involved in not being able to control your own brain, your own body. I’ve dealt with my epilepsy by trying to use humour. To be as open as I can bear about it. To live a normal life and let others see epileptics can be normal people who do normal things. There are good parts. My medication is being used in Alzheimer’s disease trials. It could make my memory better in the long run. I take much better care of myself. I do yoga, I eat well, I keep my stress levels in check. Now I don’t worry as much about having a seizure in a random place. I’ve long surpassed the magical ‘one year seizure free’ that opens all of the doors that my second seizure closed back up. But epilepsy isn’t like this for everyone. For some people, their seizures refuse to be controlled by drugs. The electric dance party in their brain could happen at any time. They walk around wondering when the next big one will hit, the next ‘big illness’. They might have multiple seizures a day. They might wake up in their own pee on floors. That sounds crude, but it’s true.
March 26th, 2017 is Purple Day. A day for raising awareness about epilepsy. As much as I talk a big game about being open about my epilepsy, I haven’t told as many people as you might think. And that doesn’t help anyone. So I’m telling you. We should all know about epilepsy, about what to do when someone has a seizure, both for the person seizing, and for you, the terrified person watching it happen.
Go here and learn what to do when someone has a seizure (spoiler alert: no wallets or sticks in mouths anymore). And, if you are with someone who has a seizure, be calm for them. Comfort them. Wait for them to come back from that in-between, postictal world. Don’t make them feel like a freak. Because seizures can happen to almost anyone.
If you want to know more about epilepsy, or donate to support epilepsy research, or show your support on Purple Day, visit http://www.purpleday.org/.
