Six years after being diagnosed with epilepsy I finally moved out on my own. I was on my second medication by then—Depakote. It did well for me (except for the required quarterly liver function tests, part of the territory). I was really really excited about being permanently an adult: a bit nervous, especially at being two thousand miles away from family, but really happy at the same time.
And then one day.
You know, I don't really remember what I was doing that day. I do remember I was walking through the living room, and all of a sudden I fell over. My glasses fell off, but I couldn't tell where they were. My neck was curled up against my shoulder—I knew I was biting my tongue but I couldn't feel it. My arm was jerking behind my back in some kind of spastic disco move. My legs were probably twitching and kicking; I don't remember. I do remember praying that I'd lose consciousness. Then it went dark.
I don't know how long I was awake before realizing I was. My first thought was "Is it today?" A bit incoherent, but I knew I didn't even realize what day it was or how long I'd been lying there. After maybe ten minutes I gathered enough strength to turn my head to find my glasses. They were right there beside me, but I couldn't move my arm to reach them. That took another five minutes or so. Eventually I managed to get up, stagger to bed, and fall asleep.
Being alone can be a great experience, liberating and fun, when you're healthy. When you're chronically ill? Not so much. Fortunately it's easier to find support now (online, for example) than it was twenty-plus years ago; still, having a seizure alone is one of the most harrowing experiences I've ever had.
If you know someone has epilepsy, say hi. Ask how they're doing; be friends. It means a lot to us, it really does. And if you have epilepsy yourself? Don't be afraid to talk about it. Don't let it control you. People are good; life is good. Let it be good to you.
And then one day.
You know, I don't really remember what I was doing that day. I do remember I was walking through the living room, and all of a sudden I fell over. My glasses fell off, but I couldn't tell where they were. My neck was curled up against my shoulder—I knew I was biting my tongue but I couldn't feel it. My arm was jerking behind my back in some kind of spastic disco move. My legs were probably twitching and kicking; I don't remember. I do remember praying that I'd lose consciousness. Then it went dark.
I don't know how long I was awake before realizing I was. My first thought was "Is it today?" A bit incoherent, but I knew I didn't even realize what day it was or how long I'd been lying there. After maybe ten minutes I gathered enough strength to turn my head to find my glasses. They were right there beside me, but I couldn't move my arm to reach them. That took another five minutes or so. Eventually I managed to get up, stagger to bed, and fall asleep.
Being alone can be a great experience, liberating and fun, when you're healthy. When you're chronically ill? Not so much. Fortunately it's easier to find support now (online, for example) than it was twenty-plus years ago; still, having a seizure alone is one of the most harrowing experiences I've ever had.
If you know someone has epilepsy, say hi. Ask how they're doing; be friends. It means a lot to us, it really does. And if you have epilepsy yourself? Don't be afraid to talk about it. Don't let it control you. People are good; life is good. Let it be good to you.
My thanks for "coming out of the closet," Matt. In stepping forward, you're a great model for so many.
ReplyDeleteIn 1976, I experienced my first seizure. I was in my high school hallway between classes (read: spectators all around), having felt all morning as though I was disconnected, somehow reading everyone’s minds. What an aura.
The next thing I knew I was in the Concord, NH, hospital, while they tried to determine if I was “an epileptic.” And so began my feeling of being the other, of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be. Was it the epilepsy or the phenobarbital that, at the time, was the go-to medicine for teens? Regardless, it was me, and I was less of a person to my way of thinking.
Fairly soon, I moved onto more effective meds, which allowed me control. My self-esteem stayed damaged, though, and, like so many, I hid my condition. I only dealt with it when I would forget to take pills and have a full-out grand mall seizure – usually with people who didn’t expect it because, that’s right, I hadn’t told them about my epilepsy.
What a waste. Not only was I in a dangerous part of the shadows, I wasn’t handling the root of the problem, the stigma. Furthermore I was missing out on an opportunity to turn around many others’ uneasiness about epilepsy by giving them the information they need to view it properly.
As the years went on, I had seizures every few years, but only when I forgot to take my meds. Because I was in hiding, I hadn’t told people around me at work or others often in proximity that I have epilepsy. It was a shock to all. And I owe them apologies for having put them through it without knowing how to respond.
Growing weary of my self-diminishing secrecy, I came out at 38 years. I looked for opportunities to tell others that I have epilepsy, how common a condition it is on a wide spectrum, and how to handle someone having a grand mal seizure. I found openings when asked what my medical bracelet was for and waited for other appropriate moments to begin spreading the word. It got easier and easier, and my hypothesis is that the stigma often lies in others’ fear began to bear out. I could see the body language unclenching as those I spoke to learned facts that put them at ease with the possibility of being faced with a grand mal. Granted, these may be especially open-minded people, but it did bolster my courage to continue on. I’ve found that almost all those I’ve told haven’t let me down.
Anyone who is living in hiding, please step out and join me. For the good of you, for the good of all, speak the truth about your epilepsy.
Thanks Allison! I haven't exactly HIDDEN my condition, but (largely because it became pretty well-controlled rather quickly) I haven't been proactive in discussing it. (I *really* like your idea of riffing off your medical alert bracelet as a discussion starter. I try and make a big point of why I love purple so much.) It's only been recently that I've seen how important it is for people to know about epilepsy and understand that it's a major health issue. In talking about it, I want people with epilepsy to accept themselves as whole, capable people; and I want people without epilepsy to gain understanding, confidence, respect, and love for those with this multiform condition. (And please please please, for the love of God it is NOT A DISEASE! thankyouverymuch)
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