Somedays when I write content for this site, I want to be an advocate. I want to lift others up and not think about my own pain or struggles. Sometimes, I want to run and hide and pretend I don’t have epilepsy. Sometimes, I decide that epilepsy as a concept is worth academic investigation a’ la disability studies. Sometimes, I feel like just being an asshole and making lists that may or may not offend a host of people. There are some things, though, that remain off-limits. Namely, how I think and feel about my epilepsy.
There is a difference between talking about epilepsy in the abstract and talking about my personal relationship with epilepsy. While I freely draw on life experience to educate others, the extent of my investment is heavily edited. I don’t write these posts on a bad day.
I want to share this time. Lately, I’ve been having some dangerous thoughts. I’m a writer and as a byproduct, I have a great imagination. I’m good at telling stories, especially to myself. A few weeks ago, I fell down a very specific rabbit hole where I imagined the 9,000 ways my life could have turned out differently had epilepsy not been in the picture. Maybe I would’ve been less scared of failure. Maybe I would’ve been better at making friends in high school. Maybe I would’ve had better hand-eye coordination and be a total jock.
Maybe, I would have been normal.
These dark reveries aren’t unique to having epilepsy. The desire to be “normal” is strong. It crops up in everyone’s mind now and then. We’re all told that it’s possible to be normal, so we strive for it daily. We berate ourselves when we’ve failed to achieve that golden standard.
But normality doesn’t exist. To be “normal” is something I find exceptionally abstract. I can’t quite fathom what it would mean to be “normal,” or what it would look like, mainly because no one else has it figured out either. I have yet to see someone who has defined what it means to be typical in every sense of the word.
For people with epilepsy, the desire to be normal takes on a new meaning. Not only are you striving for normalcy in terms of appearance or success, there’s now a social cost to being “different.” Because our abnormalities are defined by science, we are discouraged from talking about epilepsy outside of the doctor’s office or with our families. Because silence is encouraged, we feel alone. We feel like we can’t mention it to others because the cost of outing yourself as sick is too high. Or maybe we believe it’s a personal matter; being sick isn’t the same as other marginalized groups. Our conversations about disability begin and end behind closed doors and only with the right authorities on the subject.
People with epilepsy have made efforts to speak to one another about their experiences. Now, there are blog sites like this one. There are Facebook communities and support groups geared towards finding community with one another, and these are resources I use for myself as well.
As a participant in these conversations, I see an overwhelming desire to feel “normal”, and not in the societal or even the diagnostic sense of that word. Rather, the desire to not be “this way.” That everything about you and your life is strange or off-track because you have epilepsy.
I don’t remember my life pre-epilepsy. I have several types of epilepsy, most notably a genetic form of temporal lobe epilepsy and intractable myoclonic jerks. For those of you either not doctors and/or just not epileptic, that means I get the best of both of worlds: I get to have the crazy visions and the voices while also jerking around in my own personal dance routine. The benefits to all of this is that my brain, unlike others, is still intact. I do not have any scarring or degeneration of my brain tissue. My epilepsy is not regressive, so I’ll get to live a long and happy life while also seizing somewhat frequently.
When I’m down the “what-if” rabbit hole, I start to feel like the connection between my epilepsy and the ways in which I’ve held myself back from opportunities is too strong to ignore. I start to believe that I could be a better version of me if only not for this thing inside of me.
I used to be exceptionally angry. I am still angry. I like having self-pity parties, and usually I end the party early. Every time I reach a milestone in my life or achieve something I’ve wanted, it seems like epilepsy is right around the corner, waiting to quite literally knock me out for a while. Contentedness or happiness seems like a conditional state of being because my body force quits and makes me listen. Whenever I seize, the tremors and muscles tensing are the voices screaming at me: “You are sick. You are not normal.”
Despite continuing to have these somewhat depressing spirals, after a certain point, I find it useless to wonder. I will never know what it’s like to be “normal,” and that’s the truth. Whenever I share that, some people react with concern, fear, or sadness, and I get that. It’s not their normal, of course they would be worried or wouldn’t understand me.
I then realize that being epileptic isn’t sad to me. It’s normal.
A while ago, I had dinner with a friend, and we wondered what would happen if we had a magical pill that could make us everything society values and wants: a white, able-bodied, cis guy with lots of money, safety, and the confidence of it all.
She asked me if I would do it, and I couldn’t answer. It comes back to the same problem: I don’t know what my life would be like without epilepsy. When we had this discussion, I was no longer the disgruntled, resentful teenager with a serious medical condition collecting “what ifs” in order to cope. I have a good life. I have people who love me. I’ve made a career out of the perspectives I’ve gained while living with epilepsy. I research it. I write about it. I talk about it all the time.
I realized in that moment that epilepsy isn’t something that I hide anymore.
Epilepsy is more than a sickness to me. It’s a part of who I am. I get frustrated with people who want to objectify the disease, who want to displace it from themselves and say “I’m more than my disability.” Of course you are, but that’s not the point. Disability—like race, like gender—is not going away anytime soon. Maybe you were born with it, maybe you’ve acquired it. Regardless, you’re going to have it forever. Saying you’re “more than that” doesn’t cure the disability.
Despite the glaring abyss of the “what-ifs” that still haunt me, I proudly acknowledge that I am epileptic and not in the “look at what I’ve overcome” way. As I’ve grown, my goal hasn’t been to “overcome” epilepsy. I see the goal of overcoming it as choosing to ignore that it’s a part of my life. I am epileptic, not just in diagnosis, but in life. My sense of purpose and my worth has been inspired by epilepsy. It has shaped who I am. Because of it, I see what the world could look like, and I know that my life is valuable. I know that I can effect change, and I know that I would not be nearly as hardworking or self-sufficient or interesting without it.
Sometimes, others see me as a woman who happens to have epilepsy, but I don’t have that luxury.
I am always epileptic.