Southern Legitimacy Statement: I am a Gulf-Coast Southerner, through and through. I was born in New Orleans, Louisiana. For the first half of my life, I lived in uptown until Hurricane Katrina. After swimming out of my home and all of that jazz, I moved around the country until I found myself in Pensacola, Florida. I have taken the lives of thousands of innocent boiled peanuts, and have had the Blue Angels roaring in the background of almost every summer in my lifetime.
The Spaces in Between
It’s late, too late. I have important things tomorrow, lots of them. I have an appointment with the neurologist at 9, followed by the grocery store. I need to sleep, I have to.
I thought the medicine is supposed to help me sleep. It makes me drowsy during the day like they said. I can barely function in the morning; coffee doesn’t seem to help. But at night, no, it doesn’t do jack. I can’t sleep, but I need to.
They told me that sleep deprivation causes seizures. They told me to exercise, eat well, all of it. But it’s not working, it just isn’t. And I have to sleep. I have to.
I open my eyes and find my partner sleeping next to me. She is snoring in that lovable sort of way, the kind of snoring you start to love because you love the person that does it. I try to breath alongside hers. She inhales, I inhale. She exhales, I exhale. What if it happens again? If I have another, I might have more. She inhales, I inhale. She exhales, I exhale.
I can’t stress about it. I can’t worry about whether or not I’ll have another seizure. Worry causes stress; stress causes seizures. Stress reduces your ability to sleep. I need sleep, or I’ll have another seizure. I can’t have another. I need to calm down.
But what if I can’t calm down? What if I keep stressing out and losing sleep? My threshold will drop, way low. Too low. As long as I get six hours of sleep, I’ll be okay.
I check my phone, the bright screen burns stars in my eyes. It’s 5 am. I turn towards the window. The night has faded into day. The sky is turning blue. The birds start to chirp and sing songs, as if to taunt me. She inhales, I inhale. She exhales, I exhale.
It’s okay. I’ll sleep while my partner drives, which is a good hour right there. After that, I’ll nap when I get home. That’s another couple hours. It will be fine. She inhales, I inhale. She exhales, I exhale. She inhales, I inhale. She exhales, I inhale.
Ding, ding, ding.
I’m awake. Again.
“How did you sleep last night?” she asks me. I stare at my bowl of yogurt and my cup of tea.
“I didn’t.”
“That took a while for you to answer. Are you okay?”
“Yes.”
I’m not okay, but I don’t want her to worry. It won’t make it better. I take a long sip of tea. It’s going to be a long day, a very long day. There’s something like an itch in the back of my mind, like my brain is scratching the inside of my skull. Underneath it all is a buzz, a static noise that permeates everything.
She drives me to the neurologist, whose office is 30 minutes away in the center of town. I lean on the glass window and close my eyes. I listen to her music, people talking about women and money. I feel the stops and starts, the jerks and bumps. It’s just enough to keep me in that kind of sleep that isn’t sleep, where you just exist apart of reality.
“Any seizures? Your last one was about…two weeks ago?”
He’s sitting in front of a computer, staring at my records.
“I don’t think so. Yes, it was two weeks ago.”
Some seizures consist of general confusion or zoning out. I’ve heard about people having them at night, while they’re asleep. A celebrity died like that a few days ago.
“I’ve been experiencing some, uh…what are they called?”
“Side effects,” my partner reminds me.
“Right, side effects. Sorry, I didn’t sleep much last night.”
“Ah,” the neurologist says. “That is perfectly normal at this stage of the medication. Anxiety, mood swings, brain fog, memory loss?”
“All of the above.”
“It will probably go away. You haven’t been sleeping? That’s a common cause of seizures, you know. Sleep deprivation.”
“I know, but it just isn’t happening. I close my eyes and then nothing but thoughts.”
“I understand. Have you tried exercising?”
“I get dizzy, very dizzy. Often for no reason. I almost passed out doing the dishes last night.”
“What about turning off all electronics just before bed?”
“I, um, wait, what?”
“Electronics disrupt your circadian rhythm. Try turning them off one hour before bed.”
“I’m also losing my…uh, memory. What did I forget again?” I ask my partner.
“To refill your prescription.”
“That’s right, I forgot to call them. I had to take my emergency supply.”
“Use your brain a little more. Go out and talk to people. That should help.”
“Oh, okay. I’ve thought about trying medicinal cannabis.”
“No, that won’t do. You can’t rely on anything, and there just isn’t enough research.”
“I know a girl who has been seizure free for two years. After a dozen medicines and two brain surgeries, this one works.”
“Still, I wouldn’t recommend it.”
“Can I go down a bit? I don’t know how much more side effects I can take.”
“You are still adjusting; they might go away in five months.”
“How long?”
“Five months.”
Can I take five more months of this?
“Okay.”
“Try to exercise, it’ll help. No screens before bed. I’ll see you in five months then.”
“Five months?”
“Right.”
This visit cost me 50 bucks. He prescribes me more of the same. I fall asleep in the car and wake up in a parking lot.
“Busy like always. Sorry about the speed bumps, dear.”
“It’s okay, you didn’t make them.”
We poke tomatoes and ask the butcher for a pound of ground turkey. I lug a pack of sparkling water, which helps my random want of beer. There are people everywhere, many of which like to stand in the middle of the aisle. I don’t want to talk to anyone. I get overwhelmed easily. My greatest fear is having a seizure in public.
My first seizure was in public. I was in high school and walked into the wrong classroom. When you have a grand mal, you don’t know it until someone else tells you. One moment you’re in school, and the next you’re being loaded onto a stretcher without knowing your address or your mother’s maiden name. I later told that I fell on some girl who screamed. I still think about her sometimes, even though I’ve never actually talked to her.
It’s been a dozen years since then, and I’ve only recently had another. I’ve gotten drunk at bar, pulled all-nighters to write long essays, had a parent die, and moved to three different states. I even got a driver’s license and a car. I thought I had brain cancer until the MRI showed otherwise. I still don’t know why they came back. The research just isn’t there yet.
No baggers, never any baggers anymore. Where did they all go?
I drop the egg carton at the bottom of the bag and stack a glass bottle of lemonade on top. My partner watches me and hurries to reorganize it. I am ashamed. My brain is broken, and it just won’t stop. When will it end? Never, I guess. At least I don’t have a lot of them, it could be worse. But it could be better too.
I swing and lean on the counter. My head feels hot, like my brain is burning itself out. My body is tingling, as if it has gone to sleep. I can’t think.
Where am I? What am I doing?
“I need to go to the car.”
“Oh, are you okay?”
“No, I’m not.”
“It’s okay, I’ll take care of everything.”
“Thank…Thank you, I love you.”
“Love you too.”
I hold my head together while I get in the car. I take a deep breath. This isn’t an aura, just another side effect. I will be okay.
“You can talk, you are fine,” I tell myself as I shut my eyes. “There is nothing to be worried about. You can speak, your brain is working okay. If you can form sentences, you are not having a seizure. You are okay.”
My cheek is wet with warm tears. My head cools and my body stops tingling. That was a close call.
I watch the people put their groceries in their trunks. Normal people who can bag their own groceries. Normal people who can drive themselves home. Normal people who can sleep. Normal people who can drink with their friends. Normal people who don’t forget their partner’s name. Normal people who can do everything and anything.
But maybe not. Their diseases could be invisible, just like mine. You can’t tell I have it even if you watched me fall on the floor, writhing and grasping and speaking in tongues. You can’t tell while I’m biting my tongue, cutting and scarring it. Many people have them without being epileptic.
It’s not the seizures that define my epilepsy. It’s not the medicine, the tests, the appointments. It’s the time I spend waiting for another, the spaces in between.
