One minute. 60 seconds. That’s how long a petit mal seizure lasts for me. Even though it is only a minute long, it feels like an eternity. I always feel them coming. My head starts turning to the left and I lose control of my body.
My eyes roll up into my head like they are going to pop out, and I start to grunt. Then I pass out, with little recollection when I wake up.
I remember the first time I had a seizure. I was 18 and at my boyfriend’s house. We had gone out the night before to our friend’s birthday party. The next thing I know, Justin, my boyfriend at the time, was sitting beside me, holding my hand. I was completely exhausted and confused why his mother was standing beside him too.
I remember being happy that he was awake and said to him, “Oh good. You’re awake!” I was not ready for his response.
“Jacquie, you just had a seizure.”
That was my first grand mal. My feet had been pounding on the floor and I was flailing around. I passed out for 10 minutes.
The doctor told me that it was probably just a random seizure and it happens sometimes when people become over-tired or stressed. She told me that I couldn’t drive for six months and, if I had another one, it would be a year. She assured me that it wouldn’t likely happen again. Three months later, I had two more.
It took a year and three different doctors telling me I didn’t have epilepsy until finally a doctor told me I did. I was given rules to follow. No drugs, minimum drinking, two anti-seizure pills a day, no stress, no driving, and no less than eight hours of sleep a night.
***
Living with epilepsy wasn’t easy at first. I was 19, so I liked to go out with friends and stay up late. Not being able to drive was hard too. I had to get my younger sister to drive me or pick me up. My parents had to make a 15-minute drive every day to and from work, the college I was attending, and my friends’ houses. I did end up getting familiar with the bus system and took a cab from time to time, but it was the freedom I missed the most. I was no longer able to just take the car when I needed it.
When I was a month away from being able to drive again, I had a huge grand mal seizure as soon as I stepped out of the shower. When I woke up, I thought I had fallen asleep in the bathroom the night before. I had a bump on my head from falling on the floor and my arm was asleep from lying on it for so long.
Months went by and I had two more seizures after coming out of the shower. I started dreading taking a shower. I was afraid I would seize inside, pass out, and drown. This lasted three months. I had my mom or whoever was home wait outside the bathroom door and yell in every two minutes. When you think about it, three months is a long time when you shower every single day. I was terrified.
Until last month, I had gone a year and a half without having a seizure. I felt like a recovering alcoholic not having seizures for that long. I felt refreshed, satisfied, and like I was a new person who didn’t have this terrible problem.
But this latest grand mal was one of the scariest I’ve had. When I woke up, I had no recollection of my boyfriend, who had just caught me in time so I wouldn’t fall off my bed.
When I fell back asleep, I had another grand mal. This one was so large my boyfriend got my roommate to come and calm me down. When I finally did, I was exhausted. I turned over to look at my clock and I could feel my head start to turn. My eyes were rolling up in my head and again I felt like they would pop out. I realized that I was having a petit mal. The pain I felt was terrible.
When morning finally arrived, everyone told me what had happened, and I instantly became depressed. It was that horrible, sinking realization; my epilepsy would likely never go away.
I’ve lost my license again, which means I can’t drive for another six months. My sleep cycle has to be monitored and accurate, and now I’m back to worrying every night when I go to sleep. Will I seize again tonight?
Or tomorrow?
•••
Lights don’t bother me as they do with some epileptics, but something about strobe lights makes me uneasy – they’re so flashy and close to my eyes.
I wouldn’t wish epilepsy on my worst enemy. It’s not that you have to watch your drinking or you have to go to bed early, it’s the unknown. I can’t help but wonder: What if I have a seizure in the middle of a bar, fall to the floor and get stepped on by heels and shoes?
But I’ve decided I won’t let it control my life. I still go out dancing with my friends, I still drink to an extent, and I still act like a normal university girl. I’m lucky to have friends and family who are so supportive.
And whenever strobe lights become too intense, my friends look over. If my hands are in front of my face, they rush over and block out the lights.
Like my own little wall.
I’m very grateful for that.
