I see you eyeing me from across the room. Your table is in the other corner of the restaurant and you won’t stop looking at me. I know what you’re thinking, and to answer your question: no, I am not drunk. I have a chronic illness called narcolepsy.
Narcolepsy is a sleep disorder
Narcolepsy is a sleep disorder characterized by excessive daytime sleepiness, sleep paralysis, hallucinations, and in for some people, episodes of cataplexy (partial or total loss of muscle control triggered by a strong emotion). People with narcolepsy feel very sleepy during the day and may fall asleep involuntarily during normal activities, including eating dinner with my family.1
I don't need any pity
Yeah, the table isn’t the best pillow, but it’s better than letting my head hang back with my mouth wide open. You don’t need to feel bad for me; I don’t need any pity. I’ve been this way my whole life. Today was just one of my more sleepy days, and this isn’t the first time I’ve fallen asleep in public. At least I have this clean table to rest my head on. It’s a lot better than lying on the ground during a rock concert.
A few years ago, I was attending the Louder Than Life festival. If you’re not familiar with LTL, it is a huge rock concert held in Louisville, Kentucky, every fall. Thousands of people will attend this 3-day festival to hear big-name rock bands like Guns N’ Roses, Slipknot, and Disturbed, to name a few.
It was a Friday night, and I had been at school all day. I made sure to take my second stimulant dose a little later than usual. I wanted to be extra sure that I had plenty of energy to last me through the day. It was mid-September, so the temperature was on the warm side even though the sun had started setting.
I felt good, all things considered
We had been there for a few hours already. I was feeling pretty good considering I had been up since 5:00 that morning and only had a brief 20-minute nap during my lunch break. I was getting super excited for one of my favorite bands, which was supposed to perform around 7:30.
My friends and I made our way towards the front of the crowd. I could feel my adrenaline pumping, and my sleepiness was nowhere in sight. Finally, it was time for them to take the stage.
I could not fight the sleepiness
After only a couple of songs, a wave of sleep rushed over me. I tried so hard to fight it, but there was no use. Everyone around me was jumping, yelling, cheering, and singing along. I stood there, still as a tree, and stared blankly at the stage.
My boyfriend noticed immediately and shouted in my ear, “Are you feeling okay?” I didn’t want to ruin his good time, so I told him I needed to go lay down for a bit.
I pushed my way to the back of the crowd, crossed over a short gravel driveway, and looked for a place to lay my head. I didn’t have a blanket or pillow, but I had my backpack with my phone, and that’s all I needed. I noticed a family; a mom and dad, a younger boy, and two girls who looked to be around my age. I walked over to them and said, "Hi, I have narcolepsy, and I’m having a sleep attack. Can you watch over me and make sure no one steals my backpack?”
I laid on the ground for a while, coming in and out of consciousness despite loud booming music echoing throughout the park. I don’t know how much time had passed, but I awoke to my boyfriend patting me on the back and telling me it was time to head home.
Ask me about narcolepsy
So here in this restaurant, if a wall of sleep hits me like a train, I will simply put my head on the table and let it pull me under. I’ve learned over the years that there is no point in trying to fight my sleepiness. I’ve learned how to advocate for myself and tell the people around me what is happening inside my brain.
I would encourage you not to stare but instead, ask questions. I am an open book, and I promise I would not be offended. Actually, I would love to teach you more about this chronic illness that is a big part of who I am.
A Person with Narcolepsy
Do any of your family and/or friends also have narcolepsy?