Sleeping

For a short time, when I was a little, little kid, I shared a room with my brother. He was a one of those lucky people that could fall asleep the moment his head hit the pillow. My mom and I had a deal that if I went to bed at the same time he did, I could get up when he fell asleep and watch TV with her. Mostly I remember Carol Burnett doing the Tarzan yell and Johnny Carson laughing. When I was old enough to read, I’d read late into the night. Mom would yell at me to turn off the light, so I used the same lesson she taught me and turn off the light and wait until she was asleep and turn it back on. For a long time, I just thought my sleeping problems were just a life time of bad habits.

At some point, something changed. I can actually pinpoint the time frame. When I was fourteen, my uncle had a stroke and we spent many, many days for the next few years driving to visit him in facilities in different parts of the state. During my childhood, my brother would sleep on road trips, but I’d read unless it was too dark, then I’d stare out the window trying to count the white highway dash lines, listening to my mom and dad talk about semi interesting gossip. But after my uncle got sick, I started falling asleep in the car, almost immediately. I thought being in the car all the time finally taught me the fine art of road trip sleeping. But I also started falling asleep other places–like during school and movies. I wrote that off as staying up late to work on homework. That continued to be my pattern for decades. Weird sleep patterns at night, but unable to stay awake when I sat down for an activity. It made for embarrassing moments. One time I fell asleep in a college lecture and my friend woke me up and I screamed like I was being attacked, causing the entire room to turn to look at me. The professor said, “My lectures don’t typically inspire such horror.” Another time I punched a man on an airplane when his cell phone ring woke me from a dead sleep and my arms flailed out in a startle response. If a video was taken during these moments, I’d have a hilarious reel.

I mentioned my sleep difficulties once to a doctor during my twenties. She told me that I was just a young mom and it was normal to feel tired all the time and that I needed to not nap and go to bed at the same time every night and only sleep in bed, not read, or write, or watch TV in bed. My daytime sleepiness got so bad that I couldn’t drive to thirty minutes without getting really sleepy. And I started taking naps in weird places–like the mall, and the book store, or a random park bench. I started making fun of myself, saying I was in training for my life as a baglady. But at night, I continued to be restless and I’d wake up all night, reaching for my cell phone to check the time and then checking my Facebook, or playing a game on line, before trying to get back to sleep.

I suspected that I might have a real problem one day at school. I was doing a weaving unit and I sat down with the yarn and the kids would have to come to me if they needed me to tie or cut more yarn. It was chaos–twenty five kids with yarn–picture kittens learning to knit. And I DOZED off, probably just for a second, but I jerked awake to a little girl in front of me asking for blue yarn. Soon after, my daughter looked up the symptoms for narcolepsy, and read them off to me. I had EVERY. SINGLE. ONE.

The big marker is cataplexy. Cataplexy is physical collapse during strong emotion. Some people have cataplexy so strong that they fall over, or can’t move. Mine is super mild. I feel it when I laugh hard. It’s like my body is having weird muscle spasms. I just thought that’s how my body felt when I laughed really hard. I didn’t know it was an actual medical condition. I went to a sleep doctor and I did the sleep study.

He thought I’d be a slam dunk narcolepsy patient, but I woke up 134 times during the course of my sleep study, even though I don’t have the typical signs for sleep apnea. The doctor said my uvula was a little long and blocking my airway when I slept. He said that it didn’t rule out narcolepsy, but I had to try a CPAP, to see if it improved my sleep. SO I gave the machine a try. It didn’t help at all, just made my face cold.

What actually did help was just knowing that I had TWO legitimate sleeping disorders. My sleeping issues weren’t from Johnny Carson, reading, or even blue light. My erratic sleep habits were because my body couldn’t stay awake or stay asleep. Even though I was a little sad that truck driving school is off the table forever, it was a relief to know the root of the problem.

In a lot of ways I am really lucky. My cataplexy is mild. I’ve never fallen over or become paralyzed. In fact, I’d bet money that I’m the only one that notices the weird muscle spasms. I can tell when the sleep attacks are coming and I can get to a safe place to nap. The lucid dreams have given me hundreds of story ideas. One day one of those dreams might be the next bestseller…