Blogs

Narcolepsy Boldly: Wide Awake and Dreaming

December 4, 2014

Julie Flygare is the President and Founder of Project Sleep. Her book, Wide Awake and Dreaming tells an intimate story about life with narcolepsy. Below is an excerpt from her book.

 

Yet, this particular day my desire to record every second of class came up against another, equally strong desire – a dark and unwelcome compulsion to go to sleep. About half way through the class, a heaviness came over my head, with a weight sitting on my skull. Next, my shoulders and elbows began to ache and a wave of nausea crawled up my stomach. I shifted in my chair to find a more comfortable position and stretched my head to one side and then the other, hoping to dislodge the uneasiness swelling inside me.

Property class was an hour and 20 minutes long. I checked the clock on my computer; it was 2:52 p.m. – only 28 more minutes to go. I returned to typing feverishly. I tried to ignore the burning sensation at the back of my eyes but the harder I worked to keep my eyelids open, the more it felt like a ferocious fire blazing behind them. I glanced at the bottom of my computer, 2:53 p.m.

Soon, Professor Liu’s voice faded. Some of his words echoed over and over while others went missing. I squinted to try to read the large font of his slideshow. My typing slowed to a lethargic pace. The lecture slipped like sand through my fingers.Eyes open, Julie. Just keep your – – Next, I opened my eyes and made direct eye contact with Professor Liu. I had no idea how long my eyes had been closed. Embarrassment flooded my body, and suddenly, I was freed from my struggle against sleep. The weight lifted off my skull and the flames died down behind my eyes.

All too soon, the heaviness returned and began seeping downward in my skull, sucking at my strength again. The time was now 3:03 p.m. I walked out into the hallway. Dizzy and only partially aware of my surroundings, I wandered toward the bathroom, as if through a fun-house wavy mirror maze.

I stumbled into a stall and sat down. My head collapsed over my arms and legs. I just needed to rest. Consciousness drifted from me and I started sliding off the toilet seat. I whipped back to attention. The bathroom was silent. Thankfully no one else was there. The heaviness still sat on my skull. My mind teetered between the bathroom and darkness. I tried pinching the skin of my forearms to wake up. I started slapping my face.

With increasing intensity, I slapped myself again and again as hard as possible. These slaps were satisfying, not only because they woke me up, but also because they released a rage in me for not having the backbone and discipline to perform the simplest of tasks, of just… staying… awake. When I’d had enough, I jumped up and down a few times, like a boxer preparing to enter the ring.

Out of the stall, I looked in the mirror at the girl with glassed-over eyes. What is your problem? I splashed cold water on my face and patted a wet paper towel under my chin and against the back of my neck, hoping to refresh myself. I took a few deep breaths and re-arranged my hair to curve my bangs over my forehead. I straightened the collar of my pink dress shirt. On the outside, everything looked right.

The fog had lifted. I returned to class with eyes turned downward, hoping Professor Liu wouldn’t notice me again, the same student who he’d caught sleeping minutes earlier. The time was 3:13 p.m. I’d missed 10 minutes of precious lecture time.

Placing my hands back on my keyboard, I scrolled up to review my notes. The top of the page was organized neatly in a variety of fonts and bullet points. Half way down, the order fell to pieces – with half-sentences, words standing alone, and even letters that formed no words at all. Legal terms co-mingled with random places and names from outside of law school. My stomach tightened. I’d interwoven the lecture with a dream in a nonsensical stream of consciousness.

Drawing my cursor over the scrambled words, I quickly erased the gibberish. The last few minutes of class passed fairly smoothly, with only a few minor dips toward sleepiness. I closed down my computer after class, knowing there were major gaps in my notes, but I’d have to catch up later. What concerned me most was escaping the law school basement.

 

To learn more about living with narcolepsy you can visit www.project-sleep.com and you can continue reading Wide Awake and Dreaming here.

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