This Story Might Save Your Life(5)
Until, assuming I’d had too much to drink, Benny tapped my shoulder a few times. Hey, wake up. That was all it took. The spell was broken. My eyes opened, I turned my head, and there he was: my Benny.
You know when you meet someone, and there’s that crystal-clear moment where you think, I need more of this in my life, or, conversely, I need to get the hell away from this person as fast as I can? I saw Benny’s lopsided smile and wild copper curls, and I didn’t run. He scratched his beard and said, “There you are.”
“Here I am,” I mumbled back.
He tried to take me outside, but I said I was fine. The band started playing a cover of The Cure’s “Lovesong,” and I let him help me up, and he kept an arm around me as we sang along about enduring love.
True story. We’ve been best friends ever since.
But how, you ask, did we get here? That’s the whole point of this memoir, isn’t it? To explain the inconceivable path our chaotic lives took to get to this point, where we have an incomprehensible thirty-five million downloads per month? (Seriously, friends. My mind will never, ever be able to grasp this, and I will never, ever stop being grateful to you for taking the time to rate, review, and subscribe. All the sparkling hearts. ALL OF THEM.)
That story is a tad more convoluted. Let me begin again.
The excessive daytime sleepiness started in the fall of my sophomore year of high school. My parents thought it was typical teenage stuff. A growth spurt, late bedtimes, too-busy schedule. I was tired all the time, but no one found this alarming because every fifteen-year-old is tired. Who can stay awake during social studies? Who doesn’t have trouble waking at the crack of dawn? I trudged along like this for most of that first semester until it started to affect my grades.
Doctors thought it was mono. I was told to rest, and that it would eventually run its course. But a month passed, then two, and I wasn’t getting better. In fact, sleep was consuming my entire life. We tested my thyroid, checked for anemia, diabetes, kidney disease. The words chronic fatigue syndrome were tossed around for a while. Nothing stuck.
I liken it to a broken on-off switch. One second I’m awake, the next my head is heavy. Gravity bears down on me and my eyes begin to burn. My head starts to bobble as my body turns off, on, off, on, and before I know it, sleep is Dorothy’s spiraling house, and I’m the Wicked Witch of the East with nothing but my striped socks and red shoes sticking out. Once it begins to fall, I cannot escape its path.
I want to be clear. This is MY experience with narcolepsy. Every person with narcolepsy has a different story with different challenges and different ways of managing their care. I know some who can multitask their way out of an attack—eating sour candy while driving a long straight road, say, to combat the monotony that would otherwise lull them to sleep. Others who have such severe daytime sleepiness that, despite all meds, it can be nearly impossible to complete even simple tasks. Others still who experience cataplexy, i.e., a sudden loss of muscle control when the brain confuses wakeful emotional stimuli with the emotions experienced during REM sleep. With cataplexy, triggers like stress, surprise, euphoria—even a simple joke—can make the body go limp as if the person is deeply dreaming. If you’ve listened to our podcast, you know how often I laugh. I do not have narcolepsy with cataplexy. And not all people with cataplexy have narcolepsy. As with all diseases and disorders, there is no one-size-fits-all.
But I digress—I’m already digressing! Lord help me, this book is going to be just like our podcast. I was getting around to the moment I first understood the magnitude of my problem.
Picture this scene: Early 2000s. The summer before my junior year. I’m sixteen years old, an only child living in California’s Inland Empire—think smog, heat, smack-dab between Los Angeles and Palm Springs. At this time, there are a lot of dairy farms nearby, so add in some smells. I haven’t been diagnosed yet, I’m swimming in a vat of molasses, and yet all I want is my driver’s license. My parents have promised they’ll give me lessons when I can hold my head upright for longer than half an hour at a time, but I am ready yesterday. I’m Veruca Salt at the chocolate factory right before she drops down the “bad egg” chute. “Don’t care how, I want it nooooooowwwwwww…” I even look like Veruca. Wavy brown hair, little button nose. My nose has since grown into my face.
My best friend this fateful summer, Vanessa, has a cream 1973 El Camino. An absolute boat that can accordion any other car in a head-on collision without suffering so much as a scratch. I’ve been playing down my symptoms, and Vanessa is bored between shifts at Chuck E. Cheese, so I ask her to let me take it for a spin.
Always game for adventure, Vanessa wheels in while my parents are at work and hands me the key. I wait until it’s in the ignition to admit I don’t know how to operate a manual transmission. I omit the part about not knowing how to drive, period, preferring to focus on how the stick itself is a bit of a mystery.
“Teach me,” I beg. “I bow to your superior knowledge of shifting devices.”
Vanessa is a cheerleader and a math whiz, and she loves it when people pay court to her intelligence. “All right, fine,” she says. “But only in the neighborhood.”
To her credit, she’s a good teacher. We’re rolling with the windows down through my lower-middle-class tract home development in no time. What happens next is all me. I’m riding high while quite literally riding low, and then … my on-off switch breaks. I’m a bobblehead. Sleep. Awake. Sleep. Awake. I slap my face, begging my body, Not now, not now, as my hands and feet fumble to downshift. The more I panic, the less the car cooperates, and Vanessa is laughing because I’m only going five miles per hour and she thinks I’m making some sort of joke, and suddenly I remember that all I have to do is slam on the brakes. But it’s too late. Dorothy’s house has landed.