I went to bed while the party was in full swing, not listening to the CCR and Rihanna and Bon Jovi and all the other music you’d expect at a house party at which the dominant snack was Nacho Cheese Doritos. I still hadn’t told my boyfriend why, exactly, I was going to bed so early. I had yet to find a good opening.
We were in Nebraska for my boyfriend’s college roommate’s birthday party. I’d been traveling a lot lately, gone every weekend for a month, driving west and then north across a flat Midwest on the verge of fall, leaves trembling, the harvest in full swing, highways of trailers and shoulder-driving tractors. The land was yellow.
Before closing myself in the bedroom, I watched beer pong, I used a propane grill, I watched someone unwrap a package of drugs ordered on the Dark Web. I slept in a sleeping bag on the bed in the master bedroom, unchanged since the birthday boy’s mom moved east and gave him this house, the house he grew up in. I slept, therefore, on a pink bedspread, on four pillows so flattened by time that they felt like one.
At 2 or 3 in the morning, a body popped through the door, then a voice: Are you really asleep? Who are you? Why the fuck are you asleep? I said nothing, waited. I really had been asleep, I was Rachel, and I was asleep because I couldn’t be awake.
Or, more accurately, I really had been asleep, I was Rachel, and I was asleep because I couldn’t be awake despite prying myself there chemically and with will, despite knowing it was silly to drive five hours to a birthday party for someone I didn’t know and then sleep through half of it, despite feeling bad the whole time, like I was letting my boyfriend down, and then feeling guilty for the guilt because it came from the ego-backed assumption that I was important, so important that fun depended on me.
But I shirked nevertheless. Sometime between getting in the sleeping bag and getting woken by the voice, my boyfriend had joined me, in his own sleeping bag, also on top of the bedspread, our awkward tableau reflected in the mirror in front of us against which were propped family photos and stuffed-animal pigs. This would not be a good opening. Nor would the car ride back, nor the next day, during a break in bar trivia, nor the night before I left for the sleep conference, when it was just “the sleep conference,” not the Narcolepsy Network Conference. Still, six years after getting a name for my tiredness, I couldn’t say it in public. I couldn’t say it because, in those years of not saying it, when most people thought sleep was just an excuse, or selfish and self-involved, I had come to believe them, and now it did feel like an excuse—and, at that, an excuse that could be truthfully described as all in my head.
At the conference, the preeminent narcolepsy researcher told us we’re lucky we don’t work like dogs: Narcoleptic dogs pass on the disorder in their genes, and those genes cause the disorder by ridding the brain of the receptors for hypocretin, a neurotransmitter that regulates wakefulness. Narcoleptic people, on the other hand, have the receptors but lack the hypocretin; their immune systems have destroyed the cells that produce it. Think of hypocretin as the key, the researcher said, and the receptors as the lock. It’s much easier to replace a key than it is to make a whole new lock.
The disorder that’s all in the head manifests itself in the body, especially for people with cataplexy, who get stuck in the paralysis of the dreaming body when they’re awake: This is the stereotypical falling asleep of narcolepsy, which isn’t actually falling asleep at all but a disconnect: The brain is awake, the person is conscious, but her body is paralyzed, as if being prevented from acting out dreams.
The researcher played videos of kids keeling over, people barely able to walk they were so overtaken by cataplexy. The audience hummed in recognition, looked at each other across wide-radiused tables with white table cloths, nodded.
After the talk, people milled around the giant ballroom, weaving around tables and chairs, finding their seats with strangers or people they’d met last year, and finishing breakfast before the day’s discussions began. Alice, a woman with dark, severely cut hair, sat down next to me. I wanted to meet Alice because I wanted to meet her dog. She was talking to this dog as she placed her breakfast plate next to mine and said, looking down into fur-lidded eyes, Oh you’ll get your breakfast in a minute, honey—then, turning to me, smiling—I don’t eat sausage.
How’s it going? I asked. She was tired, she said; she wondered if her medication regime was losing its efficacy, wondered whether she’d make it till 10 that morning without a nap; she’d slept 12 hours last night, she said, even skipped socializing with fellow conference-goers in order to be well-rested the next day, the last day of the conference, but here she was, barely awake, so what was the point of all that planning? As she was telling me this, she took a bottle of Pepsi from her purse, set a clear, ice-filled Starbucks cup on the table, poured the Pepsi in it, and put the lid on, green straw poking out. Caffeine isn’t enough, she said. Luckily it was cold in the hotel, and that discomfort had been helping to keep her awake, as discomfort has for me at bars, during movies, in school: I’ve refused cardigans in strong air-conditioning, painted peppermint chapstick under my eyes, and, back in high school, before I suspected anything was awry, when after-school naps seemed a luxury of second-semester senior year, nothing more, I’d pinch the skin on my hands. None of it ever worked, so instead of perfecting a technique to be awake I worked out an in-school sleeping strategy: Pen in hand on paper, other hand supporting forehead, look down long enough while awake to establish that’s just how I was sitting, and then fall asleep.
The woman and her dog and I walked side by side to the discussion on dreaming and creativity. The carpet absorbed our steps almost too well—Do you ever feel like your quads just don’t work? Alice asked me. Yeah, like after taking a Benadryl, right? She nodded: That’s how I feel right now. I don’t know what’s going on.
Everywhere in the hotel, air conditioning thrummed nonstop, the same tone as the outside air, which held the wind-blown hum of the interstate over which I walked three mornings in a row to get to the conference, crossing on a bridge bearing John Ashbery poetry: “The place, of movement and an order.” Construction flanked the highway, and in between the bulldozers and cranes stood a church whose electric billboard read: “We are all under construction” in orange caps.
I kept expecting signs that something was off—people slackening in cataplectic collapse while talking, people walking extra slowly, people drinking coffee nonstop. And while there were slow walkers and coffee drinkers, there are everywhere. As for the lack of cataplexy episodes, said one of the researchers, who’d seen none this year, medication is so much better these days.
The only sign was our nametags. The first day, I walked to the registration table, didn’t sign the photo release form, and then gave my name. Do you have narcolepsy? the woman behind the table asked. Sorry? I said, because it was loud in the hotel hallway, or because no one has ever asked me that. People have asked if I’m tired, how I slept last night; they’ve asked if I have glasses, if I floss, if I have insurance. But not once has anyone asked if I have narcolepsy. The woman had asked because people with narcolepsy got ribbons that read “zzzzz” to attach to their name tags, dangling above and below other labels: Volunteer, Presenter, and, in my case, First Timer. (Non-narcoleptics weren’t left out; they were labeled Supporter.) Each category came with its supposed characteristics—the caring volunteer, the benevolent-in-knowledge presenter—as if they were dimensions, each on its own meaningless but together, like a height given a width and depth, made part of a full object: a person trying not to fall asleep.
I hesitated when I answered, caught off-guard, maybe, or maybe feeling that I’d finally been caught in a lie. To most people, I say nothing, afraid that my sleepiness, like theirs, will be renamed laziness. I pretend that I’m just a cautious person, one who goes to bed early and happens to work best in the morning. I’m a decent friend before 8, but after, I’m way too rigid to be much fun. This is who I am, except that weekend, at the conference, I wasn’t; I was a First Timer, and I wore a zzzzz ribbon, those five gold Zs on an orange background proclaiming me the member of a very particular, nap-oriented in-group.
Every time I left the conference, I took the name tag off in the elevator, afraid that my label would somehow be legible to people who would, in reality, see it only as a bunch of Zs. To those people, I failed to tell myself, the Zs were not a measure of my pathological sleepiness; they weren’t even a unit of measurement in the first place: They stabilized nothing.
At the dreaming talk I learned that you can be dreaming while awake—not day-dreaming, not American dreaming, but in a nighttime dream-like state in which you feel “you know everyone,” “empathy is everywhere,” and “creativity is the norm.”
At another talk I learned that you can lie at work and say you have meetings when really you’re asleep; you can request a standing desk, because falling asleep is easier while sitting. I learned you can still enjoy Blackhawks games with friends but if you leave early they’ll think it’s because you’re bored or because they’re bad company.
I learned that some conference rooms are colder than others, that more people in a room really does warm it up. I learned that scrambled eggs not labeled gluten-free might still have gluten in them. I learned that gluten is bad for you, that it puts you to sleep, that it doesn’t put you to sleep, that it’s good. I learned how to sit at a table listening to a conversation and seem both interested and like I wasn’t listening in. I learned that it is indeed possible to get a caffeine buzz from a Frappuccino. I learned you need to schedule “me time,” you need to put your needs first, you need other people.
I learned that narcoleptic tiredness looks and sounds an awful lot like regular tiredness, even when you’re looking for a profound difference: People drink coffee and Coke and Diet Coke, people yawn, people nod off during boring presentations and movies, their heads dropping forward and popping back up like yo-yos.
I learned that the time of most empathy is the moment right before you fall asleep, when you’re almost there, when talking would take you out of it but when not talking isn’t even a conscious decision. Then, lying next to your partner, bursts of blue on eyelids with each non-blink—then, said the dream-talk psychoanalyst, is when “I love you” would mean the most, if only you could say it.
I learned I’d already waited too long to tell my boyfriend. According to conference consensus, I should have let him know on the third or fourth date; I should have found a moment, in between bites of pizza and sips of beer at the sticky-boothed bar with Cubs specials and a canoe on the wall. I should have found the moment and looked into eyes he calls gray but that are really blue, and I should have said I need to tell you something. And then I should have told him. Or I should have told him on the car ride back from Nebraska, in between podcasts, or the day after, when we were in the cooler section of the grocery store. But even here, after saying the word over and over, when I tell myself to say it again, I can’t.
Rachel Z. Arndt lives in Chicago. She received MFAs in poetry and nonfiction from the University of Iowa. Her work has appeared in Popular Mechanics, Quartz, The Believer, and elsewhere.
