Laugh at Me, Not My Narcolepsy
If you pop a home video in my dad’s dusty VCR, you’ll probably see my sisters and me, circa 2001, improvising news shows or performing trampoline parody concerts in our backyard. That’s all I did as a kid in small-town Ohio: live off making them laugh.
I’ve always been a performer, but in school I was a quiet, obedient student. My senior year, we had to read 1,400 pages of “Atlas Shrugged” over winter break. Whatever. I devoted every day to reading, and every day tiny anvils attached to my eyelids and slowly dragged them shut. I tried to fight, but I was helpless against my new foe — sudden, debilitating sleepiness.
The next year, as a college theatre major, I needed pre-rehearsal naps. I’d lie in my twin XL bed, set an alarm for 20 minutes, and sleep… until my roommate would start pounding the door. She’d talk to me, but I couldn’t roll over, yell, or even open my eyes, like I was bound by an invisible straightjacket. However, she was never there when I woke up, so I figured these were merely annoying dreams.
Because I refused to let sleepiness affect my studies and theatre activities, my drained energy diminished my social life. I felt like a loser for never staying up late, not going to parties. By sophomore year, I wound up bobbing my head up and down while fighting to keep my eyes open in almost every class. I’d lose track of lectures and abandon scrupulous note-taking for scribbling illegible nonsense about Spongebob. I wrote plays with my eyes closed. I consulted the learning disabilities center. By senior year, I was scheduling solely non-reading classes.
In high school, I had started telling every doctor that I was “really tired — like, more tired than other people.” They’d ask about my schedule and say, “You’re too stressed. Quit an activity.” I wouldn’t listen to them, because A. they were wrong, and B. Extracurriculars lead to Oscars, COMMON KNOWLEDGE.
It took four-and-a-half years for a doctor to humor me enough to refer me to a sleep doctor who humored me enough to order a sleep test. Winter break of my senior year, four years after “Atlas” shrugged my eyelids, my doctor called. I wasn’t surprised with my diagnosis; I am the one person for whom WebMD-ing worked — but “I told you so” currency doesn’t go far. I knew as much about actually living with narcolepsy as I know about people who still wear JNCO jeans, in that I’m sure there is a small group of people somewhere who do that but I have no idea what their deal is.
It’s been five years since then, so I’ll explain: Narcolepsy is a chronic neurological disorder that hinders the brain’s ability to regulate the sleep-wake cycle. It affects one in 2,000 people — 200,000 Americans, three million worldwide. Symptoms include excessive daytime sleepiness; hypnagogic hallucinations and sleep paralysis, aka my confusing roommate “dreams;” and disrupted, restless nighttime sleep. It’s not falling asleep while crossing the street, or whatever else you’ve seen in Rat Race, Modern Family, a Honda ad, or even that viral YouTube poodle.
Thanks to Facebook groups and many sleep doctors, I’m more aware of what I need. I take a daily medication that reduces excessive daytime sleepiness so I can be more alert and productive. Without it, I feel like I’m walking through peanut butter. Meds are nothing, though, without a regulated sleep schedule (same sleep and wake time every day), plus doctor’s orders to treat daily 20-minute naps like medicine. As an actor, this is hard. When I’m performing comedy, it’s either early in the mornings for kids or at night with my improv team. I have to say “no” to most of these gigs in order to keep my sleep routine and already-sparse nap schedule.
There’s a big learning curve. Last year, near the end of a long day of filming a comedy pilot, my knees kept buckling; I’d reach for the floor whenever my scene partners made me laugh. Turns out I have another narcolepsy symptom: cataplexy. It’s a sudden episode of muscle weakness triggered by strong emotions (fear, joy, etc.) that varies from jaw slackening to falling down and lasts a few seconds to several minutes, all while conscious. I’d experienced it after a tiring day at Disney World, sure, but I couldn’t believe it was happening while I was acting. My trigger, by the way? Laughter.
Today’s Double Jeopardy: Gratuitous Example of Irony. “What is, a comedic performer whose cataplexy is only triggered by laughter?”
Nothing will change my goal of being a successful actor and writer. I still work multiple day jobs, audition, perform, take classes, and am a law-abiding citizen with a family, boyfriend, and friends. Yet, this takes way more effort than you think. It’s easy to minimize narcolepsy when you can’t see its effects. Like others with this invisible illness, I feel the need to constantly explain myself, scientifically defending my behavior because I don’t “look sick.” Soo sorry, but I’m more tired than you (#humblebrag). Living with narcolepsy is akin to feeling like you haven’t slept in 48 to 72 hours. You know how you feel when you wake up around 4:30am for an 8am flight, not having slept because you were worried about waking up at 4:30am? That’s me every day. I wake up feeling like I’ve run a marathon (#marathonbrag).
I’ve been afraid that, if I speak up about my narcolepsy, people will think I’m too tired or weak to have an acting career. Au contraire: I am capable, talented, and relentless A.F., and I guarantee I will show up prepared and ready to work. I am phenomenal at faking being well — I believe that’s what you call a “classically trained actor” — but it costs me a lot. Behind the scenes, there’s extreme fatigue, brain fog, memory loss, and a pile of medical bills.
When I tell folks I have narcolepsy, most laugh, amused and bemused. Or it’s shock and fear, like I’ve told them I never wear shoes on airplanes. If I were to bottle Proper Response №5, its prominent note would be calm curiosity, without judgment, pity, or indulgent surprise. “Proper Response №5, by Jimmy Kimmel (comedian with narcolepsy for whose permission I did not ask), available wherever beds are sold.”
Living with narcolepsy teaches me that if I don’t test, learn, and respect my limits, I’ll live by rules not made for me. Knowing when and how to self-advocate is a daily test, from prioritizing naps over networking to deciding when to tell teachers and directors about it. A nagging little voice asks: Am I being lazy? Or am I making an informed choice for my well-being? Much like the WWE, I don’t expect it to go away and can only aim to quiet it down.
One upside? Narcolepsy offers me unique, oftentimes hilarious new stories to tell. Being able to laugh at some of its oxymorons and unbelievable situations is more than a coping mechanism. Humor helps break down stigmas attached to sleep disorders, especially those exaggerated in onscreen portrayals of narcolepsy. Also, it invites people in to better understand our lives. My hope is that when we talk about narcolepsy, or any invisible illness, we don’t shy away or put up walls but instead encourage curious conversation.
I’ll always love performing, writing, and watching comedy — even if, sometimes, laughter literally brings me to my knees.
