- 1 NYC restaurant host
- Crap damaged hypocretin
- A Lenten bedtime
- National Sleep Awareness Week!
Instructions
If...
Please excuse me while I drop my head back and gape my mouth open for five minutes.
Sorry about that. Now, what do these ingred...
Please excuse me while I consciously subject myself to a predictably open-ended and regrettable supine break atop my made bed.
Oh, shit. Is that... what is that buzzing? Did something bad happen-- it's always something bad, isn't it?! Buzzing, ringing, vibrating... Ah, my phone! Alarm? Agh, what time is it? Is it time to wake up, or is my phone doing something else? What else do phones do?! PHONE CALL. My phone is ringing, I should reach for it, yes, it says a name-- my roommate's. Oh! Answer it, Anna!
"Hello?"
(What I mean to and think I sound like:
What I actually sound like:
)
My roommate says something about me letting her into the apartment. I grumble something in regards to "yes," pull the phone away from my ear to realize where and when I am in time, and then make an unclearly motivated return to the phone to repeat my "yes." I ghost walk through the hallway to the front door, fumble with the lock, and, just as I swing open the door, gain alertness. No need to apologize, roommate! You saved me from a ~three-hour uncomfortable, unrestful, lights-on collapse. So, thank you. Thank you for waking me up.
... I'm not being sarcastic. Seriously! I don't even know how to be funny (or any civilized, socially appropriate adjective) when I'm in that weird state of sleepy, so it would be really impressive if I were being sarcastic. I have about three basic emotions in my wheelhouse while narcolepting: thankful, pained, angry. Mix 'em together and it's a solid languish.
(By the way, this actually happened in real time whilst writing this article. That's some real life reporting. I'll take my Pulitzer now.)
While my roommate-- let's call her "Cascade", as I've had two people mishear her name for that, and now I really want that to be someone's name-- happens to be wonderfully understanding of my narcolepsy and its accompanying unintended aggression, not everyone easily accepts my extreme personality changes.
Cue: Year 2 of Knowing You Have Narcolepsy:
2:30pm: I get to work at the restaurant.
2:40pm: A manager asks if I'm OK. He half-jokes that it's less about looking pleasant in front of customers and more about being pleasant around those I'm working with.
3:00pm: The maitre'd asks if I'm OK. She says I'm not my normal self-- all because I didn't say "hello" to her first when she came in, like I usually do. Do I always have to be June Cleaver over here?! I'm fine.
3:30pm - 4:15pm: ... I begin to think my manager and maitre'd may be right. How did they notice it before me? What is it?
4:30pm: Mid-stuffing a dinner menu, I freeze. DAMN IT. I forgot to take my Modafinil stimulant this morning! How on earth?! I never forget! Whatever; June will have to power through.
5:00pm - 5:30pm: Dinner starts. I am pushing, not powering. I mention to my maitre'd that I realize I forgot to take my medication. She laughs.
6:00pm - 8:00pm: I gradually lose focus and stop talking. My typically energetic Cleaver-ful walk slows to something of a death march. My fellow hosts notice, of course. One is not happy, while the other asks questions about narcolepsy. Eventually, I am in my own little world.
8:00pm: The closing manager says he'll be keeping me later and "you're OK with that?" I am not OK and I am not OK with that, but I couldn't even look at him. "Of course you're OK with that," and he walks off.
8:45pm: The maitre'd checks in with the other hosts to see if they can handle coat check on their own. Non-Understanding Host makes sure to let her know that they definitely still need me.
9:00pm - 9:35pm: I am slurring my words. I lose the ability to walk straight and have to support myself by leaning on the podium. After I slowly amble back from a trip to coat check, with all three watching, the maitre'd smiles and asks me if I'd like to leave. "THANK YOU" streams like tears from my mouth, but she follows with a teasing, "Next time, remember to take your medication," and a little laugh. All I can muster is, "Hey, this is much less fun for me as it is for you."
9:36: I am sent away with a "Feel better!" and drunkenly descend the stairs to the basement. How funny would it be if they found me sleeping in the locker room hours from now, I thought, actually considering it for a second. Then they'd know.
Why this story? Why is this significant in Year 2 of Knowing You Have Narcolepsy? For the first time, I felt embarrassed. For the first time, my narcolepsy made me want to cry. For the first time, I felt it publicly, actively, and visibly affect my work performance-- for a job not at a desk! And I felt like, for certainly not the first time but the first known to me, no one cared.
Over the 4.5 hours of dinner service that night, I never once spoke with my manager about it. I'd only told one of my four managers that I even have narcolepsy-- what was I supposed to do, walk up to another one in the middle of service and say, "Hi, I have narcolepsy and right now I'm fighting an rarely extreme attack. May I please go home and sleep?" I was trapped. And how could they care, really, without knowing what narcolepsy is? These are good people I work with. Everyone in the restaurant business is tired-- we all haven't sat down in 7+ hours!
Plus, in our Host Meeting the week before, we'd been told to not ask when your shift is over. And I always follow the rules.
 |
| At first, I thought this said "Superhuman." Hit me in the feels. |
I am a good employee, (typically) motivated, kind, bubbly-- that's why they noticed June's change in demeanor in the first place. Yet, I felt like 2 out of the 3 people who knew what was going on thought I was acting like a baby. I adore my fellow employees, and still do, so I thought perhaps this was all in my head. However, the next day I greeted the maitre'd and she responded with: "I'm glad to see you're in a much better mood."
PEOPLE. People of the free world who have high school degrees or college degrees or advanced college degrees: narcolepsy is not a MOOD. Narcolepting (a phrase I feel no one else uses in the narcolepsy community, and so I'm just gonna say that I made it up) is not like waking up on the wrong side of the bed; I'm always on the wrong side of the bed. It's not like PMS; people understand PMS. It's not like being hangry; food and planning will not cure it (no matter how hard I try). Actually, it is somewhat like all of these things combined, in different ways, but at the end of the day it is an uncontrollable, unavoidable state, ready to attack at any time. It's not caused by any sort of personal flaw but rather one's brain's lack of hypocretin.
Hypo-WHAT now? This shit got cray.
Hypocretin is a boss chemical in your noggin that regulates wakefulness, REM sleep, and other dope things like appetite and happiness. Those of us with narcolepsy largely lack it, which is cool because it gives us something to blame weight gain on and not cool because of everything else. Here, I happen to know a lot about the subject, so let me help explain it to you better:
I'm kidding, I have no idea what that means. This is all I understand:
So, yeah, folks: narcolepsy is an autoimmune neurological disorder that affects chemicals in the brain. Genetics. Science. Facts. My bad mood is not my fault.
If what you're thinking is that I think I've found a way to blame weight gain, fatigue, and bitchiness on a tiny little chemical out of my control... then you're right.
Oh, shucks, I can't lie to you: I still struggle to accept that I shouldn't and can't compare myself to others without narcolepsy. I still walk a fine line between motivating myself to "make a better me" and pushing myself too far. I still beat myself up. Not literally. What if I did mean literally? Would you call the cops?
Anyways, Year 2 of Knowing You Have Narcolepsy is all about the struggle: figuring out the ying-yang between laziness and acceptance; dedicated perseverance and unrealistic goals; blame and, well, blame. How much can I blame on my narcolepsy/my lack of hypocretin cells? I'm learning to adopt all of the "lifestyle remedies" so I can blame everything that's left on my disorder. No, really, stay with me: honestly: that was poor wording: lemme try again: for example, my Lenten promise this year is regulating my sleep schedule, which I should've been doing all along. I force myself to sleep 8 hours a night, 12am-8am. I've also Lentenly promised to eat healthier and practice yoga every day. So NOW what, narcolepsy?! It's all on you.
What parts of my fatigue are due to me and me alone? I have no freaking clue, but I have a frickin' clue, which is a lot more than the clue I had last year and the mystery I had before then. In the past year, I've met people with narcolepsy in Central Park, walked for the Narcolepsy Network in Battery Park, submitted a personal essay on narcolepsy as a writing sample to a publisher, told managers and too many first dates I have narcolepsy, met the Julie Flygare, and learned that narcolepsy is an autoimmune disorder! And that info is what changes everything. It helps recipients of this:
become recipients of this:
Autoimmune-screwed hypocretins bring me one sweet step closer to understanding what the freaking frick is up with my mind and body. Seeing as it can take some people as long as 10-15 years to even be diagnosed after symptoms appear, I don't take my sweet step lightly. I STOMP, y'all.
In closing, in honor of National Sleep Awareness Week and Suddenly Sleep Saturday, in memoriam for all of the sleep we've all lost all those unnecessary times: take sleep seriously!
