Elaine and the Terrible, Horrible, No-Good, Very Bad First Day

Yesterday I had my first day of work as an auxiliar de conversación at the Spanish secondary school I was assigned to. I was so excited to finally start working, to get to know the kids and the teachers and experience the Spanish public school system. What an incredible experience, right?

The night before, I made sure to set myself up for first-day success — I skipped my last two doses of stimulants to ensure that I could go to sleep on time, put a glass of water and my morning stimulants on my bedside table, laid out my clothes and makeup, and packed my bag so it would be ready for me to grab as I headed out the door. I set six alarms and switched on the timer to my super-bright, blue-light lamp, which I also keep on my nightstand. Then I dragged the nightstand as close to my bed as physically possible so that I would wake with the light from this freaking lamp right in my face, impossible to ignore.

What I’m trying to say is that it was so important to me to be on time for my first day of classes, and I did everything right.

Unfortunately, narcolepsy doesn’t care about your plans because it is a stupid spiteful disease.

The morning of my first day, I slept through the light of my blue-light lamp and all six of my alarms. The alarm clock app on my phone shows that I turned off each one of the alarms as they rang, but I don’t remember that at all.

I woke up five minutes after I was supposed to have left — it’s a twenty minute walk from my piso to the school.

I desperately needed a shower, I needed a lot of makeup to conceal the blotchy red scars on my face, I needed to eat something, I needed my meds.

I took my meds, I put on my makeup while lying in bed (maybe this is ridiculously lazy, I don’t know. It’s hard to be vain and too exhausted to sit upright at the same time). I skipped the shower and breakfast — non-essentials, it turns out. 

In the end, I was half an hour late for my first class. To put it another way, I missed a full half of the class period. I cried a little bit, angry tears, on the way to school. How hard is it to wake up when the damn alarm goes off?Everyone else in the world does it. Why are you too weak to handle this simple life skill? What is wrong with you? 

When I finally reached the classroom, I stood outside the door for a few minutes, unsure if it was even worth making a disruption this late in the period, anxiously pulling on the fine little hairs that grew at the nape of my neck in an effort to concentrate. What was I going to tell my teacher? I certainly couldn’t tell her the truth, that I had overslept. I couldn’t bring up narcolepsy, because no matter how I framed the matter, it would sound like an excuse, and my coworkers would think that I was unreliable. 

I heard an old friend yelling my name, and I knew it wasn’t real, he wasn’t here, but I turned around and scanned the empty hall, just in case. Finally, I unlocked the classroom door (everything in Spain has a lock) and stepped inside.

The teacher looked surprised to see me. “Did you have problems getting here?” she asked, and I lied and said yes, sorry, and she told me coolly that she had nothing planned for me this period, and could I please just meet her in the staff room after class for our planning period.

I said of course and apologized for disrupting the class and went to the teacher’s bathroom and locked myself in a stall and cried until the bell rang. Then I pulled out my little compact and covered up the dark bruised circles under my eyes — my crying had washed away the layers of concealer I had applied while still in bed.

The rest of the day went by fairly uneventfully. I had two coffees and two more doses of stimulants, but within three hours of arriving at school I needed to sneak off to the bathroom to take a nap, resting my head on the hard claw-shaped thing that holds the toilet paper in Spain. When the end-of-class bell woke me, up, there was a yellow banded snake in the dirt by my feet, and I thought it might bite me, but then I blinked and there was no snake and no dirt, just the immaculate white tiles of the bathroom floor.

FullSizeRender (7)I took a selfie in the bathroom after waking up so that we could share this moment together. How sweet!

It’s not good to hate yourself, but it’s also pathetic to be twenty-two years old and late for your first real job because you overslept. Sleeping in is caused by a lack of willpower, not by a medical problem. It’s generally indicative of a major character flaw, of being irresponsible, rude, uncommitted, lazy, self-indulgent, all of the above. Right? I mean, it’s sleeping. Everybody does it every day. The solution is to just wake up.

But I swear, I wanted to wake up on time. I did everything I could, and that wasn’t enough. It doesn’t make sense — how can I be incapable of something so simple and so essential to independent living? How can I be young and smart and pretty and competent by all the usual measures, and yet maybe I can’t wake myself up. And maybe there are days when I have to choose between taking a shower and eating because I’m too tired to do both. And maybe sometimes I can’t walk from my bedroom to the bathroom and back without needing to lie down on the floor for a minute to rest.

I got home that night and cried for hours. I don’t know if I’ve ever cried so much in one day before. Life in Spain is wonderful, but life with narcolepsy is very, very hard, and it’s harder than you think it is. It’s hard to be just out of college and to realize that a twenty-hour work week as an assistant teacher is so easy it’s a joke your friends, but it’s exhausting to you. 

It’s nearly unbearable to feel like you’re wasting your young years and squandering your time in foreign country. Hopefully tomorrow goes better.



“All my friends are tall, thin, and blonde,” my best friend said, laughing good-naturedly as we ate lunch. “It’s like I’m the DUFF no matter what group I’m in.”

DUFF: Designated Ugly Fat Friend.

I looked at her, her deep-set green eyes and long lashes, her freckles and wavy brown hair. I looked down at my white, papery hands, lined with blue veins, which had minutes earlier struggled to open my wallet to pay for my coffee. My damn hands, which can’t hold things or turn the pages of a book or fingerpick my guitar with any sort of reliability.

My appearance makes me feel exposed; I worry that everyone around me sees my thinness, my cheeks scooped hollow by medication, and thinks sickness, the way I do. I worry that they see the scabs on my face and think nightmares. I worry that they see my fumbling hands and think cataplexy. I worry that it’s obvious that I am not mind-body-spirit but mind-and-spirit-against-body. 

I looked back at my friend. You are not fat or ugly, I wanted to say. Not in the least. You are perfect


That night, my friends and I went swing dancing at a jazz club in Pittsburgh. I wore a skirt that was too big around the waist, falling towards my hips, and I worried that everyone could notice. I worried about having cataplexy on the dance floor, about accidentally making a scene and revealing, however briefly, that something is wrong.

I’ve never liked dancing much, to be honest; I’m no good at it, and I feel stupid when I try. But I did dance, hand in hand with one of my friends, who was as tall and blonde and awkward as me. We didn’t know the proper steps, and were by far the worst dancers on the floor, but he gamely twirled me around anyway, first out and then back towards himself. I laughed, excited, and then stumbled as I spun back to him, my feet hitting his, catching myself awkwardly against his side. This is it, I thought. I shouldn’t have come dancing. My body can’t keep up.


But my friend said nothing, and the music swung on. For the life of me, I couldn’t nail that returning spin, stumbling every time, relying on him to straighten me out. 

As the night went on, we picked up some more legitimate moves; during one, he turned me quickly, first to the left and then to the right. As he turned me to the left, we came face-to-face, and he bugged his eyes out at me. I laughed; he turned me then to the right, widening his eyes again, and I collapsed.

He still held one of my hands limp in his own, while the rest of my body laid in a pile on the floor. Get up, come on, come on. I couldn’t help it — it was funny, the face he made. I focused on thinking of nothing, on being blank, until finally I could squeeze his hand, pulling myself up, hoping he couldn’t feel how badly my arms shook with the effort.

We resumed our dancing to the brightly syncopated beat as if nothing had ever happened, trying to do a dramatic dip, made all the more fun as my neck went limp and my head fell back like it was about to touch the floor. We did the left-and-right turn many more times, and I kept my eyes squeezed tightly shut.

We even tried an overly ambitious pick-up-and-twirl move which I loved to the point of cataplexy; every time he went down on one knee, signaling to pick me up, my body froze, refusing to move closer to a sure cataplexy trigger. I would awkwardly step towards him, not even attempting to dance, and he would pick me up —  what’s the proper way to do that sort of lift? We were never sure — and spin me around and around as my eyes closed and my head dropped and I held on with arms that rapidly lost their strength because it was so deliriously fun to be flying, spinning with the jumping jazz music, the cataplexy as jarring as syncopation, loose and rigid all at once, and it was all right. I felt like I fit perfectly inside my too thin, disobedient body, the way those stuttering eighth-notes fit smoothly inside the beat. I felt beautiful.

Just to be clear — I didn’t feel beautiful because I felt free. I felt beautiful because in that space, I didn’t want freedom. I didn’t feel like somebody who needed to be healed. I just felt like myself, like I was dancing in a body that didn’t quite fit with my mind to music that didn’t quite fit with our age. And it was good to exist there, in that messy glorious reality and the stumbling round in the dance.