Excursión to Madrid

Yesterday, I went with one of my classes to the National Museum of Archeology in Madrid.

On the bus ride there, I tried my best to stay awake and look at the ugly, flat scenery as we approached the city. As the roads narrowed and the traffic increased, Juanra, my best teacher friend, leaned over and told me we had about 15 minutes before arriving if I wanted to take a nap. He sees me every day and can tell, more than anyone, when I’m tired. I’m never sure what gives it away, because I always think that I’m being normal. My mom says you can see it in my eyes.

So I slept for a few minutes before we arrived at the museum. Juanra’s voice woke me up, and he apologized for waking me, but it didn’t matter because I felt slightly better.

At the museum, I was in charge of keeping the 12-year-olds from

1) touching the priceless artifacts

2) taking pictures of the genitals on the statues, and

3) running away.

I was only marginally successful at all of this.

I tried to pay attention as the teacher I was helping talked about the different exhibits, but even though the words entered my brain, they wouldn’t stay there. I listened to everything as best I could, but it was like I breathed the words in and out, like oxygen, and I couldn’t tell you a single thing he said.

We saw a cast of Lucy’s skeleton and statues from the ancient Greeks, and Egyptian sarcophaguses. In the Egypt exhibit, I turned around and suddenly all the wooden floors and all the hallways were slanting towards me, like I was at the bottom of a pit. A group of teenagers were coming towards me, walking down the steeply slanted hallway like it was a ramp, but they were huge, way bigger than any humans should be, and I stared at them because they were a strangely scary.

This isn’t real, I told myself. This is a dream. Museum hallways don’t have slanted floors. But I could still see the floors and they were very slanted. Think of all the museums you’ve been to. Weren’t they all completely flat? Museums don’t make uneven floors. This isn’t real.

My class was leaving the exhibit, walking up the floors, and I as I caught up with them I could feel under my shoes that the floor was flat, and in the next room things looked more normal.

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After the tour, I had a coffee in the museum cafeteria with Juanra and Esperanza, the young, beautiful, and extremely kind philosophy teacher, while the students ate outside in the rain. It’s the first year for all three of us at our school, so Juanra and Esperanza chatted about their classes and their impressions of the institute, while I listened. It’s very hard to talk these days, in both English and Spanish, so usually I prefer not to try.

Juanra said he was a disaster in the classroom, which isn’t true, and I know because I have class every day with him, and I wanted to say something but the thought of opening my mouth was overwhelming, so I kept quiet. I felt guilty, listening to Juanra speak freely to Esperanza in Spanish — we generally speak only in English, which is his second language, and it’s not as easy for him to express himself with precision.

I’d like to speak in Spanish, but my brain works so slowly. It’s hard to string together a sentence in English, let alone Spanish, and I’m sick of feeling humiliated when people hear my pauses and stuttering and assume that my level of Spanish is quite low. In reality, podría hablar fácilmente el español, si tan solo pudiese pensar con claridad y tener el cerebro que tenía antes.

So for the sake of my pride, I stick to English with Juanra, and miss out on hearing his unfettered thoughts.

At one point, Esperanza became very worried that my level of Spanish comprehension was quite low, since I wasn’t talking, and she had been speaking Spanish to me all day. I had to assure her that I understood everything — which is true — and that I prefer to just listen — which is not true, it’s not a preference, it’s a necessity. 

On the bus ride back to Alcorcón, I fell asleep, but this time I felt worse off when I woke up. When we arrived at school, I stumbled to the bathroom to take more medication, but it didn’t help, and when it was time for me to go home I found myself suddenly in the staff room, trying to leave, but I would blink and find that I had stopped moving after only a few steps, over and over, and I was very confused.

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Happy Bird Day!

A week after arriving in Alcorcón, I turned twenty-two.

I still was settling in, so I didn’t have anybody to celebrate with, but it was still kind of cool to walk around town that day knowing that it was my birthday and that nobody had any idea.

Eventually, I decided that my birthday shouldn’t pass by completely unnoticed, so I went back to the pub with the nice waiters to grab a celebratory birthday coffee.

The Andalusian waitress, let’s call her Mari, was alternating between smoking a cigarette and working the patio. She greeted me with a friendly “Hola, guapa! Sit wherever you’d like!” Then, turning towards the bar, she yelled in her rapid, barely-comprehensible (to my ears) accent, “I need a café con leche for the girl! And don’t forget a glass of water!” 

I smiled. The last time I was at the pub, I had gotten a glass of water with my coffee so that I could stealthily take my meds. I guess Mari had assumed that having a coffee and a water was just my thing, and even though I didn’t need the water this time, it was touching that she had remembered!

I wanted to say, “You remember me!”, but I hesitated. I knew all the words, I knew the grammar, but putting it all together… It wasn’t difficult, but I doubted myself! What if I had gotten it totally wrong? What if it didn’t make sense? Or, worst of all, what if I said it right, but my accent was so thick that she couldn’t understand?

So, instead of trying a new sentence, I just smiled and said “Thank you.”

A few minutes later, Mari brought the coffee to my table and I screwed up my courage and gestured for her to come closer. “What’s up?” she said, leaning in.

“Um,” I said, suddenly nervous about speaking. “Today’s my birthday.”

“Ay!” she yelled, excited, and kissed both my cheeks. “Congratulations! How old are you?”

“Uh, take a guess,” I said, not sure if I had phrased that right. 

“You want me to guess?” she said. “Alright, um, twenty-three? No, that’s too old, isn’t it?”

“Twenty-two,” I said, grinning

“So young!” she said. “Jovencita! And you’re here in Spain all by yourself? Totally alone?” I nodded and she swore, using a phrase that I will not repeat here. “Brave girl.”

She went back over to the bar and, leaning inside, said something to the waiter working the bar — the nice waiter who gave me all that food on my first day — and they both returned to my table. 

“Helen!” the waiter (let’s call him Ruben) said, hitting the ‘H’ way too hard. “It’s your birthday? Congratulations! Do you want a shot?” He mimed taking a drink, in case I hadn’t understood.

“Uh,” I said. I hoped that they didn’t think I had told them about my birthday just to get something for free, but I didn’t know how to express that. “Um… Yeah, sure! Thank you!”

Ruben returned a few minutes later, balancing three shot glasses, filled with creamy liquor, on a silver tray. Mari joined him, and they clinked their little shot glasses against mine. “Felicidades!” Mari said.

“No, congratulations,” Ruben said in English, correcting her. His accent was so thick that it sounded like he had never needed to speak English before this very moment.

Happy bird day to joo,” Mari told me in English, one-upping Ruben, and we all drank. 

After I finished my coffee, I said goodbye to Mari and Ruben, returned to my newly-rented piso, and spent the rest of the night relaxing, thinking that maybe I had made myself some Spanish waiter friends.

Cultural Differences: Hola, Guapa!

In case I haven’t made this clear already, everything in Spain is different. Usually, this is kind of cool and exciting and overwhelming all at once, but sometimes it’s just strange.

One of the things that’s been super weird is the fact that Spaniards love to make comments about your appearance. The way you look is a topic that is plenty open for discussion (just like the question “How much money do you make?” and “How many boyfriends have you had?”. But I digress).

If Spaniards think you’re pretty, you’ll know it, and you’ll know it multiple times a day, because everywhere you go there will be somebody who says “guapa” to you before resuming the conversation they’re having with their friends.

It’s not just a creepy middle-aged dude thing, either — I’ve gotten the “guapa” comment from old women and girls my age. It’s not really sexual harassment, either, the way it would be in the States. It’s just a stranger making an unsolicited comment about your appearance. You know, totally normal, acceptable behavior. (Uh…)

At this point, a trip to the grocery store wouldn’t feel complete without passing a couple of old men who mutter “Que guapa”. Entering a classroom without hearing the girls squeal “Guapaaa!” would make me feel like I’m losing my touch.

The only time I’ve every really felt uncomfortable about being “guapa” was when I was introducing myself to one of my classes. I asked if anybody had questions for me, and one 13-year-old boy raised his hand and said, “My question. How is it that you are so pretty?”

I was so taken aback by how blatantly inappropriate this was that I responded by looking at the floor until Juanra, the teacher I was working with, restored order in the classroom. In what world is it okay for a student to make comments like that about a teacher?! When in Spain, I guess…

Lost in Translation, Tinder Edition

Since arriving in Spain, I have spoken exclusively Spanish. Spanish is not my first language, so I have made a lot of mistakes. 

I have accidentally asked my Airbnb host if he was gay (I was trying to ask if he understood me. I have since learned that “Do you understand?” can also mean “Are you gay?” (Side note: He is, in fact, gay)).

I have also taken offense at my flatmate for saying that it’s a horrible shame that my dad’s side of the family is Polish (she was actually saying that it’s a great coincidence. My bad, Alti!).

But there is one mistake that tops the list so far.

Full disclosure: I have downloaded Tinder in the hopes of practicing my Spanish conversation skills via texts with Spanish natives. Obviously Tinder is the most shallow thing ever, and I had my reservations about downloading it because I do not want to be a shallow person, but fellow expats in Spain have recommended using it to improve your conversational Spanish skills. Over here, Tinder is used as a way to meet and talk to new people, and not necessarily as a dating app. Cultural differences, I guess!

(NB: MOM STOP FREAKING OUT TINDER IS NOT A HOOKUP APP OVER HERE. YOU CAN USE IT TO JUST CHAT.) 

Getting Tinder was by and large a good idea, seeing as it has given me plenty of opportunities to make small talk in Spanish, and I have not yet met any creepers or been propositioned. Actually, nobody’s even flirted with me. It’s all been astonishingly respectful.

(NB: IN CASE THIS WASN’T CLEAR, I AM NOT USING TINDER AS A HOOKUP APP. CULTURAL DIFFERENCES, MOM!)

Unfortunately for me, yesterday one of my small talk Tinder buddies told me that he has just graduated from college. The phrase he used was “terminar la carrera”, “to finish a degree”. Sadly, I assumed that “carrera” meant career, because that makes sense, okay, and that he was telling me he just got fired. My response, roughly translated, was, “I’m so sorry to hear that. It’s such a shame you went to college. I hope you get a different degree soon.”

The next time I went on Tinder, he had blocked me. Beautiful Tinder-based friendship over.

On the bright side, at least I won’t make that mistake again!

Coming Out

First things first — I got my visa! Leaving for Spain in 10 days — it’s seriously coming so quick!

Second, I’m spending the week at my alma mater (weird! I’m a college graduate!), mostly to see and spend time with and say goodbye to my weird, beautiful friends.

IMG_0615Specifically, these friends.

Lastly, I’ve decided to be brave and make this blog public, which also means ‘coming out’ about having narcolepsy. It’s terrifying — I would much prefer to maintain a carefully curated Instagram or something similar, something that I can control — choosing honesty is such a difficult thing to do.

But I’ve spent a long time trying desperately to be normal, and that didn’t work. As my narcolepsy got worse and worse, I would sneak off to the bathroom to have my ‘episodes’, on the floor paralyzed by cataplexy or using the toilet as a pillow. I would walk to and from classes, hearing things that weren’t really there and seeing demons out of the corner of my eye. I would spend all night gripped by horrific, violent nightmares that sometimes didn’t end when I woke up, and then in the morning I’d have to clean the tear tracks and scabs on my face, because I would scratch myself when I tried to wake up from the nightmares.

It felt more and more like I was living in a foreign country, but not a cool fun one like Spain — it was more like everyone around me was speaking another language and abiding by a set of rules that didn’t seem to apply to me anymore. I wanted to fit in, but my world looked different from the one everyone else lived in, and I couldn’t tell if I was doing it right.

But that’s okay. That’s why it’s important to make this blog public. Narcolepsy is not a small deal, and it’s not a joke. It changes things.

My friend said something profound to me the other day. I was telling him that I was afraid of having cataplexy attacks in public and freaking people out, and he told me, “Don’t worry about it. People with disabilities exist, and people with narcolepsy exist, and normal people people want to ignore that. So many people with disabilities hide what’s going on because it makes people uncomfortable, but that’s why you need to be an advocate. You need to be open. Live your life, and when you have cataplexy, you’ll be educating people. You exist, and disabilities exist, and people need to know.”

I think he’s completely right, so it’s time to make this blog a little more visible. It leaves me more vulnerable, but our Internet-driven, image-obsessed world could use a little more vulnerability, I think. And honestly, I’m tired of hiding in the bathroom.

Prayer, Interrupted

The other day I had a full-body cataplexy attack in church.

I was feeling ‘off’ before I entered the chapel — I thought maybe I was nauseous, but in retrospect it’s obvious that I was just overly tired — and once as I sat in the pew, folding my hands and beginning to pray, that feeling intensified, and with it came a strong, primal fear, and the desire to escape, like a prey animal. This strange flight response generally precedes my full-body attacks — it’s as if my body realizes before I do that something bad is about to happen.

Breathe, I told myself. You’ll be fine.

In the chapel with me were a few other people my age, members of a church group that met on a weekly basis. I had just started attending their events; today’s was an hour of prayer followed by a ‘book club’. They were going to discuss The Great Divorce by C.S. Lewis, a riff on Dante’s Divine Comedy — both works that I could dissect in my sleep, and I was hoping to befriend these church people by means of my superior book skills.

Breathe, I repeated to myself. In, out. Deep from the diaphragm, because pulling air from my chest was becoming difficult. I tried to swallow, but my neck muscles weren’t responding right, weren’t strong enough to bring stuff down my throat.

This is not cataplexy, I told myself. This is nausea. You will not have cataplexy here. You will not make a scene. Calm down. Think nothing.

My head was dropping towards my chest. I reached for my copy of The Great Divorce, my arms slow and my hands unresponsive. You hysterical, attention-seeking girl. You will not make a scene. You will not scare off these potential friends by being that weird fainting girl. That cannot be their first impression of you.

The air looked unreal. I could see the hazy, spreading colors separating the different layers of the air, the pew in front of me far away. I was the only real thing, everything else was wavy, insubstantial, a dream.

In general, when things become unreal, my prey-animal fear intensifies, and I know that I have less than a minute to get somewhere safe. Cataplexy is vengeful — the longer you fight it, the stronger it runs through you when you finally give in. It does not like to be kept waiting.

I grabbed my book — it took two tries — and my purse, and stumbled out of the chapel. Luckily, the women’s bathroom was right beside the chapel, and I barely made it to the handicapped stall. I am the master of bathroom cataplexy — I know how to hide in a handicapped stall so that nobody can see me unless they’re looking, my back against the stall’s partition, legs straight out. Back when I truly believed that my ‘fainting spells’ were psychologically-driven maneuvers, unconscious ploys for attention faked by some disordered part of my personality, the bathroom became my go-to cataplexy spot, safe from the humiliation that comes with falling in front of people.

(Side note: How can cataplexy be a ploy for attention if nobody ever sees you having cataplexy? Still, on some level it’s easier to believe that I’m a drama-craving attention whore who pretends to faint than to recognize the truth: I have no control over my body.)

As my eyes closed and my head dropped low to my chest, partially blocking my airway, I felt uneasy. If anyone from the chapel came in, they might see me, and they would freak out, and possibly go get the others for help, and I wouldn’t be able to calm them down and explain. They would check my medical bracelet and know that I have narcolepsy, but they wouldn’t understand what was happening, and I would become the girl who sleeps in bathrooms, and that would be their first impression of me.

I breathed, I let the cataplexy wash over me and I thought of nothing until I felt a little better. I managed to stand up and, with the help of the wall, I left the bathroom and went into a room across the hall, far enough away that nobody from the chapel would see me.

In the room, I laid on the floor, panting as if I was being chased. I closed my eyes. My breathing slowed. I opened my eyes. I couldn’t move. Get up, I told myself. You’ve had your dramatic little fall, get up. I couldn’t. Move your hand. I couldn’t. Swallow, you’re drooling. I couldn’t.

I saw swooping black shapes around me. Not demons, I told myself. Dream intrusions. I heard my mom saying, “Lainey? Lainey!”. A black figure stood, for a moment, by the door, before vanishing.

My eyes were open. I was crying. It’s a strange feeling to have tears coursing down your cheeks while your face remains perfectly still.

I stayed like that, stuck somewhere between dreams and reality, for more than five minutes but less than ten, I think. It’s hard to say. I tried to pray — I was technically still in a church, after all — but all I could think to tell God was “I’m sorry”, because I felt bad for not being in the chapel.

Finally, I could swallow. Then I could sit up. Then I could make my way slowly out of the building and into my car, where I called my mom. I rehearsed in my mind, over and over, what I was going to say to her, so that it would have as little emotional content as possible — so I wouldn’t have more cataplexy. “Can you come get me,” I said. The inflection was all wrong, my frozen face didn’t want to make the words — I sounded like a stroke victim.

“Where are you? At church? What’s wrong?”

“In the parking lot. Car.”

“Are you okay?”

“I had. Um. I had. Cataplexy.”

“I’m on my way,” she said. I hung up and rested my head on the driver’s side window and thought blank thoughts until she picked me up. We went home and she was sad and I was sad and I hoped that God understood that it wasn’t on purpose.

An Inappropriate Response

   At this point, not many people know that I have narcolepsy. I’ve told a few, and I try to keep it light so that the conversation doesn’t get weird. Nobody really understands narcolepsy, because it’s extremely complicated and involves science stuff, and I don’t blame them. It can hurt, though, when people are dismissive of a condition that colors my every waking moment (waking moment! Get it?). 

Case in point: I was catching up with an old friend, and mentioned that I had been diagnosed with narcolepsy. His response: “Oh, yeah, your ex-boyfriend told me about that. How’s that going, by the way?”

I took a deep breath and began to launch into the whole thing: My cataplexy, the diagnostic process, how I’ve been adjusting, all that.

Midway into my first sentence, my friend stopped me. “No, no, I mean the situation with your ex. How’s THAT going?”

He didn’t mean anything by it, but his dismissal stung, and we haven’t really talked since.

The truth is, most people are like that, myself included. Be honest — wouldn’t you rather hear some juicy gossip than a detailed description of how it feels to live with a chronic and incurable illness? Being sick is a downer, and people don’t know how to respond to it. This is especially true when you’re 21 years old, and the rest of your friends are still feeling the heady, lingering effects of teenage invincibility, living as if they’ll be special and pretty and full of potential forever. It’s strange to be young and limited.