Going Home

So, long story short, I had my follow-up for my sleep study, and the sleep clinic isn’t going to give me any medicine, for reasons that are dubious at best. So I’m a little out of options now.

I haven’t left my apartment in about a month except to go to school, the grocery store, and my private classes. Even when I’m at school, I feel like a zombie, or like a shell of a human being. I don’t think I have a personality anymore, all my energy goes into not falling asleep. I can’t string sentences together, not in English or Spanish. My room is a wreck because I can’t keep up with all the things required to make my space neat. All I eat is bread and frozen pizzas because trying to figure out meals and groceries and everything related with food planning is overwhelming and I just can’t rely on food that can’t be eaten immediately. I’m too tired to prepare even simple things.

I don’t want to be like this, but I can’t change my situation through sheer willpower — even though I’ve been trying. So I’m going home.

I had planned to go back to the United States at the end of the semester, but this week I realized that it really can’t wait. So I’m going home next Friday, I’ve got a week to pack up and say goodbye to people.

The good news is that I’ll be able to get Xyrem in the US — probably — and that could turn everything around. If my insurance approves Xyrem, I could even get a supply to take to Spain in the fall so that I can come back and teach another year. So I will hopefully be able to come back.

But I really don’t want to leave. I love Spain, and I keep hoping that things will get better, that I’ll have a day where I feel okay and I’ll be able to go to Madrid or travel a little or something. But I never have days like that, so I need to go home and get my health sorted.聽It really, really sucks.

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Excursi贸n 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聽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.聽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聽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, podr铆a hablar f谩cilmente el espa帽ol, si tan solo pudiese pensar con claridad y tener el cerebro que ten铆a 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聽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.聽

On the bus ride back to Alcorc贸n, 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.

Aside

I’m Back!

I’m sorry for not posting anything recently! I’ve been so tired, I’ve had to focus on just surviving day-to-day. But I’m back now!

I’m still trying to qualify for sodium oxybate here. I want to teach at my school for another year, but the meds I take now just aren’t good enough to justify staying in Spain for another whole year, it’s too difficult, I think. But sodium oxybate would be a game-changer — I truly think it would allow me to stay here longer, and to participate more in the Spanish life. I really love Spain, and there’s so much I haven’t seen or done yet, so I’m really hoping that I can get sodium oxybate. Otherwise, I think I’ll have to go back to the States, which would break my heart.

Aside

Conversations with my Students

Some conversations I had today with my little Spanish angel students:

  • “Teacher!! I KNOW WHERE YOU LIVE!!! I saw you going into your apartment AND YOU HAD PIZZA!”
  • “Teacher, if you want to say ‘I farted’ in English, can you say ‘I made a mess?’ You can, right? I know you can. No, you can. I know it.”
  • “Teacher, Borja from Cuarto has a crush on you!! Do you like him? Can I tell him you like him?!” (NB: Borja is 15 years old.)
  • “Teacher, how much money do you make?”
  • “Are you dating Other Teacher? Are you IN LOVE with Other Teacher?!”
  • “Teacher, what color hair does your mom have? And what’s her name?”
  • “Teacher, did you know that in English if you want to say ‘I’m gonna puke’, you say ‘Chewbacca is coming’? No, this is true! I KNOW it’s true!”

State vs State

One of my history classes ran into a little English phoneme difficulty today.

Mid-lecture, a student raised her hand and said, “Yes, what is the difference between estate and estate? They are different words? You pronounce them differently?”

Juanra, the teacher I was helping — he’s young, fashionable, and constantly on the brink of despair about his badly-behaved students — replied, “Well, yes, you have estates like the land聽the nobles聽owned, and then you have estates like the United Estates.”

“And you say them聽the same way?”聽

“Well…”

“No,” I said quickly, hoping Juanra would forgive me for cutting him off. “No, they’re different words, they’re pronounced and spelled differently.”

Juanra helpfully wrote the two words on the board for me: ‘State vs. State.’

“One of them has an ‘e’,” I whispered.

“Oh,” he said, looking at the blackboard. “Joder.”聽

“So you say them differently,” I told the class as Juanra added聽an 聽‘e’ on the blackboard. “The first word, the land the nobles owned, that’s an estate. And the second word is just聽state.”

The entire class, in unison, made a confused noise.

“Can you hear the difference?” I asked.

“No,” they said.

Estate,” I said, as clearly as I could. “State.

“Ehm, that is the same word,” one of the students offered helpfully. “You are not saying a different word.”

“Yes, she is,” said Juanra. “She is saying first聽estate and second聽estate.”

“Uh,” I said. “Here, let’s all listen again. In Spanish, y’all don’t have this ‘s’ and ‘t’ sound together in your words, so it can be very hard to hear and make that sound in English. The first word is聽estate. The second word is聽ssstate.”

Essstate?” Juanra asked.

Sssstate.”

“Sssstate,” said one of the students, and then the whole classroom was filled with hissing as they tried, some more successfully than others, to make the ‘s’ sound without adding an ‘e’ to the front of it.

I felt like an English-language superhero.

Like Espiderman.聽

Teacher, I Don’t Understand

So far, I am loving teaching at my school — a bilingual colegio (public middle/high school) in Alcorc贸n, Madrid.

Here’s how the bilingual education program works:

All students at the school receive at least some of their education in English, with the more proficient students spending more time in classes taught in English — each grade level is divided into 5 different classes, depending on English proficiency.

Teaching core subjects in a second language creates an interesting classroom dynamic, which I will write about at length later, because it’s fascinating. Basically, though, class time is divided between teaching actual content and making sure the students are able to understand and process the English being used in the lesson, giving them plenty of opportunities to ask clarifying questions and practice new vocabulary.

I had expected to be teaching English language classes, but I am actually working in the Geography and History department, which I think I prefer. None of the teachers that I work with are native speakers of English — that’s my job, to be a native speaker — but they have a pretty good grasp of the language.聽Often, though, a聽teacher will misunderstand what a student is saying, and will then give an answer that the student was not looking for, which further confuses the matter.聽

I’m not allowed to speak to the students in Spanish, or even to tell them that I understand Spanish, so that they have no choice but to communicate with me in English.聽For the most part, I’ve been successful at playing dumb about Spanish, but I slipped up a bit today — I was trying to explain what a mace is (the medieval ball and chain weapon, right?), and as I was drawing a picture of a mace on the blackboard, one of the students said to another,聽in Spanish, “Is that a fishing pole catching the sun?”

Without thinking, I turned around and replied, “No, it’s a mace, I’m not done yet!”聽

So that was my bad.聽

The students have a decent grasp of English,聽kind of聽— their level of fluency varies from “age-appropriate” to “clearly just making random noises and hoping that it sounds like English”. I聽wouldn’t say that any of them are聽bilingual, exactly, 聽but most of the students can understand me when I talk and can form simple responses.

One of the funniest things about the students, though, is that they all mispronounce the word “yes”,聽regardless of聽their English level. It usually comes out somewhere between “yisss” and “djesss” — they always drag out the “s”, which I find hilarious, because I think they’re imitating the way native English speakers make the “s” sound — it’s a much stronger sound in English than in Spanish.

So we have conversations that go like this:

Me: Does that make sense?聽

Students (in unison): Yissssss.

The fact that they mispronounce “yes”聽doesn’t exactly make me confident that I’m being understood, but it sure is charming.

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

Yesterday I had my first day of work as an auxiliar de conversaci贸n 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 鈥 I skipped my last two doses of stimulants to ensure that I could go to聽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鈥檓 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鈥檛 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鈥檛 remember that at all.

I woke up five minutes after I was supposed to have left 鈥 it鈥檚 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聽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鈥檛 know. It鈥檚 hard to be vain and too exhausted to sit upright at the same time). I skipped the shower and breakfast 鈥 non-essentials, it turns out.聽

In the end, I was half an hour late for my first class. To put it another way, I missed聽a full聽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?聽

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.聽

I heard an old friend yelling my name, and I knew it wasn鈥檛 real, he wasn鈥檛 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. 鈥淒id you have problems getting here?鈥 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鈥檚 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 鈥 my crying聽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聽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鈥檚 not good to hate yourself, but it鈥檚 also pathetic to be twenty-two years old and late for your first real job because you overslept.聽Sleeping in is caused by a lack of willpower, not by a medical problem. It鈥檚 generally indicative of a major character flaw, of being irresponsible, rude, uncommitted, lazy, self-indulgent, all of the above.聽Right? I mean, it鈥檚 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鈥檛 enough. It doesn鈥檛 make sense 鈥 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鈥檛 wake myself up. And maybe there are days when聽I have to choose between taking a shower and eating聽because I鈥檓 too tired to do both. And maybe sometimes I can鈥檛 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鈥檛 know if I鈥檝e ever cried so much in one day before. Life in Spain is wonderful, but life with narcolepsy is very, very hard, and it鈥檚 harder than you think it is. It鈥檚 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聽your friends, but it’s exhausting to you.聽

It鈥檚 nearly unbearable to feel like you鈥檙e wasting your young years and squandering your time in foreign country. Hopefully tomorrow goes better.