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Illness is the night-side of life

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Picture is a repost from Julie Flygare.

La enfermedad es el lado nocturno de la vida, una ciudadanía mas onerosa. Cada persona al nacer posee una ciudadanía dual, en el reino de los sanos y en el reino de los enfermos. Aunque todos preferiríamos sólo utilizar el pasaporte bueno, tarde o temprano cada uno se ve obligado, al menos por un tiempo, a identificarse como ciudadano de aquel otro lugar.

Taking my bad passport and heading home, to the other place.

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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. It really, really sucks.

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.

How to Speak Spanish Like a Native

You’ve probably figured out by now that truly mastering a second language is difficult. It takes time, patience, and dedication.

However, if you ever visit Spain and want to blend in flawlessly without the hassle of actually learning Spanish, you really only need to know five phrases. With these up your sleeve, you’ll be able to have a typical Spanish conversation without a single problem! Nobody will ever guess that you’re a guiri (that’s Spain Spanish for ‘gringo’)!

The Only Five Phrases You’ll Ever Need:

Buenas: Only guiris say ‘hola’. Whenever you greet somebody, say ‘buenas’, as in buenas tardes or buenas noches (if it’s the morning, you can say ‘buenos’, short for buenos días, but let’s be real, you’re not getting up that early anyway).

¿Que tal?: Forget ‘Como estás’, that’s not what Spaniards say. You can ask about pretty much anything using ‘Que tal’, which is useful if you’re not in the mood to form actual sentences. ¿Que tal tu dia? ¿Que tal te va? ¿Que tal el trabajo? So native!

Vale: Want to reassure the locals that you’re following them, even though you really haven’t understood a thing? ‘Vale’ is the phrase for you! It means something like ‘Okay’, ‘Right’, or ‘I get it’, and you can say it literally whenever you want. Try to develop a look of perfect comprehension when saying ‘Vale’, because chances are you have no idea what’s going on, but it hurts your pride to tell a native speaker that.

Joder: The f-bomb. Like ‘vale’, you can say this whenever you want, including in front of your students, without fear of using the word incorrectly. It’s always appropriate to say ‘Joder’.

Hasta luego: Don’t say ‘adios’, that’s what gringos do. You need to say ‘hasta luego’, see you later, even if chances are good that you will never see this person again. To REALLY blend in with the locals, try to drop as many letters from this phrase as you can until it becomes a nearly indecipherable ‘TAUEO’. Say this loudly and with confidence.

These five phrases make up probably 75% of the conversations I have here in Spain. Really, this is all you need to know!

Example Conversation:

Me: Buenas!

Friend: ¡Helen! Joder. ¿Que tal?

Me: Bien.

Friend: Vale.

Me: Vale, TAUEOOO

Friend: TAUEOOO

In Between

  One of the strangest things about having narcolepsy is learning that I experience the world differently than most people do — that the things I take for granted as a normal part of life are not normal at all. You mean your eyes don’t burn when you’re tired? You mean when you wake up, you can move right away? You don’t wake up with your brain first? You don’t spend several seconds fighting to move your unresponsive body, eventually gasping for air like you’ve been startled awake, like you’re coming up from underwater?

It’s especially bizarre to me that people don’t know what cataplexy feels like, and that they can’t relate when I talk about it. There really is no description that can make cataplexy more accessible to someone who’s never experienced it; cataplexy has no equivalent and no words to describe it, because what language invents words for a phenomenon experienced by just 1 in 3,000 people? Unless you have narcolepsy, you can only imagine what I mean when I say “loss of muscle control”.

So what does cataplexy feel like?

Honestly, that question is almost nonsensical. Cataplexy doesn’t have a feeling. It’s what happens when you get caught somewhere between the waking world and the world of dreams, when your mind is grounded in reality but your body is dreaming. It feels like being in between.

I don’t know, maybe that’s too poetic. Let me try again. How does it feel when you’re not moving your leg? Like nothing, right? Cataplexy feels like not moving. It feels like nothing. 

Well, that’s not entirely true — for me, at least, there is an emotional component to cataplexy.  Cataplexy feels like fear.

It feels like suddenly being afraid to smile for no reason other than that I have a vague knowledge that my smile won’t look right, and for some reason, that’s terrifying. It feels like being afraid to talk because I know I won’t sound right. It feels like being afraid to stand in the middle of a room with nothing to support me but my own unreliable legs.

It’s visceral, like needing to escape to somewhere alone right now, a place where nobody can see. It’s a fear so strong I can’t think of anything besides “I need to get out.” If you’re not careful, cataplexy will shrink you into a small, fearful thing. It will control you.

To get to Spain, I had to take two flights, one from Virginia to North Carolina, and then from North Carolina to Madrid. The flight to North Carolina was terrible because I was afraid of flying. I hated taking off — it was scary, we could die! — and I hated the feeling you get when flying, how looking out the window at the far away ground makes you so heavy that you can’t hold yourself up, how every small bit of turbulence is accompanied by fear and a drop of the head, neck snapping down towards your chest. I hated the feeling of being stuck in your seat, pinned down by a gravity that is suddenly too strong, and trying to move make you nearly vomit with effort, and it just doesn’t work.

I felt the plane turn slightly to the right and my head dropped, hitting the woman beside me before falling to my chest, so low I couldn’t breathe. I tried to say sorry, but the word wouldn’t leave the back of my throat.

It’s the change in air pressure, I thought. It feels like torture, but everyone else is dealing with it fine, so I need to stop being a baby.

When the heaviness receded for a minute, I pulled out my neck pillow to support my head, so it wouldn’t roll around. 

I didn’t even consider that not everybody felt this way on an airplane until I looked at the flight attendant. She was bustling around, checking papers, making calls to the pilot, doing her job. She didn’t seem bothered by the heaviness in the least. In that moment, it kind of clicked that there was no way she was feeling what I was feeling, because if she was, she wouldn’t be able to move at all.

That was when I realized, this is cataplexy. I’m not afraid of flying. This is cataplexy fear. And after that I was able to calm myself down, because I knew how to handle it. I wasn’t stuck on an 8-hour flight to Madrid with no way to escape this awful, terrifying heaviness — I simply needed to let go of feeling anything at all, and I would get better.

So I breathed in and breathed out and thought of nothing until I was blank, until I was stuck in between dreams and the waking world, in between Europe and America, a girl who exists not awake, not asleep, but in between.

Me voy pronto…

I leave for Spain tomorrow — currently feeling a strange combination of incredibly excited and scared out of my mind.

I am most excited for the opportunity to develop myself this coming year. My work schedule is not overly demanding, and Spanish culture is more laid-back than America’s, leaving me plenty of free time to practice my Spanish, explore Madrid, write, think, rest, or whatever else I may need to do in order to become a better person. Who am I when everything is different? We’ll see!

I am most scared that I’ll struggle to communicate, especially in a second language — my mind is so slow these days. It often takes a long time to process what is being said around me (the bane of my mother’s existence is that I respond with “What?” automatically, even when I’ve heard what was said — I know it’s annoying, but I need those extra seconds to wake my brain up!). Sometimes, I’m too tired to speak or even to read simple signs — BAKING NEEDS, AISLE FOUR — and it can be so difficult to put words together in a coherent way, with a normal rhythm and inflection. I don’t know where I’ll find the mental power required to do all that in a foreign language. I’ll learn, but I’ll probably also spend a lot of time looking incredibly stupid.

But that’s alright — I’m going to stand out as a non-native Spanish speaker anyway. I’m too pale and Slavic-looking to pass for a madrileña! Hopefully, if I’m nice and smile a lot, people will forgive my slowness. We’ll find out!