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.

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How to Wake Up a Narcoleptic

I’ll let you in on a secret: narcoleptics can鈥檛 wake up in the morning.

I don’t know why this is, but it’s true 鈥 nothing wakes up a narcoleptic.

People with narcolepsy can turn off alarm clocks in their sleep 鈥 even the puzzle ones! 鈥 and can hold conversations while sleeping. Their eyes might be open, and they might be responsive, but the minute you leave the room, they are going to roll over as if they were never interrupted, because in a way, they weren’t.

Let me tell you, it鈥檚 humiliating to be unable to master this very basic life skill.聽How can you聽hold down a job if you’re always late because you oversleep? How can you聽hope to live independently when the only reliable way to wake you up is to have someone force-feed you your聽medications and drag you聽out of bed?

Since I’m currently living in Spain, I’ve had to figure out a way to wake up on my own. I’ve established a routine that works a good amount of the time; so,聽here is what I have to do to wake up in the morning.

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All the gadgets I use to wake up, in one nifty pic!

I have a 1100 lumen, 7000 Kelvin lamp 鈥 in regular-people terms, this means the light is 鈥really freaking bright and really freaking harsh鈥 鈥 hooked up to a timer, and before going to bed, I program the timer to turn the light on at 6:30am. I keep the lamp as close to my face as physically possible, and when it turns on in the morning, I usually wake up a little bit from the pain the light causes.

Next, I have my Sonic Boom alarm clock, which is a horrifically loud alarm made for deaf people. It also has a vibrate function, so you can put it under your mattress and it will shake your bed until you wake up. I put it inside my pillow, right under my head, so when it goes off at 7:30, it literally shakes me awake. This is my cue to roll over and take a double dose of my stimulant medication, which I set out the night before next to my lamp on the nightstand.

After I take my meds, the alarm on my phone 鈥 which I鈥檝e placed across the room 鈥 begins to go off, every five minutes, until the stimulants kick in enough for me to be able to drag myself across the room and turn off the phone alarms. Usually this takes about half an hour, bringing us to 8:00.

At this point, my body feels like it鈥檚 been hit by a bus, and I鈥檓 usually too sore and heavy-feeling to walk, so I play Candy Crush on my phone for another half hour 鈥 I consider it a victory if I can do this while sitting up 鈥 until my body wakes up enough that I can go to the kitchen and have a bowl of cereal and three huge glasses of water, at around 8.30. If I don鈥檛 eat at this point, the stimulants will burn through my system too quickly, and I will fall back asleep before 9:00.

I give myself a good hour to get ready, because chances are I will need all of that time. I move slooowly in the morning, and will inadvertently fall asleep during my morning routine, 鈥榳aking up鈥 to find myself staring blankly at nothing.I need to be at school by 10:00 on most days, and with this routine, I am usually only 5 鈭 15 minutes late, which in narcolepsy time is not late at all.聽

Most days, this routine works pretty well. It鈥檚 actually empowering when everything goes right — It feels like, 鈥淵es, I鈥檓 in control, I decide what happens and when.鈥

I occasionally sleep through all my alarms, though, and there have been times when I鈥檝e fallen asleep in the space between turning off the Sonic Boom and reaching for my meds, which is super depressing. It鈥檚 a horrible feeling to keep waking up, seeing your meds within arm鈥檚 reach, knowing that all you have to do to start living is grab them and swallow them, but you fall asleep again before that can happen. Sometimes, this will happen for hours.

Oversleeping is generally an indicator of laziness, or a lack of discipline, and it can be difficult to understand that for narcoleptics, getting out of bed聽is not a question of willpower 鈥 we have to work much, much harder than everybody else聽just to wake up.

Automatic Behavior

Automatic behaviour:

noun.

  1. A behavior performed without conscious knowledge and not under conscious control. Can be observed in a variety of contexts, including narcolepsy. Most of the time, the events cannot be recalled by the subject.
  2. The most annoying thing ever.

Case in point: Yesterday, I couldn’t find my slippers. Slippers are essential in Spain聽鈥斅燼pparently, walking around the house barefoot is the epitome of uncivilized. This came as a bit of a surprise to me. In the States, I think it’s generally considered rude to keep your shoes on in the house, since you’d be tracking filth from outside all over the place.

But this is a cultural difference. In Spain, shoes at all times are a must, so house slippers are the thing to have.

And yesterday, I couldn’t find mine.

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This is my bed. There was something lumpy under the sheets.

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Oh, look! My slippers! Right where I left them.

Under the bedsheets.

Where they belong.

How kind of my sleep self to put away my shoes for me.

Thank you for tidying up, Sleep Elaine. Always helping out. Never making life difficult.聽Just helping.