Narcoleptic Nightmares

I don’t know if I’ve ever written about this before, but narcoleptics have nightmares. And since they聽spend so much time in REM (dream) sleep, they tend to have a lot more nightmares than the average person. At least, I do.

It’s聽not normal bad dreams, either, because they don’t end when I wake up — it’s a bizarre combination of actual dreaming, sleep paralysis, and hallucinations, I think. It’s horrible. The other day, I dreamed that there was a dead fox on my desk, and I was trapped in my room with it, and I had to just lay there, terrified and slipping in and out of dreaming, while it turned green and rotted and its juices leaked onto the floor. I can still smell it.

I’ve never in my life felt as scared as I do during a nightmare, the fear is almost incomprehensible. It’s like, you know that you’re going to die and the feeling of being trapped is so strong and raw, it turns you into an animal.

 

I know that’s like, really melodramatic, but you have to understand how horrible these dreams are. They’re more real than dreams but less real than reality, you get stuck somewhere in between. I have them every night, often many times, and I don’t know why. Sometimes I can wake myself up by scratching at my face, but this is not an ideal solution, because it leaves scabs on my poor face, and they leave red marks long after they’ve healed.

So, narcolepsy isn’t just sleeping a lot. I wish that were the case, because that sounds peaceful. The truth is, I hate sleeping, I hate the time it steals from me during the day and I dread having to go to bed at night, because my sleep is so light that I can feel the hours passing slowly, and I slide in and out of nightmares. Sleep doesn’t give me any rest.

A photographer named Nicholas Bruno suffers from sleep paralysis as well, and he’s made this awesome portfolio recreating his hallucinations. I really love his work, because his hallucinations are strikingly similar to mine, there’s some intangible quality in his art that makes me feel like I’m looking at my own nightmares.

So, if you feel like looking at creepy stuff, you should check his photography out here.

 

 

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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 ciudadan铆a mas onerosa.聽Cada persona al nacer posee una ciudadan铆a dual, en el reino de los sanos y en el reino de los enfermos. Aunque todos preferir铆amos s贸lo 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.

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.

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.