Osmosis Does Narcolepsy

This video by Osmosis on Youtube is probably the best explanation of narcolepsy that I’ve seen so far! The only thing they get wrong is they leave Xyrem off the list of medications that treat narcolepsy.

Check it out — you may want to share it with that person in your life who doesn’t believe narcolepsy exists. (Everybody knows that person!)

 

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Narcoleptic Nightmares

I don’t know if I’ve ever written about this before, but narcoleptics have nightmares. And since they 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 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.

 

 

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.

museo_9143_622x.jpg

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.

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

Yesterday I had my first day of work as an auxiliar de conversación 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 — I skipped my last two doses of stimulants to ensure that I could go to 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’m 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’t 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’t remember that at all.

I woke up five minutes after I was supposed to have left — it’s 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 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’t know. It’s hard to be vain and too exhausted to sit upright at the same time). I skipped the shower and breakfast — non-essentials, it turns out. 

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

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. 

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

It’s nearly unbearable to feel like you’re wasting your young years and squandering your time in foreign country. Hopefully tomorrow goes better.

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.