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聽that person!)

 

Sorry!!!

Wow, I’m the worst. I haven’t written at all since I came home from Spain three months ago. I’m sorry!

In my defense, it’s been a weird three months. To summarize, I came home, was a pathetic slug on the couch for quite a while, started a free trial of Xyrem, loved it, everything was awesome, had to stop my trial of Xyrem to do a sleep study for insurance, went back to being a couch slug for weeks, did the sleep study (spoiler alert: I have narcolepsy), went back on the trial of Xyrem, had a SUPER RARE AND WEIRD reaction to Xyrem because I didn’t titrate back up, spent a week in the hospital, left the hospital and am now taking a little bit of time off from聽all meds to reset my body聽while I wait for my insurance to pay for my first real, non-trial shipment of Xyrem. Once they pay up (which will happen very soon, I hope!), I’ll get my first month of my very own Xyrem and will be good to go.

Even being hospitalized is not going to scare me away from Xyrem. It’s amazing. It’s a miracle drug, I’m telling you. It might be an actual miracle. I’m going to write a lot more about it because I think every narcoleptic should be on Xyrem, it’s THAT GOOD.

Case in point: when I was on Xyrem, there were days when I had to seriously ask myself whether I felt normal or not. 聽It was like,”What is this weird feeling of nothing being wrong with me? Is this how everybody feels all the time?”聽That’s how close to ‘normal’ I was!

It was like having a second chance at life, I felt better than I have in years and it was like my future was unlimited. The huge divide that I felt between myself and everybody else vanished because, for the first time, I had one foot in the land of the awake. My聽other foot will probably always be in Dreamland, but at least with Xyrem I can exist in both worlds.

I’ll write at length about Xyrem soon because if there’s one thing I’m good at, it’s talking a lot about the things that interest me. And when I feel good, it’s FUN to write and I WANT to write, which is amazing too. Everything comes so easily when you’re not exhausted.

Thanks for sticking with me. I am seeing the light at the end of the tunnel and I can’t wait to tell you about how great life is right now.

You Are Brave.

I have a confession to make.

So many people have told me that I’m brave for moving to Spain. It’s something I can count on, the part of the conversation where they ask, “驴Est谩s sola en Espa帽a?”聽— Are you alone in Spain? And I say yes, and they say, “Joder. Eres valiente.” — You are brave.

And I never know what to say in response, because here’s my confession: It’s really not that hard.

Having narcolepsy is a thousand times harder than living alone in a foreign country,聽so much harder that it seems almost stupid to compare the two. Living in Spain isn’t difficult the way having narcolepsy is difficult. Life in Spain is challenging, sure, but it’s the good kind of challenge, it gives you depth. You learn to survive on your own and speak a second language and make friends and navigate a totally foreign culture. That’s challenging, but that’s growth.

You don’t grow from having narcolepsy. Narcolepsy keeps you flat, isolates and humiliates you, keeps you from thinking and laughing and speaking the way you normally would. It consumes you, you spend every moment thinking about it, because you have to. Do I have enough energy to go to the grocery store? Will the next fifteen minutes be good minutes, can I use that time to cook lunch? If I take my medicine now, will I feel okay when I get to school? Careful, don’t laugh, you’ll have cataplexy. Don’t feel frustrated. Don’t get excited.

“You’re shy, aren’t you,” people tell me here, because I don’t talk much, I don’t express much, I’m reserved. But I’m not shy. If emotions gave you seizures, how much would you let yourself feel?

Narcolepsy steals everything it can from you, and there’s nothing you can do about it and no words that make it less painful. There’s nothing redeeming about having narcolepsy.

My mom and dad have both told me, on separate occasions, that if they could be the one with narcolepsy instead of me, they’d do it. I know the proper response is for me to say, “No, I could never do that to you,” but honestly, if I had a choice, I would let them have narcolepsy and I would be the healthy one. It’s horrifically selfish of me, obviously, but having narcolepsy is torture, and I don’t want it, and if I had a choice, I would pass the burden on to someone else.聽

Me llamo… Helen?

A few days after my arrival in Alcorc贸n, I went back to the restaurant聽with the nice waiters who had taken pity on me during聽my overwhelming first day here. I’d adjusted to life in Alcorc贸n, somewhat, and I was able to recognize that while I had originally thought that they worked at a ‘fancy restaurant’, in reality it was just a pub that had a patio, not upscale at all.

The red-haired waitress was taking orders聽outside, on the patio, and she remembered me. 鈥Hola, guapa!鈥 she called in her thick Andalusian accent. 鈥淪it down, wherever you鈥檇 like!鈥 She ran inside the bar and returned with the waiter who had brought me free food.

鈥淒o you have money聽this time?鈥 he asked good-naturedly. I pulled out my wallet, embarrassed, offering to pay him for the other day, but he waved me off. 鈥淣o, no, don鈥檛 worry about it. That was on us.鈥 The red-haired girl nodded and brought me a caf茅 con leche without my even having to ask for it.聽

I was so excited to see both of them that I felt a familiar heaviness at the back of my neck, rushing in waves down my spine and through my limbs. No, not now. You can鈥檛 have an attack in front of them. My face twitched from the effort it took to fight the cataplexy, and I wanted to get up and leave without finishing my coffee. I wanted to lock myself in my room where nobody could see me.

The free-food waiter came over to where I sat on the patio. 鈥淲hat鈥檚 your name?鈥 he asked me.

鈥淓laine,鈥 I said, trying to pronounce it with short Spanish vowels, El茅n, and trying to keep my voice steady. Don鈥檛 have cataplexy. Come on.

Helen,鈥 the waiter said, pronouncing the 鈥楬鈥 like a Castilian 鈥楯鈥 鈥 from the back of his throat, strong, as if he was trying to cough something up.

鈥淓laine,鈥 I said, trying to be more clear.

鈥淵es, Helen! In Spanish, though, you would be Elena.鈥

鈥淚 don鈥檛 feel much like an Elena,鈥 I told him. 鈥淚t doesn鈥檛 fit me.鈥

鈥淲e will call you Helen, then,鈥 he said, still hitting the 鈥楬鈥 much harder than an English speaker would have. 鈥淚t鈥檚 nice to meet you, Helen.鈥 And with that, he returned to the bar where the other waiters were standing. They all leaned towards him as he spoke, glancing at me, and I was sure that he was telling them what we had just talked about.

I couldn鈥檛 see right, the patio looked blurry and unreal. I needed to go have cataplexy. I stood up, walking quickly and guiltily past the waiters, like I was trying to hide that I was drunk or on drugs or something. Act normal. Act normal. Do I look normal? Can they tell something鈥檚 wrong?

I made it to the bar鈥檚 bathroom, fumbled with the lock, and collapsed onto the less-than-clean bathroom floor. Breathe in. Breathe out. Relax. I was learning how to handle cataplexy. The moment of complete surrender was beginning to come as a relief, the fact that I didn鈥檛 have to fight it anymore, that I could give in 鈥 surrendering聽felt good. And of course, when my eyes opened, I felt worlds better than I had coming into the bathroom.

When I stepped back onto the patio, the waiters greeted me with 鈥淗elen!鈥 I was聽right 鈥 he聽had told them my name, or what he thought was my name.

I didn鈥檛 know it at the time, but ‘Helen’ would quickly become my actual name here in Spain. I鈥檝e been here for nearly a month now, and every single person I鈥檝e introduced myself to has, without exception,聽misinterpreted 鈥楨laine鈥 as聽鈥楬elen鈥, adding a strong Spanish 鈥楬鈥 to the beginning of my name. I鈥檝e tried to correct them 鈥 鈥楨laine鈥 doesn鈥檛 even have an 鈥楬鈥 sound! 鈥but 鈥楬elen鈥 has stuck. It鈥檚 growing on me a bit, and the horrible strong 鈥楬鈥 is actually kind of endearing. So, if we meet in Spain, I guess you can call me Helen.

In Between

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

It鈥檚 especially bizarre聽to me that people don鈥檛 know what cataplexy feels like, and that they can鈥檛 relate when I talk about it. There really is no description that can make cataplexy more accessible to someone聽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 鈥渓oss of muscle control鈥.

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.聽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鈥檙e not moving your leg? Like nothing, right? Cataplexy feels like not moving. It feels like nothing.聽

Well, that鈥檚 not entirely true 鈥 for me, at least, there is an emotional component to cataplexy. 聽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鈥檛 look right, and for some reason, that’s terrifying. It feels like being afraid to talk because I know I won鈥檛 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聽somewhere alone right now, a place where nobody can see. It’s聽a fear so strong I can’t think of anything besides聽“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聽Virginia聽to North Carolina, and then from North Carolina聽to Madrid. The flight to North Carolina聽was terrible because I was afraid of flying. I hated taking off 鈥 it was scary, we could die! 鈥 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鈥檛 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.聽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鈥檛 roll around.聽

I didn鈥檛 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鈥檛 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聽after that聽I was able to calm myself down, because I knew how to handle it. I wasn鈥檛 stuck on an 8-hour flight to Madrid with no way to escape this awful, terrifying heaviness 鈥 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聽awake, not asleep, but in between.

Syncopation

鈥淎ll my friends are tall, thin, and blonde,鈥 my best friend said, laughing good-naturedly as we ate lunch. 鈥淚t鈥檚 like I鈥檓 the DUFF no matter what group I鈥檓 in.鈥

DUFF: Designated Ugly Fat Friend.

I looked at her, her deep-set green eyes and long lashes, her freckles and wavy brown hair. I looked down at my white, papery hands, lined with blue veins, which had minutes earlier struggled to open my wallet to pay for my coffee. My damn hands, which can鈥檛 hold things or turn the pages of a book or fingerpick my guitar with any sort of reliability.

My appearance makes me feel exposed; I worry that everyone around me sees my thinness, my cheeks scooped hollow by medication, and thinks聽sickness, the way I do. I worry that they see the scabs on my face and think nightmares. I worry that they see my fumbling hands and think cataplexy.聽I worry that it’s obvious聽that I am not mind-body-spirit but mind-and-spirit-against-body.聽

I looked back at my friend. You are not fat or ugly, I wanted to say. Not in the least. You are perfect.聽

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That night, my friends and I went swing dancing at a jazz club in Pittsburgh. I wore a skirt that was too big around the waist, falling towards my hips, and I worried that everyone could notice. I worried about having cataplexy on the dance floor, about accidentally making a scene and revealing, however briefly, that something is wrong.

I鈥檝e never liked dancing much, to be honest; I鈥檓 no good at it, and I feel stupid when I try. But I聽did聽dance, hand in hand with one of my friends, who was as tall and blonde and awkward as me. We didn鈥檛 know the proper steps, and were by far the worst dancers on the floor, but he gamely twirled me around anyway, first out and then back towards himself. I laughed, excited, and then stumbled as I spun back to him, my feet hitting his, catching myself awkwardly against his side. This is it, I thought. I shouldn’t have come dancing.聽My body can鈥檛 keep up.

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But my friend said nothing, and the music swung on. For the life of me, I couldn鈥檛 nail that returning spin, stumbling every time, relying on him to straighten me out.聽

As the night went on, we picked up some more legitimate moves; during one, he turned me quickly, first to the left and then to the right. As he turned me to the left, we came face-to-face, and he bugged his eyes out at me. I laughed; he turned me then to the right, widening his eyes again, and I collapsed.

He still held one of my hands limp in his own, while the rest of my body laid in a pile on the floor. Get up, come on, come on. I couldn鈥檛 help it 鈥 it was funny, the face he made. I focused on thinking of nothing, on being blank, until finally I could squeeze his hand, pulling myself up, hoping he couldn鈥檛 feel how badly my arms shook with the effort.

We resumed our dancing to the brightly syncopated beat as if nothing had ever happened, trying to do a dramatic dip, made all the more fun as my neck went limp and my head fell back like it was about to touch the floor. We did the left-and-right turn many more times, and I kept my eyes squeezed tightly shut.

We even tried an overly ambitious pick-up-and-twirl move which I loved to the point of cataplexy; every time he went down on one knee, signaling to pick me up, my body froze, refusing to move closer to a sure cataplexy trigger. I would awkwardly step towards him, not even attempting to dance, and he would pick me up 鈥 聽what’s the proper way to do that sort of lift? We were never sure 鈥 and spin me around and around as my eyes closed and my head dropped and I held on with arms that rapidly lost their strength because it was so deliriously fun to be flying, spinning with the jumping jazz music, the cataplexy as jarring as syncopation, loose and rigid all at once, and it was all right. I felt like I fit perfectly inside my too thin, disobedient聽body, the way those stuttering eighth-notes fit smoothly inside the beat. I felt beautiful.

Just to be clear 鈥 I didn鈥檛 feel beautiful because I felt free. I felt beautiful because in that space, I didn鈥檛 want freedom. I didn鈥檛 feel like somebody聽who needed to be healed. I just felt like myself, like I was dancing in a body that didn鈥檛 quite fit with my mind to music that didn鈥檛 quite fit with our age. And it was good to exist there, in that messy glorious reality and the stumbling round in the dance.

Coming Out

First things first 鈥 I got my visa! Leaving for Spain in 10 days 鈥 it鈥檚 seriously coming so quick!

Second, I鈥檓 spending the week at my alma mater (weird! I鈥檓 a college graduate!), mostly to see and spend time with and say goodbye to my weird, beautiful friends.

IMG_0615Specifically, these friends.

Lastly, I鈥檝e decided to be brave and make this blog public, which also means 鈥榗oming out鈥 about having narcolepsy. It鈥檚 terrifying 鈥 I would much prefer to maintain a carefully curated Instagram or something similar, something that I can control 鈥 choosing honesty聽is such a difficult thing to do.

But I鈥檝e spent a long time trying desperately to be normal, and that didn鈥檛 work. As my narcolepsy got worse and worse, I would sneak off to the bathroom to have my 鈥榚pisodes鈥, on the floor paralyzed by cataplexy or using the toilet as a pillow. I would walk to and from classes, hearing things that weren鈥檛 really there and seeing demons out of the corner of my eye. I would spend all night聽gripped by horrific, violent nightmares that sometimes didn鈥檛 end when I woke up, and then in the morning I鈥檇 have to clean the tear tracks and scabs on my face, because I would scratch myself when I tried to wake up聽from the nightmares.

It felt more and more like I was living in a foreign country, but not a cool fun one like Spain 鈥 it was more like everyone around me was speaking another language and abiding by a set of rules that didn鈥檛 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鈥檚 okay. That鈥檚 why it鈥檚 important聽to make this blog public. Narcolepsy is not a small deal, and it鈥檚 not a聽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, 鈥淒on鈥檛 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鈥檚 going on because it makes people uncomfortable, but that鈥檚 why you need to be an advocate. You need to be open. Live your life, and when you have cataplexy, you鈥檒l be educating people. You exist, and disabilities exist, and people need to know.鈥

I think he鈥檚 completely right, so it鈥檚 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鈥檓 tired of hiding in the bathroom.