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.

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3 thoughts on “In Between

  1. Beautiful post and beautiful photo! Describing what cataplexy feels like has become one of my favorite parts of my presentations on narcolepsy. But it’s one of the harder parts of my presentations too, as I often get choked up describing this in-between state of being. Also, I had a lot of fun trying to describe this for my book. And I say “fun” because I relish in the intellectual challenge of trying to make the invisible – visible! Keep writing, you rock!

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    • Thank you so much, Julie! You’re right, it’s hard to talk/write about, but it is kind of a fun challenge to try and describe it in a way that other people can understand 😉 There really aren’t words for it! Besos from España! 🙂

      Like

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