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When I Can’t Move My Body Because of Cataplexy

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Have you ever heard of cataplexy?

I know I hadn’t heard of cataplexy before I started researching narcolepsy and other possible diagnoses two years ago, but I’m going to be ambitious here and try to make it easier to understand.

I think most official definitions include something like this: Cataplexy is a sudden loss of muscle tone or control associated with narcolepsy, usually triggered by an emotional response and lasting a few seconds up to several minutes. It can affect as little as your eyelids or as much as your whole body.

That’s pretty accurate if you’ve ever observed it. But when you’re the one with cataplexy, it’s a different experience.

Cataplexy feels like you’re a tree that only gets two seasons — summer and winter — and you never know how long each will last. You’re constantly being stripped down to your bare bones, and you’re then expected to hop back into life as if nothing happened. You know all your leaves, all the branches they grow from and where new ones are starting. Your roots are strong, so you know you can handle not having a spring and fall, but someone’s constantly switching between the winter and summer, and you can’t keep up.

In the summer, your branches dance in the breeze, and you always have birds and squirrels flitting through the cool canopy you provide for them. And then suddenly, it’s winter, and you watch all of your precious leaves slowly fall to the ground — all the pieces that make you you  scattered all around with only your core left.

You can’t do anything about it, and you know you’re not moving anywhere, so you patiently wait for spring. Surprise! Summer again! All you can do is try to grow your leaves back as fast as possible, try to remember what you looked like and what animals visited you and if you need more branches in a certain place and try to enjoy the warmth and green while it lasts because winter will soon return. You know that.

That’s what it’s like for me, anyway. I feel the familiar fog roll into my head and know I’m going to have to give cataplexy its time sooner or later, but I’m fortunate in that while I don’t have a choice in “if” it happens, I generally do have a choice in “when.”

When I was walking on campus, I could focus on counting my steps, and I’d magically find myself back in my room. Granted, if I’m fighting it for an extended time, I may literally just collapse when I give in, and historically, that has caused my temporary paralysis to last longer — like for hours at a time.

With cataplexy, there’s so much to describe while outwardly nothing is happening. Usually, I can still talk to people around me, though my voice may be dull and flat. Otherwise, I’m still. You can lift my arms, drop my feet, poke my belly or prop me up (and support me, please), and I’ll be dead weight. I’m at the mercy of whoever is with me (which is rare because I’d much rather be alone to deal with this awkward predicament) until I slowly gain control of my fingers, then my hands, my neck, forearms, then my trunk and shoulders and eventually my legs. Sometimes my legs come back first. Sometimes it’s only my legs are affected by the ‘plexy (saying this affectionately, sort of). Or, occasionally, it’s just been my hands, usually at a time when I needed to type.

During this time, I rarely feel emotion. I’m just there, neither sad or mad, but never happy or content. It’s a complete lack of feeling and thinking. I can’t tell you how many times last fall I had a cataplexy attack in my (thankfully single) dorm room, and I would be lying on the ground just thinking about my breathing. In and out. In and out. I forget about tests, running, friends and student loans. I forget I’m funny, artistic, currently stressed, but might vaguely remember I have somewhere to be at 6:15 that evening. I’m just stripped down to my motionless body and my immediate surroundings.

Sometimes I’d think about the carpet or my fingers in front of me, my dresser or desk or the sunlight falling in. Sounds positively thrilling, eh? But I’m in forced checkout almost the entire time; I know it will eventually pass (whether it’s minutes or an hour later) and I’ll be able unfold my limbs, and I’ll be thankful for all my parts and the ability to move them (most of the time) as the fog recedes.

Life with cataplexy isn’t easy, but in the moment, it’s also not hard. It forces you to avoid your problems or unpleasant emotions, instead of dealing with them, which is kind of nice at the time — although last I checked, this strategy works for just about no one long-term.

Leading up to and putting off cataplexy? That, I think, is hard, and I wouldn’t wish it on anyone. I’m thankful my cataplexy has gone down considerably in the past couple months with some lifestyle changes, a forced “life break,” as well as multiple medications. Sometimes, I’m still caught off guard when my tree is suddenly surrounded by winter, but I think it’s gotten at least a little more predictable, and I’m not going back and forth multiple times in one day.

Cataplexy is weird, but it is what it is, and if one person can read this and feel at least an inkling of being understood, then thank you. Because that means someone understands me, if just a little, too.

Follow this journey on Rec. Sleep. Ride.

Lead photo source: Thinkstock Images

Originally published: August 5, 2016
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