Syncopation – Dancing with Narcolepsy & Cataplexy Guest Post by Elaine Golden

by julie on October 12, 2015

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REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com

Syncopation – by Elaine Golden

Recently, 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.

d684a4cc96c378c5aee0dbd32029e093I’ve never liked dancing much, to be honest; I’m no good at it, and I feel stupid when I try. But I did dance, hand in hand with one of my friends, who was as tall and blonde and awkward as me. We didn’t 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. My body can’t keep up.

But my friend said nothing, and the music swung on. For the life of me, I couldn’t nail that returning spin, stumbling every time, relying on him to straighten me out.

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.

ade035e58fc418f2f6cfc0ee8a7bb496He 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’t help it — 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’t 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 — what’s the proper way to do that sort of lift? We were never sure — 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 body, the way those stuttering eighth-notes fit smoothly inside the beat. I felt beautiful.

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Just to be clear — I didn’t feel beautiful because I felt free. I felt beautiful because in that space, I didn’t want freedom. I didn’t feel like somebody who needed to be healed. I just felt like myself, like I was dancing in a body that didn’t quite fit with my mind to music that didn’t quite fit with our age. And it was good to exist there, in that messy glorious reality and the stumbling round in the dance.

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elaine goldenRead & follow Elaine’s beautiful blog, Chica Siesta

“a 21-year-old narcoleptic and aspiring neurologist, emigrating to Spain to teach English. Hopefully at least one of these things will be extremely interesting.” 

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