A Narcolepsy Haiku
I’m a wind-up doll
I dance and sing, all in love
But the crash comes, still.
Life with narcolepsy is a whirlwind. Some hours my brain is clear, and I can dance around and be silly and do the things in life I want to do. I can hike on some days and I can bike on most. Most days, I am able to write. Some days I am able to work. Errands are difficult for me to run, so I have to prepare myself for them.
When I push too hard
I’m a wind-up doll. When I push myself too far, I twist my springs too tight, and I’m off like a top.
"I can do the laundry today. I got an article written too, so while I’m at it, I better go grocery shopping!" I tell myself. "Who knows when I’ll be awake like this again?" It isn’t until I’m nodding off from a sleep attack in line with a shopping cart full of items that my plans of productivity come to a screeching halt. It’s when I really push myself that I remember...
I’m a wind-up doll.
My daily wind up keeps me going
I am different from the others; they don’t understand how my parts work. I have a plethora of working cogs inside that keep me going. My body has found a sort of peace from a finely-tuned treatment plan. So many pills I have to take for my narcolepsy that not all of them fit in one hand. Each piece of my treatment plan must stay in place in order for my machinery to work right.
As a wind-up doll, the only way to get anywhere in life is to twist my wind-up key. I recharge my wind-up-self by napping frequently. Without my daily wind-ups, tune-ups, and more, I would surely fall on the floor.
I am a wind-up doll.
The sleep attacks still come
When I’m depleted of life, people point at me and say, “Just keep on going, anyways!” What will it take for them to see that willpower is no help to me if my cogs are gummed up and I never take the time to twist my wind-up key? This complex machinery is a part of me.
The crash is the only guarantee in all of this. My sleep attacks still come, and I expect they always will. But I can plan around them and take time to recharge... so I can get up and go all over again.
Enjoying the world around me in my moments of wakefulness
In truth, being a wind-up doll isn’t so bad. I can keep better track of my mental health when I am overtly mindful of my self-care. I still get moments of wakefulness that I can use to enjoy the world around me.
The trick to being a wind-up doll is keeping track of your machinery maintenance. The most useful tip I could give to fellow wind-up dolls is this: choosing to wind yourself up when you need rest instead of dancing yourself into the ground is valid too.
At what age were you diagnosed with narcolepsy?