My Body Dances (...Without Telling Me)

So I wake up one night. I’m twelve years old. And I realize, what the heck, I’m dancing!

Then I realize, um, excuse me, I’m not trying to dance right now. I’m supposed to be sleeping.

But my body kept on dancing.

A week or so later, after a couple more involuntary dance parties in the middle of the night, I learned that I was having seizures.

Thus began a multitude of hospital stays, dozens of medications, tons of doctors, and a never-ending influx of support from my friends and family. I was diagnosed with “partial complex seizure with secondary generalization,” which basically means sometimes I have seizures just in my right hand, sometimes in my whole body. I was later diagnosed with “epilepsia partialis continua,” which means the dancing in my brain literally never stops. That diagnosis will lead to a story for another day. For now, we focus on the beginning.

For those who don’t know, epilepsy is a diagnosis used to describe someone who has chronic seizures (or, involuntary dance parties).

Most people with epilepsy don’t get to witness the dance party – their conscious mind takes a little nap while their body does the dancing. Me, however, I get to be there the whole time. And honestly, no offense to my brain, but it throws the worst dance parties ever. Like, I’m disappointed in my brain for throwing such crappy dance parties. But hey, what can ya do?

And that’s where I turn my flashlight on. Later in my life, I took some drastic steps to shut down these dance parties. But for first 7 years, there wasn’t much to do except take a variety of medications and learn to live with the fact that sometimes my right hand twitches out of control. Oops, can’t write right now. Oops, gotta stop playing piano. Oops, I dropped a glass because my hand started dancing again. But hey, what can ya do?

I’m not gonna lie, it got really tough. But after every doctor’s visit, we stopped to get milkshakes on the way back! That was awesome. When I got home from the hospital, there was a big party for me! That was awesome. I got a steady flow of love and support and prayers. That was awesome.

One of the brightest moments in the darkness of that first hospital stay was my little sister buying me a scarf with her own, long saved-up money to cover up the abundance of bandages covering all the wires that were glued to my head. It's still my favorite scarf.

Sometimes the light is a milkshake. Sometimes the light is a party. And sometimes, the light is a long rainbow scarf from a sweet little sister.

Monica and scarf-giver Teryn - ages 11 and 9