The Queen of Dystonia.

My sister, Sarah Peyron, is positively the most upbeat negative person I know.

Every time I see her, she greets me with a beautiful smile, accompanied by a very disapproving shake of her head.

Sarah was diagnosed with cervical dystonia in October 2008, which, according to We Move, is a neurological disorder with pronounced muscle contractions resulting in repetitive movement or a sustained twisting resulting in abnormal posture.

Sarah’s prominent symptoms include shaking her head no, constantly. She is also losing her ability to walk.

At first, one of the girls at the youth group where she volunteers didn’t understand. “Quit shaking your head,” the girl had laughed. “No, really,” she said seriously. “Stop it.”

Hearing this story, I tried shaking my head nonstop but could only keep it up for a minute before giving in to fatigue.

Sarah, a 32-year-old single mother, reminded me that my middle-schooler didn’t recognize anything was wrong until January, four months after her diagnosis. He visited and played games with his aunt during several holidays and birthday parties without noticing her obvious disability.

By the 2009 Junior Lilac Parade, Sarah’s symptoms expanded to a one-sided wink and Elvis sneer. My family, mature and sober, tried to imitate her, without success. Her neurologist treated her with Botox, paralyzing the offending muscle groups and when the puffiness wore off, the symptoms didn’t return.

No amount of teasing prepared Sarah for the surprise fire drill at the downtown YMCA last February. Sarah has therapy in their 94-degree pool every week, with other impaired movement patients. The alarm sounded, and the staff hurried them. “Just wrap up in a towel and get outside” was the overwhelming instruction. They probably didn’t understand that cold temperatures aggravate muscle spasms, worsening conditions.

The women dressed as quickly as they could and left the building.

Afterwards, my sister waited in the lobby for mom to pick her up and drive her home. The receptionist complained about the disabled women to every YMCA member who walked through the door. She recounted the event, mocking the women who had begged for showers so the morning’s pool therapy wouldn’t be undone. Around 20 people heard the story while Sarah sat silently. After my sister left, the story replayed, but very likely not only in Sarah’s mind. She understood they needed to evacuate, but the YMCA needed to understand something about respectfulness and disability, so Sarah called them. The receptionist has been a doll since.

People’s strange looks and lack of empathy don’t stop us from laughing with Sarah.
“What if you were pulled over?” I asked her once.
She chuckled, shaking her head.
My son chimed in, pretending to be an officer. “Do you know why I pulled you over?”
She laughed, shaking her head.
“Can I see your license and registration?” I asked.
Her laughter only eggs us on.
“Ma’am, are you prepared to cooperate with me?”
“Can I get you to step out of your vehicle, please?”
“Are you prepared to spend the night in jail, ma’am?”

She’s baffled me with her lack of support for the teachings in her own church when I’ve visited. I overcompensated with extreme head nodding to make up for her uncontrollable head waggle. When the morning was over, my neck was sore.

Sure, it’s easy to forget that Sarah is disabled. She commonly receives strange facial expressions from whoever is speaking at church. Sarah reports that they’ll hesitate for a moment until it dawns on them, “Oh, it’s just Sarah.”

In spite of what she is incapable of, physically, Sarah’s wit and humor refuse to be disabled. If she can remain pleasant, funny and good humored while living through excruciating pain and dehabilitation, then I have no excuse not to follow her example, even on my worst day.

I asked her about a camping detail lately, “Well, what if we … no? Okay.”
“No!” She laughs. “I think it sounds like a great idea.”