Now we’re warmed up and ready to go, Ms Jaiyana holds up her hand. “Okay, one-minute water break.”
We have a lot of water breaks. Our bottles and containers are all different, but they have one thing in common: everyone is using a straw. But we’re all using them for different reasons. It takes me three tries to get my drink out of its cupholder, which is built into my wheelchair (such a clever addition, I love it). But I eventually manage it. And then it takes me another four tries to get my mouth and the straw to meet. But then, ooooh, sweet relief, water floods in.
“Everyone hydrated?” Ms Jaiyana asks.
Zintle raises her left stump, “Absolutely.”
Geina jumps to the front with a grin, “Ready!” You’d never know she has health challenges unless she is having an epileptic seizure.
“Yes!” Karleen says.
We all look down to where she is lying on the floor. Karleen has Global Dysautonomia. Her symptoms include dizziness, fainting, problems with her vision, nausea and other digestive issues. Ms Jaiyana makes her dance lying on her back or in a chair, but usually on her back. Watching her dance reminds me of synchronised swimmers: that girl’s legs do some amazing moves up in the air.
“I’m good,” says Manesi, through slurred speech.
I give her a tight smile. I do feel for her. Manesi’s having a bad month and is back in her wheelchair, and she so wanted to dance in the show without it. Unlike me, who uses a wheelchair full time, Manesi is an ambulatory (which means ‘walking’) wheelchair user. She has multiple sclerosis, and her symptoms change and fluctuate. So sometimes she needs her wheelchair, but sometimes she uses a rollator or crutches, or nothing at all.
“Okay,” Ms Jaiyana says, as the rest of the crew take their places, “I’m going to demonstrate the moon walk one more time, for those who are doing this part.”
Which isn’t me. But I watch anyway, because Ms Jaiyana is an amazing dancer, moving like liquid power. She danced professionally until she was 24. Then her body, as she puts it, “broke”. She has fibromyalgia and Ehlers-Danlos syndrome. These conditions are ‘chronic’ illnesses, meaning they have no cure. They also produce chronic pain, meaning she is always sore and hurting somewhere in her body.
“You need good medication and a sense of humour,” she tells people, and it is so true.
Fibromyalgia and EDS are classified as ‘episodic disabilities’ because the symptoms constantly change. One day Ms Jaiyana can show up to class on her own two legs; next day she might show up with a walking stick and braces on a knee and ankle.
“I’m a skoroskoro,” she often tells people. “You tie the front bumper on, then the back falls off. You tie that one back on, then the wing mirror comes loose. Fix that, then the silencer drags and you have to tie that up, too.”
But people have a hard time understanding why Ms Jaiyana only uses a stick or braces occasionally, just like a lot of people don’t understand why Manesi doesn’t always use a wheelchair. They believe you either need it all the time, or never. I get it too. Anytime I stand up out of my chair in public, some idiot will shout, “Praise be, it’s a miracle!”
Then they think they’re so funny, or accuse me of faking.
I always want to reply, “I now understand what stupid looks like.” But if my ma ever heard me talking like that, it would be the end of me.
Tell us: Is there anything in your life that the general public doesn’t understand, and makes ignorant comments or bad jokes about? How do you handle it? What advice would you give Bree?