(Published in just dance! magazine, in the summer 2015 issue.)

“Come rain, come shine, come snow, come sleet, the show must go on.”

Most dancers know that phrase, and many treat it as a personal creed. The dedication to their art drives them to be on stage, on time, no matter what. But for people like 12-year-old Grace Butler, her dedication has nothing to do with it. If her body says the show is going on without her, she has to listen.

Grace has juvenile idiopathic arthritis, type 1 diabetes, and a thyroid condition. When I was interviewing Grace and her mom, Jody, Grace was getting “another flare,” as they describe her arthritis, and her first competition was only two weeks away. This is also Grace’s first year haveinga solo. Will she be able to dance? Or will her body force her to sit this one out?

The diseases affect two key components in a dancer’s body: the health of the joints, and the ability to gain energy from food. Arthritis leads to fluid build-up in the joints and can make movement difficult. If it’s not managed properly, Grace can permanently damage her joints. Type 1 diabetes means the pancreas – an organ that helps us digest carbohydrates and sugars and turn them into energy – can’t make insulin. Without insulin, those carbs and sugars stay in the bloodstream and the body can’t make energy. Lastly, the thyroid also helps the body make energy: if the thyroid isn’t working well, a person can either burn through energy too fast or feel constantly sluggish.

“So right now she is starting a flare and we’re two weeks away from our first competition,” says Jody. “I pray every night, ‘Okay, just let her have this. At least let her have one competition. At least let her have the joy.’ It’s her first year with a solo, so for her that’s like the be all and end all. She finally earned it.”

Grace studies tap, jazz, and ballet at Jaymor School of Dancing in Aurora, Ontario, about 50 km north of Toronto. She’s been dancing since she was three years old. Alina Adjemian and Susie Prestwich teach her ballet, and Grace studies tap and jazz under Angela Cecchino.

Alongside her dance training, Grace assists with Saturday morning classes for children up to age 6. She likes introducing them to dance and showing them the basics.

“It’s fun to me,” Grace says.

Every month, Grace visits the rheumatologist (a doctor who specializes in joints) at The Hospital for Sick Children in Toronto, also known as Sick Kids for short, to monitor the swelling in her joints. And each visit is a bit of a nerve-wracking experience: Will the doctor tell her that she can’t dance for a while? Will she need to add some extra physiotherapy to her schedule to help cull a flare? Or is everything okay?

Grace must also manage her diabetes daily. She generally uses an insulin pump, which injects small doses of insulin into her body throughout the day. However, she doesn’t like wearing it while performing, because it flops around too much. There’s just one problem: the adrenaline needed to perform on stage can increase her risk of having a blood sugar high or low. If her blood sugar spikes, she may have to run off stage to get to rid of the extra sugar in her blood. If her blood sugar drops, she could collapse and have a seizure.

Her thyroid problem is the easiest to manage: she takes a pill every morning  and goes for check-ups every few months.

All of these medical concerns and the potential for permanent harm to her body beg the question: Why does Grace dance?

“Well, dance kind of makes me get my mind off it. Like, when I dance I don’t think about my disease. I think kind of about the dance itself and it’s just kind of an escape from it all,” she explains.

Jody sees it, too, and describes it in a way only a parent can: “I think the greatest thing for me is that is the one time I see her have control over her body that she’s not worrying about her sugars, her pain, her stress of if she’ll miss a competition because we’re at Sick Kids for joint injections. She’s just present, in the moment and finally able to control her body. I think for me that’s great because much of her life is spent trying to control something you can’t control.”

Jody explains there are days when Grace cries and is frustrated because the diabetes and arthritis limit her.

“She feels like her body betrays her almost. Like, ‘I’m doing everything I can and following the doctor’s orders and I’m still having to deal with this.’ That’s the only time I see in her that heartache, right? That, ‘Okay, now today I’m frustrated.’”

Dance can help or harm Grace’s arthritis, depending on how swollen her joints are. If her rheumatologist detects that Grace’s joints are just starting to swell up, he may prescribe some physiotherapy to bring the swelling down. However, if the flare has passed a certain point and fluid has started to collect in her joints, Grace may permanently damage them if she dances or otherwise exercises, because the joints aren’t working properly. In those situations, she needs to take a break from dance.

One such break last year persisted for three months. But that didn’t mean Grace’s dedication to dance dropped: Her teacher saved her a spot in the choreography, and Grace observed class for three months. Her friends would even text her the choreography if Grace had to miss class.

You can tell, though, that Grace’s challenges don’t stop her from dreaming. What does she want to be when she grows up?

A dancer, of course, and a contestant on So You Think You Can Dance. (She was happy Ricky won last year – she was rooting for him.)

“I do think it’s fun to be able to go out on stage and show the judges what you can do and that they can give you tips on how to get better so that each competition you get new forms of advice on how you can improve your dance so that by the final competition you’re probably at the best that you can be,” she says.

Grace doesn’t dance on stage for the attention. Rather, she dances to tell a story, any story her teachers want to tell through the choreography.

“I just like being able to kind of tell the story with my body and explain different things and making rhythms just using your feet or using different parts of your body ’cause that’s really cool,” she says.

The good news is that Grace could indeed compete in the competition. She competed in the junior categories for jazz large group, tap small group, ballet demi-character large group, and the ultimate category for this year: tap solo.

One show down, two more to go.

SIDEBAR

Grace’s Favourite Dancers

Ricky Ubeda, SYTYCD Season 11 winner

Tap-dancer extraordinaire Savion Glover

Best friend Sadie Aldis. (“She also has type 1 diabetes and she’s a really amazing dancer, so I look up to her as well.”)