“My passions are who I am. They are written into my DNA. They are my sustenance and my lifeline, and no amount of growling from RA is going to stop me from pursuing them. I will always find a way to shape my creative life around chronic illness, whether it’s on the stage or on the page.” – J.G. Chayko, The Show Must Go On, Creaky Joints
My hobbies are the core of my life. They are my passions. They sustain me, motivate me, inspire me, and fulfill me. I am blessed to be able to engage in them, even in the face of disease. Writing, theatre and dance have shaped the foundation of my creative life.
I always danced. I have vague memories of ballet and tap classes when I was four or five years old. The first notes of that music stayed with me my whole life. I studied all types of dance from ballet to jazz, swing to belly dance, salsa and tap. I loved the ambiance of the studio, the mirrored floor to ceiling walls, the sturdy barre beneath my hands, and the polished floor beneath my feet – it grounded me and made me aware of the confounding ability of my own body. I met my first audiences in recitals and year end shows.
In grade six I was unwillingly cast into the school play – a musical about Tom Sawyer. It was the unpredicted shot of adrenaline that launched me into a lifetime of theatre. I spent my high school and college years studying acting, stagecraft, going to auditions and scoring roles in several productions within my community. The last role I anticipated was living a life of chronic disease.
RA put a temporary halt on my stage adventures for a little while. I lacked the stamina to sustain long rehearsals and weeks of shows. Fighting the inflammation in my joints was a constant battle that added to my growing weariness and fatigue. I was frustrated by what I perceived to be my lack of effort. I was a perfectionist. If I couldn’t provide a stellar performance, I just simply wasn’t going to do it. I took a break from theatre for about four years while I learned how to manage life with RA – and during that time, an old passion resurfaced.
I started writing when I was a child. Before I even set foot on the stage, I knew there was something of the theatrical about me. I dreamed in stories. I staged dramatic episodes with my stuffed animals. I imagined words – how they felt, how they tasted, smelled and looked. I loved the way my pen moved across an empty page, and how the ball point guided me into dialogues with fictional characters. I always knew that someday I would write, but I never thought a chronic illness would be the catalyst. RA revived my writing life. It made me realize that life was too short to wait to pursue my dreams. I’d already lived several lifetimes. I had experiences and stories to tell and they were now steeped with the sustenance of time.
My first publication was a non-fiction piece about my great-grandmother and her farm in a rural community. The writing flowed. I was back in that place, in that time, feeling the wild grass graze my knees, climbing the gnarled apple tree, and hearing the babble of the creek in the gulch beyond the house. It was soon followed by some poetry and a short fiction story about fate and secrets. I was absorbed in the creation of new worlds and characters. Writing about RA came later. It was a different form of storytelling and in an unexpected twist, it opened the doors to new opportunities. I met amazing people, and became inspired by a community of warriors that had walked the same path I was now treading. I was driven by their bravery and commitment to living life on their terms.
I was brought back to the theatre when a director friend of mine offered me the lead in a comedy. I was hesitant at first – I missed the thrill of bringing a character to life on the stage, but I wondered if I could cope with the rehearsal times and character work. That reluctance was edged out by the realization that not many people get offered a chance like this, and so I took it. As it turned out, I was more than ready to return. I discovered a new appreciation of what I could accomplish with RA, and that was more powerful to me than any treatment.
My dance world suffered the biggest blow. I was limited by my body as it was now, and had to learn new ways to move and different exercises to maintain fitness and reduce stress on my joints. I said goodbye to ballet, tap, jazz, flamenco and swing. The smooth floors of the studio that once beckoned to me now put undue stress on my tender and swollen joints – but even in this, I would find a way back.
My latest role is that of choreographer. I am blessed to be able to renew my previous experience and reawaken the world of dance in the able bodies of our talented cast for this year’s Christmas pantomime based on the Wizard of Oz. This show is extra special to me in that partial proceeds will go to a children’s charity, and this year’s chosen charity is a local group called Cassie and Friends, a society for children with juvenile arthritis and other rheumatic diseases. I am thrilled and ready to prove that even in the face of disease there are amazing accomplishments waiting in the wings.
When I am engaged in my passions, RA is reduced to a faint echo lost in the chasm of my life. My passions are the fuel for battling life’s sudden challenges. It’s those dreams, those little victories and small pleasures that make up who I am that pull me from the grasp of chronic illness. I don’t wait to do the things I love. I stretch my boundaries, take chances, and keep my eyes open for the path that takes me where I need to go– it’s not easy, but it’s worth it.
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.