Beyond the thick red curtain, I can hear the murmur of the audience. I walk the stage through my opening scene, running the lines in my head, my usual ritual before the start of each show. I wonder if I’ll remember my blocking; I wonder how the audience will react; I wonder if I will be successful bringing this character to life. This is not the first leading role I’ve had, but each one feels like the first. Once the curtain rises and I step into the light, I fall into the easy cadence of performing I have known all my life.
This year a worldwide pandemic upstaged our life and changed the way we live. Work life came into my home and merged with my creative world. My theater life as I knew it stopped. I had a new routine to juggle and, in my isolation, I was pushed to confront my disease in a way I never anticipated. I have been fortunate to play many roles but my most important one has always been taking the lead in my life with RA.
A chronic disease is always there but it doesn’t need to take center stage. Arthritis is not the main character in my story. My story has always been about living my best life, focusing on family, friends, home, and feeding my creative hunger. In the small bubble of my insular world, I dedicated more effort on healing my mind and body. I discovered time, which had always been there, to take the lead in my own self care. I became more physically active and cultivated my artistic life in new ways. I found a fulfilling balance with work and home. I enjoyed the world around me, changed as it was, taking time to appreciate the little things that are always overshadowed by a big demanding world. I didn’t let my plans get sidetracked by RA or a pandemic – I just found a different way to achieve them.
Chronic disease doesn’t decide what role I play in my story. I am a woman, a wife, a sister, an aunt, a friend, a daughter, a writer, an actress and an author. It’s going to be awhile before I have the privilege of walking the stage again, and I know RA will always be there lurking in the background, but it will never be the director in my life. It may try and upstage me now and again, but as the leading lady I have the power to darken the spotlight on my disease until it’s simply a thin silhouette in the peripheral vision of my life.
One of the ways I’ve managed to stay in my theater world, is through the recording of old radio plays. I thank the wonderful folks at Creaky Joints and Bergenstages for giving me the opportunity to play.
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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.
I love the radio play. Let me know if you ever need a male for a part, I woudl sign up immediately. Heck I might even be acceptable.
Thank you for so eloquently saying what I feel. RA is always there, but it’s not the focus. During this pandemic it has taken an even lesser role as I try to balance my demanding job from home, worry about elderly parents and care giving to my heart failure husband.
It’s been a challenging year trying to find that balance of our own self-care and being there for our loved ones in a safe way. Sending you strength and resilience for moving forward and finding joy in spending time with your loved ones. Stay well.