The wooden bar is cool and sturdy beneath my hands. I slide my toe across the floor, dip into a plié, then rise on my toes, the earth strong and steady beneath my feet. The reflection in the mirror is a picture of a dancer in the making. She not only moves to the music, but she also soars with it. You can see the joy flowing through her fluid body. She could make you smile, she could make you cry, she could tell a thousand stories with her body.
But when her body changed with a diagnosis of rheumatoid arthritis (RA), so did her story — and her approach to finding joy in everyday life.
The Stars Fade
Before I was diagnosed with RA, I lived a jubilant life. I set out to experience everything the world had to offer, and I wanted to do as much as possible as quickly as possible. I travelled, took spontaneous weekend road trips, went hiking and camping in the mountains, danced, auditioned, and performed. I immersed myself in living and learning. I made the universe my playground, and its vastness did not intimidate me. I was going to touch the stars.
After I was diagnosed with RA, that big universe suddenly became remote and inaccessible. Pain and fatigue made the life I had built difficult to bear. The energy I thought I would always have leaked out of me like a balloon losing air. The power and strength of my body failed me, and so did my robust joy of life.
For a time, I buckled into myself, hearing only the music of self-pity and grief, pulling the blind down on all those other prospects that were still open to me. I stewed in my own frustration for awhile, until one day a bit of light leaked through.
I decided this was not the life I wanted to live. If I wanted my joy back, it was up to me to retrieve it.
The Stars Are Inside Me
I started by sitting with my new situation, giving myself time to make peace with my body, to understand my new limitations. Instead of mourning what I thought I could no longer do, I marked the memory of it, and tried to celebrate and honour the fact that I did it in the first place. When I first started dancing, I didn’t think I would be able to do it at all; the first time my teacher put me on stage, I was certain I would fail. Now, 40 years later, I have a stockpile of accomplishments and experiences to draw on — not only from the stage, but from all parts of my life.
The stars I was determined to touch were still visible, and the big life I thought I was missing out on was right in front of me, except now it didn’t seem so vast, and I didn’t have to reach so far.
I found everything I needed inside me. My memories and all those things I did in the past are imprinted in me, and RA can’t take them away. They still exist in my body but not only that, they can shapeshift into a new form.
When I stopped dancing, I started yoga. When I stopped theatre for a little while, I took my stories to the page as a writer.
I looked, listened, and allowed the world to show me something new, and when it did, I embraced it.
One Star at a Time
The simple things right in front of me had the power to expand into a whole new universe. I found comfort in a smaller life: enjoying crimson sunsets on the deck with a hot cup of tea, losing myself in the pages of a book. I watched hummingbirds flit back and forth and admired their irrepressible spirit. I went for walks in the woods, took classes, and rediscovered my joy in creating, sharing, and connecting with like-minded communities. I focused on one thing at a time, built a different life, and found it just as satisfying as what I had before.
The idea of joy, I realized, comes from within. There are lots of things that make me happy, but it’s not just about the external pleasures. I needed to find the joy within me.
It may be difficult to find joy when you feel hopeless. With RA, many of us have lost our mobility, our jobs, our health, our hobbies, and in some cases, even friends and family. Don’t dismiss those feelings of frustration, anger, or grief.
Allow them to happen, sit with them, let them go, then take a breath and focus on the things you can do, no matter how small you deem them to be. Don’t compare yourself to others. You do yourself a disservice by comparing yourself to others. This is what stops us from moving forward. This is what keeps us in in the same place. Our disease is not the same, and neither are our circumstances. Your victories are your own and more powerful because they’re yours. Let them feed and empower you. Don’t let what other people say or do take away your moment.
It might seem unusual to suggest that one could find joy with a chronic illness, but we simply must do it. We must find a balance that not only helps us cope, but also allows us to live. Cultivating joy is a powerful instrument. Joy is strength. Strength is resilience, and people with RA have loads of resilience whether we recognize it or not. In this world of constant uncertainty, we need joy more than ever.
I rediscovered my joy and am exploring the world again. I didn’t let my setbacks stop me from living, I just found a different way to live. I found my way back to the jubilant adventurous life I always knew, and I’m confident that I’ve already touched the stars — because they were always inside me.
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