Remember the story of a little engine taking on the impossible task of tugging a chain of railroad cars up a steep and craggy mountain road? When no one else would attempt it, a modest locomotive stepped up and took on the task, chugging its way upwards, while others refused to try. When the mountain of RA sprang up in front of me, the straight road I was travelling suddenly became a slanting coiled path and I was faced with the monumental task of pulling my life up the slope of disease.
Having RA can feel like always pulling a loaded freight car up a mountain. The inflammation and pain weighed on my joints, clogging up the perpetual motion of my life. There were days when the weight seemed to lighten, but its presence would always linger. Daily tasks and activities that were once effortless turned into roadblocks, and the new routine of my life with RA was spent trying to find my way around them. Life didn’t stop in the face of my disease – family, friends, work and time continued to flow around me and I had no other choice but to find a way to keep up with it.
There were some activities I unpacked and left at the roadside; a couple were retrieved at a later time, but others would be left to linger in the potholes of my past. Ironically, the onset of my disease inspired me to try my hand at aspirations I had postponed. It took work and a lot of time to find my motivation, understand how the disease worked within my body, and learn my new limits. I wasn’t able to approach my activities in the same way. I had to make adjustments while weaving up the curving road of my disease. I learned to value my life in each success and failure.
I’ve had an extremely busy summer – travel, performing, writing festivals, work, friends and family. It has become the busiest season of my life since the arrival of RA. It took a few years for me to reach that point; it took patience (and, let’s face it, often frustration) for me to understand how to manage my life while carrying the burden of RA. I learned just how far I could push and when to pull back. I had my good days, my bad days, but I kept going. I used to race through life, but now I’ve learned that slow and steady is the best way to success.
I am now into the beginning of performances for another show. I can feel my engine putting along, the steady undertow of my energy dissipating into the mists behind me. I have just enough to push me over the hill to the next plateau where I can pause and recharge. I have no idea how long the next climb will take, but I have learned not to be discouraged at the idea of hanging back for a bit. I need that time to refresh and breathe life into a new objective, to look back and appreciate how far I’ve come.
There are things I may not be able to do well or ever do again, but that doesn’t mean there’s nothing I can do. There are always new goals that replace the old ones. And even when I try and fail, I can still find some small consolation in the effort. The world is full of possibilities and I won’t let chronic disease stop me from exploring – because I know I can.
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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.