As a child, I was fascinated with the changing colors and ornate designs I discovered in the cylindrical tube of a kaleidoscope. It was a fascinating trinket brimming with effervescent colors that sparked my imagination. With one simple rotation, I had the power to blend radiant hues forming unique and vivid patterns. I got a secret thrill listening to the melodious crackling of tiny beads and glass fragments settling into new positions. Little did I know that my body would one day become its own kaleidoscope filled with the glass fragments of RA.
RA is constantly changing the colors of my life. Its presentation of symptoms is as varied and unique as I am. It is a very personal disease, stamping its own distinctive fingerprint in my body, but possessing the rare trait of morphing its pattern at every turn. Just when I think I know how RA operates in me, it coils into a new design. Each flare is slightly different from the last. I can feel the cunning shift in my body – the unexpected heat coursing through my veins, the sudden fatigue, and the searing inflammation that blows up my joints and weighs me down with its swollen mass. One day I am heavy and sluggish; the next light and sparkling, with only the faint remnants of discomfort that came before. We will all experience common symptoms but they won’t always manifest in the same way – new patterns are created at every turn.
The many ways in which arthritis portrays itself can ruffle our tenuous composure, spinning us in circles trying to dodge all the jagged scraps of disease – mysterious aches, burning joints, hot fevers, numbness, lethargy, and uncertainty. Sometimes it can feel like the pattern repeats itself, but if I really pay attention, I’ll realize it’s never exactly the same as it was before – there are always slight fluctuations. I had to merge the healing colors of my own energy and learn how to morph with its many incarnations. I created my own mirror of therapy to refract the changing colors of RA – hot baths, ice packs, heat packs, exercise, community support, medication, braces, splints, blankets, pillows – with each new twist, I discover how to unscramble a piece of its intricate pattern. It comforts me to remember that I am as changeable and unpredictable as RA. I am my own kaleidoscope – my life is never stagnant. Like the water that makes up more than half of my body, I am always flowing through change.
Every day is a different color; every day RA changes its shape. As much as I think I know it, all I can do is arm myself with as much knowledge as possible, and understand that I am as unique as this disease and I have the power to reinvent myself along with its changing patterns. Arthritis surfaces in many forms. It’s up to me to learn how to weave my own way through its transformations, to try to fuse the colors of wellness into the cracks of its complex pattern. I look forward to the day I can split apart the fragments, crush them into sand and cast them into the winds of change.
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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.