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When the Universe Bares Its Teeth in My Life With Chronic Illness

“Better to be born lucky than rich,” the saying goes. When I was a child, my parents used to enter my name in raffles, as I was always likely to win something — a stuffed toy at the Christmas bazaar, a stereo system in the football club draw, a hamper from the local shop. Luck favored me in other ways too. I flourished at school and later at university. I earned scholarships to enable further study and acquired valuable work experience. My world was full of possibilities, expanding all the time. The universe was in tune with my dreams.

Until my luck ran out.

It’s difficult to say exactly when the change came. Was it the day I fell over the computer cable and injured a muscle on my left side? Was it the litany of medical problems that ensued? Was it when I ended up with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), which I have lived with for almost a decade? Yes, the tide turned, the universe bit, and Lady Luck most definitely deserted me.

Did I accept this change of fortune with grace? Heck, no. I railed and rallied against it, fought it, got angry, kicked and lashed, cursed and swore. Until I gradually realized it was doing no good. And so, a long and difficult process of accepting my new fate began.

Thus, I now live with chronic fatigue. Each morning when I wake, I don’t know whether the day ahead will be one in which I can function “normally,” or even half-normally. I listen to my body as I make breakfast and potter gently around the house. How heavy do my muscles feel? How clear is my head? Will I stay up for a few hours, or do I need to get back to bed?

Living with this unpredictability is not easy when you’re a compulsive planner. Often, I will wake up full of hope that several tasks will be ticked off the to-do list that day, only to wilt a few hours later and grudgingly postpone the remainder of the jobs until energy levels improve again. “Man proposes, God disposes.”

So, what lessons did illness come to teach me? Illness has taught me patience, because I am now playing a waiting game. I’m biding my time until medical researchers find a definitive cause for ME/CFS, holding my breath for a cure that will address that root cause.

Illness has taught me compassion. Nobody has a monopoly on suffering, and many people are deserving of kindness and support.

Illness has taught me who my real friends are — the stormy-weather friends — and I am eternally grateful for them.

Illness has taught me that I am a human being, rather than a human doing, and I am much greater than the sum of my supposed accomplishments.

While I would never go so far as to say I was lucky to encounter chronic illness, neither is it the Armageddon I had initially envisioned. I can read. I can write. I can meditate. I can feel the warmth of the sun on my skin in summer. On good days I can walk to the shop, read a chapter of a novel, meet a friend for lunch. On the other days — the pajama days — I rest, and take stock, and hope. Hope for a reprieve, a get-out-of-jail-card, a shorter sentence for good behavior.

There may be a happy ending, or there may not. I long for freedom, wish with all my heart that my lucky streak would return. Until I realize there is another type of freedom available to me, a lightness of being, if I let go of the desire to control the outcome.

Nowadays, when the universe bares its teeth, I smile right back.

Getty image by Grandfailure.

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