Anniversary of a Diagnosis

It has been two years now since the diagnosis of Myalgic Encephalomyelitis (ME) changed my life.  The disease, recently renamed Systemic Exertion Intolerance Disorder (SEID), has also been known as Chronic Fatigue Syndrome, although the latter is really a misnomer.  ME affects muscles,  the spinal cord (nervous system), and the brain stem. I wrote about the early stages and diagnosis process in my other blog:  Character Counts.

While I knew that something was wrong me at the time, I could not have imagined it would lead to a life confined mostly to bed, sandwiching activities between quiet and rest, total dependence on others, and a compromised brain.

“How have you survived it?” a friend asked me recently.

It is a fair question.  How does one go from full-time teacher, parent, and grandparent, actively engaged in life to a slow crawl?

The answer is you just do.  What more can we do but embrace the experiences life throws at us and adapt?

“I’ve survived worse,”  I responded.  “I’ll survive this.”  Even as I said it, I knew it was true.

Yes, life has changed. Yes, it bears no resemblance to the goals and ambitions I had for myself in the past.  Yes, it is deeply depressing at times.  And yet, I face this challenge as I have many challenges before, with acceptance and faith.

Guess I’m made of stronger stuff then I’d ever imagined.  Or, as Martel suggests, I am just mad.

Yann Martel

All living things contain a measure of madness that moves them in strange, sometimes inexplicable ways. This madness can be saving; it is part and parcel of the ability to adapt. Without it, no species would survive.”
Yann Martel, Life of Pi

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

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