Myalgic Encephalomyelitis aka Alienation

I so often wrestle with whether or not to express what CFS/ME does to my life, how it shapes the landscape of my mind, my will. More often, I choose to sparingly articulate how it impacts me, simply in the interest of sanity. But I find, as more and more people wake up to the truth of this disease, that it is becoming more empowering, less overwhelming to go ahead and speak up. The ignorance is melting away as people realize it’s not a psychological issue but a real assault on the body.

As Jennifer Brea experienced initially, so did I. Fever over 106. Pneumonia for the first time in my life. Early 20s. Never. The. Same. After my primary care physician sent me in many different directions seeking a diagnosis, we landed on the diagnosis of CFS. And the alienation began right there in my doc’s office, with her set of prejudices awaiting me like a box, a prison cell.

Brea’s TED talk speaks to so many of the issues confronted by those who walk this path. Her words, in their affirmation of the validity and impossibility of the struggle, bring balm to those who have suffered this illness for a long long time.

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Earth Awaits

brilliant-coloured birds tend their silence here, perching on stillness and heart’s ache, a hushed fear catching in their throats, poised against a hope we’ve lost sight of in life’s cruel twists…

whose song will they next sing for us, breaking out upon the night a memorial of life precious, fleeting? surely their melodies weave eternal tapestries from the light of each heart that has ached and joyed before us and will flow onward, grasping our own and those yet to come…

let us hear their silence and know all the earth aches for each one of us.

and when their songs fall again on our ears, may we be gently enclosed in the comfort of their epochs, our stories alighting on trees, interwoven with the spirits of all nature, whispering into valleys, bursting along rivers we may never see, yet filling hearts with melodies uniquely given by each of our lives…

let us hear the love and know all the earth awaits our answering songs.

but for now the womb of silence weeps. the songbirds listen,
holding sorrow’s breath…

j. ruth kelly, all rights reserved, 2014

j. ruth kelly, all rights reserved, 2014