Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia.

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By Anonymous

I don’t have energy
For poetry
For complexities and details
For the nuances and entrails
Of the the faces and bowels of the modern contemporary
human condition
For every minute detail of everyone’s opinion on every going on
For controversy or chatter that seemingly achieves
nothing.
But wasted breath, wasted thoughts, everybody retching into external space where words crumble and fall as dust
I don’t have energy for Brexit or Trump, or even climate change, for who said what to who,
For the self-absorbed whining of my fellow millennials, however justified.
But they are deeply in. Entwined. In love. Gripping and grappling, wrestling with this phenomenon of life. With every twist and turn and minutia, chewing and savouring and spitting out a million products of an active mind and brain that surfs on the surfaces and dives under the waves. That gets wet, soaked, sandy and salty and rolls in the mud, swallows air and land and embraces all with hugs and anger and guile then washes it off and gets up to do the same again the next day, and the day after.
I marvel and scorn. The brashness! Trivialities that bring me no joy. How can they all still feel alive, after the world has clearly ended? What is this endless hangover in which they puzzlingly still manage to infuse the greatest meaning into all those daily exertions and little actions? Or even big ones? So much exertion that crumbles into air and falls as nothing. Do they not see the inefficiency? The waste? The pointlessness of almost everything?
For I am deep. On the other side. In a field, locked out by the mist of this eerie wetland world. Kept away. Lost but not searching as there is nothing much to find, but a berry here and there among the moist damp grass and low bushes. I am bitter. Jaded. Slashed and burned. Efficiency is my name. Not the rational efficiency of markets and economics. The efficiency of stripping it all away. Superficialities, minutia, anything unnecessary beyond the act of survival. And of maintaining a glittering window of sunshine peeping through the clouds above the bleakness of the landscape, on one occasion. And another. That I know is there, glowing softly through the mist although it doesn’t shine brightly, apart from sometimes with a breakthrough or a dream. Before scurrying away concealed once more by words of lazyness and ignorance in tabloids and public policies that yet again get worse. The fight fell on deaf ears
and I cry.
But quietly the warmth glows through… If faintly in the distance and occasionally, a burning flash of passion and I yell. Shout out! Subside. And heave and yell again for they must hear! Out there beyond the mist my words must fall on at least one ear… with power and heart. Before I sink away into my hazy cozy discomforting space. The only breath that isn’t wasted is the cry for justice and the tender words of love. To a neglected friend.
For it is cold in here. But calm. No energy for politics or poetry. To survive the brain must remain an empty space of minimal exertion, each thought a disturbance of the peace. No talk. No inner conversations. The only hope is Ron, and what a weight. To put on a man who bears it so warmly and with such care. But he is tired. I hope for the battle ready to rally to his aid. In moments of clarity I call to them. Come! He needs you! We all need you! And I wait.
One day I will ride, a galloping horse across the fields of Wyoming and Montana. Soar across the landscape and the wide, wide open skies. One day I will be free, the mist brushed away as if it never came. Rising through the deserts and stomping to the hot springs. The only thing remaining that behavioural efficiency, its simple clarity a long, old friend. The silence and the peace of a life shattered, rinsed, and steadily rebuilt into something quite unlike before. The tangles of millennial roots forgotten, and never will we be the same again. We cannot rejoin the masses with their marauding, writhing, throwing themselves at life as if it were a god-given right to be grabbed and chewed without a thought or care. We will be forever humbled by the power of great loss. Quieted and calmed by the numbing staring wait of long imprisonment.
But we will look upon the world once more and smile.
With a warmth and calm appreciation felt only by those who knew
they might never return.
And we will drink to Whitney, forever indebted to the selflessness and care of all who fought when we had no fight. Who gave us a glimmering distant sunshine of hope.
That is my dream.

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