Without End

Did I climb these mountains, laboring for the other side, only to find the valleys full of silence, of empty cities where my heart stumbles down alleys full of space and trampled cast-offs?

How often does a heart withstand indifference, apathy, slumber and the non-resonance of so many assimilated before falling quiet, before finally asking if maybe the one deep resonating response is merely just heart’s call echoing against walls of hope, or bouncing back and off the hardness of others’ glib deflection, fearful trivializations? (How many self-proclaimed Useless Pucks does it take to refuse and distort love?)

And it looked so much like promise as I cast my own visions in the distance and across a sky, a night blooming dawn from the depths of my own awakening…

to what? To the amness without end, the love only rarely known (and so often feared) and the endless fall of light, to the feast of being – in spite of obstruction, to the farce of freedom, to the unexpected release and relief in letting go, to the center and deeply down to the nexus of love.

 

Revelation 3/9/17

“Love… Thy will be done
I can no longer hide, I can no longer run
No longer can I resist your guiding light
That gives me the power to keep up the fight

Love… Thy will be done
Since I have found you, my life has just begun
And I see all of your creations as one perfect complex
No one less beautiful or more special than the next
We are all blessed and so wise to accept
Thy will, Love, be done

Love… Thy will be mine
And make me strive for the glorious and divine
I could not be more, more satisfied
Even when there’s no peace outside my window, there’s peace inside
And that why I no longer run” (Martika)

Let this be so for all who discover a long-buried essential element of their souls, a suppressed or feared aspect of their being. I stand with every layer in celebration, and in gratitude for inclusion in each gentle and courageous revelation. Love, thy will be done…

Profoundly Human Endeavors

“Even once the true cause of my disease is discovered, if we don’t change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policymakers are not immune to the same biases that affect all of us. We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients’ stories and we need to be wiling to say ‘I don’t know.’ ‘I don’t know’ is a beautiful thing. ‘I don’t know’ is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then rather than fear uncertainty, maybe we can greet it with a sense of wonder.” Jennifer Brea on CFS/ME and the ways the medical model can improve for all of us.

j. ruth kelly, all rights reserved

j. ruth kelly, all rights reserved

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.

Words Mean

“We fret about words, we writers. Words mean. Words point. They are arrows. Arrows stuck in the rough hide of reality. And the more portentous, more general the word, the more they also resemble rooms or tunnels. They can expand, or cave in. They can come to be filled with a bad smell. They will often remind us of other rooms, where we’d rather dwell or where we think we are already living. They can be spaces we lose the art or the wisdom of inhabiting. And eventually those volumes of mental intention we no longer know how to inhabit will be abandoned, boarded up, closed down.

What do we mean, for example, by the word ‘peace’? Do we mean an absence of strife? Do we mean a forgetting? Do we mean a forgiveness? Or do we mean a great weariness, an exhaustion, an emptying out of rancor? It seems to me that what most people mean by ‘peace’ is victory. The victory of their side. That’s what ‘peace’ means to them, while to the others peace means defeat… Peace becomes a space people no longer know how to inhabit.” Susan Sontag