“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.
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.
“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
Michelle R. Smith spills some powerful truthspeak that needs some serious attention. Bowing to her beauty and brilliance….
One of the reasons that I dislike the way that black people deify Dr. Martin Luther King, Jr. is that it makes a lot of us adopt a passive way of dealing with racism and racist white people that is really fucking unproductive.
MLK was a Christian minister. He advocated for nonviolent protest and civil disobedience because these principles aligned with Biblical doctrine. He combined a political message and mission with ministry. But this isn’t a mandate. This is not the only or the “right” or at this point a proven way to effect change around issues of race in our society
As courageous, wise, and principled as MLK was, we can look at the racial climate in this country today and say–in all fairness–he might not have been as effective as we needed him to be.
Because he sought to change people’s minds. He sought to make the Masters…
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Take me, every ounce of this flesh and bone, pulse and blood of being, down that road,
that road long avoided, long ignored. Take me down that road, past all the detour signs and the “do not enter” and “wrong way” warnings. In the night, we journey. Past the sleeping towns and the slumbering souls barely breathing, we ride. All angst aside, all in, all gone on oppression, take me down that forgotten highway where only my body’s direction may lead as my soul receives and gives, leads and follows on a path of ancient knowing.
You leap beyond all
despair and hopeless falling.
Fiery woman, live;
no spire reaches
past your own sacred lightning,
flaring out fierce love.
Stomp and squeal delight
against a night of constant
yearning. Your love’s dance
blurs us past façades,
awakens all our hoping
towards sun’s warm call.
“May” is one of my daughter’s nicknames. On this day, pictured here as blurred trees and a church held steadfast against our movement, Marion drove us around to see some of the more lovely parts of Pittsburgh. Our trip to see her began with her trademark spontaneity and abandon when we drove up to her home. She leapt up and out the front door into the 1am cold night air and squealed with joy and then down the stairs, doing little run/skip/dance moves out into the street to reach into my car for a huge hug. And that is the best of the “Church of May.” She reveals, at her most fiercely loving moments, what we’re all made of and what we’re all here for … no matter how dark the time. We are the sacred, spiritual, divine-as-love.
I love how all these leaves flutter and hover,
held fast by a moment in which the next moment
has already asserted the limitation of the time of holding,
of hovering aflutter as all that lies on ground cluttering earthsongs
once was held a few yards up ‘tween earth and sky
and how we are all right here uttering without much regard
for the brevity of the time or the lines bestowed on our minds…
the power to transform our bullshit and make meaning before we,
fall to ground, joining an ancient chorus of ancestral rhyme,
a rhythm unrelenting, calling us all