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.

Radical Empathy

Walk a mile or two… remove yourself from your so-very-right perspective and ask yourself why you support what you support…

Enough Free People? No.

“After we protested and went to jail and then went to court and was—had a guilty verdict, right? That week, the president came to New York and said, ‘Edward Koch was one of the great mayors in the last 50 years,’ and then said, ‘Michael Bloomberg was a terrific mayor.’ Now, this is the same person saying we’ve got to care for black boys, and black boys are being intimidated, harassed, humiliated, 1,800 a day. It’s just not a matter of pretty words, Mr. President. You’ve got to follow through in action. You see, you can’t use the words to hide and conceal your mendacity, hypocrisy and the support of criminality—or enactment of criminality when it comes to drones, you see.

And the sad thing is, Sister Amy, is that we just don’t have enough free people, let alone free black people. Black people, we settled for so little, so we get a little symbolic gesture, we get a little identification, and like on MSNBC, which is part of the Obama plantation, they start breakdancing again: ‘Oh, isn’t it so wonderful? He’s really one of us. We can now wave the flag again. We can now support our mindless Americanism,’ in the language of my dear brother Maulana Karenga, intellectual that he is. No. We ought to be over against injustice, no matter what, across the board, and be vigilant about it. I don’t care what color the president or the governor or the mayor is.” — Cornel West in an interview with Amy Goodman of Democracy Now

Landfill Harmonic…

Some things just have to be watched… With one child in the Greensboro Philharmonic and another in band and another who plays guitar/sings, this blows me away. Not that you have to have kids to be blown away by it…

(Thanks to friend Mercedes of http://ifattituoi.wordpress.com/ for posting on Facebook)

Penn State

Looking at all the conflict stirred up by the Penn State revelation, I find myself awash in the tide of backlash, noting the philosophical and political waves of commentary and strife. All the turmoil turns folks away from the actual carnage, the truth most worth our attention and I cannot avoid my conclusions about all this correctness writhing. Being philosophically correct is a nowhere game. Being politically correct is the same when we’re dealing with such stark loss, the unavoidably compelling call for justice, for refusals of distractions from those whose lives have been shredded by rape. Their work to heal requires our unflinching look at their stories.

Speaking from the heart, I can say that if I think of these children who were brutalized, I can only be enraged that they were so horribly victimized, that they may take decades to rid themselves of the imprint, the injury. And that some of them may not succeed. That, as with physical injuries, some may be maimed in ways nothing, no belief system, no doctor, no miracle can undo. There’s no way out of that fact. And the anger associated with it is a direct representation of the value of what these fiendish acts brutalized. The validity of outrage doesn’t change any laws of power or prosperity. Those who perpetrated these violations don’t deserve the waste of our energy by stewing in anger over their sicknesses. They are responsible for themselves. We are responsible for how we allow this to inform and inspire our actions as people united in love and in protection of value.

That Penn State did what Penn State has been doing all this time is not a shocker. It’s appalling, yes. But it’s not a surprise. We don’t grow into ownership and embodiment of truth overnight. Penn State might not any time soon since they seem, for now, only to stand for profit. We cannot always trust institutions. No matter how long their tradition or how reputable. We can work with them to further our own purposes. We can join with them to further our own causes. But, until institutions begin to embrace love and truth as their mission, we can never assume that our need for diligence in discernment or our responsibility as the gatekeepers for our children (or anything we nurture) is even slightly lifted by the presence of an institution’s reputation or supposed reliability or statement of purpose. We, the parents. We, the neighbors. We, the administrators. We, the co-workers have to assume the buck stops with us or it doesn’t stop at all. Not with the guy with more clout. Not with the bosses. Not with the lady with the social services degree. Not anywhere but here. With the one living her life, cultivating what she believes in and making sure the fruit of her fields sing of integrity down to the core. Because at the end of the day, and at this point on the timeline of our story, association with an institution does not make a person any less vulnerable to exploitation or apathy. It’s up to the individual to raise and keep the standard, to grow up beyond a need for mommy/daddy/institution to parent, rescue, protect. It’s that simple and that tough.

My heart goes out to the parents whose diligence did not shield their precious children from sexual violence. Our culture inflicts on parents an interminable burden, the crush of overwork and overwhelm in a world gone off the rails, where quality of life, cost of living and corporate greed collide, devouring precious value. Our culture makes it excruciatingly difficult, and at times impossible, to discern when we’ve placed our children in the care of predators. We must ask ourselves how, as a world responsible, we can lift the burden that so often results in the sort of collateral damage revealed by Penn State’s egregious failure, the collateral damage wrought by “reputation” and “prestige”. How have we succumbed to the cultural siren song of what Bertrand Russell calls “the gospel of work”? And how might we revolutionize our world such that what has now become the tyranny of work does not dull our discernment and lull us into a blind trust of those institutions inhabited by highly fallible humans? As caretakers, as parents and as tribe, we are all of us responsible for what our children encounter when we send them out to be educated. We must wrest ourselves from that tyranny so we can become more and more empowered to be even more effective gatekeepers in a world straining for healing.

Occupy Wall Street

Right Here All Over (Occupy Wall St.) from Alex Mallis on Vimeo.

I’m pretty proud of this turn of events in the U.S. It’s been interesting going onto blogs and online news “sources” and countering the propaganda. North Carolina has quite a number of events to choose from, people are finally finding their voices of frustration and strength. Who knows where it will lead, but it is progress, a spiritual honesty supreme. This 6 minute video is worth the time…

Police Violence In NYC

I know the enlightened are supposedly not reporting on the “bad” news of the world. But I remind myself that this blog was set up with the idea of words awakening: Awakening me, awakening whomever comes along and has a heart for wakefulness. It’s my way of casting my bread on the water. This is bad news, don’t get me wrong. I put “bad” in quotes because it’s not so much bad as it is awfully accurately spotlighting humanity’s ugly stuff stifling beauty. Stuff that has to stop. It needs to be mentioned. The whole positive/negative mindset, blissful ohmness and glory to godness eventually falls flat. You know why? It’s not all we have of love. Love is something besides bliss-bathed bounty and conspiracies of beauty. “Besides” means, in my application of it, in addition to, as well as. Love is also hard work. Love is courage in the face of corruption. Love is indignation and refusal to swallow oppression. Love is strategic in planning for long-term fulfillment and freedom. When the train suddenly jumps the track and is barreling down on you at ungodly speeds do you sit there and say “all is well, the universe is blessing me.”? No. You run like hell out of the way. And if the trains begin to make a habit of jumping the tracks, it’s time to take active measure to prevent any further carnage. Basic truth. Basic love. Basically exposing ugliness for what it is when beauty is under attack…

Kill Selfhood = Kill Empathy = Kill Troy Davis

RSAnimate’s productions get 5 of 5 stars from me pretty much every time. This 10 minute bit of Jeremy Rifkin’s Empathic Civilisation is worth every second and reflects beautifully on how the internet is providing an outlet for our soft-wiring towards empathy. Case in point: Troy Davis. The world saw, the world came running. Solidarity. But the Georgia Board of Paroles missed a few steps in the selfhood stage maybe? They couldn’t see past their agendas for “justice” and political posturing.

I realize this issue was about more than empathy. And for some it wasn’t as much about Troy Davis as it was about the barbaric reality of the death penalty itself. For others, it was simply a miscarriage of due process, of justice. But in the final analysis, our ability to experience empathy is what mobilized us. What if this were my son, my neighbor, my grandchild? So, we look at the failure of the Georgia Parole Board and how their adherence to their rules blinded them to the inaccuracy in their verdicts. So, what kills selfhood? Many things. But one things stands out to me today: The abortion of radical grace. We need radical grace in order to develop with healthy boundaries and a sense of self without shame. We need radical grace in order to be motivated to move beyond our destructive habits.

So what is radical grace? Radical grace is a revolutionary force of understanding and empathy whereby we facilitate merciful justice in order to inspire and facilitate opportunity for change, healing or closure in and for others, so that we might ALL THRIVE. Sometimes radical grace wields fierce, and even brutal words in the face of tyranny, oppressive deceit and corruption. Why? Because it is inspired by the empathetic response. Tyranny, deceit, corruption all divorce us from our humanity, from the value of selfhood and the habits of radical grace. We instinctively snarl at their destructive tools and that, that is radical by sheer virtue of the fact that we’ve been told from grade school to high school and on that we must NOT disrupt the status quo or we risk being branded.

Go ahead, brand me. Brand me radical grace activist, radical truth advocate, radical status quo disruptor. Why? Because our lives, our living, our loving, all…all are so profoundly precious.

The Parody of Democracy

I have precious little else to contribute after the miscarriage of justice yesterday in Georgia. Alan Watts reminds me why I feel so alienated from this culture.