“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.
(Former Semi-Evangelical Facing Post-Trump Choices)
There was a time in my life when I had to make a choice about where I stood on a crucial issue in my community and personal life. It feels like a lifetime ago. I have since faced similar choices — deciding “where I stand now that I know this…now that I have experienced that.” Sometimes I can choose the luxury of not standing, just flowing with and being with what life has been. But the one point in time that defines so many moments for me and especially helps me find clarity in the midst of confusing feelings, thoughts and impressions stands out in the starkness of illumination that only abuse survivors can provide.
At the time, my children were only toddlers and I had one more beautiful child to bring into this mad world. I was sure of so much. I had been raised Republican, evangelical Christian and most of what that entails, with the exception of racism. Or so, I thought. In any case, as I look back, I can see the cloaks falling away from me, the ones that covered my humanity in shame and confusion, the labels and identifiers now wiped away by a love of human, of being human and the divinity found where my skin begins — stripped by life’s more relentless tides, timely connections, brutal truth and a refusal of my own bullshit. No longer evangelical, republican or much else, I sit here viewing where we are as a nation with a Trump presidency on the horizon and it asks me to choose.
And I’m drawn back to that time when I chose to stand with a family member who had survived sexual abuse at the hands of one who was meant to protect her, her husband. The fact that so many in Christendom have believed that a man has every right even if his wife isn’t consenting was not without oppressive effect at that time in my life. (The historical imprint of this toxic belief may well be what has influenced so many white women to vote for Trump. They have become desensitized to their own value.) So, I fell back on pure logic and grace. It was the next phase in my walk out of the confusion created by the dogma of my youth as I asked myself: what is marriage and how is a marriage shaped by actions and how do divorces evolve out of those failed marriages? What are actions of divorce vs. actions of union? I asked myself how much a ceremony makes something real. And how much more real the actions of those involved in the relationship might be, more real than beliefs and more real than stated intent. I asked myself how a broken person could ever truly join with another broken person if the breaking point had to do with capitulating who you are in order to survive authoritarianism. Questions like that gave me no room for pretending. It impacted my own marriage in the process. And in the final analysis I found myself at that place where you ask: “How do I show love to both of these people in my life without betraying the one who was abused?” That question is inevitable when you have shared your life with both people and are faced with the truth. Then ensues questions about love and what love does or doesn’t do and especially Ruth as love and love as Ruth being honest with herself about things like spiritual energy and historical imprints of abuse on family trees. And.
So, the picture of someone standing over a line dominated my thoughts: one foot set on the ground on one side of that line, the other set down on the other side of that line and one hand outstretched, holding the hand of the abused while the other is holding the hand of the abuser. Straddling one truth: someone brutalized another and I’m the connection between them now. Why? What message does this send to the abused? The abuser? There are some mind fucks that just shouldn’t ever occur. But there it is. I realized that there are times when our deepest expression of love for abusers is to refuse their darkness, to turn away from them as a whole organism and silently hold out for their battle with their demons to end well for all of us, banishing the darkness. There are people who dedicate their lives to helping abusers. They invariably discover the abusers have been previously abused. But they don’t rush out to the most recent victim and say “Hey, s/he couldn’t help it…”
I look at this election and the racism, misogyny, climate-denying, xenophobia and bigotry teeming from the underbelly and oozing from every orifice of its history. It reeks. And in the middle of it all, I find my parents voted for Trump and in the ensuing confusion find myself trying to understand why people vote for Trump. Previously, all I could do was knee-jerk react: You choose Trump, you hate and enable hate. But these are my parents. I’ve faced plenty about my past. Why now this? Why did we have to also add this to the strain of our shared history? Where do I go with this? And on Facebook, I find posts of articles that ask us to look at what motivates Trump supporters can be met with intense disagreement by some who passionately loathe Trump. I passionately loathe all that Trump has created with his life and his platform, if you could call it that, a platform. It’s more like a quagmire. Those disagreements catapulted me into days of silence, reading, poring over my own words, posting, deleting posts, blogging, deleting the blog post. It’s tough when you want to speak to the heart of what is critical right now.
Suddenly I’m standing on that line in my mind and I realize that at this point, as had been true way back when, my only choice is to pull my whole being to one side and one side only for now. I am with those who mourn, who need healing and restoration, who see the abuses hurtling down the lines of generation after generation, individual after individual for centuries of oppression and abuse. The only way for me to hold to what I value the most with my life is to turn my back on any attempt to understand why a person would vote for Trump. For. Now.
For now, my questions to those who say they did not mean it as a racist / misogynist / xenophobic / climate-denying choice is this: Why were you comfortable with the associations of racism et. al. if you are not thus? Why is it so easy to ignore and/or dismiss the centuries of suffering of minorities, the marginalized, women and the earth? How much more easily will you be dismissed should this monster decide you have no value? These questions remain when all others have been somewhat answered. I cannot yet find an answer that assuages the sense of the power of this particular association.
To stand over the line and hold the hand of a Trump voter and the hand of those who hurt is to abandon so much of what is precious, vital, essential to our wholeness as individuals and as a people. It is a splitting down the middle and a tearing asunder. Until there are better days, more clarity and more of a sense of change of heart in those who protest the “deplorable” label (without self-examination or attempt to understand the minds of those of us who have a huge issue with enabling an abuser the likes of Trump et. al.), I can’t smooth ruffled feathers when statements about Trump voters are made. Those statements have been earned. I can’t seek to understand something that, at this point, appears insane and not make a liar of myself and a sham of the work to oust oppression. I can’t do that without abandoning my own humanity, my own grief.
(But I am wired to seek that understanding eventually. And it will be part of what I write and post about here, there and everywhere at some point. In fact, I did diverge into a moment of understanding here already, didn’t I?)
While I left the rigor of adhering to Biblical codes aside with a few exceptions, I remember a passage of scripture that resonates to this day: “To everything there is a season…a purpose…under heaven…a time to embrace, a time to refrain from embracing.” The season of standing with those who mourn is upon us here in the US and all over the world. Until the majority can agree that our exceptionalism serves only to rape, maim and destroy value, we must hold together with those here and abroad who know, who are kith and kin of the heartaches and losses created by the violations and brutalities of ignorance, “rightness” and elitism. Our work will be one of supporting and birthing a new way of being with our humanity as a nation and as people refusing the hatred, and ugliness that has landed us where we are today. We pull ourselves together in unity, in reform and in the hope for deeper understanding when the time is right. We stand in love.
“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
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…
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…