“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.
I’m all done with notional condemnation,
nonsense posing salvation
suggesting pre-birth agendas and all the control
a robot might covet.
Take me to the truth, down to the bone of it.
Marry me to the wonder found in the midst of
all this chaos and randomness daring us all
to make meaning.
I see their meaning made in fear.
The meaning they make
spews the poison in their hearts,
the snare in their aid.
Take me far away from the righteous.
I want to live with the undone and undoing.
I want to dance with the makers and shake
every foundation lost to the mold of stagnation.
Deliver me to love, love in spite of it all,
love because of it all,
love morphing, rolling up sleeves
and shaping this mound of flesh into new and ancient songs.
Tenzin Choegyal’s singing, particularly with the Metta String Ensemble and particularly the Crane Nomad song reached into those places humming with a bit of futility, of loss collecting in dark corners of the soul. The timing was perfect, right before an MRI to see if I have MS, ALS, or some other crippling illness. I suspected it is the same battle I’ve fought for over 20 years but the concern shook me up. Choegyal’s voice pulls soul parts back from the edge of the abyss… beautiful healing… insta-weep and weep of the best kind of cleansing.
My only complaint is that he laughs at the symbolism of the crane, or, more specifically, the spiritual medicine. But I suspect he’s laughing at the thought of how strange he must sound to the western mind. The crane has been speaking to me already…nothing strange. Longevity. Good health…wings…moving on from dark times…
His expression takes me back to a childhood filled with some of the most beautiful, mystical singing imaginable…good medicine.
This reaches me on several levels because, for one, it shows a man giving his body, his will, his time to the military. On some levels, this fact alone is upsetting to me. I’m not anti-military or unappreciative of the hearts of those who mean well when they join the military but I do struggle with the choice. These folks are giving their will and good health to agendas so corrupted and obscured by greed and lust for power and control, it’s difficult to see even the potential for positive karmic purpose in the choice so many make to serve. But, I support the human, the person.
I love what is expressed here about “The Secret” and about owning your life. And as one who longs to sprint again and who has some major challenges – not with an almost 300lb weight issue or injury from parachuting out of airplanes, but with the considerably daunting reality of CFS – this rendered me weepy and appreciative. So, Happy Memorial Day to those who find it meaningful. Let this be a memorial to the human spirit, the tenacity both in and out of corrupt agendas and into the ownership of our lives and our power.
Powerful 3 minute trailer…