“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.
Healing hammock ride the sky, in my lingering repose.
Silence washing, flooding,
Crash this deafening noise, all the clamoring
impossibilities’ haunt of rhythm’s worst explosion, enigma’s crueler clarity
suggesting daunting end of days sooner as I
long for, work for, breathe for later, much later.
Wipe away my necessary practice,
the trauma of doling out tomorrows’ chances
via feverish weighing today of…
how much too much, just enough
or not enough now will facilitate more of a future, not less…
why must all these labors somehow suggest
no now and no when or where in which to be or go to or later for which to aim
when their aim is to seize assurance?
So, in my fevered necessities,
somehow slip me past the grasp that deadens days
and back into flow…
Take me to obliteration lovely, blanking out the doling minutes, seconds…
Bind me to places where eternity emerges, maybe there shimmering
on the edge of twilight…or here unveiling the timeless rule of leaves,
and trees holding hammock’s sway.
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.
pounded by rain, shine…
elements crushing seed’s code…
still I bloom red, soft.
now maybe the dark
envelopes all I believed
but warmth lingers, light
in my veins: a story
of days on the horizon,
blooming life anew.
Alan Watts weaves together many layers of the human experience in a liberating expression of truth. It’s one of those essential truths I wrestle with more often than I care to admit to myself. But. The more I admit it, the more it’s about the music and less about what I’ve accomplished, where it is I think I’m “going.” The way we’re set up, at such young ages, to look for the grand trophy, the major accomplishment, the big prize…it’s a defeating march. Chronic illness, or any recurring struggle, will either highlight the defeat or push us against that wall, the one we can stand and look at until it melts away and the music is the thing, once again. On with it…