“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.
Make me like the peonies reaching,
ripening and revealing shimmers of light,
born of darkness, from disintegration in a long story’s night
whose tale suggests only seclusion unending and a crushing fate…
until the bursting out upon the day,
until the unfolding from haunts of burial entombing,
until all my songs release fragrance
sweetened by a holy undoing,
whose whispers in moonlight of a sun behind the night
birth soul beyond the doom,
holding sacred sway over a mysterious teaching.
At the risk of being “too serious,” I’m posting this somewhat intense documentary. I had an interesting conversation with my youngest son yesterday about seriousness. It reminds me how much we run from seriousness but also how much we need it in order to be able to be given more fully in our mirth, oddly enough. “Seriousness” is a big, vague word but it refers to taking life seriously, taking feelings seriously, taking experiences of loss seriously, and gain, seriously. Seriousness as a perspective of life or attitude towards one’s own existence juxtaposed against the alternative – humor, light-heartedness. What I find is this: Whatever we run from also holds a piece of our authentic self hostage. The imprisoned bits of self cannot genuinely participate in laughter and sometimes reach desperately out for any and every comedy to salve the haunting fear within, a sort of addictive process requiring perpetual doses of positive or funny or anything but the things we run from within ourselves…so…I’ve found that as I’m bankrupted by some of life’s crueler tides, I’m also opened up to deeper experiences of joy, an unreserved, unguarded unfolding of meaningful and light-hearted appreciation for all that life can be. I have precious little patience with positive mantras divorced from process, divorced from the organic work of finding a truly uplifting perspective via the deeper work of… honesty. I love Mark Pellington’s work as well as David Whyte’s wonderful exposition of so many layers of life’s more serious realities. So, this follows:
Mark Pellington has this to say of the documentary:
“This film was made by me as an exercise in process, to explore my own progress and personal feelings towards loss, grief, and healing. Via this text. My instinct was to be very simple and direct and to understand these words, via catharsis. The conduit was human, the face. The unlying veneer, the carrier of instinct. The face. It evokes the range of emotional expression and human truth of strangers. They all listened to it one time and brought their own inner stories to you the viewer. “
stripping life fells me
white silence stills sweet movement
’til the blooming sings
(I haven’t posted in months due to surreal challenges with CFS/ME and all the stripping life can be even without disease. The passing of two precious souls in February overwhelmed me and well, and. Life will, ultimately, dress us up in our naked humanity revealing the simple truth that with or without great health, with or without traditionally-held realities of identifiable productivity…love is all the reason to keep on, even if it’s a bit of a crawl with rebellious outbursts of dance. Here’s to better days.)
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.