Profoundly Human Endeavors

“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.

j. ruth kelly, all rights reserved

j. ruth kelly, all rights reserved

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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.

Hammock’s Sway

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.

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Own Your Life

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.

One Foot, then . . .

the other. I hear this is good for progress. But I’m finding, once again, that sometimes progress is one foot, then the other up on couch for an hour while the body gets back in sync with my dreams. Or is it my dreams get back in sync with my body? In any case, overload and CFS beg a re-visiting of what is defined as success. I sit back and ponder the different comments and input I’ve had over the years regarding this chronic struggle. Some saying I got better when I quit checking my temp (as if I do this often) when what happened is this: I gave up outwardly showing my effort to figure out what was wrong; I popped 8 aspirin a day and downed 6 cups of coffee and crashed for hours on the weekend. Those were the really irresponsible years back in my 20s when the income was mostly on me and the former hubby was in school full-time and I was telling myself it would all pay off, my turn would come. Now I can eat all the right things consistently and have horrible days consistently. I’m good friends with Stevia. I adore raw veggies. I’d rather go hungry than eat McDonald’s. Somewhere between my 20s and now I had good years with this illness. Even eating badly, and thriving within the restrictions of CFS; running, working out, lifting heavy objects, planting my garden. It’s a bit insane. So.

This monkey got no rhyme or reason ‘cept “hey, you livin’ a bit much now, I’ll show you!” Or “hey, you laid low and I’m still gonna kick you hard today.” So, there it is. Another great tidbit useless to me: “Good boundaries help!” Righto. Good boundaries don’t help. I can, as stated previously, have a superb run of perfect boundaries (you know, like when I tell my kids they can have their emotional breakthrough at 10pm without me because I have a schedule and their soul work just has to wait. *sarcasm alert*) and still find myself kicked around by an unpredictable run of fever, joint pain, muscle pain/weakness surreal and oh did I mention short-term memory loss? I sound like I’m whining. I’m not. I’m just angsty. Supplements get old. Repercussions for holding a baby when I use to be able to do Teresa Tapp’s hoedowns and workout while running a low-grade fever and chasing a 4 year old yeah not all at once, mind you. And you don’t intentionally do things while running a fever (ok, not usually. sometimes you just do it because you’re it and 3 kids and) See, go ask the thoroughly boiled frog if he noticed the water getting warmer…

You know, I’m not happy about this nasty “syndrome” today.

And so I must insert the positive attitude now. Right? Wrong. I get to be in this frustration fully and know, accept, believe that this cycle will burn itself out, the monkey will tire of toying with me and I’ll get back into a more manageable zone. It’s not “negative” to see things for what they are, to experience angst or be completely put out with useless tidbits of “holier than thou” helpfulness. People assume, arrogantly, that if you’ve had something for over 20 years it must be because you didn’t do your homework, need to cut something out of your diet and didn’t know that having good boundaries makes things better. But tell them you have lupus and they shut up. See, it’s because lupus is a “real” name of a “real” illness whereas “chronic fatigue” is just a “syndrome” and it must be in your head. I still get advice to take an anti-depressant. I may be angst-filled today but I’m not depressed and depression isn’t running the show here. I remember years of depression. And CFS wasn’t kicking my arse back then! Go figure!

So, I move from useless tidbits of information posing as “help” to what is defined as “success.” And I run to Jeff Brown for that because he doesn’t have CFS and his verbal skills are way beyond mine right now. “Surrendering to the not-knowing. Befriending confusion. Flake it til you make it. Live with the question.” I’d type up the 10 sentence rally that had me bawling like a baby with appreciation but I don’t have the energy to find it. Just let’s say that success is not defined by anyone but the individual living her life as best she can, digging in the dirt of her shadow, becoming more and more aware, growing, honoring her soul’s code and transforming both on and off the couch (and grouch mood!).

And for all the gurus out there who really believe that airing your angst is a nowhere game all I can say is BAH! It must get OUT. Living in angst perpetually? Groucho all the time? God no. But this moment, man, I’m stomping on the inside and growling at this illness while my higher self chuckles, knowing that in 5 minutes I’ll loosen every muscle and surrender. And the gratitude never went anywhere, folks. We aren’t either/or mechanisms of assembly-line productivity. We are humans. We are both/and/all-at-once and when we figure that out, we’ll thrive even more, ill or not…

Back to the couch!