Happy Holidays…

At this rate, 2022 is coming to a close and I’ve managed only a few posts. ME/CFS sidelined my progress as I scrambled to re-establish a baseline that appears to be taking shape now. But this isn’t the first time that baseline has appeared to be showing itself. So I’m semi-encouraged, but mostly holding my breath. In the meantime, I’ve been gradually developing a shop on Etsy and how I’m going to tie everything together remains to be seen/known. But I’m proud to have persisted in the fits and starts available to me here and there along the path.

What is a baseline, you might wonder. For someone with ME/CFS, it’s the level of activity and alternating rest that can be relied on, for the most part, to not trigger worsening of already existing/perpetual symptoms, a crash or relapse. It is found by mostly resting. Rest, good nutrition, supplements and medications take all of your time and can persist for months or years until you find you can get away with something like prepping a meal once a week (not doing the dishes afterwards or putting leftovers in the fridge, but hey, progress). So, you do the thing you can get away with, the one thing and it’s added along with resting, nutrition, etc. What’s glorious? Finding you can shower once a week without severe backlash. But it’s important to maintain the one new thing for at least a month before adding any other new things. The tenacity required shames every doctor out there who presumes this illness is psychosomatic or a result of mental illness. It asks for a level of mental stamina and willpower most never have to discover. Not that I’m bragging? I’m just fed up with what I see now emerging for folks with Long Covid. The same b.s. with people in key positions concluding the problem is the patient, not the lack of knowledge about post-viral illness. So, baselines. I had a beauty of a baseline before my 2nd Pfizer jab. That was over a year and a half ago. I’ve avoided the boosters for obvious reasons and having come close to a baseline previously, I’m clinging tightly to the progress made at this point.

I’ve managed the gradual work towards the shop on Etsy over the past 12 months by eliminating outings, cutting down on basics like meal-prep, dishes, laundry, avoiding news when it’s especially stressful (if possible), curtailing lengthy conversations, literally insisting on no-communication days sometimes and other things folks just take for granted. Multi-tasking has mostly gone out the window. One thing. At a time. And I have been sure to take long stretches of rest without doing the one thing I can do. I say no to others more often than I ever knew I could before and I say yes more often to my needs and desires as I’m able.

Can I just say…so few realize how precious each breath, each habit, each thing taken in stride is. I see pictures of a hike I went on a few years back with my sister and I just grin and catch my breath. It’s almost like you might expect someone to react if they’re coming across the photo of the time they met their most beloved actor or writer or athlete. Hey, look, I did a thing called living that day. I paid heavily for it. It was worth every ounce of pain and backlash.

Life is incalculably valuable. And that is all I have to say given the winding down of this day and my need to conserve.

Here’s a link to my humble, but gradually growing, shop: Digital SoulSpeak

Happy Holidays!

Cuppa Life…

When snow falls even just a wee bit, softness following
on the howling slams of wind and thunder slapping awake
a peaceful slumber, you sit quietly in the half light
sighing hours later, gulping in the stillness
as it falls outside the window of your reverie.

The words above reflect on the night before last when winds and thunder snarled my sleeping in a surreal rush of clamoring. The noise was akin to dreams and transformations, the kind that sweep you up out of nowhere in a whirlwind of change and awareness. Surreal. Magical. Frightening and exhilarating at the same time. The storm windows on my bedroom windows clanged loudly, evoking visions of trees uprooted, hurling themselves at the night.

So, awakening to snowfall, the gentle quiet of it all was a wonderful contrast and I felt deserved reflection.

Not that it’s about the new year, but I’ve resolved to more posting here in order to participate more in my power to create, however small. One of the challenges of disability, and particularly of the MECFS variety, is that of escaping the sense of feeling imprisoned, held captive by the power of the illness itself and this is especially true as it has real power to do that very thing, to imprison. And so, we veterans of such imprisonment get to learn the sort of freedom that defies chains and bars. It’s not a lesson I’d wish on most folks. But it is what life has dished out to some of us and my past attempts to pretend it might all go away have faded into an awareness that the only way out is through and that sort of pretending becomes a self rejection. I refuse such.

So, here’s to deeper acceptance and finding ways to own and participate in one’s power, bit by bit.

In A Warming Sun…

I look out the window as it whispers quiet melodies of all the goings on going on without me. And yet I wonder whether goings on go on without me or if maybe we’re all connected. And if we’re all connected, are not the goings on of others also my own? If only I could know the quickened pulse of one dancing fit and free and not the rapid race of a heart working overtime for a body whose health declines more than sometimes, sometimes often without provocation.

In my own way, I do feel connected despite the isolation MECFS insists. I hear the city sounds outside my door, and sense a world full of doing. My heart tells me we are one, and in this moment I feel full. And while I feel full, I also feel the many things beyond my reach. Were I to grasp them, therein would a fullness peak, eventually waning. But I would remain.

photo by j. ruth kelly, all rights reserved

What I come to in my non-goings on of a life is that we all must land in the same place. We all face the inner world, an immovable yet flowing eternity. And that same world goes with us whether we are fit or frail and that same world remains when the noise and clamor fades.

I long for more doing and going and yet the fullness of the moment rewards me just the same. I am grateful to be here witnessing the play and tussle suggesting endless horizons. I look out the window knowing their promise.

They only guarantee experience.

Horizons don’t make us more free or more present. They simply pose a chance for more ways to grow and love in a world aching for peace.

But I look out the window and accept my rootedness for now. And I remember when I last chatted with my maple friends forever rooted in my front yard. They whispered a contented grace. They daily taste the world as whole and one, gathering life’s echoes as feast in a warming sun.