At One and the Same Time

Paulo Freire’s articulation of the human condition, of the divide between human solidarity and alienation, whispers to me of the grueling mission of working out our own salvation in “fear and trembling”, as the scriptures state. In his book, Pedagogy of the Oppressed, Freire states:

“The oppressed suffer from the duality which has established itself in their innermost being. They discover that without freedom they cannot exist authentically. Yet, although they desire authentic existence, they fear it. They are at one and the same time themselves and the oppressor whose consciousness they have internalized.”

I stop here with these words and reach deeply within my own experiences of having been ravaged by violation and oppression in my childhood and beyond. The work of healing requires intimacy with these truths expressed so perfectly by Freire. We must literally face that we have become or will become that which injured us unless we own that our living has become, or might’ve always been, a reaction against the internalized mechanisms of oppression formed in the badlands of trauma. Our thinking, our comprehension of ourselves and others is held captive by the minds of those who grasped us and shaped our sense of self, of other and of the world by their violence against us. I’ve found many internalized strongholds of self-accusation, self-annihilation and outright fear of who I am stemming from the decrees and energy directed at me by those who wanted me to forget, to never recognize their hand of oppression and violence in my life. And the damnedest thing is, I’m seeing how these constructs against the oppressor within pose as my most discerning self, the one surest of my frailty or my inadequacy or my shameful power, and even my beauty.

Freire goes on to say:

“The conflict lies in the choice between being wholly themselves or being divided; between ejecting the oppressor within or not ejecting them; between human solidarity or alienation; between following prescriptions or having choices; between being spectators or actors; between acting or having the illusion of acting through the action of the oppressors; between speaking out or being silent, castrated in their power to create and re-create, in their power to transform the world.”

And with those words I’m lifted up to an altitude perspective where my vision encompasses all the intersecting threads of choices, fears and shame extending through and entwining with life after life after life the world over, institution after institution after institution after…after every human and every human construct. These threads unite us all, a tangle surreal, though we were already united in our value, however ignorant of it.

The oppressed are everywhere. We are, until we can reach into the fathoms of our losses, our traumas, our generational afflictions, suspended in a slow motion suicide while careening through the timelines so thin, so quickly consumed by history. I think of my sisters and how we, each one, morphed into reactions against tremendous violation and horrifying oppression and how we then turned it on each other in the ways families can become cauldrons of reaction, of actions desperate and even depraved. It, if you look on the whole of it from up high there in the air, appears hopeless.

And yet. We have found ways to heal our wounds in love. And love, as a muscled, visionary, relentless, courageous, undaunted force most creative, most transformative empowers us, each one, to seek and to find discernment and healing. Who am I really? Who am I when I’m no longer afraid of my power, my beauty, my voice? And why did I ever believe that which is beautiful is bad? Violation of a certain type creates such a mindset. And that mindset then determines to erect a “do not disturb” sign on a life languishing in hope for tribe, for unity. The irony bites. But love and unflinching determination to unearth all the corpses crying out within our being wrests us from the bitterest ironies. And eventually, as we work to lift some of the heaviest of weights, as we envision a work of restoration, much like the work of surgery and physical therapy, we gradually move ourselves into authenticity, into being who we are in love. But we cannot afford to overlook the wounds more deeply embedded into our souls.

And to say it is a work of “fear and trembling” is not to exaggerate. I’ve quaked, sobbed, shook and shouted my way through some memories so unreal and seemingly unending and the work continues. And I hear, “it is for freedom Christ set us free…” and “I am come that you might know my Father…” and a passage speaking of the “love of Christ” surpassing understanding and I find myself embracing a work of salvation wrought first by one who walked this earth, one human and holy, just as we all are in love, just as we all are when we face fear, shame, and the death wrought by trauma and the ravages of alienation. And this is the Jesus I always knew though he had morphed into the oppressor by way of those internalizations only trauma etches on the earth of our being. People of every color and creed have experienced Jesus as the oppressor ‘though his life shouted freedom and love, his words whispered of union and truth. And he was presented to me via the minds and hands of those who’d brutalized my soul, eventually brutalizing my sense of the flesh and blood, bone and hum of Jesus’ most beautiful self, of his wholly being human and Divine.

As are we all…whether we embrace religion or embrace the truths present within those human constructs, constructs inspired by Divine awareness. On this side of a growing awareness of a deeper walk with the Divine all I can say at this point is this: Do not call me Christian. Do not speak to me of sin. Speak to me, instead, of the love and the relationship, the union within, the dominion of freedom and Divinity found in the deepest wells of our being, that deep calling unto deep, making us whole as we face the work of becoming who we truly are…in love and beauty. If all some of us ever desire to realize in our lives is a vision of Christ as symbol and his life as guide, if we can take that and apply it in love, facing the shame that binds us, we will find that we are at one and the same time, both human and Divine. Many people within every religion, and even within agnosticism, do the work of salvation within their souls via a process so closely resembling the Christ process we really cannot afford to lay claim to the one true path, can we? We are, ultimately, each one of us a part of the One in love and we carve our paths from the soil of our experiences, hopefully finding that unity Christ so deeply longed for us all to experience whether we embrace him or not.

On with it…

Do It Now

When you would grab me down there
and grasp and stare, boring into windows here
I would scream until I wouldn’t scream
for fear of implicating not just me, but you

And the implications of one who fought hard
to reclaim her windows, the deep pools you
raped for spoils you could never claim
despite your name, despite your preeminence
screams for justice here, screams my names:

Ruth, which rhymes with truth, and Jez,
perhaps the sweetest treasure,
the name I grew in my depths,
the ones your eyes sought to plunder.

But I never let you reach the me you
could never be, never produce
for all your raping of the tRuth,
and plowing sweet songs for sooth,

but not saying the violence your nature
exacted on my silence, my song wrenched
from my throat by your spinnery,
a bamboozlery, wickedry cinching,

clenching the nothing of your reach.
I seethe here, a love fiercely seeking,
finding voice you took. the song my soul
never forsook sings here, sings here, sings here

And yours I will never be for fear,
or for the claim so dear you could never be.
Open up your own eyes, set yourself free.
I see our history and love,
only love dares to free you, too, whole, see?

Dear ones, stop wrecking thru windows,
the little ones, innocent and defenseless
against ravages only you can satisfy
when you bow the knee to love…do it now.

photo by j. ruth kelly, all rights reserved

Sol/Sunna

Starting the process for filing for absolute divorce today and we’re both seeing it as time, no ripples or obstructions. I’ve been appreciating runes of late and got Sowelu for today’s big decision. Suffice to say the sun and the goddess Sol inhabit much of the meaning in that particular rune. So, the image I got AI to come up with for how I’m feeling is shared here along with my commentary about divorce and relationships and love.

In short, it’s clear to me that the final decree means everything and sets everyone free so the best iterations of agency, prosperity and love beyond the milestone can grow in each life. Relationships don’t always do what you think they’ll do, just to be simplistic in my assessment. Love changes and the love I had for the husband of my youth is now the love I feel for the co-parent and brother I know and appreciate. We’re grateful for and to each other on a lot of levels especially given our commitment to be under the same roof long enough to be there for the needs of our precious, complicated and beautiful, neurofantastic children. And love itself…it defies all the rational, ideological and practical notions, sustains and sometimes crashes lives into new manifestations of being human. Love transports people across space and time, emboldening, encouraging, embiggening and empowering life to thrive, create and renew purpose. I would not be where I am or who I am at this point on my path had love not turned me upside down, inside out and spun me completely, while also constantly nurturing my soul in the various beautiful forms and iterations love embodies.

There’s not much of a safety net that I can actually see in my life beyond this point besides the ongoing kindness in the bond with my beloved family, the amazing family of my soul, precious friends and the father of my children. I’ve decided that is more than sufficient. Vastly so.

Onward…

Dance

A rhythm hums and jives
beneath the fear,
the rage, the tears, desires,
grief, multiple stress fires,
under all the dross a drumbeat
defies loss, gains,
and suggestions of inadequacy.

But first: feel, wail, stomp,
tell the story yet another time,
grind your teeth, your hips,
your angst and every fucking fit.

Don’t stop there, let your face display
the rage, the sorrow,
the joy, the lip-curling bliss
and the sweetest ecstasies.

Let it all roll through,
tips of toes to top of head
and everything, everywhere
in-between… roll up, roll down
a spine afire, not finished
with living, not done giving, filling,
jumping, gyrating this being human.

Don’t let disaster freeze your body
for fear of losing sight
of the decimated, losing the fight
for a kinder humanity ’cause grief and rage
clamor loudest.

Run to the pleasure,
the places sweet and tender,
and howl ‘til animal you births
a truer you, resilient, feet moving,
hips swaying, shimmying flow,
plotting overthrows of fear, greed,
and oppression by a love refusing defeat

‘Cause your feet, yes, yours,
mine, theirs, crave the sweetest trance
dance delighting, satisfying, magnifying,
electrifying every fiber of our being one,
every last one of us…

photo by j. ruth kelly, all rights reserved

“Have you also learned that secret from the river; that there is no such thing as time? That the river is everywhere at the same time, at the source and at the mouth, at the waterfall, at the ferry, at the current, in the ocean and in the mountains, everywhere and that the present only exists for it, not the shadow of the past nor the shadow of the future?” Herman Hesse

The Silver Cup

Listening to America’s “Lonely People”, I remember hearing this song when we would sneak radio time in my sisters’ room. “The world”, forbidden and made sweeter by the alleged taboo of wicked rock music, felt so far away.

I imagine looking back over my life and finding many forbiddens bidding me come out and play.  Stray and sneak away outside the gate. Songs and goings on whispered outside my world, bidding me run fast from the realm of religious zombies and their kool aid.

How appropriate the line: Don’t give up until you drink from the silver cup. Even fundies can be saved, y’all.

I eventually ran. I’m so glad I ran.

Today, sitting with the melody and the impression, it strikes me how life/humanity/freedom pulled at me even then, a sort of promise of days to come. Certainly, the times have included some loneliness. But the final impression filtering into my awareness as I see myself, ear up against the little radio, grinning while “Lonely People” greets me on this side of things and leaves me, not lonely, but deep in my sense of inclusion. I feel myself as a voice among millions, crying out for peace.

I ache daily. Hostages, cobalt mines, “terrorists” and refugee camps in danger as I brew one steaming cup in my world of immense wealth however financially limited. I hate, I loathe the unfairness. The inequity. There is no good reason for what has been happening in Palestine for decades. Not one, not a single good reason.

And truly, Zionism triggers my fundie warning system. My newsfeed is full of Zionism’s fallout, bodies torn. So, I run to music, to birds, to working with my hands. There’s no way to engage that belief system, to pry it open and let the light in, set minds free. And yet, I wish. I know well the truth that no one can know until, well, until they know. And as a fundie, no amount of shame or ranting would’ve brought me out of that darkness. Only love, love and life breaking me open.

So, enough with fundies, and please know that I know that not all Zionists feel the same way about things unfolding in Palestine. People are complicated, but what’s happening to Palestine is quite straightforward: genocide. The purpose of the trigger, the purpose I make of it, is one of reaching out to life as I am now. Today. I’m not “chosen” anymore. The sea of humanity may well engulf me, wipe me from all memory eventually. And that is a beautiful thing, to be in the flow of being human amongst humans, flowing towards the next expression of love.

And as I flow, some things remain. I still pray. I pray to the love that was, is and is yet to be. I pray to the love within me, the love within every soul. Let our longings grow, our clamoring souls shout us all towards deeper truths and a love that refuses oppression of any and every person on our planet. May our *chosen* values embrace everyone, and our holiest lands spread far and around and through, to our precious one and only earth.

All the Light

We cannot see. Anthony Doerr’s six potent words float up to the surface when pondering expression here. What do you say on a blog/website with an activity level of almost nil these days? Where to begin and who will even read/listen?

2023 consisted of a number of challenges, not the least of which was the work on my Etsy shop. Besides that, being present for landmark, wonderful moments with my children while mourning the loss of one of our tribe, mentioned earlier in 2023, blurs behind me. Everything feels out of focus.

So much muddied over, trampled in the dust of racism, ethnic annihilation and corruption. Is there light to be seen? Whatever meaning some may have taken from the book/movie, All the Light We Cannot See, I can point to human resilience as an echo in the back of my mind. It lingers. And yet all the light we can see feels eclipsed by genocide and by the attack on 10/7/23 that triggered a landslide of public outcry. All over the world. First the protest and anguish of the initial carnage, and then the inevitable spotlight on Gaza, on Palestinians. How could we not see what we’ve known unfolds for Gazans decade after decade? And then the explosion of gaslighting. It turns out some folks willfully refuse the complexity possible in people’s perceptions of events. I can condemn the slaughter of 10/7 while simultaneously protesting the ongoing slaughter of innocent civilians while holding my breath for the release of hostages on both sides. Most especially, yes, I’m going there, those hostages held by Israel long before 10/7. There is no innocence in Israel’s history as far as I can see. None in the history here in the United States. Perhaps none anywhere.

I had quit yelling about Palestine somewhere between the end of Obama’s presidency and the onslaught of tsunamic shifts in my personal world. It wasn’t a lack of concern, but all my passion focused on struggles for one of my children’s well-being, and at times it felt, their very life. A pandemic tosses around in the mix of memories, isolation, fears. The 2nd Pfizer jab laid me flat for 18 months and here I emerge into a world I barely recognize.

The madness roiling across the global landscape dares me to cherish what I can see, what I experience as sanity and coherence. Meaning. My daughter is expecting her first child…new life gestating, kicking around in the womb of a beautiful person. I can’t type those words without tears, our wonderful good fortune both beautiful and a direct contrast to so much loss, and all while highlighting how precious it all is. The whole world should fare as well as my children and my children’s children. Everyone deserves peace, autonomy, wellness, shelter, freedom from the greed and unchecked power of the corrupt. But not everyone finds such. I can hold these truths simultaneously. But they feel especially heavy today.

Meaning morphs itself, gestating vision, birthing mission. What am I about now? Love is still the only point, isn’t it? It is, but why can’t love feed the hungry, end wars. Perhaps the question is, why do we allow greed and corruption to blockade the works of love, humanitarian relief? Why are all the wrong people holding all the power and what in love’s name can we do about it?

Maybe all we can do consists of the stuff we can’t yet see. I look at my youngest’s earrings adorning both ears. They’re gorgeous understated simplicity. Gold. I wore them in my 20s, before the life and light of one Evan. Suicidal ideation held a lot of sway back then for me. So many wounds to heal and denial to shed and Jesus dogged my every footfall, stalking my sanity. I had no clue what my future held and how much meaning it would infuse into my life and how much darkness it would dispel even as far back into my history as my 20s. My nonbinary youngest who graced our world the same week of 9/11 stands a beautiful 6 feet 3 inches above all I see. I look at those earrings these days and, call me crazy, but it feels like redemption to know they went from a fundie’s failing moments to the ears of a person whose childhood looked nothing like mine. Not that they didn’t struggle (!). But…their life, their siblings’ lives, the life gestating…light. They were there back when I wanted to die. They weren’t physically there, but they. were. there. The light I had yet to see.

I’m finding my mission to be one of reclaiming faith. Faith, not in a religion’s deity, but in how love can shape a life and how persistence and commitment carry that meaning, love meaning, forward into new eras. It’s not that I lost my faith as much as my life changed so dramatically, I’ve been disoriented, shocked, groping about in, yes, darkness, trying to find what remains. Love remains though it doesn’t always look or feel like it. Everything about being/doing/gestating love was immediate and real when my kids all lived under my roof, relying on me as mama. And while I worked hard to not let that be my only outlet and focus, it held so much of me. When the nest empties, everything feels foreign. Who is this person now? Toss in some apocalyptic goings on, challenging times and it’s easy to feel lost. So many struggles are boiling over all over the world. Masks ripped off some powerful faces, revealing gross darkness. A nation’s decline, a country’s struggles, our standing in the world literally affects us, each one. And ours isn’t the only nation wobbling, is it? I would not have predicted one of the most despairing situations I would contend with in my 50s would be the state of our nation and what we’re supporting with our tax dollars. But here I am and here we are stumbling around, grasping at what feels like endless darkness.

Democracy is literally hanging in the balance here in the U.S. and Biden’s total silence on the value of Gazan life nuked my respect for his accomplishments. I may have to vote for him regardless. I would rather stand in front of him and scream at him, literally scream. How could you abandon all that matters when you’re the president following on the heels of Trump and all his hellions? How could you be such a grotesque caricature of integrity at this point in the game? How could you be so obvious in your racism? How can you live with these war crimes? WHERE IS YOUR LIGHT?

Just to persist requires a faith not easily held these days. Gazans prove the fact that to exist, just to exist, is a rebellion of love itself in the face of so much devastation, corruption and betrayal. Just as a people whose lives hung by a thread, crammed into railcars heading for the deepest darkness, were breathing all our value with each breath, a revolt against the coming loss, much hangs in the balance now. We owe it to them to stop the madness growing more dark each day in the Middle East. The only way most of us can do that is to keep screaming, keep protesting, keep calling it what it is.

We owe it to the lives to come and to the light they’ll be.

J. Ruth Kelly, 2024, All Rights Reserved (Digital Media)

Chronic Illness Support

In my efforts to regain a baseline with MECFS, I’ve witnessed the ongoing carnage visited on the newcomers. Long Covid sufferers remain flummoxed by the landscape of medical neglect. Three decades into it myself, I’ve found it challenging to witness their outrage. I sporadically visit Twitter now for that very reason. I’m at once upset for their plight and gobsmacked by the shock they’re already experiencing over the length of time they’ve been suffering. “It’s been 18 months now! And no help!” I genuinely get it and care and feel those feelings right alongside a sort of astonishment tinged with frustration. Deep frustration. 30 years here. And there are folks who’ve been at it longer than I have.

It’s easy to forget that people actually still look up to certain medical and science institutions. They’re experiencing the long journey of alienation and awakening to the fact that corruption exists across all human institutions. They’re in shock and still expend precious energy venting. Greed, apathy and bias underlie the mechanisms influencing who gets funding and how much for researching various diseases and syndromes. Knowing that for decades now, I wrestle with indifference and a cold regard for the system. Juxtapose that against newcomers ranting and it rattles my stasis, jarring me back into dances with rage…rage at the system, rage at the odds that shite on my health, rage that some people approach MECFS as psychogenetic, rage that people actually believe they have control over whether or not they are sidelined by disease. Yes, you can eat your way to heart disease and diabetes. But no one with MECFS or other such chronic illnesses ate their way to their conditions. And many in our number thrived in great health pre-disease, on paths no one would associate with eventual disease. Yet here we are tossing out disclaimers no one should feel compelled to present, proof of the randomness of some of life’s harsher lotteries.

Suffice to say, post viral illness is very real. 30 years into it, I can acknowledge I’ve had it easier than folks with moderate to severe MECFS. But no healthy person would want the mild to moderate version. Along the way, the ones who get it paint a gorgeous map of the terrain, the territory known as chronic illness support. Family members and caring friends who recognize disease onset for the real and debilitating force it is distinguish themselves as a minority. Most people run to the hills, whispering mantras of toxic positivity, shoring up their fears with ideas that those who are struck down by disease must’ve done something to cause it. So, they must surely be able to prevent it in their own lives. Run, run, run. Sometimes I fault them. Often I don’t. I know what it’s like to think you have all the answers. I know why those delusions are so rampant. Life can be very scary.

My sister, Bamborough, deserves a lot of credit. She’s unwaveringly stood by me, not doubting the authenticity of MECFS. When looking over the text in the cards I’m listing in my shop, she stands out in my mind as the inspiration for their veracity and comfort. She embodies what everyone with chronic illness longs to experience in support. And she’s not alone. The father of my children, my children and friends (few they be) all provide the level of physical and emotional support every disabled person deserves. I am one lucky gal in that respect.

So, in response to the rattling of my cage by newcomers to the chronic illness population, these cards spilled their truths. The psychological needs of the chronically gaslit disabled languish, mostly ignored. And the capacity to be a support isn’t easily nurtured in our ableist automatonic culture. In recognition of these needs, my chronic illness support listings on Etsy are gradually increasing. Shown below are a couple renditions of the cards available (in a set of 6) for purchase and download. If you click on either image, you’ll be taken to my shop, Digital SoulSpeak. These cards are what I would’ve loved to receive at the beginning of my long journey with MECFS. They represent the level of affirmation I experience from those to whom I’m most connected. And in celebration of their love-in-action potency, I’m only charging $1.43 for most of these sets. 1 = I, 4 = Love, 3 = You. I love you, the person who wants to learn how to be there for the invisible disabled in their lives. I love you, the people ranting at the apathy as they wonder whether or not to hope. I love you, folks who recognize when you don’t have your health, you still have who you are and how you face life.

2023 So Far…

How do I convey 6 months of epic challenge on many fronts, what has been going on?

Deep breaths, self-love and a lot of room for grieving.
Tense, gaining more awareness of the person I’m becoming.
Settled into the truth that my life belongs to me (as a former fundie, this is crucial).

But overall, I find myself defining this year as exactly that: definitive.

Someone absolutely, poignantly and beautifully precious to me and to my immediate family died suddenly.

She lived on borrowed time, but nothing prepares you. I’ve been unable to write any kind of memorial or much of anything at all. Instead I’ve either actively allowed the grief or ballistically refused any emotions associated with the grief. It turns out there’s only so much active and outward grieving a body can take within a certain timeframe.

So I’m finding the year punctuated by a few pauses. Particularly after the loss, pause/crash prevailed even if it looked like I was functioning. And when I’m not paused, I live in a way that feels like a tribute not only to the preciousness of my own life, but especially to all that Sarah couldn’t participate in for long, if at all. Just typing that little bit conjures tears. But I am seldom allowing much of their spill. It’s more about one step, then the next.

And along the way, the many newsworthy goings on hammer away at peace if you allow it. Need I state the obvious about our nation and the world? No. We all get it. But today, most of us awakened to the ongoing progress of holding the former president accountable. Fingers crossed for an actual measure of accountability and justice.

Besides all of that, I’m working even harder on what I think about and how I think while remaining aware of the energy I’m brewing. The aim is to cultivate everything that imparts creativity within myself and my world here. And I find the work of cultivation mostly to be about love and acceptance. Love informing the tasks at hand as I create and work to manifest a measure of financial abundance. “Manifest” is only used in that I acknowledge my attitudes and beliefs can either serve me or sabotage me. I acknowledge there have been times when it seemed like the universe brought me what I focused on receiving. There’s a bit of that sort of manifestation awareness at work, too. But the tricky, potentially upsetting bit rattles around reminding me that our main source of income is gone for now, daring me to indulge in fear, desperation.

Mostly the path has been massively stressful unless I insist my thoughts and actions along lines of resilience, faith and strength. And so, that is where I reside as much as possible. This insistence encompasses the ongoing work towards now keeping and improving my baseline of activity and rest. As a person with MECFS, the baseline can be lost and never retrieved depending on the circumstances. So far, retrieval has always eventually occurred for me. I’ve been very fortunate. Once a baseline is established, it’s wisest to maintain it for a period of 3 to 6 months (or longer should the MECFS experience be especially risk saturated). Beyond that, the path unfolds with gradually adding on new activities and then following those additions with maintenance months or years. It’s a tedious work wherein you seek to hold to a faith in your body’s ability to recover while recognizing MECFS can put you in the spin cycle out of nowhere. Maintaining a non-traumatized relationship to your health both challenges and galls simultaneously. So, insisting thoughts of resilience, faith and strength, saturating myself in love and patience bolsters and affirms as I work and play towards hopefully broader fields of living.

I would say that I can’t believe I’ve not posted since the holidays. But then I look at the trail behind me, and it makes plenty of sense. Throughout these challenges, the focus on Digital SoulSpeak continues, also experiencing pauses along the way. That I can even attempt an Etsy shop reveals how my world enables me, a person with MECFS, to focus on projects most folks with this illness can’t even remotely consider. I’m daily aware of the sheer luck and privilege at play in my life. My gratitude flourishes every time I recognize those bonuses as does a longing for everyone to experience the same. That’s not to say this has been easy. I’ve channeled the strength I’ve gained towards the shop and have had to rely on others for daily basics most take for granted. I would have visited my daughter when she noted how long it’s been since I’ve made the trip to see her, but now it’s just not possible. And though my visits have encompassed previously understood days of rest once I arrive at my destination, my energy needs to go towards creating and managing revenue streams. The risk is too high at this point.

So, it’s no surprise that the world of the ignored and underserved chronically ill remains uppermost in my thoughts. As I develop printables for Digital SoulSpeak, my aim is to shed light on that same world. In the meantime, my hope is to begin a website for the purposes of sharing and selling those products (and others) as I’m able. For now, my blog here should suffice as a platform for sharing the shop’s progress.

And that is it, in a rather large nutshell, the past 6 months.

Onward…

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.