Divorce (And ME/CFS)

Finalized in 2025, but there could be confusion…

My blog has been around for ages now and throughout postings folks will encounter my mentioning of my “ex” and of being divorced. I did not officially divorce until 2025, but in my heart and mind, we were divorced since our marriage ended after years of heartache. We did separate for years. Then the economy being what it was and still is, and my battle with ME/CFS, along with the needs of our three children converged as the most defining considerations. After reflecting on what outcomes we needed to nurture, we realized we needed to move back under the same roof in order to launch our children successfully. We literally were unable to legally divorce until 2025, but we gave each other room to pursue other relationships should the opportunities arise.

When we separated, we both felt confident my illness would still give me room to work and move us along to a finalized divorce before too long. However, confidence does not cure chronic illness and my health took a nose-dive the likes of which cornered me into working from the home and limited the time I could invest even in working from the home. I went through the cycles all ME/CFS folk go through where I would establish a fairly reliable baseline of possible activity and then life would pull the rug out from under me and leave me without a baseline, clinging to the couch for weeks or months at a stretch. Divorce became an elusive though sure outcome.

ME/CFS, and any chronic illness, catapults folks into challenging and nearly impossible life situations like the one I reference here where divorce is delayed for, gulp, two decades. If you have relatives or friends suffering serious chronic illness, be there for them. See them. Affirm their challenges and do what you can to help carry the burden. Know, too, that simply “going on disability” is not often an option and has been particularly challenging for ME/CFS folks since it has taken the medical community decades and decades to simply begin to acknowledge ME/CFS as a very real and non-psychogenetic illness. What does this mean? Note the words used here: Acknowledgement of legitimacy has begun and there are still far more uninformed physicians than informed. Medical neglect devastates many of the ME/CFS population and reaches into the legal work of seeking rightful financial relief. Those deciding whether or not ME/CFS is legit enough to warrant disability benefits are influenced by those who still suffer the terrible and often willful ignorance that leads to the abandonment of millions suffering with this real and debilitating disease. So, if the medical community still needs to catch up, the legal professionals deciding disability benefits will often not legitimize the need either. Then there’s the whole issue of whether or not spousal support from divorce will provide just enough financial support to block all possibility of receiving disability. The standards are galling. Navigating the possibilities exhausts and discourages the already weary, and is often weathered without help from friends or family. Be the exception if you’re able to be and roll up your sleeves in commitment to understand, bear witness and be with those sidelined by any chronic illness. The impact of ME/CFS is insidious and extensive, isolating and obstructing lives to the point of often complete alienation. Resolving divorce and income needs with such considerations is tricky work.

Meanwhile, should you be one of those who notes the strange and seeming inconsistency of my mentioning being divorced years and years ago, and then finally declaring our actual move to legally do so in 2025, you’ve likely scratched your head in confusion. You should understand why now. Life challenges can be surreal, and though divorce can take place often times before the actual legal act, legal marital dissolution is a powerful, needful spiritual and physical work. Don’t tread lightly into protracted separation. If you can avoid the limbo of not quite married/not quite divorced without wrecking the well-being and housing of those involved, do it. But plenty of people must continue to live under the same roof due to financial impossibilities. If you’re one of those unfortunately trapped, my heart is with you. Hang in there and get help in any way you’re able to do so.

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Earth Begging

In the woods somewhere
sweet swaying songs bear witness
to wounds deep, the worst sort
of gutting, how large the teeth,
and how far I’d seeped and seeped
and seeped completely down in seed
and in a gone-ing, a yawning crypt
held and holding eruptions,
creations’ secret reddest colors
for deeply hewn stutters fluttering
across a canvas as yet unknown
‘til my heart knew
and out I flew into one,
and one and one, (yet still One)
and yet still not knowing the known
and the hiding
from a creature lunging,
a bite’s longest reach
still bleeding,
but an ancient design called,
a bridge eternal healing,
deepest love promising,
then subsiding
‘til the singing resurrection,
a transformation from tomb
to tower to long desperate hours
within hours and hours blending
miracles wending, sending
every inch of me calling,
falling up and all over every spec,
dot, bindu, wreck not wrecking
as the beckoning out
of richest colors wrought whole
and healing a song
to raise the dead,
to know the unknowing
into love flowing
rivers, a heaven on earth begging…

photo/expression by j. ruth kelly, 2017, 2025, all rights reserved

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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.

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Blessed are…

“Blessed are the peacemakers, for they will be called…” the masculine children of divinity, depending on which version of the Bible you may read. And yet many are those of varying gender identifications who make peace by the way they live their lives. Some stay real with themselves about their growth processes, seeking out accountability and listening to those who can constructively school them on their need for change, their toxic exceptionalism and passive/aggressive denial of systemic oppression. Some simply live it out, opening their hearts and minds to the viewpoints and lives of those who will expand their minds to move beyond the status quo, the status quo that lulls us all to sleep when our wakefulness is most needed. We are a many-varied and colorful tribe of humans hoping towards fulfillment on different levels as we struggle to recover from the oppressive backlash of centuries of authoritarianism and the resulting mindset. Some of us seek our recovery by means conducive to capturing truth, fostering freedom and encouraging growth and prosperity for everyone as we confront our demons, the darkness we all wrestle when egos clash and righteous rage collides with denial and judgement. And we wonder, “is it righteous, really?”. Apparently, according to the wise ones, we are all acting out in the wake of trauma. Some of us embody the traumatizers, and some of us war against them, but we all began in the oppressive authoritarianism that ultimately seeks to destroy soul. No one with even just a modicum of awareness will deny that abusers have been abused and neither will they deny that some who’ve been abused manage to avoid the abuser’s program through hard, painfully aware work.

The problem I have with identifying us all as victims of trauma is that such an identification could be seen as a uniting truth when there are those of the grand us who are not wanting actual unity or truth. (Truth like, love is what we do and not simply what we feel. And truth like, we’re all valuable, precious human beings. Not “truth” like, there is one God and one way and those who don’t believe will burn. Not “truth” like, we say so and so it is so.) So, sure, we’re all victims of trauma, participants in reactions against the power-over model of authority. But we’re not all growing and we’re not all seeking accountability, and on the other side of it all, we’re not all perpetuating violent and destructive acts that divide us. These distinctions deserve regard because they distinguish between those who seek to empower others and those who seek power over others, even if only vicariously.

While it’s likely true that those who are openly seeking dominion over others are victims of trauma, my experience in moving from a place of forgiveness and understanding with this slice of the population has only netted me betrayal, slander, loss, isolation and more trauma. I literally unknowingly signed up, in the name of forgiveness, unity and hope, for another round of soul-bruising loss. I thought my faith in love would prevail. It did not. I’ve learned that you can’t afford to smile and approach abused abusers with the assumption they want to actually be anything other than what they are. You can’t project your own hope for a truly noble, truly valuable, truly life-affirming legacy onto those who are “in the same boat” with you. It’s just not that simple. It’s like inviting Leviathan to tea and hoping the beast won’t be a beast. Sure, we all came from the same sea but some of us are walking on two legs and hoping to not regress to more beastly behavior while others of us are glorifying the beast by way of denial-based, narrative-skewing belief systems. The perversion of truth and rationality is unprecedented. Shift blame, redirect focus and make the victim pay. But hey, we’re all in this together? As much as we may technically be in this together, trauma bonds as they are, we are at least as much not in this together in unity, and we are not going to experience true unity with each other when anyone in the boat is eagerly perpetuating the power-over authoritarian model of “community”. The best we can do is sit on the other side of the boat and pray that our work to end generational carnage actually takes while hoping those on the other side finally wake up and join us in the work for emancipation from oppression.

And writers and historians like Rebecca Solnit help me solidify and give voice to what I see and feel during this epic time of both loss and hopeful growth here in the US. Solnit’s following expression fills up the gaps made real by a confusion of intentions on a boat adrift in the wild sea of meaning.

“The middle ground is not halfway between Nazis and antiracists. The reasonable position is not a compromise between rapists and feminists, slaveowners and abolitionists, Natives and General Crook. The truth is not midway between the liar and the truthteller. That has to be a factor in all those calls for reaching out and unity. The murderer and his intended victim don’t have to agree on what’s right. The people who were harmed don’t have to reach out to those who did the harming. The people who told the truth don’t need to make liars feel better about themselves or what they said. Those who were targeted by this war don’t have to do all the peacemaking. If reaching out and finding unity is good, the haters and liars can go find some olive branches and apologies and do the work to leave their will to destroy the rest of us behind. Then it begins. The party of hate never had a mandate; they lost the popular vote last time and this time; they may think of themselves as the real American and the gatekeepers but we don’t have to, and we don’t have to enter their gates or play by their rules. We don’t have to hate them either, but we don’t have to protect them from the consequences of their choices or sell out our principles for their comfort. When you stand on the ground of truth and justice, let others find their way to you. If you stand firm, many will in the end. Not everyone will; that does not change what truth and justice are.” Rebecca Solnit

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Prayer #5 (for the self-proclaimed reformed womanizers)

May you know the value you trivialize by believing any form of womanizing is worthwhile.

May you know your worth without first shooting up intellectualism,
riding the high so high and icy cold.

May you come home to the earth of acceptance, not the mind palace constructed
against itself and in that coming home awaken the warmth of uncloaked knowing.

May you take a massive nose-dive into the divine feminine grace eschewed
by your grandiosity, and as your face hits the dirt there,
may you experience an actual fullness,
the presence of true welcome unadorned by any methodology or presentation.

Let all that you claim to be break open,
the husk falling away to reveal what you’ve refused.

May you recognize your need, your deep, deep need for love,
especially the love you disdain and declare fiction,
and when you find it, may you finally know what you’re gonna do with it.

May you take a great rolling leap into the truth beyond your carefully constructed dogma
as your face melts away, shining your visage,
a sun of authenticity feasts and open-hearted screams.

May your dance of control, your Georgie Porgie role reverse itself and succumb
to the surrender you chase, as the skirts all fall down around your face naked.

May you find there the map drawn by the lines of your perpetual retreat
posing pursuit and finally begin the treasure seek as one not master,
not switch, not submissive, but one, just one you.

May your knowing strip you of the sign you hide behind
and dart back and forth from as you desperately evade true connection.

May you turn to grasp that bowl of Peanuts at the bar of life
and find you were the one both setting up the kickoff and aborting it in turn,
over and over again, so sure the spurn was not within you.

And finally, may you learn that in spite of posing, gaming, playing and hopscotch skipping
‘round the block another umpteenth time, your true essence managed to shine,
making revolution alongside the confusion, the obviousness of the game,
breaking at least one heart in ways never broken before,
and leaving a wake of pieces to gather on the floor of a soul
trying now not to hope you know the breadth of the misstep your reformation made.

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The Dance Remains

Oh, we sway as the day’s dance pauses in the hum of moon and sun
and some ancient knowing calls us to feast in the now,
in the everydayness of our unearthings.

We stretch and weep and shout, ousting stagnations,
blooming towards the sun as we turn for one more run.

And one more run becomes us
‘til the next sleeping awakens deeper, truer love being,
love showing truth in the face of the dark histories,
and in the aftermath of all that suggests futility
the dance remains,
but we are never the same.

J. Ruth Kelly, 2019, All Rights Reserved

 

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From The Fall

From here the view: a feast of greens and blues when my eyes lift up
awakened fresh agony dreams, rantings felt deep
down
down the deep a depth of knowing annihilates notions of anything true lost then
when my heart hoped in feasts, planting fields of my own vast stores
and
and the sky holds a heaven only known by the ground, the grit, mud muck mellowing us
for the plowing real obliteration, a song sowing creation for the just
but
but we first find out who loves beauty, who holds truth when backs hit walls
when you’re facing a courtroom full of lies, you find your real kin
in
in the aftermath, a wreckage sift reveals the ones who were there all along
singing your song in the night and wiping tears from the fall, unafraid.

Photo by J. Ruth Kelly, 2018, All Rights Reserved

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On Forgiveness

We used to dance and hug there on the dance floor
and through fields
and by rivers
and lakes
and

a dance made real by the body of our bond
the inevitable creation of souls in unity

and many, many times I fought hard
to ignore the hatchet thwhacking at
the legs, arms of our shared body

I forgave when the first arm hit the dance floor
I really did. I promise.

(and when you berated me for my lack of forgiveness
whenever I mentioned you were actually swinging the hatchet at we
I forgave that too but I can’t do that anymore)

And again, when a leg…
see, crutches can be worked into a dance of sorts
but you can be sure that dance is, well,
it’s a unique dance.

Even someone in a wheelchair can get it to move
and groove to a rhythm made real
by the arms that steer and well

so, when there are no arms, no limbs left
and no medics around to stem the spill
and stop the inevitable chilled corpse
from being exactly that
chilled corpse

there’s no dance, no matter how much you forgive
and there’s a bit of the ptsd response in the presence
of those who wield hatchets in the name of love

see, when you grow up in the presence of such
it takes a while to realize how often
those hatchets accompanied statements of “love”
and how often your own projection of your own love
distorted what was really going on

and you stand there, seeing the carnage
and the bits strewn about
as you read, listen, hear those here and there
waxing on about forgiveness
and how it is so important

and you want to take the bits and parts
the arms, the legs, the blood all over
everywhere
and just shove it in their faces, smear it on their expert cheeks
and ask them to take a huge bite out of the forgiveness cure

see if maybe they can dance with it.

Careful, the floor can get very
very slippery,
depending on who your shared body
comes from…

Don’t mind me. I just have this problem
with pretending
and forgiveness can be such a pill,
that great big high for filling up the holes.

But it doesn’t re-grow the body.
No.

No.
Look up. See the ceiling?
All it represents?
Run fast, run far.
Forgiveness is not the only
sustenance needed to keep a we alive
thriving, nourishing.

Sunshine, let the sun shine.

Love that refuses bullshit
is
more
important than that roof
you beg to keep over your head.
Let me be clear: Especially that roof.
Even and especially God(dess) doesn’t fit there.
Even and especially s/he will not be mocked
though the blood of Christ be tossed
all over the reaping.

Photo by J. Ruth Kelly, 2018, All Rights Reserved, Church Roof, Asheville, NC

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Blue Pieces

blue pieces array overhead
overhearing silence
where we meet, greet our losses
our only gain
beyond ancient rubble

why did I believe in the whole of you?
only pieces remain…

And the quiet imparting space
air
oxygen
for those tRuthbits not allowed

’til now…

 

j. ruth kelly, 2018, all rights reserved

 

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