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. And while you’re at it, seize the opportunity to consciously uncouple as you go about your days. It will be important to not reside in the angst of being trapped though you will certainly need the valid times of expressing it as needed. Just ask yourself how much energy you’re giving to the truths you’ve embraced about your divorce. Seek to live more and more in the now and in those truths that impart grace, peace and acceptance as you hold to a future awaiting you.

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

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.

The Peonies Reaching

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,
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.

Photo by J. Ruth Kelly, 2015, All Rights Reserved
Photo by J. Ruth Kelly, 2015, All Rights Reserved

Photo by J. Ruth Kelly, 2015, All Rights Reserved
Photo by J. Ruth Kelly, 2015, All Rights Reserved

Honesty and Loss

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. “

Found here.

silence stills

stripping life fells me
white silence stills sweet movement
’til the blooming sings

j. ruth kelly, 2015, all rights reserved
j. ruth kelly, 2015, all rights reserved

(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.)

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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