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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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…

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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.

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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.

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