September 26, 2021
September 26, 2021
The Annus horribilis nears its final demise, and another tear traces its way down a weathered cheek. A mother misses her child. The bullwhip strikes the next blow, and a 24/7 mind re-runs the last 365. A mother’s heart never rests easy, the maternal mind replays, everything. The deep welts of self-flagellation burn white-hot, and the mother agonizes, over where and when she had failed. A mother, no matter how exceptional, will rarely never, feel adequate. The bullwhip is heavy, heaved high for the next exquisite, unforgiving lashing, but of a sudden, the mother recoils in revulsion as the mirror reflects her self-inflicted wounds. The child’s choices are their own. The bullwhip falls from her hand, shatters the flawed belief that she had any control over, and little to no contribution, in what has transpired, and a mother comes to the stunning revelation that: she is but flogging the rotting flesh of a long dead horse. Rest in scarred and jagged equine pieces, A mother must find joy! ~Marcela, December 31, 2020: looking back to move forward. Writing: All Rights Reserved Image: Google Search 'Palomino'
The diamonds did their water-dance,
A salty sailor slept.
Pondering life’s happenstance,
Quietly, she wept.
Wept for all the years she squandered,
Living someone else’s dream,
For all the years she wandered,
In the box’s maze of schemes.
Moon-shine lit the captain’s bunk,
A salty sailor slept.
On liquid light rays thinking-drunk,
Quietly, she wept.
Wept for so much love and fielty,
Bestowed upon folks unworthy,
For trusts recompensed with cruelty,
They wrung her dry like scurvy.
The stars winked and dimmed and sparkled,
A salty sailor slept.
To milky way-days thoughts harkened,
Quietly, she wept.
Wept for the quirky wild-child,
She knows is her inner world,
For that curiously clever bright-eyed,
That precocious little girl.
The wind sang aloud its wind-songs,
A salty sailor slept.
The cool breeze assuaged her done-wrongs,
Quietly, she wept.
Wept not with remorse or worry,
For life’s folly, yours, theirs, mine and ours,
For her twisting-turning story,
The racing pace of hours.
The Diamonds did their water dance,
Moon-shine lit the captain’s bunk,
She was awestruck by her choice, perchance
to heave overboard life’s junk.
The stars winked and dimmed and sparkled,
The wind sang aloud its songs,
She wept the tears of chains unshackled,
She slept the sleep of crones.
~M.Y.M.: new(ish) in old(er) age.
Photos and Poetry: All Rights Reserved
While we waited, with bated breath, for a return to our ‘normal,’ she breathed a heavy sigh, of relief. While we stepped in, she stepped out, and we saw our impact on her, more clearly. While she regenerated from, our relentless destruction, we planned for, next. We will either learn, to respect her, or we will continue, to destroy her. Have we not learned, yet, that to destroy her, is to destroy, ourselves? So step in with me, for just a while longer, and think about how, you do, next. ~Marcela: letting her breathe, so that you and I can continue to do so. May 03, 2020
You may or may not know that my body has been invaded by the Triple B threat of Borrelia (1) Babesia (2) and Bartonella (3). You may or may not care. You may or may not understand how insidious they are, the myriad myths (4) attached to them, the damages they cause, the havocs they wreak on every.single.living cell in the human body, every.single.life-sustaining.system and organ (5), or the dignity-affronting disdain, with which people like me, are (mis)treated.
People like me who were either mis- or un-diagnosed, or simply dis-regarded by so-called professionals in the sick-care system, and Joe and Jane ‘normal,’ alike. People like me for whom current mainstream and/or first lines of treatment are not only ineffective, but more often than not, make things worse, because the bugs are skilled adapters, persisters, and have the capacity to morph into different forms, to hide, in their ‘host,’ in this case, me. People like me who have concrete proof to present (e.g. MRI, ECG and other test results), but are repeatedly told that things like the lesions in our brains, the heart issues and so on and so on, are unrelated random, symptoms. People like me whose bodies are under siege by ever-growing armies of bacteria and/or malaria-like blood parasites. People like me who are categorically dismissed, left to our own devices, our own financial and other resources, with waning physical energies and often severely challenged cognitive capacities (because don’t forget, there is a bacterial and/or parasitic battle for territory, going on in our bodies/brains). People like me, are left to figure things out, or sadly, to just go away because even trying to talk about it anymore, with anyone, anyone at all, is a real and present trauma, and it becomes increasingly difficult ‘to deal,’ in all aspects of human functioning.
I should have pursued a PhD in tick-borne illnesses instead of Social Work and Counselling Psych., oh wait, I have! I just don’t get the piece of paper or letters behind my name for my time, money and troubles, but I digress, how odd… I may or may not care anymore about what anyone in the above noted groups think/believe/judge, about any of it. Stop, revise: I aspire, to get to the point when I am no longer vulnerable, susceptible to the derision noted previously, and the despondence it creates inside me, every.single.day.
What I do care about, is staying on my feet well enough to facilitate the continuing, perhaps lifelong battle, that this is; while maintaining some semblance of balance between sickness, and a desire for so much more out of the rest of my life, than that which is currently my reality.
The most recent manifestation and issue directly related to this scourge for me, is one not unknown in the Lyme & Co. trenches, and targets many whose bodies are developing (secondary to treatment), potentially life threatening filtration organ and detox (e.g. lymph drainage) system failures.
Reader’s Digest: We need to keep killing the bugs to stay alive because the havocs they wreak when left unchecked = extreme suffering and eventually a long and painful death, but; killing them creates endotoxin die-off which the body increasingly struggles to process, detox, eliminate. The kidneys, liver, lymph drainage and other filtration systems, already taxed to the max by the bugs, begin to malfunction and eventually fail.
This then, has been my predicament since November, when I had to stop all pharmaceutical, and most herbals that successfully kill the bugs, because all of my above noted drainage and filtration systems began to fail.
Being the proactive human I am, despite, stop; revise: because of my current and now prolonged battle, I have consulted with those in the know, done my research, and practice all manner of time-consuming, money-munching practices, protocols and procedures, in an effort to support my body eliminate the bad stuff; and all of that, with insultingly insufficient results. So in all my spare time, please read the intended sarcasm into that comment, I went back to my research drawing-board, consulted with previously mentioned ‘in the knows,’ and learned that many folks on this end of my precariously tilting ship, have had good success supporting the failing filtration and detox systems, with the use of Infrared Saunas.
Thus began a process of meticulous research, in all that spare time, into the finer points and distinguishing features of this wooden hot-box technology, which are better and why, and what to avoid at all costs, received the final seal of approval from my ‘in the know’ docs and proceeded with a methodical hunt for my very own box, used of course. Because that’s how I prefer to roll, even if I had all the money in the world, because there’s more than enough perfectly good pre-loved ‘stuff,’ in the world and the consumption of anything, is an ethical imperative. But again, I digress…
It was a with a heavy heart that I quickly gleaned that the reality of what I need, far superseded anything attainable, given what it costs me in pharma and naturopathics alike, to barely stay on my feet, because none of it is covered. So much for working in the sick-care system… but really, am I surprised, or naïve? Maybe…
And so with an equally heavy heart, I reached out to two online sellers of a hot-boxes that met all of the requirements for my needs, gave them a bit of background, and inquired as to whether or not they would be willing to support a payment plan. One responded with a resounding and owie-producing fuck you, and the other stated that she has many folks ahead of me in queue. My heart grew yet heavier as I reached out to you(s), my eclectically eccentric, further and nearer flung village and tribe, and you made it happen for me.
The woman with many in a queue reached back, took her price down by $100, and she and her husband delivered the hot-box to my patio. The Sailor helped me put it together, and as I write this, I weep tears of gratitude for all of you. I have been sweating regularly for a while now and my liver and kidney counts went back to almost normal just prior to the other big C-bug we are all dealing with, and my lymph nodes are less inflamed and painful, but I hope to brave a lab this week for more conclusive testing.
Testing which will determine whether or not I can re-start a heavy-hitter bug-killer. I cannot restart the NUKER until the C-word bug is done with all of us, because the levels of alcohol and other chemicals in everything we use to stay safe at work and that I need to use while out in the community could literally kill me in conjunction with said NUKER, it is a complex protocol and requires a vigilance in terms of food and topical products that is absolutely undoable in the current state of life and affairs. But, I consulted with one of my brilliant docs, and we are looking at a lesser-used anti-biotic that crosses the blood/brain barrier, in conjunction with a couple of other anti-microbials which target different bugs in different systems, in an effort to get a handle of theses beasts again. This particular anti-biotic (Minocycline), is known to cause massive die-off (good) toxicity (very bad), so it is risky relative to my very susceptible liver and kidneys, but I am going to give it a shot.
FFW to today:
I could not be in this position without your help, the sauna, and a number of other add-ons/protocols have made a difference, and coincidentally, the sauna is not a bad thing to have around to help my body with the big C-bug, should I become infected.
Blood sweat and tears has taken on new meaning, and I thank you, from the bottom of my tired and literally broken (by bugs) heart. You are the same handful of people who always suited and showed up when I fund-raised for others in the past, the people who have worked hardest/longest/trudged the most, to have what they have, which in some cases, is very little, I know this to be true. Nothing, but nothing, has ever come easily to any of you. I know this to be true. The same, staunch in their support of me handful of people, that have been there, for a very long time, some, my entire life.
It did indeed, take this village*, to raise (up) from the trenches, this hurting and battle-weary child, and the child is grateful to you, so very, deeply, grateful. You personify the best of humanity and I am privileged, so much richer, for your respective parts in my life. I will not let you down. I will continue to wage this war. How can I not believe in myself, when you so fervently continue to do so? With more love than the word will ever do justice to,
April 05, 2020
*M.P., S.G., C.W., C.M-S., K & K, J.R., J.M., R.W., P.C.Y.
A book of Mormon or a lion’s head bowl your dirty old sneakers and a used camisole A camping potty and a broken TV world’s ugliest chair contest-winner and its mate, the settee A tall concrete tiki set or a big rusty clock and bald vroom-vroom tires for the wannabe jock A Loong Foong vintage cookie tin and a scuzzy old toilet or a decrepit old rocker but don’t sit lest you spoil it A pair of leather-like boots or a real-plastic dresser and some moldy old books from a dusty professor An inflatable hot tub and fake-rattan patio chairs or some lightly used razors includes gross chinny-chin-chin hairs Some creepy old doll parts or a bagful of ‘hemp’ seeds all ready to sow and 2 dozen duck eggs though not in a row A box of A & W Mugs and ‘a fake owl to scare birds’ or a disgusting old hamster cage opportunely pre-soiled, comes with used turds An ‘Old-antique’ horse lamp and a ‘dead’ cow rug or some grossly stained mattresses replete with bed bugs A giant Yahtzze set and miniature chairs made of wicker or a pre-cracked ‘antique’ mirror prices are firm, please do not dicker Cement garden pigeons and barbicide for dog groomers or 4 and 6 inch flex hoses for all the DIY boomers These are but some of the ‘treasures’ You want me to buy Steals of a Deal And (crap)Pies in the Sky Thank you but no deal, at the best of times I would pass, but now during COVID I’d like to kick your sad ass. So Fuck-the-Fuck-Off, which means stay-the-fuck-home re-use and re-cycle up-cycle that thing please stop being a chump or WHEN COVID is done with us take your shit to the dump! With all the love I have, ~Marcela: Asking, begging FB Marketplace and local buy/sell/trade groups everywhere, to take the example of Ladysmith BC, and PLEASE shut.it.down, for the duration! These are NOT essential services, but they ARE actively contributing to the problem! No amount of legal-ass-covering-guidelines are going to change the thoughtless actions of STUPID; the OTHER pandemic. April 04, 2020
As I rummage and ruminate, categorize and discard, too many items, and thoughts, long of little utility, to you or I, though stubbornly occupying space, in my physical and internal environments, I am thunderstruck! …with that which we pay lip-service to; as a matter of course, in our excessive, daily rabblings and babblings; but rarely to never, truly abide by… . And of a sudden, nothing matters! Nothing; …with the exception, of how we choose to utilize, This Moment. And of a sudden, in this temporarily, to the outside world obligation-less life, I find freedom. ________________________________________________________ With boundless love, ~Marcela: choosing to live well, in the midst of my own, and our collective, uncertainty. March 24, 2020.
There have been others since I came to live here, but you commanded and kept my attention, from the first time ever, that I saw your extraordinarily bright, red paint.
And since that moment, when you dwarfed everything around you and obligated me to see you, I have wanted to get closer, wanted to get a better view, and always wanted, always yearned, to see you again.
I needed to experience your power, relentlessly, and with great fervor. And for weeks now, I have been captivated by you, visually, psychologically, emotionally, and with irrevocable commitment.
And I have compulsively sought you out, with the diligence and precision of a skilled stalker, from every vantage point, in this hilly town.
For weeks now, each and every morning, I have clambered groggily up to the step-stool view in my sleeping chamber, because knowing you were there allowed me to face another day, and I have been awed by the turmoil you create, deep, so deep inside me.
For weeks now, each and every evening, no matter how fatigued, I bid you good night, because you give me some measure of consolation, succour, in my solace-less world.
You have represented all that is true about me, the contradictions, and I am as contentiously conflicted about you, as I am about most things.
Your intensity screamed to my own; and like the others in the bay, like me, you are a political and personal hot-potato, and I love you-I hate you, come here-go away, fuck-off, no! fuck-on!
And you present me with a familiar quandary: what is right for the world around me versus what I get, what I need, from you, from the world around me.
And so by direct extension, you have been a secret, conflicted indulgence, analogous for me, to beautiful footwear, but made in China by slaves and their enslaved children.
And I have viewed you with my naked eyes, and through binoculars, and I have captured you with my camera over and over again, from my step-stool view, from the highway coming home, from my excursions on the hilly trails, and from my perambulations about the town.
And this morning, when I opened the curtain to greet you, you knocked the breath right out of me, for the light had you glowing in shades of gold and pewter, and I was mesmerized, shaken to the core, by the beauty of you, and the light, the indescribable, iridescent light, and the way you played together, with, and in the sea.
And I remembered Barrett-Browning, and knew I will do well to concern myself with, fly toward the light, despite additional bruising of my oh-so broken wings.
And my despair collided head-on inside me with the memory of who I am, the shine and vibrancy used to describe me for decades by others, now hoarded away far too long, by me, recently, because: pain.
And I wonder; if like me, despite meticulous maintenance of mechanical parts and attention to aesthetic details, you may meet an undignified, rusted out, abandoned, demise?
But your light rouses me from the melancholy of this early morning reverie and while you are neither Sunflower nor Water Lily on a A Sunday Afternoon on the Island of La Grande Jatte, van Gogh, Monet, Seurat alike, would have been as awestruck by that light show, by your radiance, as I.
So it is little wonder that this evening, upon reaching the place on the highway, the place where I always spy you first, returning from my hated-reality, hot tears burned my cheeks with a vengeance that took me by surprise, but at the same time, not at all.
For I realized that you had left me, as I knew you would; suspected this very morning, that today might be that day, the day I find you gone.
And all that, in a painful morning stupor, while bedazzled, so very smitten, by your glow, your nod to me, to heed Browning’s wise words, to keep fluttering my wings, toward the light, toward my light.
And I am so very grateful, to me, for all the times I hunted you down, from yet another place and angle. I am richer for having enjoyed you, and you fueled, no, you ignited, new fantasies of leaving, to live my art, whenever my eyes, my heart, the core of me, met your steel girth, your vibrant and vivacious red coat.
And I never coveted you more than this morning, never appreciated you more, than in those parting moments, when you willfully, boastfully even, occupied that space, your space in the vast vast sea, wearing the gold,
of the Queen you are.
~Marcela: one skin, 58.7 years, life/version 19.9, and counting.
March 04, 2020
The stunningly beautiful, awe inspiringly humble, and magically talented Minju Kim, on Next in Fashion: "...my collection is inspired by Frida Kahlo, ...she never gave up." I must remember that for a thousand and one reasons, and for decades now, I too, am inspired by Frida Kahlo... and while that which ails me physically, is vastly polar in nature and circumstance, its ramifications, share everything in common, with that which ailed her... ...and I remember what she accomplished, who she was, not despite, but because of it. Just for this moment, I will channel Frida, and Minju. ~Marcela: Hanging on by Minju's thread.
My oppositional flailings to the expectation-less relationship you desired, have inadvertently weathered my person into a deepening of spirit, reminiscent of the sea-years etched upon your face dearest Sailor. With the persistence of waves on stone at the seashore, these flailings and failings have smoothed harmful rough edges, jagged bits of a younger, old me no longer useful to anyone. And I am grateful. Not despite, but because of, that which my net failed to capture. ~Marcela: version 57.9 despite myself. June 22, 2019
"Let there be no purpose in friendship save the deepening of the spirit. For love that seeks aught but the disclosure of its own mystery is not love but a net cast forth: and only the unprofitable is caught." -kahlil Gibran Interestingly enough, I deliberately cast a net a few years ago, and in so doing, despite my oppositional flailings against its very nature, the 'catch' quite inadvertently developed, through a love and friendship unlike any other I have known, into a profound deepening of my spirit, one not unlike what Mr. Gibran speaks of. ~M.Y.M. Kahlil Gibran quote from Google Search Poetry and Image: All Rights Reserved Marcela Mrnka, please share but do attribute. Thank you. ~M.
From: John R Sent: Friday, May 24, 2019 11:33 PMTo: Marcela Yvonne Subject: Re: Just wondering….
How are things at your end? I hope summer has arrived there. It has only been the last couple of days that it has warmed up here. Prague, Vienna, Zagreb, Ljubljana, Belgrad, Prishtina, Sarajevo all required sweater and jacket. Here in Mostar was hot yesterday. Just waiting for a bus to Budva in Montenegro right now. It seems all the train tracks were blown up in the war here in the 1990s… and have not been replaced. From Budva, it will be in to Albania then Greece…
So what has been turning your world upside down? Give me the Reader’s Digest version.. not just the headlines! I hope you are _________ blankety-blank-blank (because some things are just too precious to share).
From: Marcela Yvonne Sent: Friday, May 25, 2019 12:47 PM To: John R Subject: Not a quick story / Re: Just wondering….
Sailorman! I’m just relaxing in my new-ish, light-filled, bedroom (feels like a bit of a tree house :), sipping the Saturday morning/noon cuppa Joe, wondering what his Salty-ness is up to, where on earth his Sexy-assed-self is parked right about now, and then there you be, right in my lappy! The shit storm(s) is/are a big story… the Reader’s Digest is that I have Lyme disease. It got ugly. It’s what started all those bizarre symptoms in the winter, probably been hiding in my body for years (not uncommon at all), triggered by who-knows-what, the possibilities in my world specifically are endless… and because it’s me, and my never-straightforward life, I couldn’t just pick an easy disease, you know, one where you have symptoms, they test, they find it, they diagnose it, they treat it, you live or you die. No no no! I have to pick one that is as politically as it is medically contentious, argued/denied, yes full on denied, controversial, impossible in every way including (mis/un) diagnosis and no treatment works the same for everyone and where it and possible co-infections are at in their body. My (ex) GP literally said this: “I, and many of my colleagues, don’t believe in chronic Lyme disease.” Where the fuck do you go with that? We vaccinate pets and farm animals against it… but they don’t ‘believe’ in it? No seriously? Where the fuck does one go with that?
In any case, thank my own resourcefulness and my Ungods, I’ve had a really great Naturopath in my back pocket for years now (because the mainstream wasn’t doing anything useful for me years ago, either), and she has prescription rights if I decide to go the pharma route. She also has Lyme and even before I knew that, I have always trusted her, fully, unlike previously noted (the real quack) GP. No treatment for this beast is straightforward or simple and pharma-antibiotics are problematic for a thousand and one reasons specific to this/these bug(s) so, there is no quick and dirty fix. I’m taking all manner of things and it is actually working, at times making it worse/before better, but that’s how it works, and costing me buxx I don’t have to spare, but that’s how it works :) It turns out that many of the herbals and my own witches brew that I’ve been making/using for years to keep that annoying virus in my body at bay, also have antibiotic properties, antimicrobial (Lyme/Borrelia in its many incarnations is a bacteria), so quite inadvertently, I have been suppressing its havocs for some time. If I ate garbage food, didn’t exercise regularly and other bla bla, I likely would have been sick years ago. Sweat, elimination, in all its various forms, is one of the keys to getting this thing out, it likes to hide and morph, and in the words of said Naturopath, it is a marathon, not a sprint. Realistically, so is any other serious illness, including cancer and some of the other ones less controversial, in this moment, because they all were/are, at some point. This past week is the first time in many months that I have felt almost OK, it’s on the upswing, and I have so much more big-story on all of it, but that is almost enough of that.
I work really hard at not going down the various rabbit holes around it, it has been nothing short of traumatizing because of all the bullshit around it, never mind the seriously big, seriously scary manifestations and myriad crazy symptoms I was having, it impacts every.single.system in the human body, and is a transformer… between all that and the full on dismissal by previously noted (ex)GP, she just doesn’t know that bit yet, I have my reasons, it has been one of my life’s biggest hells, and we know I’ve seen a few… maybe more than reader’s digest, sorry/not sorry, it isn’t a quick thing in any regard, always prompts big questions from others, so I’ve just tried to pre-empt some of those, for your benefit, and mine.
Also, my world feels upside down cause my mama’s been diagnosed (finally) with Parkinson’s, and really, in her (translated) words, if we’re going to get that particular horribleness, one’s eighties is a much better time than for example one of my clients, our age, or younger. Medication has made a huge difference and she is also doing better than she has in a long long time. My SunnyBoyManchild was an inadvertent auditory-witness to the horrific murder of someone in the suite directly above him in his building, just a short time ago, so my most-loved humans and I have not had an easy time of it in recent weeks and months. Thanks for asking Sailorman, a lot, it means something.
On a better note, moving in here was a challenge (huge understatement) because of the above getting worse and worse, and really crappy space planning on the landfolks’s part, but it’s coming together, has also cost more money/energy than I have, and there is lots left to do, but I’m loving it now, have even had enough energy in the last week to explore, look for trails, spend a bit of time down at Transfer beach… found the marina, and fondly thought about the other one I know, the Lady Jezebel and her Sexy-assed man at the helm… I’m loving Ladysmith so much more than I thought I would, and 30 minutes max door-to-door for work is an absolute luxury. I love this new-ish job, cause if I have to work 5 days a week at this stage to barely make ends meet, that really needs to be the case, so it certainly helps in the grand scheme of things.
Summer/balmy spring comes once in a while, it is raining today, not a bad thing, the Duncan area is already mumbling ‘drought,’ and Alberta is already on fire… decent weather predicted for tomorrow, really hoping to get to the beach for an hour or two, and then a simple trail jaunt… it’s so lovely to have enough time left in work days/weekends because I’m not constantly trying to ‘get somewhere,’ or maintaining a ridiculous house and property. If Ima pay someone else’s mortgage, it needs to be like this. Summary: it’s getting good in the hood again SaltySailorman. Big big lessons in all shapes and sizes in all of it for me, and it has all forced a bit of a Marcela-mellowing that is challenging to articulate, but welcome, very welcome, for sure.
Your adventures sound absolutely grand, and I am not a bit jealous, I am full on fucking envious and marvel at how well you have worked this entire life thing out! If I can’t be doing it myself, I am happy to enjoy it in the form of your missives. I LOVED Mostar, that entire part of the world… I was heartbroken when I learned during that war that that most amazing bridge had been destroyed! I spent a month the summer of my 25th birthday in Dubrovnik and its surrounding areas with my mama and step-papa, that was before that particular war, it was stunning, just fucking stunning! Did you get to Plitvice? It’s Sunny’s dream, he is a water(fall) hound, nature nut, like the mama.
___________ blankety-blank-blank (because some things are simply too precious to share…). I’m looking at all these words and thinking oh dear, I’ve written a book, but that dear Sailorman, is what writers do. And I am nothing, if not that. Big brain fog and all. I hope your tribe is well, (almost)new-grand baby and all! Clearly, you are. Yay! Hugs back Sexy-assed SailorZeke, and smooches, and _________blankety-blank-blank, always…
Writing and Zeke/Marcela Photographs are mine, image of the Original Mostar Bridge located via Google Image Search:
This is NOT a sob story and it is just the beginning.
The more I learn about this thing, and trace back to what at first glance appeared to be unrelated ‘health issues’ over the last couple/three years, Hashimotos is just a single example out of many, the more I understand this ‘thing,’ and the angrier I get with my (ex)GP and the mainstream healthcare system.
I have had to become my own doctor in so many ways, and so much of my (and others) suffering could have been pre-empted, treatment could have been so much simpler had a few connections been made, that I have now made myself. There could be a thousand and one reasons I tested negative for Lyme, including the fact that it may well be different bacteria, with very similar, equally serious symptoms, and/or, how we test for Lyme remains inadequate at best, and negligently pathetic at worst, resulting in many (documented) false negatives. Whichever it is, I am well beyond ‘acute’ which is the most treatable phase of this beast, well beyond ‘chronic,’ into the third phase, which impacts every single part of my body, every single system.
Some days the only thing I can do is stand, because sitting is too painful… and that’s just the tip of the symptom iceberg… Game changer does not begin to describe it, this thing. In a pm conversation with my BFF, I likened it to addiction, in that it morphs, hides, changes, is resistant to treatment for all of those reasons, just as stigmatized, judged (but you don’t look sick… fuck you!), and mis-understood.
The mainstream healthcare system did fuck all to support me in that battle, why the fuck would I be so delusional as to think they will help me with this one! No seriously? Why? This is not a sob story, this is my reality, it is complex, brutal, and there is no quick fix. So if you find it overwhelming (imagine how I feel?), fuck the fuck off already, permanently. Don’t bother just unfollowing or snoozing, please, that is so fucking passive-aggressive that it seriously brings out the ‘violent’ in my hard-core anti-violence stance. Stupid as they generally are, some interwebs memes are at least accurate: “…if you can’t take me at my worst, you do not deserve me at my best…”
Crown in place, at the bottom of the sea floor, closely guarded by PinkFish and her compagnons silver fishes… Don: like my other favourite artist, Vincent, you lay the paint on thick, in layers, because real stories cannot be told in veneers and with thinly brushed, watery strokes, for the truth, rarely lies at the surface.. I love you, and you MySue. I would drown without both of you right now.
PinkFish – original art by Don Bruce, Terrace BC
Writing and Photographs: please share if so inclined but do refrain from plagiarizing and using photographs without permission. Thank you.
The truth is: There is no permanent affliction or injury physical; emotional or psychological, sustained in the day to day sport of human living. The truth is: There are only innings, periods, heats and quarters of battle, endurance, triumph or loss in this game called life. The Truth is: the ether or some mystical inhabitant of it keeps not, (y)our score of wins or losses, deserved and not you and I, solely, are umpire, referee, and judge. The truth is: There is no permanent affliction physical, emotional or psychological only Game Changers permanence and winning are a Lie. So play the game play it well, play it now. ~Marcela. May 03, 2019.
An intruder has taken up squatter’s rights in my body. Whether microbial, myco-toxic, fungal or parasitic (all four?) in nature, it is fucking me up but good: my hair is falling out, there are moments during which I feel like I'm going to have a seizure any minute, I can't feel my limbs half the time and the other half it feels like something is crawling around inside them, or biting me, from the inside out. My kidneys hurt all the time, my vision has taken a beating, it is blurry half the time, my eyes are pinned all the time, and I see floating spots every time I blink. I have a constant 'cold,' I am in physical pain all the time, it ‘travels,’ my ears ring most of the time, I sound like a crack whore, I have had a tooth (molar) removed because my (awesome) dentist and I thought maybe the numbness was because of that, way back in December, when things first started. That hole in my mouth severely impacts my ability to eat certain things and the way I talk. I talk for a living. I have been treated (to the tune of what is adding up to thousands of dollars) by my (awesome) naturopath for (potential) mold/mycotoxin illness and parasites, gotten rid of furniture I can’t afford to replace because potential mycotoxins, taken more (unpaid) time off work, lost too much income, to travel and see the most useless doctor on earth almost weekly for pretty much 5 months (here, have some anti-anxiety meds and/or pain killers… no, thank you anyway…), and everything I have/am experiencing points to Lyme, or some other bacterial/parasitic/fungal thing, but she does ‘not believe’ in that, ‘does not have time’ for 20 different things, symptoms ( but that’s how Lyme, and other less common microbes work in the human body) in one visit or 40, couldn’t be bothered to test for anything outside her limited box, and literally gets (intimidation) uppity when I mention anything I have talked about (including Lyme) with other health care professionals. The list of her endless negligence and tyranny toward me is so big and hurts so bad I can’t even go there. It is safe to say that other than pregnancy when they said I couldn’t, I have never hoped for a ‘positive’ test result from a healthcare professional in my life, until now. The walk-in doc I saw in Nanaimo last week gave me no useful news yesterday, and won’t take me on as a patient because he’s leaving that clinic anyway… but he did give me the name of another doc there, and I managed to get an appointment with her for next week. In keeping with the recurring theme in my life, none of this is straightforward and it might even go way back to something I may have picked up working at the hospital in Duncan about 3 years ago, remember the Hashimotos thyroid thing (?), and I will continue to work with my naturopath, who unlike the ex-GP, is not intimated by other perspectives, mainstream medicine or the folks in it, she believes they should all work in a complimentary and collaborative way. Yeah, me too, but it feels like that is so far away from what we have that it borders on wishful thinking and we all know how I feel about that shit. I am not giving up, while at the same time, working extraordinarily hard not to let my anger and hurt consume me, for it is not productive, harms me more, and attempting to regain some measure of life quality, while working full time (there is very little choice here) in a field and area of said field, which requires my full physical, mental and psychological acuity. I am out of energy, out money and out of credit, but I repeat, more to hear it myself than for your benefit, I am not giving up. She is a brutal fucking bitch at times, this game called life, and she is in a particularly bitch-slappy mood at this juncture. What she doesn’t know however, is that at least in this very moment, right here, right now, so am I. ~Marcela: Battling, unwell, wielding all power toward living, for survival is no longer an option I am inclined to entertain. The Score Illness: 5 (months, maybe years…) Marcela: 1 (tenous) GP: Useless but winning, because safely swathed, in God-like white coat, and unbeknownst to her, fired. PS: Please, oh please, spare me the ‘you got this,’ and any manner of ‘positive energy’ and other platitudes. And please, oh please, respect my beliefs by not, under any circumstances praying for my Atheistic-Realist soul, in the same way I don't atheist all over your posts/struggles/issues/triumphs... for the only defense I have left for this manner of un-helpfulness, is delete and block. No tackle left for bullshit, not a smidge. Comments the likes of ‘this sucks ass,’ are so much more meaningful, as are none at all, if positivity and prayer are all you know how to do to support someone in pain. Thanks. PPS: If I have to 'deal,' with whatever is eating me alive, I will do it wearing cherries and polka-spots...
Dear John (yeah I did that, again)! I write these words as nothing more, or less, than information. Know that, first and foremost. They change, complicate, nothing, or everything, as the case may be.
You, the man I have come to know and appreciate as ‘Your Sexy-Ass Saltiness,’ and your trusty (real)steel steed, Marty the Sexy-Ass vintage Mercedes,
embarked upon the first leg of your current adventure, some weeks ago now.
I met your recent text update with both pure, unadulterated pleasure, and not a bit of envy, but a great lump of it! When I read in your missive that with friends and family visited, and Marty safely stored in Manitoba, the real adventure part finally began, as you sat in a train station, awaiting your East bound train.
And my ripe imagination envisaged your chill, sexy-ass self, man of many names, many adventures and few words, doing exactly that, which pleases you most. For you are, that unlikeliest of souls, a true traveler, not, in your words, ‘a vacationer.’ I imagined you at that train station, smoke in hand, looking something like a cross between Hemmingway and Van Gogh (two of my historical heros), on a train station bench, outside… because smoke in hand… and then on the train, bumping along the tracks, living in that exact moment, eyes out the window. Perhaps you were thinking about the boarding of that freighter in Halifax, disembarking in Liverpool, and traipsing ‘cross many a country to this adventure’s ultimate goal, mother Russia, and her many parts unknown. But those thoughts never stray too far from that which is right in front of you, and I imagined you applying your vast knowledge of world histories to it, that which is right in front of you, right now, in the moment. For you are, among so many other things, a master of that art, and I have learned by observing you in moments we have shared. I have been paying attention.
To your words, but more importantly, to your actions, and always, to your quiet.
You are a skilled, gifted, even if inadvertent, instructor.
I have thought a great deal lately. I have thought of many things, including of those pertaining to your role in my world, not the least of which, is that you have already been, and will be, gone a long while. If my various and sundry lives have taught me anything, it is that game-changing shit happens, at the drop of a dime, often leaving us with little to no opportunity for communicating the important stuff, to those we are connected with. And so given some of the game-changers thrown at me, historically and in more recent times, I am compelled to articulate previously noted words, for I feel it is important that you know, this:
I appreciate your part in my life Sailorman Zeke. I care about you. The unintentional but most powerful tutelage of our dalliance, has been the source of more insight about myself, and what it is that I really want out of my remaining time here, than most things. And that right there, is a big-ass statement in and of itself, for it is not news that I have lived/led/survived/crashed in/resurrected, more lives, than most folks get, in just one skin.
In happening, quite intentionally, for we know I buy not, into vague and useless concepts like fate, but I digress, how odd… in the intentional happening across that which I believed not to be for me, you, your presence, your particular way of being, in the world, in relationship, and in my life specifically, I have experienced, and mostly enjoyed something that has evolved from (in your words following our first ‘date’), “pleasant enough,” to rude awakening, to something that I am challenged to describe adequately, but it is pleasing to me now, most pleasing indeed. This is important in my current world and incarnation of self and the life I am attempting to lead, while barely treading water. And perhaps more importantly than anything else, it is straightforward. It is transparent. It is uncomplicated. It is nothing more and nothing less, than what we have both agreed to, at any given moment in time. It has developed into a most satisfying surprise.
But you lead me astray yet again, in the best possible way, though astray none the less… so, to those words I have been compelled to scribe for weeks now: I believe, and I could be wrong, shockingly it has happened at least once before… I believe; that the word love is one you do not bandy about often, if at all. At this juncture, nor do I.
That said; I do harbour feelings of love for you Sailor. Interestingly, most refreshingly, they are nothing like anything I have experienced previously, they are so much more, and so much less, all at once.
More, because these feelings are grounded in a process, one which I have either not been provided here to fore, have not provided for myself, or perhaps even, could not ‘deal’ with in pasts further and more recent. The process I speak of is the space required to truly learn another. The space required not only to accept, but to appreciate those very traits, ways of being, I once found unacceptable in a sexual relationship.
More, because bereft of the traps of ownership and ex-pectations, we have afforded, each the other, and selves something only others who function this way, can know, can understand, can appreciate, can savour. More because these feelings I harbour for you are not based in fear of what I would miss without you, for I am secure in my person without any other. More, because they are based in genuine affection, respect for exactly who the other is, not that which we think they ought or desire them to be, or need them to be, to be OK with, to be OK in, our own skins.
More, because they are grounded in continuing curiosity, rather than the erroneous and arrogant trap of believing to fully ‘know,’ the other, any other, ever. More, because curiosity, in all manner of things pertaining to said dalliance and the world in general, historical and current, is what keeps us alive, truly alive, interesting, and interested, to and in self, and the other, any other, ever.
Less, so much less, in the most un-encumbering of ways, has become the ultimate more. Less, because my feelings for you are utterly bereft of, unweighted by, any semblance of clingy need. Less, because I (we) have few-to-no expectations about anything pertaining to ‘you-and-I,’ and so by direct extension, only curiosity remains, and like a full moon, it draws me in, it is enticing, always.
Less, because I feel no pressure to be anyone other than exactly who I am, at any given point in time, and I have not, even for a second, in the course of this thing I call our dalliance, wished you to be anyone, but exactly the person you are, at any given point in time. Not through the (now hilarious) miscommunications and literal ‘Dear John’ and ‘Dear M’ moments, moments of big (for me) heart ache. Not through the differences and varying life experiences informing our respective world-views, political positions, psychological and emotional places, and not through those moments when I questioned myself, because training, in previous romantic failures of proportions most epic, and (too) high prices, paid.
It has been shifting for me for a while, but the most noticeable, most profound change, came about for me last July, during that most memorable, for so many reasons, birthday voyage we shared.
The word love can be such a trap, and also not. I choose not. I choose to continue harbouring feelings of love for you Sailor, for however long, for however we choose, or not, to be connected. And I wanted you to know, because shit happens, and seemingly nothing, nothing at all, changes, complicates, everything.
So from this stark-raving Atheistic-realist of many names, to you, the quieter one of like-beliefs, but no less intensity, the sexy-ass renaissance man of few words, many names, and more real-life adventures than many a more famous traveller:
“No one’s fated or doomed to love anyone. The accidents happen.”
That works for me… and so do you Sailorman… so do you.
Stay safe out there Zeke… smooches,
~M. (Aka, well, you know who she is).
I am going to miss this particular view (for the next 6 months), and the Salty-ass hu(man) attached to it, so much more than anything I look at out my living room window, for 18 more sleeps. I knew when I met him that he is “a traveling man, not a vacationer,” and a traveling man must travel.
Yesterday he was showing me a rough route plan, for he ‘plans’ only that which is absolutely necessary, and where/what he really wants to visit/see. He’ll be driving to Calgary and Winnipeg first to visit with family, and then flying to Halifax where he will board a freighter to Liverpool.
From there he will make his way to mainland Europe and travel by bus and train or goat or mule or flying pig(?) through many parts, including my other home countries, to reach his goal of Russia and other parts of the former Soviet Union. He’ll be back sometime in the early Fall. I am not a bit jealous, I am jealous through and through.
As we were looking at the map, I expressed how much I love ‘real’ maps, and that for many years I held onto various Atlases from high school and University, because the art of ‘real’ mapping and the concept of ‘borders,and ‘cultural territoriality,’ fascinate me so greatly. And just because they are beautiful.
His Salty-ness says ‘hang on,’ makes his way to the forward bunk, and comes out with a Hammond World Atlas published in 1954. It is a magnificent piece of work. A most thoughtful, meaningful gift. Well-loved but in all its glory. Tears of holy-shit-I-love-this-book literally sprang from my eyes when he said “it’s yours, I was hoping to meet someone with a map fetish.” I said “aah, but were you ready for a cartophilic librocubicularist”?
And we laughed and laughed.
March 10, 1019
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