May the sun warm the earth,
that your tiny bodies were so unceremoniously buried in...
May the cool, clear waters of these, your islands and coastlines,
act as salve on the aching hearts of your families and communities...
May the trees and stones and creatures,
of these, your unceded territories, finally guide you home.
And may you know, that you were always missed, never forgotten,
and that you are loved, and grieved, then, and in the here and now...
...by your families, by your communities,
and by those of us clad in the unearned privilege, of lily-white skins,
who know, what we have done.
With all the love and humility I have,
May 31, 2021
If you hate the commercialization of a holiday that literally had nothing to do with romance, rather “originated as a liturgical feast to celebrate the decapitation of a third-century Christian martyr, or perhaps two," by the Roman Emperor Claudius Gothicus, then please, by all means, STOP commercializing/bastardizing it. I am still a devout Atheist, but that does not preclude my belief that people should not be decapitated, for theirs. I have long abhorred this particular Hallmark Holiday, single or attached, and have repeatedly requested of my Royal Consorts to kindly, NOT engage.
~M: Still the Queen of This here Quackdom, and happily not receiving Valentine-specific overtures from one Salty-Ass Sailing Man, without having to ask, because he gets it, all by his-self.
Sources: Historical info: https://www.smithsonianmag.com/history/gory- origins-valentines-day-180968156/ Photo: Google Search - Banksy - Lovesick
This is not the simple little bit of writing it started out to be, I had intended it to be at 8:30 this morning, because it is too important to me for quick and dirty, and because I am having a very ‘bad brain day.’ The ramifications of Lyme & Co. and the hard-hitting anti-biotic I was taking and have now aborted, my latest effort to keep the bugs at bay, factor largely to above noted ‘bad brain day.’ So unless you have the capacity to finish what I/you have started, I respectfully request, that you refrain from exercising the hubris, the temerity, to comment, chastise or congratulate.
As I sat enjoying my space and a really great cuppa Joe this morning, I was texting with the Sailor about all manner of personal and global bitch-slappy and interesting, when he quipped about my life being more 🙃 read as: upside down ‘interesting’ since we have known one another, than most people’s… I responded with: “it has been that way for 58.9 years Sailor, not just since we have known one another, for I was born into all manner of 🙃 and ‘interesting,’ and have also created and stumbled into, a great deal of my own 🙃 and ‘interesting,” and that, is truer than true my friends! And then, in the middle of that communication I remembered the date today: April 25, 2020!
What that means is: I have lived my life, made my choices from the ones available to me, had some made for me, because I do NOT have control over everything that happens, impacts me, only what I do with it, but I digress, how odd… What April 25, 2020 means, is that I have lived my life for 22 years, or 8036 days in-a-row, without the protective plexi-glass wall of alcohol, other drugs, and many auxiliary self- and by direct extension, other-harming strategies, that I learned to use at some point. I know exactly what ‘that point’ was by the way, down to the second, the words uttered at me, the actions that precipitated ‘that point,’ to get through life and her bitch-slappy, for without the plexi-glass wall, my only other option felt like that thing Parker’n Me have thought about, written about, joked about, were never really kidding about.
What that means is:
22 years of bitch-slappy unfiltered,
22 years of learning how to own what is mine, without suffering through, without taking responsibility for that which is NOT; this piece in particular has been a ‘capital C’ Challenge.
22 years of attempts at navigating the rocky road NOT leading to ‘blame,’
22 years of attempts at avoiding the donning of the grossly unfashionable ‘victim coat,*’
22 years of trying on and pulling off identities, pursuing, completing, abandoning, personas, goals, dreams, achievements considered desirable, assigned to me by individuals and systems/groups I both ‘landed’ with, and chose,
and 22 years encumbered by, trapped in, often held hostage by, the exorbitant number of boxes in the world we occupy, the ones I now take infinite pleasure in blowing up, for the buggers multiply at a rate quicker than bunnies,
22 years, to find myself located rather firmly, for better and for worse, here:
I have done better at it on some of those 8036 days than on others, better and worse at navigating calm and rough seas alike, better and worse traversing goat trails, maneuvering hair-pin turns on precarious mountain roads, and better and worse travelling with grace, on the few and far between straight-aways, the stretches with gloriously beautiful views, literally and figuratively speaking.
Recently, I have ‘enjoyed’ a most eclectic rain-storm, a rainbow coloured nuclear fall-out if you will, of several years in-a-row of WTF have I allowed, done to myself and my life(?), how the fuck did I land here?!? Me, who busted her ass so hard for exactly, NOT this!?!
But: I have done much of that, the bulk of it, on my terms, her (bitch-slappy’s) terms, and for the last several months, unapologetic, truly for the first time in my life, unapologetic for any of it. For I was acting on the often intentionally obscured-by-others information available to me, and in no small part, on what I believed at the time was the right thing for me, along with that all important thing called the context of where/how these things occurred, and the events/people/places I am powerless to exert any manner of control or influence over, regardless of any choice I may have made, to ‘be there,’ whatever that means in any given context, mine, theirs, yours, ours.
That is not to say I am unapologetic or regretful, and more importantly willing to ‘amend,’ in cases where others have suffered as a result of my actions, or even misunderstandings about my actions, not at all. I am unapologetic for who I am, and for being a flawed but most-willing-to-evolve, adjust, revise self and only self, human-woman. And as I believe is true for many women ‘just like me,’ contrary to popular belief and the often misguided conventional wisdom which has some folks believing to know who I am, what I am about: I have not had the she-cojones, big enough, strong enough ovaries if you will, not to care about what others think, how they respond to me, not to be gutted by how they treat me, who they think I am, who they think I think I am, the truth, my truth, of the inner workings which actually drive the outward me; not other’s perceptions not their assumptions about it, but the invisible layers of my machinery, the nuances of each tiny bolt, the contribution of the older, some rusty, some broken bits, to the entirety of this human ‘mašina,’ and her original ‘culture and tribe,**’ The culture and tribe I identify and find myself planted in more firmly, rooted deeper in, attached more firmly to, as time does that thing it does, marches on, with or without me, with or without my permission, it doesn’t give a shit, so I have to.
What that means is: I was not born tough, or even resilient. I was born wild, creative, funny, fun-loving, smart, painfully sensitive, and with an imagination and heart bigger than big, with a seemingly bottomless capacity for understanding, compassion toward even those of us humans who have committed unspeakable acts of heinousness, the most damaging of wrongs, toward others, including me. I was born to and with, and have honed, a significant capacity for knowing that context is everything, for taking the time to look for it, for it is rarely to never obvious, and almost never pretty. I was born with a view to the contexts which often drive human behaviour, born with and to, a clear and painful understanding of the fact that we do not live in a benign world, one in which all is fair and just. Those are words. Like love. And they are demonstrated, like hate, ignorance, fear and anger, through actions, not utterances. I was not born many things, I came to them, battled for and against them, most often out of necessity.
And I am a realist, and like Pyotr Ilyich Tchaikovsky, I know that:
“Life is beautiful in spite of everything! [and that] There are many thorns, but the roses are there too.”
What that means is: shit happens! People do good shit and people do bad shit, and bitch-slappy has played a very strong game in my world. And while outwardly it has appeared as though I have kept up with her, the inner working parts, my inner working parts, are often battle-weary. For I have willfully or willingly, at times not-so-much but stoically, waged too many wars, engaged in too many wars, on my own and others’ behalf over the years, and on a handful of dubious occasions, I have waged war against and upon myself. Most often, however, I have picked up arms in the name of those ubiquitous but rare-in-real-life philosophies; fairness, justice, human rights, human dignity, love; I have gone into battle against and with individuals and/or systems, that I had not the slightest chance of emerging as anything other than slaughtered from, barely limping away with my wits and life, a handful of times, literally so.
And while parts of that ‘wild child’ have never been vanquished, the child who was always heard singing aloud, the one who loved nothing better than to try different tastes in her mouth, the sound and impact of different words on her tongue, the one who still lives to find new and exciting ways of putting conventional words and other life and real food ‘ingredients’ together in unconventional word- and real food recipes, loves nothing more than feeding them to others, people I know and love, and people I have never met and love, and even people I have never met but love to hate and hate to love.
And like so many of us who care to, are awake enough to know, are not so beaten by it all that a flicker of that human child remains to find back to, I have had to battle relentlessly, repeatedly, to find my way back to her. And in this context, 8036-days-in-a-row, have been a key component of that war. For as much as I want to be a pacifist, I was born into a war-torn rebel’s world, and contradiction is as irrevocable a piece of me, as are intensity and softness, just some of the many cogs’n gizmos in my inner workings, along with the night visions, which often call upon me to see, to examine more than simply one, flipside.
And so today, April 25, 2020, at 8036 of 21,466 total days to date, I make the decision, out loud that is, for it has been resolute within me for a very long time, a decision I have been avoiding for the better part of a decade, and since a particular set of momentously important to me flashes of introspection, flashes so hot that they took my breath away. The fire started burning 10 years ago, along with one in 2006 which served as the original kindling. These moments, this blaze, burning over the past 14 years, are about a deepening understanding, awakening to that thing I have mentioned here, and in other articulations: context.
It is, has been about, using the cognitive abilities I was gifted with, to think beyond the obvious, the easy, the overly simplified. For complication and complexity are not one and the same thing, and while simple may suffice in some instances, complex problems and issues are rarely-to-never solvable, with simple, surface-level, easy, band-aid if you will, solutions and fixes and with punitive, self-deprecating, other-worshipping practices and beliefs.
So I made a decision in 2006 NOT to make a decision about continuing involvement in a movement I have been a more and less active member in since April 25, 1998, a movement I have incredible gratitude for, but the core tenets of which I have ‘bought into’ less and less, the more I grow into me, and my ever evolving world view. I know that I made that decision not based on my own needs, wishes and desires, but because I was afraid. Afraid of what others told me would happen if I didn’t go, afraid that I was too bad a human do deserve anything better, because those messages, had been beaten into me repeatedly, literally and with words. Afraid to rock the boat, because while one half of my original people spent his life doing just that, and it is in my blood, the other half spent a good piece of hers running, having to hide, from her and her mother’s violence-inflicting tormentor, and rocking the boat was a life-threatening endeavor for them, also in my blood. So for years, I continued to make a decision I was not happy with, but kept convincing myself I could ‘live with,’ because other people’s tapes, other people’s history, other people’s choices and thoughts about what I should do, who I should be.
And in all fairness, over the years since 2006, I was able to at least in part, ‘take what I need and leave the rest,’ but the truth is, my truth is, that I cannot buy into most parts of it at this point, and believe strongly that some of the ‘instructions,’ and for lack of a better word dogma, are so damaging, that it is not possible for me to continue on as even a part-time participant, and live comfortably in my own skin. My own skin happens to be the only one I have to be, need to be, comfortable in. And so I wish most fervently that you are picking up what I am putting down, though I already steel myself against potential backlash from lack of exactly that.
Because people will read and interpret the articulation of this decision as all manner of things I am NOT saying, and because people will inject all manner of things I do NOT believe, and will NOT do, and people will discount the fact that I will continue to ‘count,’ because I have no desire to be anything but Marcela unfiltered, Marcela undiluted by anything but life-pure, with internal and external vision clouded only by age and the bacterial war inside me known as Lyme & Co., NOT by the survival tools I put away for good, 22 years ago today. Because please, know that there is more than one way to skin a cat, sober up a horse thief, more than one way to find and keep, self.
And while the one person who has been with me in that movement since before April 25, 1998, including through several years of physical and other separations, the one who would have remembered the date before I did today, but is not in a position to think about anything but her own battle in this moment, the one other really important one, the human I started counting for in the first place, did remember, and called to let me know.
And because of his context, and something beyond my control, our relationship has taken a most unexpected turn, but after the initial shock and pain, in an odd way, I am beginning to see the parts that are for the better, though I haven’t quite worked out the exact bits around much of it, yet.. but my point, and I do have one, is this: that human my son Thomas, understands, deeply, far beyond the surface, why I stayed, and why I cannot at this juncture; why my world views, my belief systems, my inner ‘mašina,’ no longer allow me to consider myself (and others) in the terms and labels ascribed us by our culture, in regard to so much of life, but specific to 8036 days, in regard to human responses to trauma and general bitch-slappy, and that not everyone comes with the same set of ‘resources,’ or choices, or birthright, to deal with said traumas and H.R.H., bitch-slappy.
And that, his ‘getting it,’ his remembering, is gold that no medallion will ever give me, though along with counting, I may still collect them too, because we can buy all kinds of fun’n fancy ones online, just not all the work and battle, that is not available on Amazon, in case you were about to google that shit.
And please, make no mistake: the difference between now and the years I speak of, is not that I am going to do anything differently in maintaining a back-to-back count, it is that I am telling you I won’t be coming by anymore, to eat cake, for counting back to back, and to be told how great I am, or to have my dignity affronted with assumptions/conclusions and uninformed opinions by people who have met me less than a handful of times, some for less than 5 minutes. Really, it comes down to where/with whom I want to expend the precious time, exert the precious little energy and other resources I have available to me, and it does not mean I am not grateful, or that I will not always cherish the ‘beautiful souvenirs,***’ please do not make that mistake, or do if you must, but do, please spare my oh-so vulnerable heart.
I picked up my plexi-wall on April 24th, 1998 for the last time, and I have as little desire to raise that battle shield again as I did in my most fervently ‘in’ days of service and ‘movement’ involvement, but pretending to be part of it, knowing I have not bought in for more than10 years, is not something I can, not something I want, choose, to live with anymore.
Thanks for reading, it has been a laid back, eat too much, and do whatever-the-hell-I-want-kinda-day, and the neighbours’ fence panel, is the only bit that turned 🙃 ‘interesting,’ during a big-ass gust of wind this afternoon. I, have been unwell, but calm as the proverbial cucumber. I think I’ll make a Czech, Okurkový salát outta that!
~Marcela: Stepping out, gracefully, with gratitude, and bereft of a single dram, of maleficence or even resentment.
*A very different phenomenon from true victimization, something I am also familiar with.
**This is a vast topic for me, to be investigated and noted in a different context than the one in this piece of me, and it includes my original home and native land, its food, customs, belief systems, ways of living and being, my original tribe, their history, and their influence on my deepest self.
***“I can’t spend time with people I don’t enjoy. I can’t do it anymore as theater. I make choices, and that’s a beautiful thing about growing up, learning to say no, in a nice way, just say no. I have this friend…we just went different ways in life. Once he came to me and said, “Francis, you don’t like me anymore.” and I said “No, it’s not that I don’t like you, we’ve chosen different styles of life. I still have beautiful souvenirs of all the things we did together and how close we were, but the truth is it’s not that you bore me, but I don’t enjoy talking to you anymore and I don’t want to fight with you but there’s nothing in common between your life and mine nowadays.” I would have never said that but he asked me. So what could I say? I said the truth. Growing up has a bit to do with that, to be able to tell the truth, to show who you are, even if it hurts.”
― Francis Mallman
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
One of the greatest things I have learned in the course of my entanglement with the Sailor, is that true intimacy, and anything even resembling love, of any quality or depth, in any kind of relationship, cannot, absolutely cannot, be about ownership, or the expectation of filling other’s voids, needs, even.
His language is a little more flowery than I am generally fond of, but he was a very, very wise man, I’ve been reading him since I was a kid, but only relatively recently, come to appreciate, understand, his teachings:
“Let there be spaces in your togetherness, and let the winds of the heavens dance between you. Love one another but make not a bond[age] of love: Let it rather be a moving sea between the shores of your souls.”
On the 7th day of Crass-mess my true love sent to me 7 plastic seas a floating 6 geezers laying (down) 5 golden thongs 4 cat-calls 3 French fry gift cards 2 xmas turtle pics And a voice-mail xmas grting (press 1) on my automated phone tree ~Marcela: checking (y)our cultural realities December 19 , 2019
On the 5th day of Crass-mess my true love sent to me 5 golden thongs 4 cat-calls 3 French fry gift cards 2 xmas turtle pics and a voice-mail xmas grting (press 1) on my automated phone tree
~Marcela: checking (y)our cultural realities December 17, 2019
On the 4th day of Crass-mess my true love sent to me 4 cat-calls 3 French fry gift gift cards 2 xmas turtle pics and a voice-mail xmas grting (press 1) on my automated phone tree
~Marcela: checking (y)our cultural realities December 16, 2019
On the 3rd day of Crass-mess my true love sent to me 3 French fry gift cards 2 xmas turtle pics and a voice-mail xmas grting (press 1) on my automated phone tree ~Marcela: checking (y)our cultural realities December 15, 2019
Flying a Cherry-Blossom Flag on Remembrance Day
What a misguided world… Someone else’s suffering cannot buy our freedom, bombing and terrorizing other countries/cultures cannot bring peace.
I do not argue that people like Hitler and Tojo need(ed) to be stopped, but war is an every day thing now. We have actively engaged/supported WW III for many, many years.
Weaponized peace-keeping is an oxymoron at best and a travesty at worst, and most of the world’s ongoing and newly erupting wars are still about what war has always been about: ethnicity, religion, and greed; the quest for resources, whether life sustaining like water, or ‘deemed’ valuable (fossil fuels etc) by modern economic systems, driven by political structures and power mongers in industry, who pull politician’s puppet strings.
When someone chooses to go into ‘service,’ especially in this day and age of voluntary service, they choose. Operative word. Just like I chose human services. Also a ‘front line.’ I am traumatized daily by the level of disregard for people, their basic human dignity, rights and needs, people just like you and me.
So those who choose the military, get no more and no less respect/gratitude from me, than anyone else making a living doing what they have chosen to do. It was not all those service men who died in WW I or WW II who bought our ‘freedom,’ it was a couple of nuclear bombs dropped on the ‘every day’ people of Hiroshima and Nagasaki.
And before you jump down my throat, know that my heart bleeds for all of them who gave up their lives or lost everything in the great wars of the past, and those of today. My own father gave up his life as the result of a political battle, so that my mother, brother and I could live in a ‘democracy.’
My heart bleeds for all of us, daily. And for today, I choose to ‘fly’ a Cherry Blossom Flag, instead.
~Marcela: Cherry Blossoms Flying High
November 11, 2019
Writing: All Rights Reserved
(I originally posted this to a forum I belong to, full of folks just like me, desperate to Kill the Beasts. Many, have been on/off horrendous amounts of anti-biotics and anti-malarials/parasitics for months, years, decades, only to kill the very thing we need to heal anything, a healthy gut/biome, and to get sicker by the day, many to the point of absolute disability and with no quality of life. Many of the younger folks inherited it in the womb and have been sick most or all of their lives. But apparently, congenital and/or persistent Lyme & Co. do not exist and antibiotics are the cure. I refuse to use the word chronic, for it is a complete and utter misnomer for this set of complex issues, but that is another elephant entirely. I personally know at least one person who has been absolutely mis-diagnsed with Parkinsons, and no-one want so hear that that Parkinsons meds are not working because she doesn’t have Parkinsons, she has Lyme, and likely other infections. MS, Parkinsons, Alzheimers, many others, are often misdiagnosed in people with Lyme and Co-infections like Babesia and Bartonella, because the Bugs impact the same systems as these diseases. Testing in these people generally comes up negative because we test for antibodies. A body under siege, a body whose immune system is broken, cannot produce, cannot show, antibodies in the blood. They, these bugs, wreak havoc on every single life-sustaining system in the human body, and they are neither simple to diagnose, nor easy to eradicate.)
No Silver Bullets
Following weeks of various preparations (body/food/products/home), I took my first dose (125 mg) at 10 this morning, of this very old drug (almost 70 years and counting since approval for the pharma-market), with many new, as yet fairly experimental, off-label uses.
Providing all goes well, I will be taking 125 mg every three days for the next two weeks and then adding 62.5 mg every two weeks, and later, adjusting the dose frequency, until I reach my maximum daily dose of 375 mg, which my ND and I figure I will stay on for at least a couple/few months. I am not under any illusion that this will be a ‘quick-fix,’ or for that matter ‘the fix,’ but I have faith in my own capacity to persevere, and I have faith in the useful support I have found here and elsewhere in my world. This is not my first rodeo with a ‘really big lifey-life bitch-slap,’ though it is perhaps in the top 2 on the F-UGLY list, one of the most heinous of the heinous-nesses I have waded through to date, and for so many reasons, for real-for real.
If I have learned anything in the nineteen-ish distinct and wildly different (from one another) lives I have lived in this one skin, in several countries on 2 continents, over 58 years, and through (too) many lifey-life bitch-slaps, traumas and dramas, self and other inflicted, it is this:
There is no getting over, no getting around, no getting under, anything. There is only through. Shortcuts, at least for me, inevitably, turn into the longer, more painful, more laborious, more expensive (monetarily and otherwise), way around.
There is little space left in my world and person for anything other than taking charge of my own life and of course by direct extension, my health. The only way I know how to do this for myself or for/with the people in my ‘driven by human-suffering’ work-world, in one of the so-called ‘helping professions,’ is by arming myself with as much (useful and credible) information, by utilizing critical thinking skills, by exercising prudence, thoughtfulness, and by accepting responsibility for that which is mine: my choices, based on the information I have at any given time, in any given circumstance, and by not enmeshing myself in/with, that and whom, which are not my concern.
This does not mean that I am not frustrated as all f*** with my experience and the level of ‘are you kidding me,’ regarding the bugs who have taken up un-invited and rude residence in my/our bodies, but I am challenged with being furious, or blaming them anymore, because at the end of the day, they are just trying to do what we all do: survive, literally, by feeding off another living thing. And they, unlike humans, do not have the ability to think or feel. They are microbial-doers, doing what microbial doers do. Humans on the other hand, think and feel, and then do, often despite clear and present evidence that they ought to think, feel, and do, differently.
None of this means that I am not appalled, that I am not saddened, that I am not broken-hearted beyond description at the levels of ignorance, incompetence, conjecture, conflict, confabulation and all other messes in between, around these bugs, by both the mainstream and naturopathic medical communities, and their various offshoots like research and pharma, as well as Jane and Joe Average, and our, and the people closest to us, suffering (often for years, decades), as a direct result of all that chaos.
This does not mean that I will be ‘happy,’ for having had this experience, and it is highly unlikely that I will ever be ‘grateful for it,’ specifically, once I have enough energy back to do more than go to work to afford the gas to get there, the roof over my head, the food in my fridge, and the pricey protocols and supplements that keep me on my feet (barely), just so I can go back to work to run the cycle all over again. But, it is my most fervent belief, that a great deal of my physical, emotional and psychological suffering has only been exacerbated by the ‘fury’ of it all, at it all, at them who don’t, won’t, or can’t ‘get it,’ whether ‘it’ is related to the bugs, or any other lifey-life-bitch-slap in my more recent or further pasts.
This does not mean that I co-sign, sanction or accept the really bad, bordering on libelous actions and non-actions of my ex-GP, and all the other doctors out there who are quite simply, WRONG. It means that I know better than to expend my oh-so precious energy at trying to do anything about anyone else, what they do or don’t believe (in), it means that the only thing I can do about any of it, lies in my response to it, what I choose to do with it, how far I choose to allow unhelpful feelings to run it, or not. To that end, I have chosen to disengage, even if too late, from some of the conversations I found unhelpful here and in other parts of my life, and have tried to walk the talk I speak of above, to the best of my innately flawed, and acutely human, ability.
I cannot articulate strongly enough, my gratitude for this group. I have prepared as much as I humanly could under my current physical, psychological and financial circumstances, and I could not have done it half as well without some of the great information and support in this forum. I go into it knowing that I have done what I can to provide myself the best possible success given all of the unknowns, the complexity and myriad variables that are inherent to this treatment, these Beast, and most importantly, I know that there are few, if any, silver bullets in life, most especially in life with Lyme and Co.
Thanks for helping me start, I’ll post updates as coherently and as often as possible. I work full time in a fairly high-maintenance job, with a commute, and my work-hours spent supporting folks in the midst of their various lifey-life bitch slaps, with both of us trapped in most inadequate systems and resources. So in the event I am not present here as often as I would like to be, please know, that I appreciate so many of you so very deeply! I have also learned to set and respect my own boundaries (because they are there to ‘keep me in, not others out), and there are times when I simply cannot engage with anyone, in the e-world or in-human, in regard to any topic, never mind foraging in the deep, dark forests of the Beasts occupying my (and your) body, and the entirety of many of our lives.
Marcela, doing battle with some mighty tiny, but mighty powerful, Beasts, and the systems around us in the world.