September 26, 2021
September 26, 2021
50 years… how has it been 50 years…?
I think about you every day, miss you every second.
Whenever I have cause to go to Vancouver I look for the places we lived, and remember the early days of our life as immigrants, how excruciatingly hard you and my mother worked to build a life, from nothing, absolutely nothing, in a country and culture so foreign to us it may have been another planet… but it was exciting, and your energy, your never give-up was, is to this day, palpable, and it lives on inside me.
When I lived in Switzerland and started going back to the old country, I sought out Nerudová 1, every.single.time, and remembered the old coal storage downstairs, what you hid there, in preparation for our escape… When I went back there with mama and my boy in 2014, tread upon some of the same cobblestones in Karlovy Vary that we had all tread upon at some other point in time, I drank up mama’s stories of where the two of you had spent time together, regaled my son, one of the grandchildren you never met, with my own recollections of the first 7 years of my life there, and my recollections of you… and I cried like the small child I once was there, when we visited Božý Dar, our old ski cabin, and vague memories of being on those ski hills, on your back, in a rucksack, and then on my own tiny skis, came to life brightly, and as it does in these moments, time stood still…
When I went back to Stewart a few years ago I walked until my feet bled, until I found our old townhouse… and the nearer I knew I was, the more intensely I felt your presence, and I remembered the 20 foot snow banks, and that we had walked this road together, and desperately I tried to make out your voice, failed, for it had been so many years… decrepit, rotting, moldy, the carport caved in by decades of big Northern BC snow, and overgrown by the vegetation that takes its environment back when we abandon it, but also seemingly untouched, it was all still there, frozen in time…
Walking through the front door was the single greatest moment of surreal of the entirety of my years, and no drug on earth would match this high, the emotional crash of it, rolled into one intensely profound experience… so intense profound, because while I cannot buy into the spirit world, you were there, because I was there, because we had all been there, at another time.
I walked into the small square of a kitchen, and I remembered you shaking up the resourceful man’s milkshake, for you were nothing, if not resourceful, for my big brother and me, in a mason jar – canned milk and strawberry jam… I walked into the living room and saw the giant tree through the streaky, fungus-covered window panes, that tree our Collie Sheba chased a bear up into… and I as I made my way up into our bedrooms, where the lamps you had so skillfully MacGyvered for us once hung, I remembered your words, but still, could not conjure up your voice as you told us to put the sheets on our beds… when I walked upon the molding carpet, the same one we had all walked upon all those years ago, I heard your footsteps, coming home from the mine that took your life.
I could not bring myself to walk the rotting stairs down to the basement, where you kept your rifle, the one my mother was tempted to use when we were told you were dead. For that news was and remains the single most impactful event in our respective lives. The mine, the people associated with it, took your life, and with it, my mother’s joy, and my brother’s and my childhoods, in one fell swoop. And while I am aware that it is an exercise in futility, I cannot help but wonder, often, what life would have been like for all of us, had you lived beyond 36 fast and furious years, to see a birthday past that one, to see this day, what would have been your 85th year.
Your rebel lives on inside me, and maybe even some wisdom, which only years can bring, I see more of that in my brother, and I like to think that you would have been like him, at this age, and so in this way, and so many others, you live on inside him. Your rebel, your energy, your wild, your survivor, your wise-man, and sometimes your impulsive adventurer, they all live on inside me and my brother, in a thousand different ways.
October 24, 2020 (re-posted July 07, 2021)
725,846,400 seconds, and counting…
These are the numbers representing the back-to-back time I have spent living in my own skin, for better or worse, without the bullet-proof shield of substances to kill the pain, kill the pain, kill the pain; or at the very least, obscure it some, so that I didn’t take myself off the planet.
I am not you, and you are not me, so what is painful to me, may not be to you, and vice-versa, though the experiences I speak of here, are in my personal and professional experience, a source of great pain for many, if not most. We all deal, or don’t, with these things, anything, in different ways, and many folks have barriers that the rest of us will never know about to accessing support, and/or, like me, have experienced more pain, in the pursuit of said support.
So please, read MY (abridged) list of pain, with an open mind, but more than that, use, hone the skill of critical thinking, listen with an open heart, and try not to paint my experience with the tainted and dirty brush, of yours, or others’. For when we do that, we inadvertently, or purposefully, judge another’s pain, measure it, against our own. But when we open our hearts, minds, and eyes to another’s context, the possibility that even the very same experience can be perceived and experienced very differently by different humans, we cannot help but have empathy for any given soul, no matter their circumstance or the ‘choices’ they have made; because choice theory, while a very useful tool, is limited, often severely so, but that is a digression I have neither the time nor inclination to pursue in any depth here. My point: we are not all born, raised, gifted with, the same set of choices, abilities, and ‘fairness,’ is a great theory, but an ill-fitting concept and rarely to never doable in practice, in far too many situations.
I wielded my shield to protect myself from these pains:
-The pain of losing my extended family and the most important pieces of my cultural heritage, to the Soviet invasion of my original home and native land in 1968, becoming refugees
-The pain of watching my mother and barely older brother, take on the gargantuan task before them: leading our little family of 3 in this brave new world, with no money, little to no language, no extended family to speak of, and little to no hope
-The pain of watching a man take advantage of my mother’s position, and when she had had enough and sent him packing, the pain of losing everything we owned, because in vengeance, he set our home on fire
-The pain and guilt I watched her writhe in because she hadn’t understood a detail about our insurance, and we were uninsured
-The pain, the exhaustion, of constantly trying to fill the void, the one that only got deeper as I got older
-The pain of filling the void with boys, and later men, who looked only to their own wants, discarding me by the wayside like so much trash on the bottom of their often ‘well-heeled’ feet
-The pain of Lou, the wealthy ‘hobby pimp,’ with no actual need for the money, who professed to love me by turning me out and then kicking me out at the age of 18, because in his words to my brother, I was “all used up.” I had to force those words out of my brother’s mouth; he did not want to tell me, to slay me with those words, and they did, slay me. Lou, at the time 32, didn’t possess enough man-balls to kick me out himself, so he summoned my brother to collect my things, but not many of the fancy things that stayed in his penthouse, payed for with my body. He loaded my brother’s valiant and sent him to my ‘day job,’ in a nail salon he (Lou) owned, to have my brother “let me know” that it was over. Chew on all that for a minute or two and imagine what it may have done to a hurt, already lost soul of 18. I was a hurtin’ little girl before I met this man, in one of his salons, getting my nails done, by a friend, who he had turned out… this series of events set the stage for years of choices, which for several decades I did not understand, did not recognize as being related more to Lou’s actions, and what happened in the course of my sex-work career, than to anything I had experienced previous to him. This is the Reader’s Digest version of less than 2 deeply and profoundly impactful years of my life, that unbeknownst to me, would serve as the fuel for too many years of suffering; suffering I acted upon, in a myriad of ways that simply caused more pain, to me and everyone I cared about, everyone who (truly) cared about me.
-The pain of violence; of physical, sexualized, verbal, emotional, psychological, intellectual, and financial violence. Vile and deliberate violences perpetrated against my person by various individuals, including some I loved, trusted, individuals who purported to ‘love’ me, who demonstrated their ‘love,’ returned mine, with vileness and violence.
-The pain of violence perpetrated against my person by individuals in the systems and groups I reached out to for support
-The pain of being pathologized, for THEIR violence and bad behaviour
-The pain of being patronized, invalidated, belittled, subjected to too many indignities, and victim-blamed and shamed, for my pain
-The pain of never being ‘enough,’ for anyone, least of all myself
-The pain of being ‘too much,’ for everyone, and conflicted about it, within myself
-The pain of doing the bidding of other’s dreams for me, rather than my own
-The pain of running, back and forth across several countries on two continents, only to find that where ever I went there I was, and there it was, the pain.
These are the primary reasons, I say primary because they all had extensions, nuances, bred offshoots, but I digress, how odd… these are the primary reasons I needed a shield. The shield’s chemical make-up and methods of delivery to my traumatized brain and spirit, changed as my needs did, depending on the circumstances of the physical and psychological spaces and places I occupied. The chemical make-up and methods of delivery encompassed an ever broader spectrum, ranging from mild, to wow and fun to holy fuck and almost lethal. All of it, did what I intended for a while, saved my life, and believe it or not, in some ways my sanity. Because the only other choice I felt I had at various points in my life, was to end it.
And at some point in 1997, I stopped making decisions that were related to anything but the procurement and use of the shield, any shield, and my coping strategy, my survival mechanism, my best friend, became my worst enemy, took the meager remnants I had left, of me, and every.single.human I loved in the world, every.single.human who loved and needed, the me now buried so far below the detritus of the pain, that the void had swallowed me up.
Fast forward to September, October, and December 1997, several stays in detox, and a 16 week residential treatment program. And then, April 22nd, 1998, I picked up and wielded that shield for the last time. In the course of those detox stays, and a fairly brutal treatment program (now there’s another story), I had experienced tiny fragments of myself, real hope around becoming a mother again to my child, and at least enough belief in myself that I could build some kind of life for us, to start over yet again, so on April 25th, 1998, I started counting days, and have not stopped since.
I did so with the help of a number of counsellors, a compassionately brutal and very effective day treatment program which went to heart of the matter, the traumas listed above; went to my very core, helped me start the arduous process of resurrecting a Marcela I could not only live with, but one who would eventually stop caring, so much, about what anyone else thought about her. It was a ground-breaking program really, in its time, pre- the joke that has so sadly become most trauma-informed practice in the ‘helping world, which unless used with the greatest of care and attention to language and human dignity, does nothing but ladle a bunch of pathological symptomology onto people who have been violated in the most horrific ways, and attempts to ‘treat’ them, coming full circle to: it’s on you/me. Watch The Keepers, in its entirety, if you want a painful look-see at an example of that… but there I go, digress again, look, shiny-shiny Unicorns… stop! Revise: I digress because nothing, nothing about any of this, for me, for the women I once mentored in the BaNAclub, for the humans I have supported in the course of my work, for the countless humans struggling with all manner of trauma today, and its related responses (read: coping mechanisms, survival strategies), nothing, nothing at all, about it, is straight forward, no matter its roots and causes.
I did so, kept counting the days, primarily with the support of a group of people I have lovingly called the BaNAna club. I did so by attending countless meetings, and with very deep involvement in its service structure, thousands of hours of volunteer work sitting on committees, supporting people in various institutions, mentoring other women, and a handful of gay men.
And as the years wore on, I did so while trying to remain loyal to some of the individuals responsible for some of the pain, and living, trying to stay ‘part of,’ with an ever increasing, ever more disquieting discomfort, with most of the club’s basic tenets, principles, and a constant push to believe in something I cannot, have not, since I was a small child. Though in all fairness, I tried, really really hard, for many, too many years. False loyalty has been an Achilles’ heel, a constant companion, in the complexity that is I.
And then at some point, I just kept counting them without significant involvement in the club, but for too long, with the ever-present internal struggle of false loyalty, and more and more harmful (to me), attempts to maintain my ‘membership.’ I kept counting the days not because the club told me I had to, not because I believed the rhetoric that I would re-erect the shield if I didn’t practice what had become stifling rote, and an act of psychological and spiritual violence against self, every time I crossed the threshold into one of ‘the rooms,’ every time I heard myself or someone else repeat the tenets.
I kept counting because somewhere along the way, I had come to the conclusion that I did not wish to ‘filter’ my life, my view, my experience of what Salty likes to call ‘damned reality,’ had no desire to filter me, with anything, least of all with the shield, any shield.
I could not, knowing everything I know about my life, about myself, and a great deal about the lives of others, buy into something which insists that I view myself as someone with “defects of character,” as “powerless,” and as “self-centered” to the core. I cannot buy into a disease model of substance use or the contradictions in the club’s literature about our ability to recover but to never be cured, healed. I cannot stomach any longer, the notion that I do not have enough power to make decisions for myself, as related to a resurrection of the shield, or maintaining my back-to-back count, and I cannot, will not, have the entirety of my person and the entirety of my life, defined by something that I stopped doing 23 years ago. For that matter, I will not have it define any part of my life, prior to, or following April 25th 1998. I will not define myself, the entirety of my wildly creative spirit and my 19 lives in one skin, by any one aspect of my life, any more than I allow Lyme disease to define all of these things about me. I don’t call myself a ‘Lymie,’ I abhor terms like ‘survivor,’ and the word ‘victim’ has been hijacked for purposes of judgement, so I will not use that one, either. I will not label myself an addict for doing something that saved my life, for as long as something like the shield can, before it turns and consumes one’s life and being.
It comes as no surprise to me that the very thing I relied on to ‘save’ myself, ended up turning on me at some point, too, at least it felt that way. Although when I really think about it, I find that it simply reached the end of its utility for me, and I could no longer ignore the contradictions inherent to it. And it began, at some point, to stunt my growth. I know for certain that it began to harm me long before I walked away, but I believe I was a bit trapped, by the previously noted false loyalty, and by fear.
And that, is what I believe to be at the core of my disengagement from ‘the program’ and most of its members. It, they, limited me to living in fear, which is completely contradictory to that which I believe for myself, have demonstrated over and over again, prior to, during, and post, the BaNAna club years: I have long chosen faith, in my ability, with the help of others I choose to have in my life, when needed, to figure shit out; without having to dig the shield out of its musty, dusty closet. I am quite happy for it to stay there, with the other skeletons I have picked through ad nauseam, and chucked back in to rest in their jagged, now useless to me pieces. For I categorically refuse, to keep flogging the rotting flesh of long dead horses.
It is important for me to articulate that I have the deepest gratitude for some of the people I have crossed paths with in the course of my involvement in the BaNAna club, and for its utility in helping me find enough of myself, to help me figure out that the way, for me, is about healing my wounds, both self and other inflicted, and for moving on. It does not mean that I don’t continue to support people looking to find and heal themselves, it does not mean that I actively dissuade others from trying/using ‘the program(s),’ it does not mean that I stop my own personal work, and it most certainly does not mean that I’m going to run out tomorrow, or the next day, or when Bitch-Slappy decides to deliver her next blow, because she slaps whether or not I am a member, to pick up the shield, it never means that, unless I choose, decide, that it means that. And whether I choose to or not, at the end of the day, there exists no permanent affliction, in any event.
So I continue to count days, because I am loyal to myself, and to a decision I made 23 years ago today, to refrain from picking up the shield, no matter what. At this juncture, that choice is a subconscious one most days, but it is a choice, and despite feeling very limited in the choices I had, and they all felt equally shitty, it is a choice exactly as it was to wield a shield, in the first place.
And if I should choose to pick up any of the legal and/or illegal substances I have long put down, it is because I made a decision to do so, and not for a lack of gratitude or a lack of tenets and dogma in my life, any dogma. And certainly not for a lack of some of the people who populate the rooms of the program(s).
Francis Mallman is one of my food and philosophical heros, and I’ve had the hots for him for a good long time now. If you watch the episode of Chef’s Table that tells his story, you will understand more about why this me, in so many ways, and you will understand my break-out of many boxes, including the relationship (any relationship) box I lived in for way too long, and you will understand why me and the Sailor… all that said, one of the unequivocally most beautiful things about growing (up), without constraints, into my own skin, is that I no longer need any of you, to understand any of it; though in all honesty, it is still heart-warming when you do. So thank you for the souvenirs and most especially for the deep and lasting bonds that continue to flourish in my life. I am acutely aware that they would not have occurred, without my membership in the BaNAna club.
“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 Mallmann
With all the love I have, and a wish for smoother sailing for all of us, here’s to the next 365, of whatever we are counting, or not…
~Marcela: still counting…
April 25, 2021
Writing and Photo: All Rights Reserved, because sharing is great, plagiarism is not. Things like quotation marks and attribution, are a great way to avoid that…
I am not content to fall, any deeper, into the hole in my soul, which was once occupied by the relationship with you, my only child. I am not content to dwell, any longer, on that which has befallen us, respectively, my dearest friend. I am not content to remain, paralyzed, in a robotic survival, originating in the grotesque realities of this life and world, yours, mine or ours. I am intent, on creating something, anything, other than: black holes broken hearts and trudge. I may not know, may not see, yet, this new future, but I am fervently and passionately, intent, on creating it. One Foot In Front Of The Next I am not content; therefore: I am intent. ~Marcela: moving toward that which has eluded me most of my life, one well-shod step at a time. February 20, 2021 Photo and writing: All Rights Reserved.
I glimpsed her in my peripheral vision as I sat quietly in my vehicle, waiting in the ferry line. I had been savouring the warm, fresh memory of forty hours. Forty hours of beautifully easy moments, forty hours of small, but powerful adventures on the little Island called Thetis, with the man of many monikers and few (extraneous) words.
She, whom I had glimpsed, wore the layered, long and flowy patchwork skirt that I have come to associate with the mature, nature-loving wild-spirited women of the Gulf Islands. The skirt was topped by a ¾ length puffer coat, and a bright white Smurf-toque, and she wore them with an ease and comfort only one well at home in one’s own skin, can wear.
Her little dog was clad in a red sweater that reminded me of the Arbutus berries I had attempted to capture with my camera just yesterday, and matched her wild-woman hair, in a shade of vermillion not available in any beauty counter bottle.
She felt my gaze as she walked by my car, turned to look me in the eyes, and gifted me with a smile so genuine and warm, a smile of such depth, a smile of intensely wise knowing, a smile the likes of which only women of a certain age and wisdom have the capacity to bestow upon other women. A smile bereft of competition, insecurity, or envy.
And I left the Island feeling as though I could, possibly, make it through another week of intense human suffering, and perhaps, even lessen the burden for some, because: 40 hours and her smile.
~Marcela: focusing on the beautiful, in the midst of ugly all around us.
December 06, 2020
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
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.
Dearest Young’en (it’s a new one, aren’t you excited?):
But I digress, how odd…
Dear Thomas George Raphael Turjančík (see, I remember your real name!): this day, at 13:29 Central European Standard Time, in the year 1991 (I did not have to look at the tattoo on my left forearm to remember), I met you.
You were as calm about it as you often are today, outwardly anyway, though we both know it’s different on the inside, I and your father on the other hand, wore our stuff, loudly on our sleeves.
We were happy, so very very happy, and excited beyond measure, and not a bit frightened, a great many bits frightened, each for our own reasons. The inner demons we had yet to quell, respectively and as a couple, had not yet been fully outed, never mind sorted.
But this event, your homecoming, changed us, at least for a short while, for the better, so much better. For you took us out of ourselves and into a frontier that your father had traveled to previously with your brothers, but one that I, had not yet ventured into; a world in which someone else is 100% reliant upon my reliability; a universe in which by default, I became the center of your universe. I was not ready for that, and I had so much to learn.
We know that there was a time I failed you, failed us, and we have jumped and tripped over many hurdles, vaulted over seemingly unreachable bars, and spent time in a deep, dark, abyss, individually and together; but we have both made it here. And you, the perfectly-imperfect child you have been, continue to be for me, have found to yourself, in a way that inspires awe in everyone you meet, and inspires awe in me, every.single.day.
And while I like to believe that my particular brand of parenting, what I stand for, has had a positive influence on who you are, how beautifully you function in the astonishingly complex world we occupy, that is; with a critically thinking intelligence, with grace, insight, with compassion, and kindness, all of this and more, is yours, yours alone, to own and take credit for.
It is the fruit of your labour, Thomas, of the hard, often painful personal work I have watched you wrestle with these past few years, supported when asked, but viewed from a distance that was often excruciating for me to keep. Know, as I believe you do, that I was (am) always ready and waiting with a life-ring when needed.
I cannot ask for a better gift on this day, the day I met you 29 years ago, than knowing, trusting, that when life offers up her lifey-life bitch-slaps, or we walk willingly, stupidly into them with eyes wide shut, for to believe that we do not, is to lie to self first and foremost, you will eventually find your way back out, and with a newly forged, temporarily, until next time, sense of self.
It is a gift for me to believe that you understand the importance of introspection, and personal revision, the critical role of, and need for personal evaluation and re-evaluation, the imperative of personal evolution as a constant, not as an event, and I thank my F.U.Gs that I can believe you are aware of this, central tidbit: every response or reaction you choose, to anything or anyone else, that while fueled by those outward influences, is a thing generated internally, by self, and self-alone, it is a choice.
This is important, for to believe otherwise cloaks us in a coat of personal powerlessness, a coat I could not bear to watch you wear, the coat of blame and perpetual victim-hood. I have worn it; it is an outdated, heavy, ugly garment, best recycled into something more useful, like a pair of really great shoes, or better yet, an I-love-me/you-jacket.
And so this, my child, the child I would have chosen had I been given a choice of who I want you to be, is my Advanced Directive: do not wait for lifey-life to get back to ‘normal,’ ever. Live it as best you can, in the moment, right-the-fuck-now, under the current circumstance, and/or restriction. Live it with purpose, and accomplish, take a single step toward something you yearn, burn to do, every.single.day.
Take my advice, for I was not using it. I have wasted too many of my days on irrelevant (to me) endeavors, in the name of others, their beliefs, their needs, their power, their ill or well intentions toward me… bla bla fucking bla…. Do NOT, I beseech you, under any circumstances, follow my ill-fated lead in this regard.
I love you more than any word will ever do justice to, and I thank my F.U.Gs for you, every.single.day, for 10,593 days, and counting.
All my love,
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.
The roar of the culvert spewing forth the runoff, raging like the internal and external storms of the night previous, temporarily assuages my tinnitus and pressure addled brain, with this other, din. I walk on leaving the culvert behind, and, with the relentless vengeance of the intruders in my body, they cut anew; the razor-sharp edges of my current reality and I wonder: why I still choose to live this wounded and broken, life(?). Parker, Dorothy that is, in all her glory and folly calls on me, again, to live another day for while increasingly troublesome, my vision endeavors to see, that “cherry bough gone white with Spring,” and so I walk on, desperately seeking; the next “prettiest, thing.” ~Marcela: not done yet, according to Parker anyway. 02, 02, 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.”
Words are all I have, to tame the chaos; you have wrought upon every organ, in my body. Words are all I have, to quell the havocs; you have wreaked in every crevasse, of my world. Words are all I have ever truly loved, in the ‘doing’ of life, in the doing of work, in the doing of art; in the ‘doing’ of self. I cannot hate you, for you do precisely as I; battle for survival, at the other’s expense. But I cannot accept you, for to do so is to accept a life; unequivocally, unacceptable, to me. My words, my mind, my life's blood; You will not take these from me, Lyme. Marcela: Desperately seeking: back to words. October 14, 2019
Writing and Photographs: All Rights Reserved.
Acceptance, of what is, right-the-fuck-now, OK OK, after letting it sink in and everything that goes with that, has been one of three key strategies, that have allowed me to focus on what I need to do, am able to do, is within my power to do, in my current, and really, any other, battle, Bitch-Slappy life circumstance, no matter how heinous it is.
The other key strategy, is Clearing my path along the way, of any remaining detritus, internal and external, that would hamper my progress. Progress as defined solely by my three remaining personalities, me, myself and I. Even if that clearing involves long overdue dust-bunny collection in the deep dark ‘false loyalty’ corners of my world.
Acceptance, in my world-view and definition, does not equal ‘liking’ any given circumstance or situation, does not mean co-signing very bad, often very harmful behaviour, on the part of others, and certainly, it does not mean that I don’t get angry about shit. It means that when I accept that this, whatever ‘this’ is, is happening this way, right-the-fuck-now, I create the space I need, to take whatever next step I believe to be the right one, for my particular, ever-changing circumstances, needs, wants even.
This then by direct extension, leads to a third key strategy: Know thyself first and foremost. As horrific as this series of systemically heinous, physically debilitating, psychologically terrifying and emotionally taxing events have been*, even with all the various personal work and other bitch-slappy events I have navigated, triumphed through over the years, as horrific as this has been, nothing has taught me more about myself, who I am at the very core, what and whom I can and won’t tolerate and have in my life, how I do what I do in my life, and how I will go about more clearly identifying, creating, that which I desire, for whatever time I have left in this skin. It has also shown me that many of the dust bunnies, have, have always had, a very skewed and just plain wrong concept, of everything me, or not bothered to notice that things, people, change over time, through continuing personal work for sure, but most especially when lifey-life-bitch-slapping forces my/our hand(s).
Like spidey outside my front door, I have learned that a mostly invisible, deceptively strong web, of internal and external resources, and hard, incessant, ‘webbing’ work, is a smart strategy, now, as it always has been. But never smarter, in a world and time where the expectation norm is silver bullets, blaming others, and money for nothing, that elusive pot of gold… but some of those, are other thinkings out loud… So for now, I will bid you a fine day, and continue to utilize the ACK method of navigating this thing we call life.
~Marcela: webbing like a madd-woman, slapping back the Beasts, and sweeping up the dust bunnies.
September 18, 2019
*A ccept what is, right-the-fuck-now!
C lear your path of detritus and dust bunnies lurking in dark corners!
K now self, learn self, never stop learning self!
**No-one in my ever-shrinking circle, no-one but my Naturopath and I, knows the true extent of what this has done to my body and capacities. And perhaps my many words here, and in other forums in recent days, are a screaming testament to the effectiveness of the new/old drug I am treating with (very off label, experimental use for me and others waging Beast battles), because just a few months ago, I was heading, at an alarming speed, toward complete inability to remember, or make words come out of my mouth, complete inability to string even the simplest sentence together on a page, or have a coherent thought, never mind the heart/vision/joint/muscle/kidney/neuropathy and myriad other ‘stuff.’
Writing and photos: All rights reserved, please share with attribution, because plagiarism sucks the big one, and not in any good way, at all.
I understand, why people want to, or do, take themselves out, choose to end their lives, their suffering, because of this thing, Lyme disease and its co-infections like Bartonella and Babesia, to name just two (see ref. 1). I understand, why it is a viable solution, to end the degradation, dismissal, derision, disrespect, and disdain, of not only those working in the sick-care systems (worldwide), but even of folks in their closest circles, and even of those who also suffer, or have suffered, these illnesses. For the handling of these illnesses, the myriad misconception and full-on ignorance of them, in both the mainstream and Naturopathic communities, has created multi-systemic (political/medical/personal) discord, disagreement, controversy, mis- and non-diagnosis (2) & (3) and I understand, for I am one of them.
I understand, because the disease(s) in and of themselves and the havocs they wreak on every system of the human body are brutal, serious, life-altering, often crippling, potentially deadly, and they manifest differently in different humans, depending on if/when they were diagnosed, if, they/we were treated, and with what, and when.
I understand, for just like me, they are skilled and adaptive survivalists, these bugs; transmuting transformers, and they play hide’n seek with the adeptness and skill of a lion stalking its prey in the Serengeti. They are beasts, for real-for real. Personally, I have an ever-changing array of symptoms which at any given time include neuropathy and other neurological issues, frightening and serious heart palpitations and other heart issues, debilitating kidney pain issues (I’ve literally peed blood more than once), joint issues, breathing (constant air hunger) issues, blood (anemia) issues, crippling pain issues, a multitude of serious vision issues, pounding pressure in my head issues, and white lesions in my brain documented (by an MRI) and categorically dismissed as ‘nothing to worry about,’ by both a Neurologist and my (ex)GP. And I suffer a hundred other, issues, and my scores on an empirically tested-for-validity screening tool used for clinical diagnosis of Lyme and Co. (4) & (5), were OFF the charts, literally, off the charts.
But clearly, none of this is brutal enough, for my (ex)GP to, and I quote, “believe in chronic Lyme.” Chronic is her word, I never mentioned it in the endless, always-ending-in-tears-in-my-car appointments with her (and others) since last December, and it is not brutal enough for me to get any MD to a) retest me for Lyme and Co (see below for more on that entire mess), and b) to engage with me in anything more than absolute and utter dismissal once they hear that I am working with someone else, it is not brutal enough for any of them to follow me on this unplanned and unwanted journey, because I need regular blood work and ‘someone else,’ is not allowed in our flawed system, to requisition it.
The sole reason that I remain walking and talking, at times barely, is because of that someone else, my well-informed, open- minded, and constantly curious Naturopathic Doctor. She understands these bugs (as well as anyone really can at this point), and has done the work to have (pharma) prescriptive rights, at least as far as our flawed system allows any ND to have those rights. The sole reason I am able to function at all, is a Naturopathic doctor whose own GP has labeled her as ‘just an anxious young mother,’ because she too, has Lyme disease. Her own child, may have congenital Lyme disease (6) & (7). Unlike so many of us, and in her own words, she had a ‘screamingly positive lab test,’ and like so many of us, DESPITE that, she is just as dismissed, just as derided, just as disrespected, by her own GP.
I understand why people walk out of Dr’s offices crying because their tests came back negative, I did, because it means that they/we have nothing, nothing at all to back up, effectively treat, their/our mile-long symptom lists (4), and their/our ever deteriorating physical, financial, psychological, spiritual and emotional health. The two-tiered testing system in Canada/North America is flawed beyond belief for a thousand and one reasons, but you can read more about that for yourself in reference (8).
And even for the folks who manage to get a reasonably accurate diagnosis, or are lucky enough, for it is truly a lottery, to have/find an open-minded enough, never mind Lyme-literate MD, treatment is not simple or straightforward by any stretch of the imagination, because ‘transformers, hiders, mimickers, the ultimate eluders, like me, the greatest of great pretenders’ (9). For that is what I do, every day, pretend that I am alive. I pretend it with my work-folks (clients/patients), I pretend it with my colleagues, I pretend it at the gas station, at the grocery store, and I pretend it during the rare-to-never interactions I have with friends and family.
I understand because adding injury (literally) to insult, many of the known and widely used pharma interventions only serve to send the beasts further into hiding (10) whether via the bio-films or cysts they create, which (the hiding) is then too often perceived or labeled as ‘remission,’ cure, even. More often than not, the antibiotic and other drug cocktail treatments used are creating an environment in the body that is ideal for what are known as chronic, persistent and/or late stage Lyme. A further complex reality is that (too) many folks are not host to just one bug, and because there are many strains, of each of them, and not all of them are bacterial in nature, Babesia for example, is a Malaria like blood parasite, so by direct extension, the beasts are extremely difficult to a) diagnose correctly and b) treat effectively, never-mind eradicate.
I understand, because like so many others, I have exhausted my financial (never mind the physical/psychological/emotional) resources just to stay on my feet, and while many of the pharma and other drugs I have used/am using have been/are, at least partially doing their job, a job, I am beyond exhausted by literally working full-time just to work full-time just to stay on my feet, and barely, keep a roof over my head. And while I understand, fully, why the true eradication of these beasts is a marathon and not a sprint (see ref. (8), (9) and (10), like so many others, I question almost daily, whether I have anything left, that is worth continuing down this, the ugliest, the most contradictory, most complex, most debilitating of rabbit holes I have yet fallen into, and we know I’ve been down a few, self- and other inflicted, over the years.
I understand because, how we are treated, my co-sufferers and I, mega-thousands in the groups I have chosen to engage in alone; dismissed, humiliated, patronized, ignored, mis and undiagnosed, is perhaps the greater travesty, and tragedy, the most savage brutality, of it all.
“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
– Dr. Kenneth Liegner (11) & (12)
I understand because along with (one) of the many known bacteria that cause Lyme disease, I am very likely host to Babesia, and possibly other, Beasts And please hear this: I am not contemptuous of the Beasts. The bugs are only doing what any living organism, including humans, does to survive; we feed off another. The damage inflicted by the (in)humans, however, those in positions of power that they either lord over us, or refuse to use as a method, a tool to support us with, is a bigger affront and travesty than anything the bugs are doing, for they do not think or feel. The (in)humans, however, make blindered, boxed, defensive, uninformed, CHOICES. Choices that contribute to the ruin and relegation to bare survival, of (too) many a human life and potential, just like mine. It is nothing short of hilariously, painfully ironic, to the point of utter and complete idiocy, that the roof over my head, the food in my fridge, the pay in my bank account, are supplied by, the very ‘sick-care’ system that brutalizes me every.single.time I have to engage with it, the (in)humans in it, on my own behalf, in regard to this illness.
I am NOT, let me be very clear, NOT a fan of Donald Rumsfeld, and it makes me a bit sick to repeat anything he has said as worthwhile, but in the context of Lyme and its many complexities and co-infectious friends, it fits because a position of not knowing everything about anything, is always a good way to stay teachable, and to my mind, always desirable, but most especially so, within the context of this, my and others’ current reality.
“….as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns — the ones we don’t know we don’t know.”
I understand why people exhaust their resources, all of them, trying to know more, trying to get better when convention has failed us at every.single.step of the way. I understand why people from every walk of life and in every socio-economic and cultural group and status known to human kind jump onto every mainstream and alternative therapy bandwagon. And I understand why at the end of the financial, physical, emotional, psychological and social-support road(s), when our bodies, our minds, our hearts, our relationships, our self-worth and our self-esteem lie broken and bleeding on the ground behind us, people want to, and do, take themselves out. I understand so fully I can taste it, the why, of people choosing to end their lives, because of this thing, Lyme and it’s co-Beasts, the sick-care system, the rabbit holes of social-media ‘medicine,’ and the (in)humans, inhabiting all of it.
None of this means I want to kill myself, or have any plan to do so, for I do NOT. It means I understand why people want to. It means I understand why they do (13). I always have, in regard to other traumas in former incarnations of my life in this skin, but never this deeply, this profoundly, until now. And if you have read this far, and have at least taken a peek at the references I have laboriously and purposefully chosen for you, out of hundreds collected since last December, you will, I can only hope, better understand me (and others), where I’m at right now, why I am exhausted by the diseases, as much as I am by having to become my own doctor and researcher so much of the time, and what my next step will be
Any and all comments that I do not find helpful, or kind, will be unceremoniously deleted, and the commenter’s presence in my life, in electronic and/or real-realities, just as unceremoniously, dismissed. That, is how much space I have left for people with anything but true compassion, empathy, and even more importantly, REAL critical thinking skills.
All my love to those of you who continue to qualify in the desired categories noted directly above,
August 11, 2019
Postscript: I will not, cannot respond to, and will delete any questions and/or messages specific to my illness and/or treatments, or who my ND is, and will write a separate piece in the near future with a timeline of my undesired acquaintance with these Beasts and what I have learned, what I have done/am doing about it, along with my anecdotal evidence of the efficacy (or not), of any and all of it to date. And while I want to support others in this same leaky boat, and it is most certainly a part of why I went to great lengths to put this together in the first place, at this juncture anyway, I am literally just barely keeping my own head above water. So if you are in my boat, thank you, I love you, I get it, but I can only help myself stay afloat in this moment.
“Patriotism is the last refuge of the scoundrel.”
He was a very clever man, and I still won’t, can’t, wave a Patriot flag!
I love Canada. a handful of years ago today, as a matter of fact, I was on many airplanes, traveling back to Canada from a going home(s) tour with the two humans I love most, my mother and my ManChild. We (my mom, dad and brother and I) came as refugee-immigrants when I was 7 and I have lived here on and off for almost 4 decades of my almost 58 years on this planet. I also love the Czech Republic. I was born there when it was still Czechoslovakia and we lived there until the former Soviet Union chose to liberate us, with their tanks and their army. (BOOM! Think about this, no, I mean just think about why they thought they could/should roll in, in the context of this missive). And, I love Switzerland. I lived there for 13 years while trying to escape me and the internal stuff I carried from happenings to and around me in the Czech Republic and Canada.
All of these places are home to me, the various towns and cities I have inhabited in these countries are all my ‘home-towns,’ and I make only the distinction that one of them is/was my original home town, because I was born there. I made connections, I loved, I lost, I laughed, I cried, I worked, I got married, I got divorced, I had a child, I raised step children, I fucked up, I cleaned up my messes, I did it all again. I LIVED, functioned, contributed, in all of these places.
From the time I was a small child I could not, for the life of me, understand the vigor with which some of the natural born-natives, and I use that term loosely, of these countries, posited their better-dom (yes, that is a word), over other folks, including quasi-Canadians, wanna-be Swiss, or even smarter-than-the-Slovaks-Czechs, when we were still one country.
This is important: I am not ungrateful to have had a place like Canada to come to when those pushy Soviets rolled in so rudely, as I sat on my grandma Mrnka’s knee in Karlovy Vary, on that memorable August day in 1968 (revisit BOOM, here). I am not ungrateful to have had an opportunity to live and love in Switzerland (even if I had to marry an asshole to do it in the beginning), when I found myself in serious peril as the result of keeping the company of some very unsavoury Vancouverites, and had to conduct a speedy exit. I am not ungrateful that years later, I was able to return to the place my dad traded his life for, in order that my brother and mom and I, could have one.
My point, quick and dirty: I am not a patriot. The word itself, its etymology and various incarnations are problematic for me, but you can check it out for yourself. There is little tying said word to the commonalities we share with every single, culture and ethnicity on this planet, patience, I am getting there. I am also not ethnocentric. Again, please do check out its origins. From patriotism to ethnocentricity we come to: there is no space in those two ways of being, without crossing the line of racism. I do my damn-est not to be a racist. Admittedly, I have had it much easier as an outsider sporting my lily white skin, fitting into ‘foreign’ cultures like Canada and Switzerland, and other countries I have visited, than individuals of a different epidermal hue, and I recognize this as an unearned privilege. Three words, patriotism, ethnocentricity, racism: all connected, all lead to every single one of the world issues we have going on, in combination of why most wars are actually waged. War is not about peace and freedom is not, cannot be, about taking it away from others. Wealth is not about raping and pillaging this planet’s resources so the superior folks have (more than) enough by creating poverty and suffering, and then blaming those whose suffering they have created, for their inadequacy.
From where I sit, we are one type of two-legged, upright humanoid with a number of sub-types based on geography and culture, one home world as we know it. The research is not united, and frankly I don’t actually give a flying fuck about whether we all stem from one woman somewhere in the African desert, if we are all mongrels, or if any or all of us are aliens who came in on the Tardis with Dr. Who. Genetic research ought to be used well for all our benefit, not abused to create more reasons for fear and hate of ‘other.’ Everything else is politically and socially constructed and geographically determined, and more importantly, it is driven by the almighty dollar, dinar, koruna, frank, euro, gold, silver, shit, call it what you will. It is about money, power and fear mongering, fundamentalism, fanaticism and greed, plain old, greed, and better-than-ism. Yes, that is a word, also.
So no, I still won’t fly my patriot flag today, or any other day, at least not any higher than I would for anywhere else I have enjoyed living, or visited.
~Marcela: Unapologetically yours, and with the utmost gratitude for all my home(s), past, present and future, cause I’m not done here yet.
Edited: July 01, 2019, from original, written July 01, 2016
(Post image courtesy of Google search ‘earth heart.’)