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I Understand Why They Kill Themselves

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 my work-folks, 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 ironic, to the point of utter and complete idiocy, that I rely on for the roof over my head and food in my fridge, am currently employed by, one of the very systems that brutalizes me every.single.time I have to engage with it, the (in)humans in it, on my own behalf.

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.”

-Donald Rumsfeld

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,

~Marcela.

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.

References

  1. https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
  2. http://danielcameronmd.com/misdiagnosing-lyme-disease/
  3. https://www.ninds.nih.gov/Disorders/All-Disorders/Neurological-Complications-Lyme-Disease-Information-Page
  4. http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590688/
  6. https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer/
  7. https://blogs.scientificamerican.com/observations/when-lyme-disease-strikes-an-unborn-child/
  8. https://www.columbia-lyme.org/diagnosis?fbclid=IwAR1VDi_s9LY7ZxyUzIULChWQEsr7VXzJC7cxWswwTPr-ppiVapZr6SYzgMo
  9. https://www.psychologytoday.com/us/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0
  10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
  11. https://www.researchgate.net/scientific-contributions/5985449_Kenneth_B_Liegner
  12. https://www.mdpi.com/2079-6382/8/2/72/htm
  13. https://www.lymedisease.org/anthropologist-lyme-suicide/

 

 

 

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Why I (still) won’t wave a patriot flag on Canada Day, or any day.

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 Oscar Wilde Said:

“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.’)

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Quackery Wackery Dock: This Poem IS To/About Me

 

Quackery Wackery Dock, ye, yes ye, our Quackdom Queen,

hath doth run out of socks!

Tho multitudinous, thy choice of footwear, and never (ever), lacking frocks,

a fine mess ye royal dressing chamber, so tidy, clean and launder,

ere thy head done doth befound itself, on ye olde chopping block!

June 30, 2019

~Marcela: taking poetic license and squishing lines… rebel rebel, but doing it, as ever, finely and fun-ly clad, for I have indulged my penchant, for (too) many choices… let it be known, however, that most often, this Queen prefers to purchase previously loved (thereby planet friendly), high end/well-made (thereby lasting a very long time), attire and previously noted multitudinous pairs of footwear.

Day 2: Who was the last person you texted? Write a five line poem to that person.

It so happens, that I was the last person I texted. I often send myself reminders, and this one was about some measurement or other in ye Royal Dressing Chamber, the last room in the new Quackdom, still requiring significant attention…

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M A R C E L A: This Poem is Not About Me…

Moralistically meager,

Arbitrarily ardent,

Rectitude and righteous ‘truth(s)’

Creep calculatingly closer,

Ever encroaching into their thoughts, while

Lackadaisically lacking(?), their very

Acquiescences.

June 29, 2017
~Marcela, playing by the rules, how odd, how very very odd…  aaahh, but there is method to my Maddness:

Day 1: Write a poem where each line starts with a letter from your first name (an acrostic). It can be about anything, but it should not be about you or your name.

Check this out if you want to learn more about Psychopolitics: 

Image courtesy Depositphotos.com

 

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The Unlikeliest Catch

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My oppositional flailings
to the expectation-less relationship
you desired,
have inadvertently
weathered my person
into a deepening of spirit,
reminiscent of the sea-years
etched upon your face
dearest Sailor.

With the persistence
of waves on stone
at the seashore,
these flailings and failings
have smoothed
harmful rough edges,
jagged bits of a younger, old me
no longer useful
to anyone.

And I am grateful.
Not despite,
but because of,
that which my net
failed to capture.

~Marcela: version 57.9 despite myself.
June 22, 2019

__________________________

"Let there be no purpose in friendship save the deepening of the 
spirit. For love that seeks aught but the disclosure of its own 
mystery is not love but a net cast forth: and only the 
unprofitable is caught."
-kahlil Gibran

Interestingly enough, I deliberately cast a net a few years ago, 
and in so doing, despite my oppositional flailings against its 
very nature, the 'catch' quite inadvertently developed, 
through a love and friendship unlike any other I have known, 
into a profound deepening of my spirit, one not unlike what 
Mr. Gibran speaks of. 
~M.Y.M. 

Kahlil Gibran quote from Google Search
Poetry and Image: All Rights Reserved Marcela Mrnka, please share 
but do attribute. Thank you. 
~M.

 

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This is NOT a Sob Story: Part Two: Missive from/to a Salty-Sailor

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From: John R Sent: Friday, May 24, 2019 11:33 PMTo: Marcela Yvonne Subject: Re: Just wondering….

Yo babe….
How are things at your end? I hope summer has arrived there.  It has only been the last couple of days that it has warmed up here. Prague, Vienna, Zagreb, Ljubljana, Belgrad, Prishtina,  Sarajevo all required sweater and jacket.  Here in Mostar was hot yesterday.  Just waiting for a bus to Budva in Montenegro right now. It seems all the train tracks were blown up in the war here in the 1990s… and have not been replaced. From Budva, it will be in to Albania then Greece…
So what has been turning your world upside down? Give me the Reader’s Digest version.. not just the headlines!  I hope you are _________ blankety-blank-blank (because some things are just too precious to share).
Hugs
Zeke

From: Marcela Yvonne Sent: Friday, May 25, 2019 12:47 PM To: John R Subject: Not a quick story / Re: Just wondering….

Sailorman! I’m just relaxing in my new-ish, light-filled, bedroom (feels like a bit of a tree house :), sipping the Saturday morning/noon cuppa Joe,  wondering what his Salty-ness is up to, where on earth his Sexy-assed-self is parked right about now, and then there you be, right in my lappy! The shit storm(s) is/are a big story… the Reader’s Digest is that I have Lyme disease. It got ugly. It’s what started all those bizarre symptoms in the winter, probably been hiding in my body for years (not uncommon at all), triggered by who-knows-what, the possibilities in my world specifically are endless… and because it’s me, and my never-straightforward life, I couldn’t just pick an easy disease, you know, one where you have symptoms, they test, they find it, they diagnose it, they treat it, you live or you die. No no no! I have to pick one that is as politically as it is medically contentious, argued/denied, yes full on denied, controversial, impossible in every way including (mis/un) diagnosis and no treatment works the same for everyone and where it and possible co-infections are at in their body. My (ex) GP literally said this: “I, and many of my colleagues, don’t believe in chronic Lyme disease.” Where the fuck do you go with that? We vaccinate pets and farm animals against it… but they don’t ‘believe’ in it? No seriously? Where the fuck does one go with that?

In any case, thank my own resourcefulness and my Ungods, I’ve had a really great Naturopath in my back pocket for years now (because the mainstream wasn’t doing anything useful for me years ago, either), and she has prescription rights if I decide to go the pharma route. She also has Lyme and even before I knew that, I have always trusted her, fully, unlike previously noted (the real quack) GP. No treatment for this beast is straightforward or simple and pharma-antibiotics are problematic for a thousand and one reasons specific to this/these bug(s) so, there is no quick and dirty fix. I’m taking all manner of things and it is actually working, at times making it worse/before better, but that’s how it works, and costing me buxx I don’t have to spare, but that’s how it works :) It turns out that many of the herbals and my own witches brew that I’ve been making/using for years to keep that annoying virus in my body at bay, also have antibiotic properties, antimicrobial (Lyme/Borrelia in its many incarnations is a bacteria), so quite inadvertently, I have been suppressing its havocs for some time. If I ate garbage food, didn’t exercise regularly and other bla bla, I likely would have been sick years ago. Sweat, elimination, in all its various forms, is one of the keys to getting this thing out, it likes to hide and morph, and in the words of said Naturopath, it is a marathon, not a sprint. Realistically, so is any other serious illness, including cancer and some of the other ones less controversial, in this moment, because they all were/are, at some point. This past week is the first time in many months that I have felt almost OK, it’s on the upswing, and I have so much more big-story on all of it, but that is almost enough of that.

I work really hard at not going down the various rabbit holes around it, it has been nothing short of traumatizing because of all the bullshit around it, never mind the seriously big, seriously scary manifestations and myriad crazy symptoms I was having, it impacts every.single.system in the human body, and is a transformer… between all that and the full on dismissal by previously noted (ex)GP, she just doesn’t know that bit yet, I have my reasons, it has been one of my life’s biggest hells, and we know I’ve seen a few… maybe more than reader’s digest, sorry/not sorry, it isn’t a quick thing in any regard, always prompts big questions from others, so I’ve just tried to pre-empt some of those, for your benefit, and mine.

Also, my world feels upside down cause my mama’s been diagnosed (finally) with Parkinson’s, and really, in her (translated) words, if we’re going to get that particular horribleness, one’s eighties is a much better time than for example one of my clients, our age, or younger. Medication has made a huge difference and she is also doing better than she has in a long long time. My SunnyBoyManchild was an inadvertent auditory-witness to the horrific murder of someone in the suite directly above him in his building, just a short time ago, so my most-loved humans and I have not had an easy time of it in recent weeks and months. Thanks for asking Sailorman, a lot, it means something.

On a better note, moving in here was a challenge (huge understatement) because of the above getting worse and worse, and really crappy space planning on the landfolks’s part, but it’s coming together, has also cost more money/energy than I have, and there is lots left to do, but I’m loving it now, have even had enough energy in the last week to explore, look for trails, spend a bit of time down at Transfer beach… found the marina, and fondly thought about the other one I know, the Lady Jezebel and her Sexy-assed man at the helm… I’m loving Ladysmith so much more than I thought I would, and 30 minutes max door-to-door for work is an absolute luxury. I love this new-ish job, cause if I have to work 5 days a week at this stage to barely make ends meet, that really needs to be the case, so it certainly helps in the grand scheme of things.

Summer/balmy spring comes once in a while, it is raining today, not a bad thing, the Duncan area is already mumbling ‘drought,’ and Alberta is already on fire… decent weather predicted for tomorrow, really hoping to get to the beach for an hour or two, and then a simple trail jaunt… it’s so lovely to have enough time left in work days/weekends because I’m not constantly trying to ‘get somewhere,’ or maintaining a ridiculous house and property. If Ima pay someone else’s mortgage, it needs to be like this. Summary: it’s getting good in the hood again SaltySailorman. Big big lessons in all shapes and sizes in all of it for me, and it has all forced a bit of a Marcela-mellowing that is challenging to articulate, but welcome, very welcome, for sure.

Your adventures sound absolutely grand, and I am not a bit jealous, I am full on fucking envious and marvel at how well you have worked this entire life thing out! If I can’t be doing it myself, I am happy to enjoy it in the form of your missives. I LOVED Mostar, that entire part of the world… I was heartbroken when I learned during that war that that most amazing bridge had been destroyed! I spent a month the summer of my 25th birthday in Dubrovnik and its surrounding areas with my mama and step-papa, that was before that particular war, it was stunning, just fucking stunning! Did you get to Plitvice? It’s Sunny’s dream, he is a water(fall) hound, nature nut, like the mama.

___________ blankety-blank-blank (because some things are simply too precious to share…). I’m looking at all these words and thinking oh dear, I’ve written a book, but that dear Sailorman, is what writers do. And I am nothing, if not that. Big brain fog and all. I hope your tribe is well, (almost)new-grand baby and all! Clearly, you are. Yay! Hugs back Sexy-assed SailorZeke, and smooches, and _________blankety-blank-blank, always…

xoxo

~M/F.

Writing and Zeke/Marcela Photographs are mine, image of the Original Mostar Bridge located via Google Image Search:

 

 

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This is NOT a Sob Story: Part I

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This is NOT a sob story and it is just the beginning.

The more I learn about this thing, and trace back to what at first glance appeared to be unrelated ‘health issues’ over the last couple/three years, Hashimotos is just a single example out of many, the more I understand this ‘thing,’ and the angrier I get with my (ex)GP and the mainstream healthcare system.

I have had to become my own doctor in so many ways, and so much of my (and others) suffering could have been pre-empted, treatment could have been so much simpler had a few connections been made, that I have now made myself. There could be a thousand and one reasons I tested negative for Lyme, including the fact that it may well be different bacteria, with very similar, equally serious symptoms, and/or, how we test for Lyme remains inadequate at best, and negligently pathetic at worst, resulting in many (documented) false negatives. Whichever it is, I am well beyond ‘acute’ which is the most treatable phase of this beast, well beyond ‘chronic,’ into the third phase, which impacts every single part of my body, every single system.

Some days the only thing I can do is stand, because sitting is too painful… and that’s just the tip of the symptom iceberg… Game changer does not begin to describe it, this thing. In a pm conversation with my BFF, I likened it to addiction, in that it morphs, hides, changes, is resistant to treatment for all of those reasons, just as stigmatized, judged (but you don’t look sick… fuck you!), and mis-understood.

The mainstream healthcare system did fuck all to support me in that battle, why the fuck would I be so delusional as to think they will help me with this one! No seriously? Why? This is not a sob story, this is my reality, it is complex, brutal, and there is no quick fix. So if you find it overwhelming (imagine how I feel?), fuck the fuck off already, permanently. Don’t bother just unfollowing or snoozing, please, that is so fucking passive-aggressive that it seriously brings out the ‘violent’ in my hard-core anti-violence stance. Stupid as they generally are, some interwebs memes are at least accurate: “…if you can’t take me at my worst, you do not deserve me at my best…”
~Marcela.
Crown in place, at the bottom of the sea floor, closely guarded by PinkFish and her compagnons silver fishes… Don: like my other favourite artist, Vincent, you lay the paint on thick, in layers, because real stories cannot be told in veneers and with thinly brushed, watery strokes, for the truth, rarely lies at the surface.. I love you, and you MySue. I would drown without both of you right now.

PinkFish – original art by Don Bruce, Terrace BC

Writing and Photographs: please share if so inclined but do refrain from plagiarizing and using photographs without permission. Thank you.

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Madam Bitch-Slappy

In my vertigo-ed state
I lurched to my perch,
for the water-coloured sky
changed as quickly,
as Life-Dom Madam Bitch-Slappy,
has changed mine…

~Marcela.

May 7, 2019
Photographs and Writing: All Rights Reserved

 

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No Permanent Affliction

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The truth is:
There is no permanent affliction or injury
physical; emotional or psychological,
sustained in the day to day sport of human living.

The truth is:
There are only innings, periods, heats and quarters
of battle, endurance, triumph or loss
in this game called life.

The Truth is:
the ether or some mystical inhabitant of it
keeps not, (y)our score of wins or losses, deserved and not
you and I, solely, are umpire, referee, and judge.

The truth is:
There is no permanent affliction
physical, emotional or psychological
only Game Changers
permanence and winning are a Lie.

So play the game
play it well,
play it now. 

~Marcela.
May 03, 2019.


An intruder has taken up squatter’s rights in my body.
Whether microbial, myco-toxic, fungal or parasitic (all four?)
in nature, it is fucking me up but good: my hair is falling out, 
there are moments during which I feel like I'm going to have a 
seizure any minute, I can't feel my limbs half the time and the 
other half it feels like something is crawling around inside them, 
or biting me, from the inside out. My kidneys hurt all the time, 
my vision has taken a beating, it is blurry half the time, 
my eyes are pinned all the time, and I see floating spots 
every time I blink. I have a constant 'cold,' I am in physical 
pain all the time, it ‘travels,’ my ears ring most of the time, 
I sound like a crack whore, I have had a tooth (molar) removed 
because my (awesome) dentist and I thought maybe the numbness 
was because of that, way back in December, when things first 
started. That hole in my mouth severely impacts my ability to 
eat certain things and the way I talk. I talk for a living.

I have been treated (to the tune of what is adding up to 
thousands of dollars) by my (awesome) naturopath for (potential) 
mold/mycotoxin illness and parasites, gotten rid of furniture I 
can’t afford to replace because potential mycotoxins, taken more 
(unpaid) time off work, lost too much income, to travel and see 
the most useless doctor on earth almost weekly for pretty much 5 
months (here, have some anti-anxiety meds and/or pain killers… 
no, thank you anyway…), and everything I have/am experiencing 
points to Lyme, or some other bacterial/parasitic/fungal thing, 
but she does ‘not believe’ in that, ‘does not have time’ for 20 
different things, symptoms ( but that’s how Lyme, and other less 
common microbes work in the human body) in one visit or 40, 
couldn’t be bothered to test for anything outside her limited 
box, and literally gets (intimidation) uppity when I mention 
anything I have talked about (including Lyme) with other health 
care professionals.

The list of her endless negligence and tyranny toward me is so 
big and hurts so bad I can’t even go there. It is safe to say 
that other than pregnancy when they said I couldn’t, I have 
never hoped for a ‘positive’ test result from a healthcare 
professional in my life, until now. The walk-in doc I saw in 
Nanaimo last week gave me no useful news yesterday, and won’t 
take me on as a patient because he’s leaving that clinic anyway… 
but he did give me the name of another doc there, and I managed 
to get an appointment with her for next week. In keeping with 
the recurring theme in my life, none of this is straightforward 
and it might even go way back to something I may have picked up 
working at the hospital in Duncan about 3 years ago, remember the 
Hashimotos thyroid thing (?), and I will continue to work with my 
naturopath, who unlike the ex-GP, is not intimated by other 
perspectives, mainstream medicine or the folks in it, 
she believes they should all work in a complimentary and 
collaborative way. Yeah, me too, but it feels like that is 
so far away from what we have that it borders on wishful 
thinking and we all know how I feel about that shit.

I am not giving up, while at the same time, 
working extraordinarily hard not to let my anger 
and hurt consume me, for it is not productive, 
harms me more, and attempting to regain some measure of life 
quality, while working full time (there is very little choice 
here) in a field and area of said field, which requires my full 
physical, mental and psychological acuity. I am out of energy, 
out money and out of credit, but I repeat, more to hear it myself 
than for your benefit, I am not giving up. 

She is a brutal fucking bitch at times, this game called life, 
and she is in a particularly bitch-slappy mood at this juncture. 
What she doesn’t know however, is that at least in this very 
moment, right here, right now, so am I.

~Marcela: Battling, unwell, wielding all power toward 
living, for survival is no longer an option I am inclined to 
entertain.

The Score

Illness: 5 (months, maybe years…)
Marcela: 1 (tenous)
GP: Useless but winning, because safely swathed, in God-like 
white coat, and unbeknownst to her, fired.

PS: Please, oh please, spare me the ‘you got this,’ and any 
manner of ‘positive energy’ and other platitudes. And please, 
oh please, respect my beliefs by not, under any circumstances 
praying for my Atheistic-Realist soul, in the same way I don't 
atheist all over your posts/struggles/issues/triumphs... 
for the only defense I have left for this manner of 
un-helpfulness, is delete and block. No tackle left for 
bullshit, not a smidge. Comments the likes of ‘this sucks ass,’ 
are so much more meaningful, as are none at all, if positivity 
and prayer are all you know how to do to support someone in pain. 
Thanks.

PPS: If I have to 'deal,' with whatever is eating me alive, 
I will do it wearing cherries and polka-spots...



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Open Letter To A Salty Sailor: Less, the Ultimate More

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Dear John (yeah I did that, again)! I write these words as nothing more, or less, than information. Know that, first and foremost. They change, complicate, nothing, or everything, as the case may be.

You, the man I have come to know and appreciate as ‘Your Sexy-Ass Saltiness,’ and your trusty (real)steel steed, Marty the Sexy-Ass vintage Mercedes,

embarked upon the first leg of your current adventure, some weeks ago now.

I met your recent text update with both pure, unadulterated pleasure, and not a bit of envy, but a great lump of it!  When I read in your missive that with friends and family visited, and Marty safely stored in Manitoba, the real adventure part finally began, as you sat in a train station, awaiting your East bound train.

And my ripe imagination envisaged your chill, sexy-ass self, man of many names, many adventures and few words, doing exactly that, which pleases you most. For you are, that unlikeliest of souls, a true traveler, not, in your words, ‘a vacationer.’ I imagined you at that train station, smoke in hand, looking something like a cross between Hemmingway and Van Gogh (two of my historical heros), on a train station bench, outside… because smoke in hand… and then on the train, bumping along the tracks, living in that exact moment, eyes out the window. Perhaps you were thinking about the boarding of that freighter in Halifax, disembarking in Liverpool, and traipsing ‘cross many a country to this adventure’s ultimate goal, mother Russia, and her many parts unknown. But those thoughts never stray too far from that which is right in front of you, and I imagined you applying your vast knowledge of world histories to it, that which is right in front of you, right now, in the moment. For you are, among so many other things, a master of that art, and I have learned by observing you in moments we have shared. I have been paying attention.

To your words, but more importantly, to your actions, and always, to your quiet.

You are a skilled, gifted, even if inadvertent, instructor.

I have thought a great deal lately. I have thought of many things, including of those pertaining to your role in my world, not the least of which, is that you have already been, and will be, gone a long while. If my various and sundry lives have taught me anything, it is that game-changing shit happens, at the drop of a dime, often leaving us with little to no opportunity for communicating the important stuff, to those we are connected with. And so given some of the game-changers thrown at me, historically and in more recent times, I am compelled to articulate previously noted words, for I feel it is important that you know, this:

I appreciate your part in my life Sailorman Zeke. I care about you. The unintentional but most powerful tutelage of our dalliance, has been the source of more insight about myself, and what it is that I really want out of my remaining time here, than most things. And that right there, is a big-ass statement in and of itself, for it is not news that I have lived/led/survived/crashed in/resurrected, more lives, than most folks get, in just one skin.

In happening, quite intentionally, for we know I buy not, into vague and useless concepts like fate, but I digress, how odd… in the intentional happening across that which I believed not to be for me, you, your presence, your particular way of being, in the world, in relationship, and in my life specifically, I have experienced, and mostly enjoyed something that has evolved from (in your words following our first ‘date’), “pleasant enough,” to rude awakening, to something that I am challenged to describe adequately, but it is pleasing to me now, most pleasing indeed. This is important in my current world and incarnation of self and the life I am attempting to lead, while barely treading water. And perhaps more importantly than anything else, it is straightforward. It is transparent. It is uncomplicated. It is nothing more and nothing less, than what we have both agreed to, at any given moment in time. It has developed into a most satisfying surprise.

But you lead me astray yet again, in the best possible way, though astray none the less… so, to those words I have been compelled to scribe for weeks now: I believe, and I could be wrong, shockingly it has happened at least once before… I believe; that the word love is one you do not bandy about often, if at all. At this juncture, nor do I.

That said; I do harbour feelings of love for you Sailor. Interestingly, most refreshingly, they are nothing like anything I have experienced previously, they are so much more, and so much less, all at once.

More, because these feelings are grounded in a process, one which I have either not been provided here to fore, have not provided for myself, or perhaps even, could not ‘deal’ with in pasts further and more recent. The process I speak of is the space required to truly learn another. The space required not only to accept, but to appreciate those very traits, ways of being, I once found unacceptable in a sexual relationship.

More, because bereft of the traps of ownership and ex-pectations, we have afforded, each the other, and selves something only others who function this way, can know, can understand, can appreciate, can savour. More because these feelings I harbour for you are not based in fear of what I would miss without you, for I am secure in my person without any other. More, because they are based in genuine affection, respect for exactly who the other is, not that which we think they ought or desire them to be, or need them to be, to be OK with, to be OK in, our own skins.

More, because they are grounded in continuing curiosity, rather than the erroneous and arrogant trap of believing to fully ‘know,’ the other, any other, ever. More, because curiosity, in all manner of things pertaining to said dalliance and the world in general, historical and current, is what keeps us alive, truly alive, interesting, and interested, to and in self, and the other, any other, ever.

Less, so much less, in the most un-encumbering of ways, has become the ultimate more. Less, because my feelings for you are utterly bereft of, unweighted by, any semblance of clingy need. Less, because I (we) have few-to-no expectations about anything pertaining to ‘you-and-I,’ and so by direct extension, only curiosity remains, and like a full moon, it draws me in, it is enticing, always.

Less, because I feel no pressure to be anyone other than exactly who I am, at any given point in time, and I have not, even for a second, in the course of this thing I call our dalliance, wished you to be anyone, but exactly the person you are, at any given point in time. Not through the (now hilarious) miscommunications and literal ‘Dear John’ and ‘Dear M’ moments, moments of big (for me) heart ache. Not through the differences and varying life experiences informing our respective world-views, political positions, psychological and emotional places, and not through those moments when I questioned myself, because training, in previous romantic failures of proportions most epic, and (too) high prices, paid.

It has been shifting for me for a while, but the most noticeable, most profound change, came about for me last July, during that most memorable, for so many reasons, birthday voyage we shared.

The word love can be such a trap, and also not. I choose not. I choose to continue harbouring feelings of love for you Sailor, for however long, for however we choose, or not, to be connected. And I wanted you to know, because shit happens, and seemingly nothing, nothing at all, changes, complicates, everything.

So from this stark-raving Atheistic-realist of many names, to you, the quieter one of like-beliefs, but no less intensity, the sexy-ass renaissance man of few words, many names, and more real-life adventures than many a more famous traveller:

“No one’s fated or doomed to love anyone. The accidents happen.”

-Adrienne Rich

That works for me… and so do you Sailorman… so do you.

Stay safe out there Zeke… smooches,
~M. (Aka, well, you know who she is).