Rolling around Pitsanuvej Hospital, Phitsanulok, Thailand. I felt very cared for there, thanks to my “handlers”
What follows comes from my erstwhile “Healing Journal” – written/compiled on a foggy meandering journey to various countries (Pacifica, Phitsanulok, Cochin, Pokhara, Dikwella/Galle…) visiting all manner of hospitals, clinics and exploring various healing modalities and techniques.
Shared here more-or-less unedited for posterity (whatever that is) and to shed light to those struggling who might come across this riff. Please watch the “Healing Ramble, introduction” video for context on this series.
This entry, from Phitsanulok, Thailand, late 2016 was written in the weeks following – hence possible tense shifting. (Finally) organized and published May-June 2021 – i now live in Japan, am stable if far from “normal”. No comments, sympathy requested or accepted. Carry on.
Phitsanulok, Thailand, Oct. 2016~
[visited this hospital 4 times 2016-18, these notes are from the first 2 visits]
Intro: My various medical diagnoses (central sensitivity syndrome, fibromyalgia, chronic fatigue syndrome / M.E.) are generally diagnoses of elimination meaning, (in brief): finding out what it *isn’t*, and if every other possible thing can be eliminated, these are your diagnoses (given the symptoms etc. blah blah blah).
While there is extensive research for specific bio-markers for these diseases (thanks Open Medicine Foundation et al), comprehensive universal, diagnostic methods do not currently exist (and yeah i know there are loads of folks who have alternate theories, whatever, write your own spiel).
waiting for yet another bus in the rain in Vancouver – was all too much for me. holy anxiety and stress and confusion
While in my [ed note: former] home in Vancouver, Canada, these tests are certainly available, I found the process to be an extremely laborious – ergo: after waiting for specialist referral appointment and meeting, i would be sent for a couple of tests requiring a bus ride to the lab, waiting, dealing with all the commotion and pain (yes) of testing and then following up with the doctor who wouldn’t necessarily give me the “science” behind the results – just a “its fine, nothing to see here”. The results were *evidently* available on a website, which I found impossible to utilize, and the experience overall was very draining.
As such, I compiled a list of all tests I wanted to undertake, and sought a hospital at which I could do all and “own the data.”
own your data (in a cute folder!)
My thinking is, “the sooner I can eliminate all other possibilities, the sooner I can get on with a proper healing regimen and be assured I was doing everything I could to feel better and heal my body etc.”
getting sensors on for an EEG to check my brain impacted from various injuries and concussions
Kind of nervous about this project but somehow it feels like a good (or important) idea so here we go… &/or just watch :).
I deal with #MECFS a complicated complex and chronic disease (see below).
After diagnosis eight years ago (2013), I was kinda ground-up by then-local (Vancouver, Canada) medical system through challenging and ill-advised therapies, a litany of dangerous medications and laborious uneventful tests. Plus my entire life seemed to fall apart… ugh. As such I set out on a meandering journey seeking to figure out what was up with my body and brain and try to find a way forward. Continue reading Healing Ramble: #MECFS journey to Thailand, India, Nepal, Sri Lanka and onwards→
As it goes, a photo from 2013 popped into rotation today: me as usual with beard, specs and art in the background so… I snapped another quick similar pose and noted that despite the hard miles of these last seven years – all the hospitals, all the treatments, all the medication, all the stopping medications, all the loss (name it), so many dear ones passing, at least four concussion level falls & crashes (Vancouver, Adelaide, Pacifica, Chiang Mai), so much being gone gone gone lost (not wanting to be found), finding myself in harms way intentionally and otherwise, some terrible decisions, some great decisions, looking anywhere for home, not wanting to be home, forgetting about home – so many > too many places – and then somehow found – with all of “that”, I don’t look all that worse for wear.
The Buddha is quoted as saying, “to gain anything, first you must lose everything” I did and then found out that Buddha never said that – (dang *experts*). Regardless, some of what I lost, I picked back up, other parts I left behind.
Seven years which felt like 17, and i’m only scratched & dented gently & mostly on the inside. It’s good for poetry if nothing else.
70 more to go. Still. At least.
PS Noting that there was a lot of damage and a lot less smiling in “the between years”. Might share at some point, but just came here to say thanks for all your kind words and support. Almost convinced I’m worth it ?
(from a Twtr thread, here for posterity) note: find a better way to archive all this if possible
One of the most jarring and upsetting things I’ve learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune condition called myalgic encephalomyelitis (ME), is particularly horrific 1/
Hello Hannah, thank you for this respectful conversation. In 2013, my life changed overnight from ME. I was super active and invincible and it completely wiped me out… Was in bed in a fog for weeks / months then years on end. I do a little bit better now, there’s no cure…
2/ doctors shuffle you around to specialists, disbelieve you, read outdated research about “graduated exercise therapy”, send you to a psychiatrists and cognitive behavioral therapy classes, &/or just string you out on various prescriptions (ssris, benzoa, opiates), it’s brutal.
3/ So many people simply “vanish” from life, there’s scant “enthusiasm” from public supoort very little fundraising, nothing but hassle from insurance and government disability programs, Comedians joke about it, friends disappear, loads of “snake oil” and so much disrespect…
4/ Each night is an awake twisting fog, there’s no refreshing sleep, the first sensations in the “morning” or “oh my Gosh, everything hurts and where am I and what the fck has happened to my life?” and it takes everything you have just to keep clean and fed and pushing on.
5/ I lost everything – career, confidence, love, enthusiasm, hobbies, friends… Somehow some people stuck around and I took myself to a far away place to an Ayurvedic clinic to sort of “reset” myself. Then, build a new life within these new boundaries.
6/ With the current pandemic, there’s a lot more awareness suddenly springing up and I very much hope that with all of the researchers and super computers paying attention to these weird cracks in physiology, something emerges. So many lives simply become invisible from this.
7/ Many deplete any savings chasing down cures at “famous” institutes and hospitals, try every sort of supplement, IV, natural and otherwise, various therapies – anything which might give a glint of hope, then again “crash“ and fall down into sadness. Ends so badly for many.
8/ There’s an organization called “open medicine foundation” doing wonderful work and coalescing top researchers around the world and advocating for patients. From my view, more has been done in the last 2 years than the *previous however many* / A fine organization to support.
9/ There is a documentary film by @jenbrea called Unrest which raised a lot of awareness / it’s super hard (for me anyway) to watch as well, I see myself and ummm, it’s really hard. Dreams broken and infinite lost potential. The stories are important, real people, real sadness.
10/ I don’t know wish this absurd illness (alternatively called something which minimizes it and another name which is almost impossible to say!) on anyone. Sending these note out into the world in hopes of fostering understanding and please please please a cure. #Fondly
May I continue? By the way, I don’t do the feasting part of Thanksgiving these days but I like being thankful for stuff.
I am thankful for art and the artists who create and inspire me and others by dedicating themselves honestly to elevating above craft into making things for the future
I’m grateful for music, especially played by diligent up-and-coming bands who often become friends (I love being your fan), especially all the people over the years who said “dude you got to have my cassette and/or CD) I’ve captured and collected your efforts in a shoebox.
I’m grateful for the trains that still exist in the World to slowly rolled me to elsewhere and that the idea of travelling open oceans is in a state room in a freighter still exists.
I’m thankful for the 100 or so practicum students from all over the world I had the privilege of mentoring through many jobs, to help launch their dreams, careers, travelling, creation etc.– you “young folk” </ Old man voice> catch too much crap from crusty old bastards but I am 100% in belief that you will change the world for the better.
I am thankful for the few other people in the world who still send postal mail with thank you letters with interesting and heartfelt stories.
I am thankful I wasn’t too much of a jerk throughout my life or this healing journey would be super lonely. Along with this, I’m thankful I did all of those talks (mostly for free) to all sorts of groups (not just bigshot gigs) as I met so many lovely people who still send me messages despite perhaps barely meeting me in real life.
I’m grateful and thankful I visited my beloved old Volkswagen bus (hot boxed of course… It’s a sauna) and thankful that I documented and organized and stored so many artefacts from my previous life as they colour who I am today. Noteworthy especially is that killer stash of records unearth of late. Also, I have every letter any of you ever wrote to me, organized, sorted and stored.
I’m thankful for having folks and friends scattered all over the world who make my life more diverse, colourful and interesting — you give me sparks and dreams of adventures — virtual and/or meat space.
i’m super wanna be over with this disability in general, but especially done with the fucking paperwork that endlessly comes along.
##
PS I really hate it when I say anything about this publicly because I hate being a downer but, it’s truthfully not just the paperwork (of course) that’s just one other thing that piled on top of all the insomnia and muscle spasms and pain and confusion and brain fog.
Now that I’ve been prescription med free for over a year, I have more brain, but also more pain.
And in my somewhat bullshit “journey towards acceptance”, I’m trying not to be so coy and vague and take all this on myself. Truthfully it’s more than I can handle.
Just thanks to you each for listening and still caring about this broke down old dude.
I had a few super great days, the best I’ve had in sometime but then the inevitable crash happens and payback is a fucking bitch.
healing: when feeling blue… listhealing: i do… listhealing: trust self, float on, rest and calmhealing: conundrums…healing: perceptive > transitional > within limits
mixed-media art library, global diary, project dossier and whole life documentation
