Finally up worked nerve/courage to watch @unrestfilm – Cried & laughed + noted im not alone. So much familiar: documenting, crashing, trying *everything*, endless Drs, so much confusion/suspicion/loss. 5 years along #cfsme & #fibro. Was invincible dynamite before.
Also, was funny in the movie to see her obsessing about mold and putting up a tent (I did this), making bone broth (which I did obsessively and one of my former charges now has a bone broth company), all the supplements (which I spent so much money on!), and all the “superfood“ smoothies/drinks/concoctions… Oh, and also all the Chinese herbal remedies cooked up in a big pot making the whole house smell crazy weird.
Sure don’t enjoy talking about, or even acknowledging cause feels like i’m conceding power & spreading sadness, but… fck me, the fibro + me/cfs etc really got me achey bleary today. I’ll be alright, just saying here rather than hollering out-loud and weirding folks out. #puppy #sadeyes #cuddles
The thirteenth Doctor concurred with nine of the others… “Get your affairs in order, apply for disability, consider getting a cat.” After which she noted, as most of them do, “You know this syndrome usually affects women, in fact 90% of the time” – my eyes roll inadvertently, i don’t care if she notices. She sends me along with assurances that the extensively-noted side “benefits” of the basket of prescriptions “don’t happen to everyone after all.”
Ugh. I am toxic and confused.
Walking to a borrowed home, I rest on every bench, imagining my one-life revolving around reruns of M*A*S*H at 6 and 6:30, Hogan’s Heroes at 8PM. Maybe I’ll start watching that show called Seinfeld I missed in the 90s. Was that the 90s? I count years backwards to figure: there was the Japanese sojourn, the time in Micronesia, grape picking in Germany, hitchhiking Australia…”
I see myself all in reflections: I stoop, I am slow, I resist definition but must acknowledge a choice… I can “sit still” or I can “run away”. Ergo: burn out or fade away.
So, I write a will (for the first time) and buy a one-way ticket to a distant city I’ve know nothing about.
This past summer, after literally losing my mind, I decided to step into the abyss… Bravely, intrepidly and without compromise.
Holed up at a mountain cabin while chaos swirled around my lives, I listened to the message from records from decades ago, I hot boxed my beloved bus were so many happy memories happened, I reunited with charming characters from my past and even better, met their children who are adults (moreso than me anyway), then with a solid head of mushrooms and MDMA, this plan came to me.
On a psychedelic carpet, i clicked enough buttons on the Internet, to purchase an abstract variety of plane tickets to send me a round like a manic boardgame in search of a new flavour of truth and reality.
Salt Lake to Las Vegas to Pacifica to Chaing Mai and now to this anonymous city where I’m practically the only foreigner in a city mourning the death of their beloved King, I’m finding comfort and solace and healing.
In scant days, I will leave again into uncharted territory, beyond what science and reason says is capable of this haggard body but I refuse to except anything but finding some sense of joy.
I can live with pain I accept, but I cannot accept living without my brain and without my heart and soul. I am born to give, exist to share, and I am empty without those.
Without a safety net, without and emergency escape route, without language skills, without the strength to punch my way out of a wet paper bag, I have built a tiny universe and painted the walls just the colour I chose.
Who will return to the West Coast on December 6? what will I look like? Who will I be? I am indifferent to all of these questions as the destination is simply a byproduct of the journey.
The journey is me and I am the journey. Brick by brick, I will gently apply the mortar to rebuild, to renew, to replenish and regenerate from the very mitochondrial cells outwards.
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.