Tag Archives: cfsme

Mementos of Pedicures

These days – what with the M.E.(cfs) and Fibro etc. – slowing me down, I find activities to get me out of the house which requires doing not much but sitting.

While pedicures may not seem like a medical therapy, and they’re certainly not, self-care is important part of my healing journey. Indeed, when feeling frustrated and early days of the illness, I made a list of things I can do which involves sitting down, but get me out of the house, and leave me with a feeling of satisfaction.

These ideas include: making scrapbooks, watching matinée movies, sitting in parks under a tree, getting my beard professionally trimmed (rather than chopping at it myself), as well as enjoying pedicures.

As such, on all my healing journeys, I find pedicure places to massage and soothe my feet, trim up my nails, and leave with some colour to decorate.

(Noting this predilection often elicits a strange response from the practitioners as painted toes aren’t as common for men as they are for women certainly, but I find this practice quite enjoyable nonetheless.)

In some cases, I paint my toes the colour of a local flag or other traditional local schemes (coconut trees, bamboo, waves…), otherwise I generally stick to shades of blue and green.

For the record: Indonesia and Thailand definitely have the best pedicure practitioners (is that the proper term?), but I’m also eager to try pedicures in Vietnam as many manicurists in the USA, come from Vietnam.

In India especially, they thought my practice of painting toes was very strange, as such, i did myself (very poorly yet joyfully nonetheless). In Nepal, they were low on supplies but made do with some rugged polish which was moreorless impervious to removal.

Once or twice, i enjoyed a pedicure whilst at sea.

I first started this practice at the advice of a lady who took me for a pedicure in Vancouver before going to Jamaica the first time at that time, I had Jamaican flags painted on my big toes (not sure i have a photo…).

Sometimes i take photos of my toes, not all the time, here are some of mah big ole ugly feets.

Sometimes i forget and just take snap of the old colour before replacing. No annotations since i don’t expect anyone will look or care, i mean really, its just photos of my feet – ewwww. Continue reading Mementos of Pedicures

Healing Journey: Update, Summer 2018

What i want… fully

I want to laugh so hard my face is going to fall off

I want to be hugged and squeezed so hard my ribs might break

I want to be told nice things so much that I blush

I don’t want jealousy or snideness or cynicism or snarkiness or sarcasm

I want kindness and creativity to/for me like I give to others

I want patience, like real honest patience, with no expectations that I will “do anything“ besides bathe and hydrate and rest

I want a safe place where I can spend hours fiddling with papers and pencils and scissors and glue

I want to wake up in the first thing I do is *not* feel pain

I want to lay down on the pillow and fall asleep without twitching and flipping and flopping for hours

I want a night without nightmares

I want to feel that feeling that people call optimism

I want to not think about dying (and relief it would bring) #NotSelfdestructive

I genuinely want people to enjoy the creations I make… and not just people I “know“… like strangers and people “in the wild“

I want respect for my contributions to humanity

I want to rest, like actual invigorating rest where you wake up refreshed

I want gentle adventure

I want to believe what I’m saying and telling other people

I want to cry for an actual reason – not just all the time

I want to nap where I actually fall asleep, not just laying there, staring at the ceiling

I want to be touched, gently

I want to believe in something

I want to be adored

I want to feel important (again)

I know many of these things are called actual true things“ already… But I want to actually legit “feel” them. Approximately 98% of my energy is sucked away by simply getting out of bed, bathing and hydrating and (sorta) pulling myself out of depression.

Ease, Desired

Somebody, kindly lie to me

Tell me I am “going to be OK”

Soon, life will be like driving down Laurel Canyon in 1973

In a Galaxie 500

Top down, radio up

Nothing but possibilities

That I will rest easy… like so many humans do with ease

Someone, kindly lie to me

Whisper I’ve done enough meditating, stretching, giving, therapies, effort

That soon, I will sleep (!) and wake up (!) and every muscle, joint and nerve won’t be on fire

Please, kindly lie to me.

I promise to believe you (for now).

“Unrest” Documentary about CFS-ME

Dave gazes at Rodin's interpretation of the Gates of Hell from Dante's Inferno
Dave gazes at Rodin’s interpretation of the Gates of Hell from Dante’s Inferno

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.

PS Unrest the film is on Netflix, iTunes and other places.

Auspicious day

9 years ago today, I presented “fuck stats make art” to a full house at SXSW, scored hash brownies and MDMA in Austin, drank whiskey backstage with the black angels. 11 years ago, signed up for Twitter. Also brother Bob’s birthday.

These days, a challenge to just get out of bed for a cup of tea… I’m really trying to “move on”, find “acceptance” and “close the book on old life” but it sure the fck ain’t easy with such wild & fulfilling actions in my past

#thanksforlistening #nosympathy #freehugs #trying

Declaration: upon waking up

I wrote this declaration upon waking up…

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.

What ever the result, it will be me.

Notes about The Atlantic, and a missing lyric

Evidence: Tanya Donnelly’s Swan Song, 6 EP series

In a dream state(ish), I keep singing a lyric which I assumed/I thought is by Tanya Donnelly… but I did a crash course on her entire catalog yet cannot find any sign of the song. Also a search more widely produces not a clear match. That said, Internets is limited in my sequestered room.

Noting the same mystery happened with the lyric “Grandma take me home, I want to be alone” which later turned up on a cassette from brother Dan while in Saji, Japan on Nirvana’s outtakes “Insecticide” “grandma take me home, I want to be alone” just as I remembered it.

By this point I’d written a song in my head with the same riff and lyric. Sigh. Kept rewinding to reconcile memory from erstwhile reality. “Mom and dad went to a show, drop me off at grandpa Joe’s, I kicked and screamed, said please don’t go…”

In this case, and this isn’t the first time, and feverish haze I thought of the Atlantic.

The fucked up the Bucerias trip as well left me looking east word overwater as though in the Canadian Maritimes, basically something like “the Atlantic she calls you, the Atlantic she needs you she need you to come home.”

I’ve visualized lighthouses and rocky headlands and stone houses. Maybe Cape Breton, Nova Scotia where a Buddhist monastery is mentioned in “when things fall apart” coupled with thinking about Leonard Cohen living as a monk on Mount Baldy. The same mountain Gary  (Japhy) and Jack rambled (mostly) in Dharma Bums.

I had it “the light houses will bring you, the hearth will warn you, so please, please come soon.”

Indeed, this stretch of life for me is about reinvention, changing everything no matter the pain to me or others. This is terrible to think and worse to write but I am renewed, not by choice as I was pleasantly addicted to “old” life of authentic, adrenaline, admiration. But, by necessity, I no longer have ability to compromise to make others content. Brutal but true. Will “it” revenge self on me? Perhaps, but I know I can find silence at the edges and fringes of salt water-even the bay of Bengal or Indian Ocean. Filthy at the beach I saw despite a vantage name.

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Found the song – tis: Cape Ann by Tanya Donnelly from her Swan Song series. I ordered a 3 disc vinyl delivered to Pacifica – “the Atlantic she needs you… You’re the one who got away.” Indeed.

Lyrics follow:

>>

When the road was wide
We walked side by side
Where it narrowed one fell behind

It was okay in those days
We were headed the same way
Didn’t care who’d get there first
You copy you paste you lose
So your bird can sing
It’s a beautiful thing
And you taught her all the songs we knew
But your bird, your bird, makes up all her own words
Which is just what I loved about you

Coming off of Cape Ann
Head to toe salt and sand
And the stain of the yellowing foam
The Atlantic, she loves you, you’re the one who got away
And she wants you back home

When the road is wide
We walk side by side
Where it narrows one falls behind
It’s okay, it’s okay, we’re all heading the same way
I don’t care who gets there first

Coming off of Cape Ann
Head to toe salt and sand
And the stain of the yellowing foan
The Atlantic, she loves you, you’re the one who got away
And she wants you back home

The Atlantic, she loves you
And she wants you back home
The Atlantic, she loves you
And she wants you back home

The Atlantic, she loves you
You’re the one who got away
And she wants you back home

She wants you back
She loves you
You’re the one who got away

The Atlantic, she loves you
You’re the one who got away
She loves you

Old vs New (notes re: self)

Renegade adventurer v. Eccentric gentleman  

Remote and natural v. Walkable villages  

Ragged beards v. Straight razor shaves and mustache  

Hiking shorts and rock t-s v. Tailored suits and fitted shirts  

Free conference pens v. Disposable fountain pens  

Craft beer v. Water and tea  

Fat doobies v. Unfiltered cigarillos  

Freeverse v. Lyrics

DIY repairs v. Takeout mending  

Self-service v. Delegate  

Wash n wear v. Laundry service  

Late night rock v. Early acoustic  

Take away street food v. Long patio lunches  

Midnight movies v. B&W documentaries / matinées

Healing notes from a waiting room

#Grateful to the folks who pick me up when I’m feeling down. Got some good support at brain injury society Victoria yesterday.

In a fog.

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Also, a plumber came to fix garburetor and ended up giving me some sweet OG Kush buds. Any wonder why Im called “uncle weed? #medicine

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Waiting for my medical appointment… & Wilco + Billy Bragg singing Woody Guthrie’s California stars comes on #littlewins

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Heading into medical appointment now which concludes today’s social media broadcasts from your belauguered pal daveo

Carry on etc