Category Archives: Healing Journey

journals, notes, musings and the like about dealing with a consortium of complex and chronic illnesses (fibro/cfs-me) – yeah not the most fun category but whatev

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.

Forever Grateful, love dvo/uw

A little note for you for sticking with me, being my friend, checking in from time to time, taking a look at my little creations, etc.

 dvo/UW

Poetry > Phone

source of quote unknown, source of art also unknown

If folks ever wonder what I’m doing, or how I’m doing or whatever… they can figure it out through reading my poetic dispatches. To me it’s very obvious but I suppose it shrouded in mixed- metaphors, curious phrasings and obtuse examples. Though to me, poetry is one’s life distilled to core essence. Far more sincere than “catch-up chitchat“ on a phone call.

Also (vaguely related):

My journals/notebooks/scrapbooks etc. are the most precious items which I keep safe and stored (keep in mind I have very few possessions). Most all of the contents is sort of in the “code of poetry” – specifics are known only to me and someone would have to be *very* dedicated to interpret the metaphors into facts and emotions. There something in Nabakov’s Lolita which expresses similar sentiment (no creepiness intended).

Question: If you shred your journals, will you make something out of the scraps from the shredder?

“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

Grateful: International Women’s Day

A fond salute of admiration to exceptional, compassionate, empathetic and skilled medical professionals who have helped me along on this healing journey. Admiration for their tenacity in training, professionalism in practice, and kindness and patience shown to this ole brokedown poet. #respect

Hospital day

Today:

13 blood tests

2 immunization boosters

3 dental fillings

3 prescriptions

2 molded ear plugs

1 red curry

2 Thai tea

1 cappuccino

2 cigarillos

Healing(ish)… &/or surviving

So many years now
Trying, climbing, sliding
Up the slides of a slippery well
Fighting, accepting, relenting
Leaves with only
Exhaustion from the inevitable slide

##

  • leftantler kbo.
  • ddonat Is there more than just exhaustion? Does the struggle provide meaning?
  • uncleweed@ddonat Nope, all that “whatever doesn’t kill me, makes me stronger” I’m calling bullshit on. It’s just the #fibromyalgia crash carousel of frustration
  • ddonat I’ve been going through deep depression. Eventually, I decided to get help. I’m now medicated, getting counselling and doing my best to get out of it. I hope there is light at the end. I don’t have fibromyalgia, but I hope there is something better through my struggle. I’m a bit proud that I’m still hear fighting.
  • ddonat@ddonat I have hope in that you’re still fighting
  • stew255 KBO – sometimes it’s lower case, some times it’s upper case !
  • nabspat Counting on signals
    Walking, crawling, remembered,
    Forget the weapons
    Hearts and minds, outstretched
    Strip dust and distance, unbound-
    You. Posture beloved.
  • auxinafenica Makes me mad to know awesome people have to go through this. Sending you and whomever struggles with huge fights a huge huge huge hug.

Beige unrelenting present…

Every day brings
An anniversary of something grand
So much promise and vigor
Graceful ambition, earnest yearning
“Don’t let the past affect the future”
Sound so easy
Until the beige unrelenting present
Brings another morning of pain

So many years now
Trying, climbing, sliding
Up the slides of a slippery well
Fighting, accepting, relenting
Leaves with only
Exhaustion from the inevitable slide

The shaggy dog comes to rest beside
Oddly purring softly, sedately
Sharpening his claws
Glancing up at me
Noted
I am left alone

Tarot Reading, Jan. 2018

My dear friend K. did this remote Tarot reading for me as she’s done a few times previous. Posting (slightly edited for personal-ness) notes here for reference to future self:

I’ve been channeling you all day though. I’m wearing the purple calico shirt you left at Dane’s. I stole it from him the last time I was there. (It looks better on me anyway!) I’m also wearing your mom’s Birkenstocks and listening to the Grateful Dead.

Tarot Cards Reading: Jan. 2018
Tarot Cards Reading: Jan. 2018

I set up the space with a bunch of Dave O memorabilia and letters. I put the photo of you in your Chinese garb on my phone to watch over the shuffling, cutting and dealing of cards.  Your energy was here in every way!

1.You: The Fool, one who walks without fear, you are attempting to manifest creativity, move toward wholeness and re-own your courage(how apt!)

2.Crossed by Love (2 of cups). I don’t think I need to define “love.” (Again, how apt!)

3.Distant past: Dominion (2 of wands) Drive to be a pioneer, dynamic energy, leadership ability.

4. Recent past: Peace (2 of swords) The mind is at peace on a subconscious level concerning two polarities, situations, or relationships.

5. The present: The Magus, the communicator. Gifted in areas of visual and auditory arts, mass media/ public relations.

6. Near future: Oppression (10 of wands) You are experiencing self-repression. There’s a fear you will not be understood or accepted. There’s determination to release this. Looking back ten years before may reveal the same feelings.

7. Present position: Debauch (7 of cups) Indicates a pattern of emotional overextension. You’re experiencing some depression and are trying to relieve the pain by overindulging.

8. Environmental factors (influence of others/ your influence on others): Satiety (10 of cups) Deep emotional satisfaction!!!

9.Hopes and fears: Death. DO NOT INTERPRET LITERALLY!!! It’s a great card! Something is ending and that makes way for a beginning. Like you said, you “burned down your old life” I also think you’re terrified of a new relationship ending badly.

10. Culmination: Science (6 of Swords). You have the gift of logical, rational thinking to communicate about something new that needs to be put forth in a clear, objective way to be understood and well received.

Tarot Cards Reading: Jan. 2018 (arrangment)

In conclusion: You seek a new love interest that is really satisfying, but you don’t want it to go up in flames. You are getting back to a place that you have that drive to create & communicate. Use your communication abilities to express yourself in a clear, rational way.

It’s kinda funny that you got no disks in this reading. Disks are related to health and wealth. I can only assume from this coincidence, that your path is mental, spiritual and emotional. Your physical world will take care if itself, if you take care of the other domains.

On that note, I’ll share your horoscope from my favorite eclectic wordsmith, Rob Brezsny.

“Just because you’ve become accustomed to a certain trouble doesn’t mean you should stop searching for relief from that trouble. Just because a certain pain no longer knocks you into a demoralized daze for days at a time doesn’t mean it’s good for you. Now here’s the good news: In 2018, you can finally track down the practical magic necessary to accomplish a thorough healing of that trouble and pain. Make this the year you find a more ultimate cure.