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
Challenges of healing include crazy wait times for referrals to specialists and clinics. Called a major specific clinic in Vancouver today to check in on progress:
them “when did you submit referral?”
me “oh more than a year ago”
“we found you, yes you were referred May 2015, so that means we’ll be able to see you in…. let me see… May 2017.”
“we’ll call you then”
Comments and annotations:
to Scott Orr: each province runs it slightly differently but, one of the biggest problems is lack of Drs as they can probably make more elsewhere the problem starts there. There are many more efficiencies in the care now (shared xrays and digitized records) for “normal” stuff (breaking a bone) and great programs for critical illness (cancer centres) but i am an odd case and odd cases often slip between cracks. in this case, its a new chronic and complex clinic inside a hospital so its an odd situation all over. The other critical solution is integrated care where mental and physical are not treated entirely differently. Also respect for alternative therapies… but like i said, you break and bone and dang its easy and no cost. But i am weird in more ways than normal :)
to Tristan Schon: truth man, my first year or two of treatment for this conundrum (ME/Fibro/CFS/etc) was all medications which just about turned me to jello, and group cognitive behaviour therapy which managed to freak me out more. The best results ive had (meaning relieving pain and making a bit of brain fog go away) is soaking hot mineral springs and getting Thai massgae where they bend and twist ya. Otherwise, phoenix tears (rick simpson thc oil) and CBD capsules sorta maintain me (though i’ll admit to the occasional diaxapram when i cannot leave the house due to anxiety) – its the last vestige of a formerly absurd scrip roster.
Also, if i’ve learned anything medically through this it is: the brain, gut run the show and the body mostly follows along. You can patch up the body way easier than the fixing gut and/or brain. As a result of the weakness and fogginess from the Fibro and scrips, i’v fainted full out a few times with 3-4 significant head traumas which just complicate the whole thing. Like makes harder to separate what’s what and Dr’s (kinda understandably) cant be awesome at everything.
Etc: Just a note to say, “dont worry about me” i am stick handling the medical system with frustration and annoyance but im happy to be alive and realize how far i’ve come. I live in constant pain and brain/cognitive fog and i require lots of rest but my illness is “weird” and not as easy to fix as a broken bone. Sometimes, i just need to holla aloud and each of you are very kind for checking in and offering support and advice.
A dear friend’s teenage daughter was heading out on her first foreign adventure–as such, i passed along a few thoughts. Sharing as perhaps others will find helpful.
It’s Dave here – and while I don’t have knowledge of all things, I do have a lot of knowledge about traveling… Not about fancy hotels and airline miles and gourmet restaurants but instead, grassroots travel where you immerse yourself in the culture and never really quite return home because much of your heart remains behind.
Now I don’t know all the details but I understand you’re going to a rather “developing” (hate this term but…) with a school group to do a humanitarian project – all that is awesome and, since I’m here, I’ll share a few random tips for you to consider while you ramble.
First off, all that stuff about packing light is very, very important. Consider your clothes a “uniform” and trust me, no one cares what outfits you wearing plus, one of the funnest things to do is buying clothes local and then you come home with a neat outfit. I take clothes which are quick drying, dark colors, and well-worn in so I don’t mind giving them away when I leave.
Since you have this extra room in your pack now you will fill it with something much more valuable: treats for the people. I don’t mean important expensive things but some of the things I take include: sets of pencil crayons, notebooks, pens and buttons with fun designs, postcards from my home town (remember agricultural people around the world love seeing photos of animals and farms and plants and so on), sometimes deflated soccer balls but those are a bit clumsy. My last big trip I printed out hundred postcards of my art so I had something to give to people that really created that connection much more than a “Facebook friend.”
Document extensively but use cameras judiciously. What I mean by this is that photos are often the worst way to connect with the people (there are exceptions like instamatics), as it put something between you and them, and that something is also an expensive piece of technology. Now photos are so important and I’m so grateful for the few foggy images I have from my first travel spots, my rule was to buy one or two disposable cameras, peel off the outer wrappers so is just a plastic black box and then I am limited by those 24 or 48 exposures so each shot had to be very important. Sure lots of them turned out really lousy but the intention was a lot of fun. Now I travel with a sardine can film camera which produces hazy water-colored memories which sort of seemed like how memories fade.
Instead, I love to make notebooks, fill up journals, scrapbooks with all my travel artifacts (ticket stubs, postcards, brochures, signatures, sketches, maps,…) These give you an interactive talking point with folks as you meet them and, of course travel with a pencil bag so folks can sign and add their thoughts to the big jumbo book, plus flip through and see other artifacts of me and my journey. I even throw in a few family photos and stuff like that before I leave to show new friends (as well as stave off the possible homesickness).
This one may sound weird but stay with me: I (usually) have a rule in which once I decide where to go, I learn nothing about the country. This seems super counter-intuitive but, because traveling is so easy now (my first trip to Europe at 21 was before cell phones, Internet, ATMs, common currency etc. ugh) so to keep that “degree of difficulty” up to snuff, I go in naïve so I can feel like an early explorer, there before the masses. Now I realize that doesn’t fit exactly with the logistics of your trip but the thought of going with a clear mind and minimal expectations opens up so many opportunities. Think of the place as white paper or canvas waiting for your contributions rather than pre-coloured with the drivel of guide books and instagram stories. Great examples is: “the most famous tourist site in every country” in which you can line up for hours to see something which you could go to another town and see something less crowded, perhaps not quite as magnificent, but almost wholly to yourself.
In other words, find your version of what’s awesome and discover the story(s) for yourself. Trust going to places you’ve never heard of or never expected, and you’ll find bits of magic which you can feel like you were the first person to document.
OK, health stuff… Like you, I’ve struggled with terrible migraines on and off throughout my life and now I’m dealing with a bunch of other crappy illnessess (fibromyalgia, CFS/ME etc). So, when I travel, I always have my little “safety kit” of killer soft eye mask, best earplugs, lavender oil, sticky heating patches from Japan for my shoulders and back, various oinments and magic to deal with onset of crazy pain. Like your situation I suspect, once it hits, you are done and need to shut down until you sort it out. So make sure you have your emergency escape kit and don’t be afraid to take an extra day in a quiet room when you need it. You are young, South America is just getting going (keep in mind it was a collection of “banana republic” – another lousy term, sorry – dictatorships for most of my life) so you can return again (and maybe again). The important point is to come home inspired and not battered.
Besides my beloved scrapbooks (if you want links to view photos of them just let me know) I also often take an audio recorder and love to record ambient noises of markets and streets and crowds or music or buskers and when I’m home and feeling blue, I put on my headphones and the audio drift you back better than any photo ever could (usually). Also, with my travel artifacts besides scrapbooks I also make big “static montages” meaning a kind of wall-hanging collages with all my bits and pieces floating and stuck on, sometimes with some paint, and a bit of narrative on top.
Anyhow I could go on and on but mostly I’m just super excited to see you heading out on an adventure. Your Mom tells me so much about you and while I met you was a baby, I look forward to seeing you as an adult one day soon.
I am constantly available to offer any bits of scattered wisdom or encouragement… At your leisure…
Whilst tidying, archiving notes and artifacts used in “Fck Stats, Make Art” talk presented at SXSWi 2009. Other round-up also available. These are the bits leftover yet worthy indeed. Mostly items remixed and created by others from the aforementioned spiel.
Whilst tidying, I gathered up snaps of the materials in my suitcase plus various archiving notes and artifacts used in “Are you Worthy? – Publishing from Greeks to Geeks” talk presented at Wordcamp Whistler, January 2000.