Tag Archives: healing

Healing: oxygen, blood cells, coffee & matching outfits (future acts)

{Unnecessary preamble} Coffee, croissant and ukulele outside for a little bit under the pleasant cloudy skies. Yes, I am Cascadia chap. Happy to be cooling off after so hawt hoomid summer in Japan. Regrouping after hospital visit & recalibrating for the months ahead.

PS (smilin on the inside)

So, before I forget it all, let’s recap the Hospital day… Start from the morning:

OK Dave, get up, vitamins, more coffee, porridge, clothes, packet of papers, wallet and watch and off to hospital with you. Don’t forget your memo! Going to be a long day but you’re gonna get through it.

Made it through the first couple checkpoints, just ate some lunch and heading to wait for Dr number three… but let’s back it up:

Kind of Jack Kerouac vibes for the lunch with a club sandwich, apple pie and coffee in a quiet corner

TCM/Kanpo: First doctor is the traditional Chinese medicine Doctor who checks my pulses and tongue very carefully. Explain that my pulse is quite strong despite me feeling incredibly weak, tired, spun out etc. which is indicative of my body “trying” – but he explained to me very carefully that I have to ‘Shut it down and rest’ for several months. He went on to say that at their clinic, they deal with MECFS and long Covid patients consistently and somebodys aren’t really “pushing back” and I am but need to give time. I asked him about putting on my usual Christmas party and he says “if you can make it very simple then OK…” (Above done in Japanese but you get the point).

He also inspects my abdomen with palpitations (is that the right word?) which is generally a weak point for my wonderful delicate body with a colorful history from Giardia to appendectomies and many points in between, and again, was pleased to see strength and function in this region.

He re-upped my “usual retinue” of powdered traditional Chinese medicine packets – four kinds are used at different times of the day and two more to be used situationally (for times of excess tension and headaches).

Made sure to thank him again for taking the time to truly inspect me, adjust medications and treat me with dignity and respect.

Inputs: Next was heading up to hematology or something department where I get a comically huge syringe with a cocktail of medicines and vitamins injected into the reliable vein in the crook of my left elbow. Laughed with the nurse that her lavender latex gloves matched my shirt and then I showed her my also matching socks so we had a chuckle part 2.

Little things like this make the day go so much easier. All of the staff are incredibly precise with their routines – double checking my name, birthdate, allergies to alcohol and latex etc. even though I am well, very easy to spot and remember in the hospital. I joked that next time I visit the hospital, let’s do the light blue gloves and I’ll wear the outfit to match.

Logistics: I should mention about the check-in process which my darling wife used to assist me with as it’s done with a special card into a special machine which prints out a special paper with special numbers that break down your itineraries for the day, but like a trooper, I completed the task on my own with only mild bewilderment.

In this case, started with three checkpoints which turned into six as the doctors adjust on-the-fly when other treatments can be added (in this case the blood panel, oxygen and blood panel review).

And, to make best use of their time and to have a permanent record and, to assist the diligent clusters of medical students observing, patrolling, and learning, I always take a memo of current situation and my questions. In this case, because of the recent COVID-19 infection and feeling incredibly depleted and a bit scared through it all, I had a few specific questions & paths of inquiry.

The doctors pay close attention to this notes and are rather appreciative rather than annoyed. (Folks who have experienced medical care in some certain countries will really grok the goodness as some doctors take offense to the patient – you know, you – actually asking questions and wanting to participate in the medical care. /rant

[brain imaging: Interrupting myself to remind to better explain the brain imaging scans from previous visit as there was some inquiries… I’m not all that clever except to say that it showed a lack of blood flow to the front of my brain (frontal cortex or whatever which controls executive function), I’m not sure whether it was an MRI or a CT or something else because it didn’t make those horrible noises, yes there was an injection to show contrast in the scan but I don’t know what the magic potion was.

The results were delivered to an app on my phone [as are all my other test results and all the information about upcoming appointments and so on. Also, payments/insurance information is somehow contained within this app. The app is all in Japanese and my reading and writing skills are well, underwhelming and there’s no onboard translation scheme so I just kind of muddle through / onwards!]

Outputs: Dr. 3 also becomes checkpoint 5 after going to back to floor 2 – but this time to the “output blood” department rather than the “input” department mentioned earlier for checkpoint 4, for 6 blood vial draws // nurse was incredibly skilled switching vials one-handed while holding the spike in with the other hand. Precise, confident and swift – and again, double checked name, birthdate, allergies…

and now some kind of oxygen “something something don’t quite understand yet” which will be checkpoint 5 #whew you with me? Let’s take a break.

{this ^^ dispatch is coming from a quiet corner with unscheduled brewed coffee vending break // these machines always remind me of some 70s cop show when the hard boil detective is waiting out a late night shift at the morgue drinking Styrofoam cup coffee… Yes I have that active of an imagination

Oxygen / briefly: Explained the “new/different kind” of headaches I’m experiencing to Doctor who suggested could be “cluster headaches” (unsurprisingly, i experience a whole smorgasbord of headache types) so tried 15 minutes of oxygen – was huge relief and pleasing moments of calm. Want more and will explore getting oxygen for home use. {This was not like a “CPAP” just a simple oxygen mask on my face while chilling on the bed with handy eyemask.}

Stats: After oxygen, the blood test results were already analyzed and delivered so back to the Doctor 3 (infectious disease specialist) who reviewed several of the critical things we were looking for, specifically about white blood cell count (which was above range which in my case is a good sign as it shows my body is diligently fighting the viruses as often times, the white blood cells will just “give up” with an over-clocked immune system (pardon my lack of technical medical language here).

Also checked thyroid function which was all within range (four different levels) and cortisol (also within range). Checks for Epstein-Barr virus were not instantaneous but two pages of results delivered and under an hour // of course all in Japanese and not all of it is easy to colloquially translate yet somehow, felt pretty good about it all. Oh yeah, my cholesterol is ridiculously high which it always has been even when I was a skinny active vegetarian (I am none of these things now). #shrug

Translation: {If someone is really eager to try J>E translating medical terms, I don’t mind sharing this highly personal information publicly because like, “what’s gonna happen? I get more information?” And no, machine translation isn’t necessarily a great fit for this kind of project.}

Art: By the way, there are several restaurants in the hospital i hit up. The other day, while enjoying a club sandwich, apple pie and coffee, noticed some great framed albums / also rotating art exhibit on the wall. Yes this is at a hospital.

Winding down: my usual routine after the checkpoints is to roll by the payment desk and show my app (if you’re curious about Japanese national medical insurance, basically, a significant percentage is covered by the plan and depending on your income situation, you pay some kind of “co-pay” (for lack of a better word) but the amount honestly is some times rather just nominal like a few dollars equivalent).

Anyway, the magical app is connected to a bank account or credit card or something and I just sort of stumble up to the desk, show the paper dispensed from the robot at the beginning of the whole visit and show my app and do my best to smile through my mask because at this point I’m completely deliriously exhausted.

In this case, was there from 10:30 till about 16:00 – sure a long day by my standards but incredibly efficient considering everything done. {In previous countries in which I received medical care, this would’ve been many days worth of appointments scattered at different clinics, labs and hospitals so I am Very grateful}.

Anyhow, then go to the pharmacy where they scan the super-dense QR codes on the prescription sheets given by the doctors and in the past, I would tote the bags home in the van with darling wife but now that I’m rolling solo, instead they courier the medicines over a couple days later after doing a video call to review any changes. The pharmacist realize that I’m not really capable – basically nonverbal – when I drop off the ‘scrips so they wait till the next day to call.

For example: for some medications which I am trying out, they will not package in the little packets in case the med not a good fit for me so I can put it aside. Does that make sense? Anyway they double check everything via video call and then on another app, push a button and payment done. Again, some percentage paid by us, the majority paid by national insurance scheme.

Afterwards, I usually go to “Liberal” kissaten for a quiet meal/coffee, look at books or sometimes scribble postcards but by the time I finished this time, they were closed so instead walked over to an embedded convenience konbini store – as it was so late in the day, darling wife was picking up adorable son from school and they swung by and grabbed me saving me the close to rush hour bus ride (which may have been the factor for previous infection anyway).

This is where I sat and waited for pick up. Since I had a photo of it, I put it here. This is the front of the hospital where the taxis and buses roll through.

I bought them some snacks at the konbini so we rolled home together eating onigiri and egg salad sandwiches with the crusts cut off with my favorite duo.

Not a doctor, duh: Realizing above doesn’t give too much heavy duty medical jibber jabber but maybe I’ll get courageous and productive enough to share the blood test levels… I don’t know, is that a good idea? And hopefully the info about oxygen is informative to other patients and the whole daily routine is of some interest and usefulness.

Please remind me to go slow for several months.

Bonus: so much research, conversation and awareness about this ridic illness so a couple dispatches stashed here so I can find again. Dig if you’re curious:

Oh my goodness, this is all about me ^^

Addendum / dreams:

Next day: Well, folded a bit of laundry, changed the sheets and pillowcases, made tea. And now back in bed.

“Tiny steps” and rest are the requirements but my goodness, I want to write a novel, record an album, send 100s of postcards, and make a video of doing all of the above.

And yes, should not be sharing any of this but honestly, i’m increasingly mentally fragile, exhausted, bewildered, frustrated but still somehow so grateful “this version of my life” found me and convinced i still have a 4th, 5th, 6th “act” in me. F. Scott Fitzgerald was wrong.

Keeping it together my friends, a topsy-turvy stretch but I am still moving forward and letting myself dream big, ergo:

I am always writing “something” – lyrics, freeverse, diaries, shaking out the negative thoughts into slightly vindictive words (yes yes i know), usually in notebooks but sometimes in apps or files i forget, sometimes print & put on the fridge.

Peace from the hospital for all of us, especially you (note Linda Lindas pin)

While I am here, just saying my “dream” for the next 5+ years is to nurture community in my neighborhood with an arts/games/learning/music/coffee space and welcome more guests – both foreign and domestic – to hang out in 土田 since hard for me to get elsewhere.

Changes in Sanity (& Latitudes) – Japan Cottage Musings

Yes, I’m a little bit baffled.

I’m not sure what I’m doing with this or why I’m doing this or who I am but whatever

In bed, confused, rambling slurring, fiddling with ukulele, remembering Jimmy Buffett, Jamaica, “all the places I’ve been” (Nepal, Suez, Istanbul, Grand Canyon… criss-crossing continents). gratitude for friends (that’s you), especially those who pick up the phone and send postcards, talking about ice packs, eye masks, hot pillows, more postcards (especially from Sri Lanka), envelopes with 13 queens, concerts i won’t go to, folding laundry, and a memo I need to write for the hospital.

Healing: sharing *my* MECFS story with Open Medicine Fdn (and 2 from ‘The Atlantic’)

My least favourite topic to discuss is my health situation, yet, unsurprisingly, it’s what I’m *always talking* about because well, honestly, as much as I want to “out-think” and out-meditate and out-positive the illness, it’s a constant companion and dictates everything that I do – from scheduling to nutrition to ability to earn/acquire money, and related equivalents.

{Yes yes, I know the mind is powerful, I spend hours a day in various forms of meditation, increasing theta brain waves, positive affirmations, complete sensory silence, reprogramming neural plasticity – and all of it. Not to mention the retinue (constantly changing) of medications and supplements and other treatments (name it, i’ve done it).

Also, at least one friend – knowing well my previous acumen and enthusiasm for building community – has suggested my community building skills might be well used around this illness but, emotionally for starters, it’s an incredible toll. Ergo: just keeping oneself going (especially as I’m dealing with settling as an immigrant in a new country and with a young family…)

Anyway, all said, was it last year i published the multi-part “healing ramble” series? the one where gave the background intell on all the different treatments and protocols did during the missing years… (I should couch that by saying there are definitely many treatment types and situations which I very specifically did not share as they’re still too painful to articulate, a few sit in various draft forms in a folder, which may never get published) – regardless of when, there was almost 0 attention or awareness or feedback or input about the series – but maybe it was good for my mental health to put it out there(?) – as through all the journeys – fruitful and fruitless as they might be –I was journaling, diarying, documenting, etc., both about the treatment types and various hospitals/clinics, as well as the logistics of how managed to go places in the condition i deal with.

Addendum: the erstwhile “community” around this illness can be very sensitive and cantankerous, as people are really living on the edge of their own mortality and emotional state, and tend to turn on each other and nitpick about terms and diagnoses etcetera so I’m also very tender how about this aspect.

As usual, this is just a long way of saying, “I shared some stuff with open medicine foundation (an organization focussed on scientific research, rather than some of the other great organizations who focus on patient advocacy, government lobbying, awareness building, and group support), which came out while I was on the BC trip which coincided with the 10 year anniversary of the onset of this illness (May 2013) and, like most everything I say out into the world, had very little reaction or input or whatever but hey, I did it.”

Further, during the so-called “long-haul C 19” illness that’s become prevalent in {italics} these days {close italics}, awareness and research for ME/CFS has increased as the illnesses present in very similar manners. (No, I’m not going to get into the details here, that’s not my job).

So, below are a couple of exceptional articles by Ed Yong writing for The Atlantic (he left The Atlantic within hours of publishing the 2nd one shared below but remains an advocate of folks dealing with this umbrella of illnesses as he really spent the time getting to know the dilemmas folks face from being “gaslit” by the medical industry, ignored by governments, dismissed by employers, plus domestic / familial conundrums, and the crushing sense of defeat and precipice of depression and hopelessness that comes from this/these illness/es.

So, I come to you today finally rounding up these three pieces so I have one link to send to people to say “this is my illness, this is my story, this is some more stuff to say that this just isn’t me”.

[Note: the articles from the venerable “The Atlantic” below might be behind a pay wall, but generally allowed 2 free articles before shutting you down, and Mr. Yong has also kindly offered to send a complementary version of the article to anyone who requests by email, deets below.]

1 x Open Medicine Foundation

A Decade of Living with ME/CFS
Finding Hope & Purpose in Japan

During OMF’s May Momentum campaign, we aim to raise awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Today, we share the story of Dave Olson, an OMF supporter in Japan. Dave’s experience highlights not only the challenges faced by those with ME/CFS, but also the resilience and strength of our community.

Open Medicine Foundation: OMF.ngo ++ Donate | Txitter | YT |
Science Advisory Board | Press kit (pdf) | Bonus Ambassador Stuart Murdoch

Hi, I’m Dave, and I’ve been living with ME/CFS for 10 years now. Before my diagnosis, I was an enthusiastic and active individual, working as the Vice President of an exciting social media-related company in Vancouver, Canada. I had a plethora of hobbies, from hockey to hiking to public speaking. However, my life took an unexpected turn when I suddenly fell ill in May 2013, leading to a decade-long journey with ME/CFS.

I went from feeling “a little bit sick” to having an out-of-body experience passed out on the floor. I thought maybe it was a gastrointestinal issue or stress from work, but I just didn’t get better.

I really realized something was wrong when my brain started to “check out” and I was getting lost and disoriented just blocks from my house despite being a world traveler. It turned out that I was ill with ME/CFS.

Now, ten years later – after hundreds of medical appointments, tracking down specialists and programs of every possible kind, I’ve lost everything from my career, to my support system, self-worth, and hobbies.

Read more: Healing: sharing *my* MECFS story with Open Medicine Fdn (and 2 from ‘The Atlantic’)

Rebuilding my Life Across the World

Despite all the loss I have suffered over the past decade, I’ve managed to rebuild my life in Japan with my wonderful wife and adorable 2-1/2-year-old son.

I recently started a specialized ME/CFS medical program at Okayama University research hospital, which has given me hope for a brighter future.

Throughout this journey, I’ve turned “optimizing the household” into my hobby, finding ways to streamline daily tasks while conserving my limited energy. I also enjoy creating and sharing art, writing postcards, and blogging about my experiences at daveostory.com.

 Navigating life with ME/CFS in Japan has had its challenges. It took some time to find the right medical resources, but I’ve made significant progress with the attentive care of doctors at the Okayama University research hospital. While there is a growing recognition of ME/CFS in Japan, I hope that sharing my story will encourage more understanding and foster better communication.

Words of Wisdom: How to Find Creative Expression with ME/CFS

 Blogging has played a significant role in my life with ME/CFS. I’ve been able to share my experiences, art, and insights through my blog, connecting with others and reminding myself that I’m still alive and relevant.

 For example, in my spare time, I take great pleasure in writing postcards. This hobby not only fuels my creativity and hones my motor skills, but also provides “three waves of joy”. The first wave of happiness comes from the process of preparing and sending the card. The second surge follows when the recipient gets the card. The third thrill arrives when I receive a response!

 An example of Dave’s postcard art 

For anyone with ME/CFS who wants to pursue their passions through art or any form of personal expression, I suggest starting small. Instead of working on large canvases, murals, or novels, consider decorating postcards, writing poems (even haiku) or creating scrapbooks or collages.

 When you’re resting, plan your creations so you can use your limited energy on the actual creative process rather than deciding what to make. Focus on projects that can be completed quickly, from beginning to end, and are easy to share by mail, remote exhibitions, or as gifts. I’ve published poems and submitted art to exhibits all from my bed and have given my art to medical practitioners to show my gratitude.

 Additionally, consider learning a new skill that can be done easily on a table or lap, allowing you to connect with others.

A Note to the Newly Diagnosed

 For those newly diagnosed with ME/CFS, be prepared to face challenges and losses, including friends, family, career, and even dreams. Despite it all, remember that no matter what, you are important and your perspective on the world is so valuable.

 We are pioneers on a journey we didn’t choose. Take the advice of a counselor who deals with chronic and complex illnesses: “Go where the current takes you.“ If needed, find a counselor who understands your situation, as friends and family may not have the practical skills or emotional ability to provide adequate support.

Finding Hope in Open Medicine Foundation

 Remember that there are also people who are working around the clock to help us and find a cure. I first heard about Open Medicine Foundation (OMF) during my search for a community that focused on scientific information, research, and practical solutions for ME/CFS. OMF’s transparent and thoughtful approach to fundraising and communication resonated with me, and I am grateful for their dedication to finding a cure for this debilitating condition.

As I reflect on my 10-year journey with ME/CFS, I’m filled with gratitude for the support I’ve received and hope for the future. To all the scientists, researchers, fundraisers, community organizers, patient advocates, and individuals who contribute to this cause, I raise a cup of Tulsi tea to you.

 With fond regards from my cottage in Okayama, Japan,

Dave Olson

During May Momentum, please consider making a generous donation in honor of Dave and the millions like him who are waiting for answers. Our research momentum is powered by you. Thank you for your generosity and for standing with us in our mission to end ME/CFS. 

more bonus from Stuart Murdoch of Belle and Sebastian sharing his support as a fellow traveller

2 x The Atlantic

Fatigue Can Shatter a Person

Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.

By Ed Yong, July 27, 2023

Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

By Ed Yong, Sept. 26, 2022

PS Ed Yong is a former staff writer at The Atlantic. He won the Pulitzer Prize for Explanatory Reporting for his coverage of the COVID-19 pandemic.

But hey Ed Yong has a newsletter “Ed’s Up” because *everyone needs a newsletter, right?*

Healing: topsy-turvy hospital day (notes)

Memo: Hospital day yesterday, waking up completely wiped out but felt heard by the doctors, a lot of fluids went out and more went in, referrals for some complicated/intricate tests and evaluations. Unfortunately, (for me) my doctor got a “great opportunity” to move to Kyoto University Hospital #MECFS

No photos allowed in hospital (fortunately)

Summary: batch of new tests today, adjustments to medication, appointment for blood flow to the brain test and referral to a specialist check possible residual impact for multiple concussions. In other words “just a normal day in our lives, isn’t it?“

Too much info:

IV injection combination adjusted (neurotrophin plus various B vitamins, C vitamins and “trace” minerals

One recently prescribed medication to deal with cervical spine pain (from dislodged disc pinching nerve) discontinued due to negative reaction

Blood flow to brain scan test scheduled for early August (common conundrum amongst folks with my illness, makes standing up difficult and prone to fainting and in my case at least, debilitating headaches especially during changes of air pressure in typhoon season

Four (or five) medications (two of which are basically vitamins) which I’m tolerating well, increased

Two medications which I am now only using situationally rather than regularly, appropriately decreased

Two of the five traditional Chinese medicines increased in frequency, the other three remain the same. Doctor pointed out pulse is stronger/“less thin” and abdomen is improving (less pain and tension) and tongue is looking healthier / FYI: pulse, tongue and in my case abdomen are the three primary diagnostic tests for Kanpo

Five vials of blood drawn for various hormone/chemical/vitamin/mineral levels testing (thanks Theranos :))

Referral to a brain/neck injury specialist in the allegedly charming town of Onomichi, where a rather legendary doctor keeps his practice rather than moving to the “big city” which is quite refreshing. My kindly doctor was thoughtful enough to send me there rather into the gray sturdy chaos of Osaka. Bless her heart. No date yet but may be can make a little bit of trip out of it to see the town with so many people adore / Maybe I won’t leave and set up an advance camp for our family

Had frank discussion about mental health issues but not just about “general hopelessness and/or PEM” but rather brain hormone levels (serotonin, dopamine, serotonin etc.) plus effects of various brain injuries, and efficiency/workingness of various nodes and glands (no I did not mention the pineal gland specifically because didn’t want to act too much like a DMT seeking New Age hippie ha ha) #InsideJoke #NotReallyFunny

Asked for a referral to English-speaking psychiatrist who won’t “just talk“ and/or definitely not SSRIs.

Unfortunately my kindly Dr has also taken at “great and prestigious new opportunity” at Kyoto University Hospital, once again proving my theory/rant that Tokyo and Kyoto suck all of the oxygen out of the rest of Japan.

There was a very nice formal letter explaining all of this but truth is I am terribly disappointed as she was extremely empathetic, open to new ideas, read the articles i provided, and spoke good English which is super helpful for medical stuff. A real kick in the gut for me – super disappointing and nervous about her replacement. I cried a little bit in her office and there’s no crying in Japan

Also: Set up automatic delivery with the pharmacy so I can start to come to these appointments by myself by bus (and not haul for shopping bags of medications home with me on the bus) because it’s becoming wife’s busy season so I need to be a little bit more independent and cognizant of her time. (I take care of the dishes and laundry etc. at home, doing my part)

Now at a quirky café to replenish as I am somewhat white as a sheet and fading. {I think I mentioned this café in a previous dispatch, noticed a cute post box from the outside and the name “liberal” / have now visited twice, noted many cat tchotchkes scattered around – learned the friendly fellow took over from his dad who started it 47 years ago, the wife cooks one magnificent lunch set choice per day, the set above cost ¥950(!) + I spend an extra ¥300 for a coffee to go with the hot tea and the cool water for a triple beverage fun / I will go here every time for recovery after my hospital appointments, especially when traveling so lol when I tend to “forget to eat” which isn’t a good idea / I did my “card game“ in which he chose two of my postbox friendship cards which he quickly put on display, what an honour!

I guess this has become my diary entry for today. Thank you for reading.

Update: the whole pharmacy routine worked out really well as my medication‘s are not delivered by courier the next day and my morning, midday, evening and bedtime medications are organized into little packets, which match along well with a little sachets of traditional Chinese medicine.

Healing/ Diary: coffees, iv, pizza, liner notes, friends & flowers ~ expanding envelope

Just a date/time stamp post to remind myself to update my medical diary: went for IV (by bus) 3:30 PM yesterday 2/22/R5

{Also I might need to trim my mustache slightly}

Before the medical appointment, we did a few things around the house, mostly pulling the suitcases out from the barn and errand them out… this is the first floor of the barn is looking these days… Have also started a “emergency preparedness kit“ as well as having the secondary stereo set up and records here.

Realized a couple of beautiful wool sweaters were a little worse for wear as well so washed and hung to dry to survey the damage.

At some point along the way, Ichi dug up some turmeric from the garden.

While getting the iv, listened to @TBeanpod “Valentine’s“ episode… {I guess I’m a bit behind but I always enjoy glimpses into his life and parental wisdom about molding growing kiddos. Thanks for the goodness}

Feb. 21 Typed the “liner notes” (so to speak) for 2 mixed CDs + 1 mix cassette tape… made like last November or December but got stalled out by a rough couple of months. All ready for the post office now, decorated and everything!

Includes a mix of my spoken word poetry/ambient field recording audio collage creations, a few spoken-songs i crafted from loops and samples, songs by musician friends with my words & their music, some spoken word i did on a heavy (Bad Wougar) album, and other DIY recordings.

And yes tracklists are really typed (albeit poorly) on an Olivetti Lettera 34 (like 32 but ¥ key) #Typewriter

Every CD/Cassette is different (because i like to make things difficult) and the liner notes are all original as well.

One time, i made a video of typing these for no particular reason… well I guess it’s because i like the sound and might keep someone company on a lonely day.

Example video: Typing Liner Notes in the Kura (with Joe Strummer vinyl)

I am always tired & like to sit on benches #mecfs

2/20 Stopped at a lovely coffee shop after visit to orthotic foot guy and before a visit to a park for picnic.

They even had a tip jar on the counter which I had never seen in Japan before… But it was deliberately filled up to the top so was really they’re just for aesthetic purposes and ambience rather than expecting a tip :-)

Took coffee & sandos to a park and saw a great little “hangout hut“ made from repurposed sake (or maybe miso?) barrel idunno at the best kids playground park I’ve ever visited in Japan… {Like it’s not even close as most playgrounds are a rusty chin up bar, a broken swing and a non-slippery slide}

I did take a couple other snaps of my darlings but for now, here’s a barrel with some holes in the side and a roof…

And I want it in my backyard

2/19 this morning, the two darlings were up early making a drive in the K truck to a bakery for a variety of fresh bread which we enjoyed with hot cocoa for him and coffee for us.

Then we organized his “next round” of clothes as he’s growing out of current stuff. Much tidying!

They headed off to tea ceremony, I watched a bit of a hockey game while eating a Bento, scanned a few tax documents, put away some cleaning supplies and then into dark bedroom with head spinning a bit so uploaded some videos and transcribed some poetry notebooks in the dark.

2/18 darling wife’s band came for rehearsal at the house, there are now 3 kids and 1 more on the way amongst the members! #NextGeneration I made 3 kinds of tea and served on various China + set-up/took a promo snapshot for their upcoming show. I should note that while the band was rehearsing, I snuck out to the kura barn to set up the drum set you may be caught in a previous post. Came back in at the one hour mark to do the tea service and then stealthed away to fiddle.

Later we made pizza & he’s got the skills down solid now – spins the sauce with a spoon, adds toppings like a pro(ish).

So glad we have a full sized oven but still want to make a brick/clay pizza oven in the backyard… eventually. Will be so handy for birthday parties and get togethers.

Redundant notes about the illness

I’m getting closer… Eventually I can be VanGogh’s Postman

After a really rough January, slowly expanding my energy envelope little bit by little bit… Trying to get a little bit more stable for the upcoming “BC invasion” (details coming) plus several groups of guests coming to visit in March.

Recap: (as you prob know) I go to Okayama university hospital once a month for a trifecta of treatments (plus there’s always some kind of admin stuff to tend to) then weekly to a local clinic for additional IV cocktail, plus seitai treatments 2 to 3 times a month, although currently the doctor is ill.

++ take various medications, supplements, vitamins, and traditional Chinese medicine concoctions at checkpoints 4x each day. Some of the medications are “off label” usage (not specifically designed for #MECFS) as well as some other new unique “experimental” approaches [neurotrophin] and “ketas” (generally an asthma medication which increases blood flow to the brain… #NotScientificExplanation) neither of the above are “FDA approved” afaik

A note about “ketas” for #MECFS curiosity seekers (from me-pedia)
“Drugs such as ibudilast (brand names Ketas or Pinatos or in Japan), an anti-inflammatory drug used for over 20 years in Japan, mostly for asthma and post-stroke dizziness.[7]… Ibudilast can be combined with opioids to reduce chronic nerve pain.[7] Ibudilast is also a phosphodiesterase (PDE) inhibitor, and crosses the blood-brain barrier and suppresses glial cell activation.”

#MEpedia “Vagus nerve infection hypothesis”

Have also started a “new version” of a somewhat controversial #mecfs medication which i won’t mention yet.

Also use variety of vitamins and supplements… was using a lot more supplements but not seeing significant impact and becomes rather financially difficult to be honest and a lot of work to source at all.

I have also investigated low-dose naltrexone but that’s a no go in Japan.

Thinking of a friend

Drying tree blossom petals while thinking about a friend ?

Flowers with thoughts of a friend

Thinking about a friend… #sigh

Me: looking exhausted & ‘real’

There is a part in Wes Anderson’s spectacular film “Isle of dogs” where the beleaguered canines are given a serum injection which instantly cures dog flu, snout fever, and solves the proliferation crisis – all in one shot. The first dog “Chief” excitedly remarks how his eyesight, equilibrium, nervous system issues are all suddenly is resolved as he brightens up with a spark. Eventually, I dream that there will be a similar solution for MECFS.

As I go along, I *apparently* snap ridiculous and certainly unnecessary and unflattering photos of myself looking exhausted. Usually, I share the photos where I manage a smile. (if you’re smart, you know my “tell” of when I am manufacturing a smile). #PokerPlayersNotice. Some of these snaps of possibly on other social channels as a signal that I’m still alive.

I’m not sure why, it’s only sort of a recent habit, but I think it’s because in the future I can look back and say “right on Davey, you hung in there, you didn’t give up, you didn’t take the exit, and look at you, you’re doing right now”.

Continue reading Me: looking exhausted & ‘real’

Pacifica Pier: versions & evidence of me, evolving

During my “missing years” or the “healing ramble” or whatever, there was sort of a circuit of safe houses, hideouts and caches i rotated through which included Pacifica, California.

“Im just a constant headache.” is how I felt for a long long time (although I did not paint this myself on the pier)

A couple dear friends there looked out for me as I received of medical treatment there – some planned and some ummmm unintended.

As it goes, while looking for something else, I kept coming across mah ole face on four separate visits and right away could see the change as dealt with so much well, change and loss… “Losing everything” / my health, my erstwhile career, my energy, my mind, myself, my parents, and so much more.

the pier takes and “L” shape / you could often hear circle language is spoken, sometimes kids selling something, crab pots, fishing lines, a few dingy sinks for gutting your catch

The pier would be usually occupied by a scattered assortment of fishers and crab catchers, and others like me, just watching the waves rolling, fog twitching, the occasional hearty surfer, and every once in a while a humpback whale.

As usual, there’s more to say about “all of this” (yes, there’s a pending medical – specific report in the slow moving “healing ramble” series) but for now, I present to you: me & Pacifica pier which was a safe refuge for me as could walk back-and-forth – at the foot is a coffee shop serving clam chowder in a bread bowl and a Matcha latte, the street has so many cute little funky beach ‘shacks’ (any of them cost in million+ now) that, due to zoning regulations & shoreline protection mandates, couldn’t really be changed… so the area of town was sort of stuck in a past decade and showed it’s working class roots and rum running/bootlegging history.

Minor annotations included with the photos. Remarkable to me anyhow & a reminder of what “we” are capable of, I mean if I am able to tough it out, evolve and change with it all, you certainly can.

2014 / not happy with how I found myself in life as it was
2015 / it turns out the “unknown“ was a lot more dangerous than expected / and yes, it was much worse than this suggests
2016 / trying really trying to intrepidly step in to the unknown
2016 / an unexpected and unfortunate trip has no picture of my face but this is the coffee shop at the start of the pier
2018 / came to deposit my mother’s ashes off the end of the pier and took a moment to think about the changes my life would take in the months to come
2017/ Pacifica on a scrapbook and a Lomo rolling with me through Thailand

I Hell<3 Pacifica. Grateful.

wandering, wandering, being grateful and dreaming about the future
and oh how we rambled!

Field Notes: Auroville, observations feeling lost (at first)

Intro / Disclaimer (longer than actual notes): I hesitate to publish this flashback diary, not because I fear away from my notion of embracing translucency in personal archaeology, but rather because these are notes from the first couple of days and after sort of a disconnected start (keep in mind, I had just come out of several weeks of fairly solitary time at an Ayurveda hospital).

Anyhow my (I don’t know how to say it) my “community building instincts” kicked in and I made friends with some fun Italians who had a house and some herb, we did some slacker yoga, met a young Indian man studying sustainable architecture and connected him with the wider hemp as a building material community which has gone on to be fruitful relationships, met some wonderful wise elder ladies from Iceland and Switzerland, sort of fell into my rhythm.

Matrimandir thatta way

Plus, I learned logistics about “how to live there which basically is “if you can contribute something, you can make it happen”.

So this part of the story which sounds a little bit bleak and, in many ways is accurate though as in recent times (as a round this up in 2022,) there are emerging and ongoing controversies about how a place like this should be governed which brings in a lot of questions about privilege, colonialism, ecology, status of the land itself, the intentions of founders (and how much that matters and how is to be interpreted), which all brings tension between long timers, and newer inter-lopers, and the people around the international enclave who are just living and trying to make the best of their life in a larger country which still kind of figuring out who wants to be in the bigger world.

oh here is Matrimandir

So,… there’s this part of the story and then the part where I had to leave suddenly upon the passing of my mother and make a rapid trip to Utah, (talk about culture shock!), on the middle, there were some pleasantness which I’ll try to articulate along the way under separate cover.

In short, I found that there was a need for archivists, librarians, radio talkers, communications types and I suddenly saw how I might fit in and disappear there forever.

Of course I loaded up on artifacts, ephemera and items from the bookstore with the teachings of the founders and various dispatchers and missives about peace and community. (Some made it in to a scrapbook chronicling the heart-wrenching trip from India to Utah and beyond).

I’m saying this because there’s a lot more to say but in the meantime I was also dealing with the crisis of the withdrawal of Rs.1000 and Rs.5000 bank notes from circulation which resulted in empty bank machines, and no way to get cash (which was particularly amusing/ironic in this cashless society when one really needed cash to not use cash – but without a bank account well… folks were flying to Sri Lanka just to exchange money and come back which seems to defeat the whole point of an ecologically sustainable and equitable community!).

As fate (if that’s a thing) had it, things went differently, very differently, but this place remains in my head as I try to sort out the conundrum to address here on these first tentative days, but also in my heart simply for the fact that this kind of “unique/weirdness” exists.

I hope to return, or maybe not, I just hope something like this exists in some utopian form. Yep, one can dream right?

Added a few snapshots in here, others will go in a sort of “in between days” post” (pardon my notes to self).

Oh and more about this time appears in audio form as “Field Notes from Elsehwere, Choogle On #121” in which i tell *way too much* about the missing years.

Auroville Observations

So far, its much more intense than intentional. Can a community grow into a city without bureaucracy, boards, meetings, committees, resolutions, motions, applications, infighting, mandatory contributions and acronyms?

Seems perhaps not, or is it? It seems not. Or is it rule dependent? Or personality driven?

But strong leaders go rogue and sex and power corrode.

Frequent complaining, loud motorbikes, local workers and no hellos and/or Namastes.

I have tea in a stainless steel cup. Will food come to me as a notice my cane? I suspect not.

With respect to intention and effort, are you simply trading one framework for another with new names?

various shrines but not “religious”

The spirituality if any is in the background. “Love” is the word but not evident in action. No hugs, no warmth, not cold communication but hardly an emotional symbiotic place or perhaps not physically evident.

Now, one full day in… Awaiting dinner after fumbling through woods on a dark trail. Why am I so unsatisfied? All afternoon scrapbooking, letter/package making-is it that I don’t understand this place yet? The only people who come to talk are other new people or “tourists”.

restaurants are neither businesses nor not-businesses, cash is no cash but cash

I get that long timers make this community for themselves and not for passers-thru but, still… This is neither a spiritual holy land nor brilliantly efficient or revolutionary self-sufficient nor rock ‘n’ roll fun nor artsy-craftsy-though all those elements exist.

No “religion” per se but cult of work-that’s sort of OK-not warm but not clinical. No hugs still, no hellos or help all day long. So many complainers!

Even at the visitor center-everyone is on mobile’s-services spread out making wearing motorcycles and scooters necessary. Townhall was well, a Townhall. You change money for a card with Receipts and *sign here* for everything.

I buy and read all the books and I’m down with the charter and respect and work but somehow it feels oddly-indifferent to outsiders no doubt and unashamed to say-a shortage of houses but no quick prefab dwellings.

Old ideas are cool with local artisans but if a shortage is thwarting progress from only 2800-ish to a projected (and seemingly unreasonable 50,000) how well it scale?

I don’t care as I like small but masterplan seems dependent on a few “lions” and long timers. Sure it makes sense in a traditional conventional sense but it all seems so fragile and rather self-congratulatory while more or less like the old west of the myths of America – pioneer families incorporating a new town while carpet-baggers roll in often with new ideas and are branded “newcomers” even after a decade or so.

New arrivals who wish to settle are vetted after a year or longer. You have to contribute *something* of value (skills, building, biz…) which the community deems needed.

But the “community leadership” is nebulous and confused (from my vantage point). The newbs post bond in form of an air ticket home – your “home” isn’t here, it’s where you “come from” not like rainbow gatherings where the greeting is “welcome home” – maybe because of the outside political situation, hedging bets with a “punt play”.

The pain and guilt of socioeconomic class is palatable and unresolved.

Yet here I feel so alone despite surrounded by people for the first time in weeks. But no eye contact no warmth – to me at least.

Now I will eat and hope it’s just a bad day despite a walk to the visitor center, watching an introductory film, purchasing books with rupees for which change is difficult, chatting on blankets and towel, getting “non-cash” card, buying items to eat: pears and curd and cookies on bed while I listen to favorite music but all I think is “I am lost.”

mighty banyan tree
Continue reading Field Notes: Auroville, observations feeling lost (at first)