Roll slow, be gentle, eat healthy, look out for your vulnerable friends and neighbours, minimize TV, start a novel, watch all the foreign films you’ve always meant to, crack open War & Peace like you should’ve years ago / hit me up if you need some podcasts or train videos #hugs
As it goes, a photo from 2013 popped into rotation today: me as usual with beard, specs and art in the background so… I snapped another quick similar pose and noted that despite the hard miles of these last seven years – all the hospitals, all the treatments, all the medication, all the stopping medications, all the loss (name it), so many dear ones passing, at least four concussion level falls & crashes (Vancouver, Adelaide, Pacifica, Chiang Mai), so much being gone gone gone lost (not wanting to be found), finding myself in harms way intentionally and otherwise, some terrible decisions, some great decisions, looking anywhere for home, not wanting to be home, forgetting about home – so many > too many places – and then somehow found – with all of “that”, I don’t look all that worse for wear.
The Buddha is quoted as saying, “to gain anything, first you must lose everything” I did and then found out that Buddha never said that – (dang *experts*). Regardless, some of what I lost, I picked back up, other parts I left behind.
Seven years which felt like 17, and i’m only scratched & dented gently & mostly on the inside. It’s good for poetry if nothing else.
70 more to go. Still. At least.
PS Noting that there was a lot of damage and a lot less smiling in “the between years”. Might share at some point, but just came here to say thanks for all your kind words and support. Almost convinced I’m worth it 🙂
Years ago when I was at an Ayurveda Health Home in Pokhara, Nepal (which was one of the most wonderful experiences of my life, especially in this “healing journey”) the kind doctor suggested I use turmeric daily.
When I asked her what was the best form/way to purchase this, she said “grow your own” and I explained it was difficult because I had no home, no prospects of getting one, and was rambling and rather lost so a garden was not really possible.
Now. Three years later, I have a life, a home, a garden, and turmeric which is now made into things daily.
Note: many good things about this plant especially anti-inflammatory properties.
Also, in this photo is gorgeous ginger, again freshly harvested.￼
Just a note: As it goes, my baseline for a “good day” is: laundry, compost, dishes, bath time with baby. Everything else is a bonus. Recently I’ve been below baseline which means I have to be extra gentle on myself and more time in a dark calm room. ￼
Folding the laundry also serves as a meditation of sorts. Oh, and (as I talk about *all the time*), we have a magical, super-efficient, washer/dryer all in one which uses the bath water… All of this makes the process easier on me.￼
Stretch-time include: making pickles and writing postcards. (Note both activities have low margin for error and can be done in short times of activity)￼.
Special energy occasions include: making scrapbooks and paintings and poems. I “want” to be doing these things all of the time as my creative brain is going going going but execution is challenging.￼
What I came to say is: laundry is the *only thing* I stay up with & Bathtime with baby is my very favorite thing / 40°.
Bonus: here’s me and the dude go into my seitai treatment (which provides me a little bit of physical reset)￼. ￼
Still in ME/CFS crashmode… nevertheless, managing to write many letters and postcards (In hopes of bringing sparks happiness to others as well as keeping my brain turning) ￼and do bathtime with Ichiro (the best).
Still, gets a bit frustrating being stuck.
Pardon my saying this out loud, just trying to get it out of my head.￼￼￼
Briefly: Annotations and updates about health situation￼
So much goodness in my life these days (wife, baby, home) but still there are things which challenge me so very much —mostly the pain and brain fog and constant unrefreshingness and crippling fatigue of my weird illness (ME-CFS) but no one wants to hear about that 🙂
There are two good things, ergo:
1) I’m *doing better* than I was before the 3 extended Ayurveda in-patient stints (India, Nepal, Sri Lanka) which reset my body￼ and cleared out the copious medication as prescribed to me by doctors in Canada￼/US which almost took me down￼ to bottom of the sea #rough (benzos, opiates, ssris, anti-spasm/etc…)
++ Simplifying life, reducing stress (new life), being in one place all add to this. Keep in mind once “lockdown/quarantine” is over, nothing really changes for me… No big deal, I have hobbies.￼
2) In the wake of the “current public health viral situation” ™, there’s suddenly a lot more attention on my consortium of illnesses due to the “c19 long haulers“ who are experiencing the same sort of symptoms (brain fog, sensory overstimulation, unrefreshing sleep, muscles/joint ache, etc. etc.) and being told by doctors that “there’s nothing wrong“ so suddenly, there’s a lot more science overlapping to folks like me.￼￼￼￼ As such, virologists and super-computers are suddenly pointing powers towards cracking codes which relate to me (no I’m not selfish)￼.
And suddenly there’s all kinds of “main stream“ news coverage and discussion about this illness *and* emerging tests coming from Montréal of all places to determine *real* biomarkers based on “PEM/post exercise malaise”.
I mention main stream because a lot of the coverage and information about my illnesses (ME/CFS and Fibromyalgia and CSS) get overlapped with other “things” and a lot of crap about it being “in your head“ and you get referred to cognitive behavioral therapy and gradiated exercise therapy both of which do more harm than good and are clearly debunked as useful treatments. And holy wow, so much snake oil and magical treatments and gurus out there… People drain their life trying to find a way out of this deep dark well. I know, I am one of them… hundreds of dollars a month on supplements and B vitamin injections and saunas and trigger point injection therapy and blah blah blah.
I’m writing this because after a great art exhibit at buddy’s goat farm – where I really paced myself and was careful and all of that – I’ve been in bed/crash mode for three days (I do the laundry and dishes and take out the trash and compost so better than other times in my life)￼ since.
(Keep in mind various plant medicines which would be rather fortuitous are simply not available in my current geographical situation)￼.
PS this is not a request for advice, sympathy, empathy or whatever… How are you doing?
PPS my heart is happy *and* sometimes my brain works so two out of three ain’t bad￼
More: And yes, sending letters and postcards is *therapy* and brings me joy as I can do this in simple little quiet times, spark my brain and bring happiness to others (I think anyway :-)). ++ Bathtime with Ichiro is great for both of us. The hot deep Japanese ofuro baths are a huge help for me
Note to self: The important thing is not to get frustrated when I “crash” as hard as it is / drink tulsi tea, hot bath, fresh air, low stim
Note: I’m sharing all these links because in the last 3 to 6 months there’s been more “actual science and reporting” than in the previous 6+ years since I was diagnosed (May 2013)
Note: It’s walking through a foggy mysterious painful confusing maze / obstacle course every day > sometimes I find a footing and float myself out into the world – Literally or metaphorically – though I don’t much make a distinction anymore. I’m alive, I have a pen and paper and tasty beverages so I’ll take that
PS in reply to some messages, my diet is aces (hooray miso, genmei, fish, pickles) and I have “done the work” with various eliminations and eating systems over the years.
Yes, counseling, lots of it and very helpful at certain times. (You don’t even have to ask about journals do you?)
There’s an evolving/backfill inspection at my web archive called “healing journey” with more of curious (a lot more in the draft folder including completely parts of my various things at Ayurvedic clinics and hospitals in Thailand
Memo: After frustrations with “one test at a time” I (somehow) went daily to hospital in a anonymous workday city and did 27+ different (sophisticated/specialized) tests especially to illuminate /eliminate other possible diagnoses or identify problems, plus MRI, EEG etc. Also loads of traditional Thai massage (the kind with a beat you up & stretch you out / not *that kind* …)
(from a Twtr thread, here for posterity) note: find a better way to archive all this if possible
One of the most jarring and upsetting things I’ve learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune condition called myalgic encephalomyelitis (ME), is particularly horrific 1/
Hello Hannah, thank you for this respectful conversation. In 2013, my life changed overnight from ME. I was super active and invincible and it completely wiped me out… Was in bed in a fog for weeks / months then years on end. I do a little bit better now, there’s no cure…
2/ doctors shuffle you around to specialists, disbelieve you, read outdated research about “graduated exercise therapy”, send you to a psychiatrists and cognitive behavioral therapy classes, &/or just string you out on various prescriptions (ssris, benzoa, opiates), it’s brutal.
3/ So many people simply “vanish” from life, there’s scant “enthusiasm” from public supoort very little fundraising, nothing but hassle from insurance and government disability programs, Comedians joke about it, friends disappear, loads of “snake oil” and so much disrespect…
4/ Each night is an awake twisting fog, there’s no refreshing sleep, the first sensations in the “morning” or “oh my Gosh, everything hurts and where am I and what the fck has happened to my life?” and it takes everything you have just to keep clean and fed and pushing on.
5/ I lost everything – career, confidence, love, enthusiasm, hobbies, friends… Somehow some people stuck around and I took myself to a far away place to an Ayurvedic clinic to sort of “reset” myself. Then, build a new life within these new boundaries.
6/ With the current pandemic, there’s a lot more awareness suddenly springing up and I very much hope that with all of the researchers and super computers paying attention to these weird cracks in physiology, something emerges. So many lives simply become invisible from this.
7/ Many deplete any savings chasing down cures at “famous” institutes and hospitals, try every sort of supplement, IV, natural and otherwise, various therapies – anything which might give a glint of hope, then again “crash“ and fall down into sadness. Ends so badly for many.
8/ There’s an organization called “open medicine foundation” doing wonderful work and coalescing top researchers around the world and advocating for patients. From my view, more has been done in the last 2 years than the *previous however many* / A fine organization to support.
9/ There is a documentary film by @jenbrea called Unrest which raised a lot of awareness / it’s super hard (for me anyway) to watch as well, I see myself and ummm, it’s really hard. Dreams broken and infinite lost potential. The stories are important, real people, real sadness.
10/ I don’t know wish this absurd illness (alternatively called something which minimizes it and another name which is almost impossible to say!) on anyone. Sending these note out into the world in hopes of fostering understanding and please please please a cure. #Fondly
I’m of the mind to believe in everything and nothing, and keep my mind open, except when it needs to be closed and taking the things that serve me well and to let go of the things it don’t except when i’m wrong… In other words: going with the flow and seeing where the current takes me.
Anyway, this is to say that I have a wonderful friend who, on a few significant occasions, pulled Tarot cards for me, and read them diligently and insightfully, sharing the messages – which I then processed, and keep them in a scrapbook where I found them to be shockingly prescient at times, and at others, well maybe less so regardless, very grateful for her kindness and wisdom.
In this case, I believe was my birthday in a really hard year, I felt very lost, scared and alone and in great danger / turns out i was all of those.
I went from being very social and active to often housebound due to a chronic and complex illness, and spent extended stints sequestered at Ayurvedic clinics & various hospitals …
Finding yourself cooped up due to public health situation? Your solution is: digging into projects which maintain your mental acuity and move your fine motor skills but also, very importantly, produce something in the end.
Like: making scrapbooks of life ephemera, organizing letters and photos, writing down your stories, make a podcast, read war and peace (or similar), write a novel (desert solitaire or similar), make some songs, write some poems, compile your journals and diaries, embark on “personal archaeology” by sort-ganizing your old report cards, certificates and participation ribbons / put them in binders with sheet protectors or make a shadowbox… I can go on and on but I think you get the gist.
Or this is a great time to take an online course about something you dig (I recently did a Japanese book culture course). Many universities have all sorts of free courses (start at open culture or Internet archive) plus you can just learn something new on your own via other folks like you, i.e.: how to make Lo-Fi beats, how to play the ukulele, how to paint with oils… IOW, Get started on something interesting which can be a new hobby and produce some neat artifacts,rather than just trying to level up on a video game.
Verily, choose activities with intentions / of course, chill out but consider watching a specific classic epic movie (ask me if you need some tips) rather than sifting through nonsense to binge (and in general minimize mindless, high-twitch screentime).
Look at this as an opportunity to do all those little projects you’ve *always meant to do*.
Also, letter writing is cheap and cheerful and immensely satisfying, especially for others who are routinely shut in (elders, disabled, remotes etc.)
If you need someone to cheer you along or give you some more ideas are examples, of course I am friendly if a bit slow sometimes.
I will note that it’s totally up to you what do you do and all that, I’m just encouraging expansion of your brain through art and culture and creativity – and im speaking from so much experience.
The facilities were fantastic – simple and sincere and functional, the staff was next level skilled & diligent, and the skill of the key medical officers – led by Dr Rishi & my lead Dr. Rumee – empathetic, knowledgable & superb.
The cost was very reasonable (especially compared to “regular life“ costs of living in Vancouver/San Francisco/Seattle or whatever) ￼assuming you’re capable of getting to Nepal… I know it sounds daunting, but I have written up a little advice sheet about traveling with a chronic illness to make something like this much more easy. Hit me up if you want this riff.￼
Visits to a few wonderful, unique, intelligent clinic/hospitals in India, Nepal and Sri Lanka played the most critical role in bringing me “back to life”.
It is worth every penny, every mile, every effort.
Shared with respect and understanding that not everyone can do *this* – i have another riff about “why” to seek medical care or healing treatment elsewhere (not in US/Canada in this case). For now, use it if you need it, if not just pass along.
Request wheelchair service well in advance and use it proudly – Besides getting you around the airport, you fast track through security and immigration lines / You are usually be first on and last off the plane, be patient
Fly Tuesdays and Wednesdays mid-day, the airports are most mellow at this time (also tickets usually cheapest)
Dark glasses and earplugs/noise canceling headphones for when you’re in the airport
I use an aisle seat so easier to go to the back galley area and stretch if needed
Lavender oil, compression socks, eye mask and your most comfortable sweater for the flight, dress respectable to increase chance of upgrades (and because you are sharp like that)
When flying far, for me anything longer than three or four hours, book a hotel in (or close by) the airport at the other end – in some cases you can get wheelchair ride to the hotel to crash out and recover. Bonus points to get one with a bathtub
Check your bag, only take a small carry-on with comfort items, don’t try to be that “efficient business traveler” and / or save money with just a carry-on
Tumeric & aspirin and water water water – Did I mention noise canceling headphones?
Put on an audiobook or chill music… Keep the sensory stimulation low by not watching movies especially on the crappy seat back for the videos. For me, the fuzzy screens spin me out plus you see all the other anxiousness and activity going on
Get a credit card which gives you access to airport lounges… go to the airport early, find a quiet corner and hydrate and snack with protein rich foods so when you’re on the plane, you’re not eating the crap or being interrupted… Plus when using wheelchair service, best to go well in advance as some airports have a limited staff performing this service
When you board (using wheelchair you’ll probably be first on) introduce yourself to the flight attendants and mentioned that you may need extra water and make sure you are close to bathroom if you need a little sensory de-stimulation
Not all of these tips are applicable to everyone obviously but for me dealing with ME/Fibro find them to be critically handy
Oh one more thing, seriously don’t try to do a lot of stuff when you travel, for me I go places to find bookstores and quiet coffee shops and simply be somewhere else. Just because you are a “somewhere else” doesn’t mean you suddenly have a bunch of energy to go out and about and meet lots of people. Avoid restaurants at busy times as well…
For me this is sensory overload. All for now, curious to hear your tips or any thoughts about the above. Also this archive is laden with other riffs about healing elsewhere and taking baths.