Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I'm more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study -- one that's so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then...
3. Bring your attention back to the image and the breath.

The image didn't do me much good – I think fire is a little too emotional for me – but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist... with my odd and beguiling little cat softly nestled against my leg under the covers... did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, "inspiration" means both a breath, and a sudden idea; the root word means spirit. There is no divide between these ideas.

(Life, breath, spirit, ideas... how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I've been breathing intentionally for decades. In my 20's, I taught my ER and ICU patients a particular form of breathing which, I'd noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood -- no matter what they came in with.

In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can't be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the "calm down" part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I've learned a slightly different technique from the same psychologist I mentioned in my last post...

1. Notice my breathing. That's all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest -- inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are -- though it makes sense, when I think about it...)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I've forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:

Breathing well makes everything better.

It shouldn't be that simple, but it is.

Excuse me. My limbs need to be heavy and warm... In a good way.

Need more than "Dysphoria"

There's an impressive clinical word for "feeling yucky" -- it's "dysphoria." It's literally the opposite of "euphoria."

One of these people is Dysphoric and one is Euphoric. Guess... :)

The trouble is, there are so very many ways to feel yucky, or dysphoric, especially with a disease like CRPS, but only one word to describe it all. Our experience of life no longer maps to that of a normal person, but language can't describe what we experience. However elegant it sounds, "dysphoria" is inadequate.

That's about to change. Here are some words I'm adding to the lexicon, a short selection of the most common and most describable (because some are indescribable) of the dysphoric states I move in and out of...

Dysphoria Sunnysidedown
The particular kind of yucky I feel when I get up before I'm ready. It takes about an hour, usually, to avoid D-Sunnysidedown.

Otherwise, I get tremulous, nauseous, my heart races (but quietly), and I'm aware of a particular kind of fragile ghastliness in a minor key. If I really get up too fast, I fall over -- muscles quit. This adds up to Dysphoria Sunnysidedown.

Flip 'em!

Dysphoria Darkofnoon
This is a natural consequence of D-Sunnysidedown and usually happens later the same day, but occasionally happens by itself. Darkofnoon involves feeling peculiarly ragged (as if my adrenals had been in overdrive for hours, which is accurate if I arose too fast), forgetful, physically weak, slightly shaky, and of course nauseous. Sometimes dizzy spells.

There's a more solid kind of ghastliness, more in a dominant chord. Dysphoria Darkofnoon usually happens when the day is brightest, between 11 am and 3 or 4 pm.

Lying down periodically helps me get through the day, but I'm not likely to be quite right until a good night's sleep and a proper start to the next morning.

Dysphoria Hate2Bme
Stunning levels of distraction, with a dense pale-grey cloud wound around and through my mind and perceptions, dissolving what it doesn't hide.

It insulates me from such trivial issues as major appointments, where I put the keys, and the state of traffic lights. I can tell where my body is in space, but not how it feels. Likely to injure myself, risking further spread.

It would be tolerable if there weren't any consequences or anyone leaning nervously away while looking at me with worried pity. When I'm experiencing Dysphoria Hate2Bme, the humiliation and underlying fear are the most dysphoric elements, though there is something intrisically unpleasant and destructive-feeling about the dense grey cloud.

Dysphoria Mitoshriek
This happens when I've overtaxed my body, though sometimes it happens by itself. I think of it as the mitochondria in my muscle and nerve cells all setting up a synchronized shriek of anguish as they fall over in a dead faint. (I don't know how they scream while fainting, but they seem to manage it.)

It feels like my soft tissue threatens to dissolve when I try to get up or do anything. There's a sort of wholesale, pitiable unpleasantness in mind, body and soul with the least physical effort.

My muscles react with a sort of "You're kidding, right?" when I try to use them, and if I push through in order to get something done, it's done by pure determination and then I'm out of commission for a couple of days. I pay hard for pushing back against Dysphoria Mitoshriek.

For all I know, my mitochondria have nothing to do with it, but mito self-care seems to help: tons of antioxidants, lots of vegetables, and as much horizontality as I can stand. I can tell when it's time to start moving -- about 3/4 of a day after I start really wanting to.

One thing that is no worry at all: I don't ever have to worry about being too lazy.


Your faithful writer at 2 yrs old. I refused help; I was going to
cross that dry riverbed all by myself, come Hell or high water.
Photo: JLD Tifft, used by kind permission :)

Bodies and minds, like engines, were made to go, and I'm most at home when I'm going in mine.

After the intense inward training of living as usefully and zestfully as possible despite CRPS, can you imagine what it would be like to have all this determination and energy unleashed on the world if I were finally well again, and could focus on, remember, and do things on a vaguely regular basis?

Can't wait to find out.

So this is peaceful ol' me...

...saluting all that keeps me from that.

Speaking of which...

Marathon training note

I'm stable with walking 1.5 miles at a time, and recover fast enough to do more later that day. Will aim for 1.8 later this week, after recovering from this trip.

Despite spasms and cramps etc., I made it all the way home in 1 day yesterday, instead of splitting the drive into 2 days as I usually must. This amazes me. My eyes didn't cross and my mind didn't splay into a messy 10-pointed star, both of which usually happen after 4-5 hours of driving with hourly breaks. So, there are some key neurological pieces that are definitely doing better.

Yay cerebral blood flow! Yay exercise!

It might be smart to take today off and stick to PT exercises and tai chi. No more bloody relapses. But boy, I sure am heartened!

New Mexico's beautiful names

Cimarron, Eagle Nest, Angel Fire, Taos, Chimayo, Santa Fe, Bernalillo, and the mouth-tickling Albuquerque... BEST names of any state yet.

JC checked all the vehicle fluids at the start of the day and is doing my laundry at the end of it.  He shares all costs with me. He keeps an eye on my stuff, likes my car and watches my back. And he actually enjoys driving.

I'm not sure I should get used to this, but I'm certainly grateful to have him around. Plus he's good company.

It's been another bad day for autonomia and pain (not helped by a 2am to 4am bout of cortisol-induced insomnia), but my left leg isn't bad and these beds aren't bad either, so I'm dosing up on tulsi tea to get through the night and inviting a better physical state tomorrow.

Active learning

I've always been fidgety. When I get MRIs, I really annoy the techs because I think I'm holding perfectly still, but my body goes twitch-twitch-twitch. They think I'm doing it on purpose. I can't even tell. Feels like stillness to me.

Aristotle was famous for walking with his students while having his teasing, maddening conversations with them. The old Greek word for walking back and forth (yes, they have a word for it) is peripatētikos. Strolling back and forth while learning and teaching has come to be known as peripatesis, the adjective being peripatetic.

I learn best with intervals of activity. When I can control my obsessive focus, I do best when I take a break every hour or two and ... take a walk.

"Invisible disability" gets an upgrade

I was in a van with two friends of mine, a man and a woman, both of them using wheelchairs. We were looking for parking.

She said, "I hope I have my parking pass."

He said, "Well, mine's in my car, so if you don't, we're out of luck."

I said, "What do you mean? I have one in my purse."

She said, "Oh, yeah. You're our Stealth Gimp."

Best synonym for invisible disability EV-er.

Imp-possible

Healing this disease is supposed to be impossible. In my experience, the word “impossible” is relative.

Some things simply cannot be done: scaling Everest with flippers on your feet, for instance. Scaling Everest in a hot little bikini might be do-able, for all I know, although it hasn't been done yet. I've met one or two people who seemed well suited (so to speak) for the job.

Many things that are widely considered impossible are simply heinously difficult, requiring extra time, diligence, and determination. They may be practically impossible, because most people are not willing to try that hard and can't imagine that anyone else would be. I've met a few of those, too.

When facing the practically impossible, it helps to have a certain blithely F-U attitude, to be willing to flip a bird or two at the forces – or people – that seem to hold me from it. Not to hold resentment, but to detach from their limitations and clarify that they have no hold over me.

It helps to realize that those who tell me it's impossible are really speaking for themselves, but that doesn't mean they get to speak for me.

In short, it helps to have that inner steel spring that winds me up beyond any comfort zone and propels my willful butt over the heads of everyone who has failed before they began, and lets me look at them – not with contempt, because that has no place at this height – but with a cheerful bouyancy that holds the possibility that maybe there's room for them up here, too.

This attitude is springy without being snappish, free-spirited without wasting time in rebellion, wild and fresh with only its own inner guidance for discipline.

It's impish, in other words.

And this gives us a word we can use to describe things like scaling Everest in a skimpy swimsuit, or inviting cannibals to a linen-dressed tea, or curing CRPS:

Imp-possible.

I rather like that.

Curing CRPS is imp-possible. Excellent. Bring on the bikinis.

Sunny and warm

Hungry in grainland
Hemmed in by "thou shalt not" eats
Warm sun on my arms
Rough weeks in winter
Are harder yet. These rare days
Keep me from screaming

The arts are not trivial -- why mythopoiesis matters

Almost 7 years ago, I was walking with a fellow writer, sharing our souls as good friends do. I was recently disabled with CRPS and, needing activity as I do, I was trying to think what to do with my life beyond struggling to stay alive and in manageable pain.  I complained about my internal blocks to any sort of publicity for my work.  (I had no blogs.  Nobody outside the Java software industry had ever heard of me.  Nearly all my output had been printed anonymously by the company I worked for.)  

She asked what I thought that was about.  I said I had been brought up with the very clear message that arts are fine for a hobby, but that making a living as a writer or actor was absolutely unthinkable.  It was irrational to take the arts seriously.

Her soft voice changed to ringing iron in the shape of a bell: "The arts are not trivial."  

I stopped, right there on the sidewalk, shocked out of my self-pity. She turned and egged me on; we continued walking.  "What did you do after surgery?" she asked.

I mumbled, "Watched movies."

"You watched movies. When you were a little better but couldn't go back to work yet, what else did you do?"

"Read."

"You read.  Writers and actors and producers and other artists got you through that time.  They got you through the last year, with the awful work and the layoff.  Survival is not trivial.  It's significant.  The arts matter."

Hard to argue with that.  I'd be dead, miserably dead, without the work of visionaries -- especially the really  funny ones.

This came up again in the context of my own more recent absorption in the value of mythology as a ticket to survival in the face of horrible odds -- a pressingly modern issue in these impossible times.  Then today, I learned that it was Professor Tolkien who created the word "Mythopoeia" -- wrote a poem on it, in fact, to his increasingly rigid friend Reverend Lewis. 

While both men were theists, C. S. Lewis was much more interested in the structure and received wisdom of religion; J. R. R. Tolkien was a spiritual seeker more in the experiential, visionary, nature-loving, nearly shamanic mode of poets like Coleridge and Keats.  

 Here it is, with my annotations [in square brackets and italicized.]  Take your time and enjoy:

To one who said that myths were lies and therefore worthless, even though 'breathed through silver'.

Philomythus to Misomythus

["Loves Myths" to "Opposes Myths"]

You look at trees and label them just so,
(for trees are 'trees', and growing is 'to grow');

[I love this comment on the dry limits of literalism!]

you walk the earth and tread with solemn pace
one of the many minor globes of Space:
a star's a star, some matter in a ball
compelled to courses mathematical
amid the regimented, cold, inane,
where destined atoms are each moment slain.

At bidding of a Will, to which we bend
(and must), but only dimly apprehend,
great processes march on, as Time unrolls
from dark beginnings to uncertain goals;

[he's making the point that there's more to all this than we can comprehend in our poorly-constructed, limited and ignorant theories of time, space, matter, and life.
He goes on to describe fiction, which at least doesn't pretend to hold all facts:]

and as on page o'er-written without clue,
with script and limning packed of various hue,
an endless multitude of forms appear,
some grim, some frail, some beautiful, some queer,

[he used "queer" in the sense of "odd", but as far as I'm concerned it's all good]

each alien, except as kin from one
remote Origo, gnat, man, stone, and sun.
God made the petreous rocks, the arboreal trees,
tellurian earth, and stellar stars, and these
homuncular men, who walk upon the ground
with nerves that tingle touched by light and sound.

[by pairing these luscious words with the plain ones, he just destroyed the dry concept that "trees are 'trees', and growing is 'to grow'" -- making the point that there's more to language and life than the rules we know.]

The movements of the sea, the wind in boughs,
green grass, the large slow oddity of cows,
thunder and lightning, birds that wheel and cry,
slime crawling up from mud to live and die,
these each are duly registered and print
the brain's contortions with a separate dint.

[he's pointing out (with beautiful imagery) that our brains are so rich and complex, and that life and experience are so rich and complex, that each rich experience makes unique patterns in a complex brain...]

Yet trees are not 'trees', until so named and seen
and never were so named, till those had been
who speech's involuted breath unfurled,

[...and that even to come up with dry little words to describe them, is a feat of imagination in the first place]

faint echo and dim picture of the world,
but neither record nor a photograph,
being divination, judgement, and a laugh
response of those that felt astir within
by deep monition movements that were kin
to life and death of trees, of beasts, of stars:
free captives undermining shadowy bars,
digging the foreknown from experience
and panning the vein of spirit out of sense.

[remove the line-breaks and read that again: "but neither record nor a photograph, being divination, judgement, and a laugh response of those that felt astir within by deep monition movements that were kin to life and death of trees, of beasts, of stars: free captives undermining shadowy bars, digging the foreknown from experience and panning the vein of spirit out of sense." 
In short, taking pictures and otherwise recording things is often a nervous tick, used by those who aren't enough in touch with their feelings and experiences to find some richer way to convey them meaningfully -- but convey them we do, however we can, in an effort to rescue our deeper selves...]

Great powers they slowly brought out of themselves
and looking backward they beheld the elves
that wrought on cunning forges in the mind,
and light and dark on secret looms entwined.

[...and from that effort we grow, and brilliant works come in time.]

He sees no stars who does not see them first
of living silver made that sudden burst
to flame like flowers beneath an ancient song,
whose very echo after-music long
has since pursued. There is no firmament,
only a void, unless a jewelled tent
myth-woven and elf-pattemed; and no earth,
unless the mother's womb whence all have birth.

[in short, to see something, we must first be able to imagine it.  This idea of his has since been borne out by modern science: http://www.sciencedaily.com/releases/2008/07/080703145849.htm]

The heart of Man is not compound of lies,
but draws some wisdom from the only Wise,
and still recalls him.

[Tolkien's religious background was Roman Catholic, which believes in God as the ultimate source of wisdom ...]

               Though now long estranged,
Man is not wholly lost nor wholly changed.

[...and teaches the story of the Garden of Eden as the fall of man and expulsion from paradise.]

Dis-graced he may be, yet is not dethroned,
and keeps the rags of lordship once he owned,
his world-dominion by creative act:
not his to worship the great Artefact,
Man, Sub-creator, the refracted light
through whom is splintered from a single White
to many hues, and endlessly combined
in living shapes that move from mind to mind.

[Our minds may be separated from God's (his belief, not mine) but they are still derived from it, and all our rich variety of unique perceptions create endless possibilities.]

Though all the crannies of the world we filled
with Elves and Goblins, though we dared to build
Gods and their houses out of dark and light,
and sowed the seed of dragons, 'twas our right
(used or misused). The right has not decayed.
We make still by the law in which we're made.

[A triumphant assertion of the right to exercise creative will.  Go Tolkien!]

Yes! 'wish-fulfilment dreams' we spin to cheat
our timid hearts and ugly Fact defeat!
Whence came the wish, and whence the power to dream,
or some things fair and others ugly deem?

[yeah, so we make stuff up -- and it makes us stronger. It's holy.]

All wishes are not idle, nor in vain
fulfilment we devise -- for pain is pain,
not for itself to be desired, but ill;
or else to strive or to subdue the will
alike were graceless; and of Evil this
alone is deadly certain: Evil is.

[now that's pretty clear!]

Blessed are the timid hearts that evil hate
that quail in its shadow, and yet shut the gate;
that seek no parley, and in guarded room,
though small and bate, upon a clumsy loom
weave tissues gilded by the far-off day
hoped and believed in under Shadow's sway.

[you don't have to be a soldier to strive against evil. To make stories, or art of any kind, as a refuge and defense against evil, is to make room for a better future...]

Blessed are the men of Noah's race that build
their little arks, though frail and poorly filled,
and steer through winds contrary towards a wraith,
a rumour of a harbour guessed by faith.

[... and the future itself starts out as something imaginary, a "rumor.. guessed by faith."]

Blessed are the legend-makers with their rhyme
of things not found within recorded time.
It is not they that have forgot the Night,
or bid us flee to organized delight,
in lotus-isles of economic bliss
forswearing souls to gain a Circe-kiss
(and counterfeit at that, machine-produced,
bogus seduction of the twice-seduced).

[it's been said that this sounds a bit like our own times]

Such isles they saw afar, and ones more fair,
and those that hear them yet may yet beware.
They have seen Death and ultimate defeat,
and yet they would not in despair retreat,
but oft to victory have tuned the lyre
and kindled hearts with legendary fire,
illuminating Now and dark Hath-been
with light of suns as yet by no man seen.

[artists and writers and musicians keep us going, reminding us of brighter times and a future worth having, even in the face of defeat]

I would that I might with the minstrels sing
and stir the unseen with a throbbing string.

["I would" means "I wish" -- it's an older form, so an antiquarian like the Prof can use it with a straight face]

I would be with the mariners of the deep
that cut their slender planks on mountains steep
and voyage upon a vague and wandering quest,
for some have passed beyond the fabled West.
I would with the beleaguered fools be told,
that keep an inner fastness where their gold,
impure and scanty, yet they loyally bring
to mint in image blurred of distant king,
or in fantastic banners weave the sheen
heraldic emblems of a lord unseen.

[he doesn't care how silly or crazy or poor he seems, he will keep his courage and share his vision whatever anyone says.  Man after my own heart]

I will not walk with your progressive apes,
erect and sapient.

[in his day, "progressive" meant "making more machines, funding more science without conscience," "making bad things happen faster"; what was called "progress" in his day, we would call "unsustainable development," "pollution," "health crises," "rising poverty," "environmental destruction," and all those associated events. This word's meaning has swivelled about 180 degrees]

                Before them gapes
the dark abyss to which their progress tends
if by God's mercy progress ever ends,
and does not ceaselessly revolve the same
unfruitful course with changing of a name.
I will not tread your dusty path and flat,
denoting this and that by this and that,
your world immutable wherein no part
the little maker has with maker's art.
I bow not yet before the Iron Crown,
nor cast my own small golden sceptre down.

[another line that makes me rise and wave my fist in triumph. He will keep his little sovereignty over his own poor life and trivial work, rather than give himself up to the unfeeling machine of so-called "success" that's based on anaesthetic values like logic without art, money without value, creation without creativity.]

In Paradise perchance the eye may stray
from gazing upon everlasting Day
to see the day illumined, and renew
from mirrored truth the likeness of the True.
Then looking on the Blessed Land 'twill see
that all is as it is, and yet made free:
Salvation changes not, nor yet destroys,
garden nor gardener, children nor their toys.

[when we are true to our best selves, we are heavenly and whole.  Simple as that]

Evil it will not see, for evil lies not in God's picture but in crooked eyes,
not in the source but in malicious choice,
and not in sound but in the tuneless voice.

[evil is due to distorted perspective, vile actions and unfeeling motives -- it's not available to those who are sincere]

In Paradise they look no more awry;
and though they make anew, they make no lie.

[creativity is not a lie]

Be sure they still will make, not being dead,
and poets shall have flames upon their head,
and harps whereon their faultless fingers fall:
there each shall choose for ever from the All.

[when we're dead, those of us with the nerve and integrity to create will be valued, have endless possibilities to choose from -- and work directly with God!]

Sources:

• Link to this poem: http://home.ccil.org/~cowan/mythopoeia.html
• Definition of origo: http://en.wikipedia.org/wiki/Origo
• "sounds a bit like our own times": "Myth-making in a City of Scholars: JRR Tolkien, C S Lewis and all"

It occurs to me I should check the copyright status of this poem. Obviously, I think of Professor Tolkien's work as being for all people and for all time, but his executors' views may differ from my implementation.  

Warrior, eh? (End-of-Year Retrospective)

Interesting term, "warrior". It came up on one of my CRPS sites today, applied by an ally to those of us with the disease.

I was such a righteous fighter all my life, and now the message I keep getting from within is to "lay down my arms" -- a metaphor so painfully apt it beggars language (after all, my CRPS started in my arms.)

The more peaceful I am, the more progress I make -- or at least, the more I hold my ground. But it's very much a matter of never giving up, never laying down, never yielding one thing to this disease that it doesn't have to win from me.

I don't fight, I figure it out; problems are meant to be solved, and this is an evolving set of pressingly interesting problems.

I don't think in warrior/fighter terms any more, but I believe those who work with me use them. While sheer determination has stood me in very good stead, I don't think of my present approach in terms of battle. The ground has shifted too much -- so much so that, as an amateur historian and traveler familiar with the terrain of many battles, I can't think of there being anything left to win. The ground has been swept clean.

Yet I intend not to be destroyed by this disease. I intend to come out of it alive, and die by some more exciting means instead.

When you're skirting paradox, you're close to the naked truth.

I guess I'll keep learning to "lay down my arms" and persist as peacefully and intelligently as possible, and let others call me a fighter if that's how they think of it.

Me, I opt for peaceful intelligence instead.

Links (in order mentioned):

• Hope: http://livinganyway.blogspot.com/2011/01/hope.html
• L.O.B.E.: http://livinganyway.blogspot.com/2011/08/lobe-lung-opening-buoyancy-exercise.html
• Intestinal fortitude: http://livinganyway.blogspot.com/2011/11/intestinal-fortitude-dirty-story.html
• Because things change anyway: http://livinganyway.blogspot.com/2011/03/because-things-change-anyway.html
• Nothing you do is in vain: http://livinganyway.blogspot.com/2011/05/nothing-you-do-is-in-vain.html
• Balancing act and homeostasis: http://livinganyway.blogspot.com/2011/01/balancing-act-homeostasis-and-words-i.html
• Chronic Pain Manifesto: http://livinganyway.blogspot.com/2011/09/this-came-out-of-cold-chronic-crps-type.html
• I Intend: http://livinganyway.blogspot.com/2011/12/i-intend.html
• Releasing the gods within: http://livinganyway.blogspot.com/2011/10/releasing-gods-within.html
• Beyond courage and compassion: http://livinganyway.blogspot.com/2011/07/beyond-courage-compassion.html

Playing with fire

No idea what prompted this poem, but it might have been an iPhone app that makes your phone look and act like a Zippo. Enjoy... and feel free to speculate about what was in my other hand.
...

up side
down
looks fine
from here

It's all a
matter of
perspective.
Isy says so.


it all looks odd
up side down

spine free
limbs agleam

it all looks good
up side down

Isy? Isn'ty?
no matter


Flip Me

Isabel plays
coolly with fire

up side down

is a different
point of view

Releasing the gods within

Modern mythology (á la comic-book heroes & Harry Potter) make extraordinary powers something odd, often imposed on those who never asked for it or are forced into concealing it in order to survive.

I don't have a lot of time for the victim mentality, however charmingly restated. (I love Harry Potter and X-Men but still take them in small doses.) And the idea that it's abnormal to be super-anything is not congruent with my experience. I don't know anyone who isn't super-something.

Embracing the deep weirdness of reality and going from there seems much more effective -- and realistic. Notions of normalcy are hopelessly entwined in history and place, sealed with the invisible glue of social fear.

In other words, normalcy is unstable and profoundly irrational, even as we're desperate to hang onto and justify it.

Not very helpful for dealing with bodily meltdown, lasting pain, deep disruptions and the massive issues of powerlessness, poverty and loss that are shaking so many. It's too easy to feel like a victim and a freak.

I've been delving into the mythology of the Titans, creator gods (like Gaia, Rhea, Ouranos, Kronus) who gave rise to the later -- and nastier -- Olympians (like Jupiter, Mars, Hera, and all that crowd.) They deal with devastating changes, massive loss, pain, betrayal, mutilation, everything we face -- but not for one minute do they imagine that they are ordinary, held to small standards, ineffective or meaningless.

They move and think and act and feel as if it mattered, because it does; they are born to their extraordinariness and they own it, warts and all.

I want to reframe the stories we tell ourselves so that we start out being extraordinary -- not by accident or as oddities, but by right. Then the overwhelming tasks we face become merely heinously difficult, not completely beyond us.

We need not waste energy trying to conceal how much we can really bring to bear. We have better things to do.

Pain Manifesto

This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation -- destroying the body's ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

"Standard" treatments don't work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I'm either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It's going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all 'round.
I'd cure them if I could (heh!)
But I'm too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I'll spend each one
Like it's stuffed with jewels
Pouring through my hands like a miser's dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

Words, words, and words, with a poetry chaser

I have logical and philosophical objections to certain words used to describe me or what I do. I don't expect anyone to change the way they speak, but feel free to entertain yourself by mulling two ideas and reading one egregious rhyme (think Lewis Carroll meets either Timothy Leary or Tom Lehrer, I'm not sure which.)

Word 1: Disabled

Hah! I am extremely able, thank yeeew. With both hands behind my back and my head held under water, I am still able. I'm able to add 2 and 2, for instance, or quote that wonderful bit from Twelfth Night that starts, "I'd build me a willow cabin at your gate, and wait upon my soul within the house ..." Mind you, if you're holding me underwater, it would be hard to check that, but I can still do it, I assure you.

I am handicapped. Like a runty little horse that has to have 30 pounds of lead stuffed into its saddle before it gets into the race. Like a golfer who's being scored by a drunk with a broken calculator. I have exactly the same tasks to accomplish as anyone else in the race or on the course, but I have some added burdens that make it rather harder to succeed.

Word 2: Recovery

Why should I want to re-cover? Of all the covers that have been ripped off, I can't say I think all that many need to go back on. I love all this fresh air. I love the lack of artifice. I love the inward freedom of having so much stuffing removed.

I don't need recovering. Appropriate padding, yes; portable cushions, yes please, by all means. But upholstery is just one big refuge for dust mites and dander, metaphorical and otherwise.

I aim to heal. Healing from any profound physical or mental insult (and CRPS is certainly both!) does not mean going back to what or who or how I was before, it means finding a new way forward. There is no way back, and if there were, I have no reason (given how things played out) to think that returning there would be good for my health!

No, it's forward for me: man the lifeboats, or woman them of course, but I'll head for new horizons rather than try to wade back through the hideous swamp I sometimes think I'm climbing out of.

The Rhyme: "Re-cover and Heel -- an overstretched metaphor"

Before you read further, let it be clearly understood that I love dogs, I have always loved dogs, and I'm old enough to use the word "bitch" in its traditional sense of female dog. In this case, an upholstered one...

The brocade bitch took a turn for the worse
and bit off the toe of a shoe.
The shoe kicked back with a bitter laugh
And said, "That the worst you can do?"

Upholstery torn, the bitch barked out,
"You're badly in need of a nurse!"
The shoe stomped off and hollered back,
"You'll soon be in need of a hearse!"

So the bitch went home to patch things up
While the shoe sought places new.
She's jacquard now, otherwise fine;
He's Prada, Gucci, and Diesel too.

Out of the foggy night: Overmedication and abandonment issues

I was overmedicated on mixed psychoactives (in plain English, my doctors had me on too many pills for CRPS) and, at the beginning of February, I ditched most of them. The following weeks were pretty hideous in an interesting way, as my brain's natural chemistry struggled with the messy extrication and departure of the pharmaceuticals.

It feels like washing my dirty laundry to say this, but I suspect I'm being too finicky: LOTS of people get overmedicated by well-meaning medicos who don't talk to each other.

The pills I stopped were SSRIs and SNRIs. (I can't remember which was which.) The upside to this class of medication is that it specifically relieves nerve pain, in addition to helping lift depression. (I wrote an article, buried in my archives, about the tiny handful of neurotransmitters, and how each one has many jobs. Serotonin, for instance, helps digest protein in the gut; dopamine mediates decisions. I'll dig it out and post it on the Biowizardry blog.)

When you have CRPS and you're overmedicated on neurotransmitter Reuptake Inhibitors (of whatever flavor), your brain is in the toilet and there's no way to tell which mental blurch is due to drugs and which one is CRPS. I couldn't always tell how well I was thinking, though I kept trying anyway. Perceiving how I felt underneath it all was like trying to determine the shape of a bomb while it's still in the box. I was usually clear about what I remembered and what I wasn't sure about... but just try getting anyone to believe you when they already know that your brain is not firing on all four cylinders.

There's a lot of grey area in the grey matter, when you're overmedicated and have CRPS.

I'm not sure how much more crap there is to clear out, but I know I'm a lot clearer about what's going on right now. I look back on the past two years with some dismay, as I try to rebuild the relationships I dented, and (most painfully) try to understand why those who should have known better had simply abandoned me to that foggy night.

[photo credit http://www.flickr.com/photos/jfraissi/2165047274/]

But anyway.

I am remarkably clear, now, about what I remember and what is nothing but a sudden hole in my mind. I'm clear about whether I can think right now or not. I'm able to feel the brain crank up and crank down, so I can communicate to others, "I can do this!" or "Gotta stop now!" And, for the first time in years, I can get something done on some sort of schedule. Not a consistent or reliable schedule, not to any sort of clock, but just to know that I CAN do something is quite a step. I'll take it and be thankful!

I still have CRPS. My medication is still problematic. I still have sudden, random, Swiss-cheese-like holes in my memory and cognition. BUT -- and it's a big but! -- there is no grey area in my grey matter any more. I know if I know, and I know if I don't know.

And that's information I intend to use.

Balancing act: homeostasis and words I live by

A balance has two ends: when one goes up, the other goes down. As a metaphor for living, it lacks dimension.

Homeostasis is better. It has no end, but it does count every factor. With a balance, it's possible to find a point where everything holds perfectly still – until the wind changes. With homeostasis, there is no still-point, because even the thing that pushes the wind is part of it. It's always shifting.

Homeostasis is a puzzle to which there is no lasting solution, only a series of adjustments. There's always something new to learn, something different happening.

I find that intriguing.

After living on the water, in the forest, by the desert, and in cities of all sizes, it also makes perfect sense to me. No change sets off only one corresponding change. All real things are clusters of changes, and in the end we can either adjust or be adjusted – and only one of those alternatives accounts for our own wishes.

Living, like homeostasis, is not about flattening the ocean. It's about riding the waves.

B. C. E. takes on new meaning

Les was a chef before he was born. He helped with a BAADS Thanksgiving some years ago as a gesture of kindness, and found that -- as he remarked to a friend helping out yesterday -- "boy, these disabled people sure can cook!"

I laughed out loud, losing several points for coolness -- but I regained them later with my Drunken Sweet Potatoes.

A weighty label like "disabled" sweeps everything before it. Literally, everything... before it. Most of us had full lives before we got a crippling illness or injury; we all have full lives now, even when much of that fullness has to do with how much harder simple things are.

But everything we did, or were, _before_ or _besides_ being [whatever] is still with us. Abled-bodied people rarely seem to think of that themselves: the term "disabled" makes our able-ness seem surprising.

Back in the late 1980's, the socially-preferred term was moving from "disabled" to "handicapped". This explanation from a kindly woman explained why: "It's not correct to say I'm dis-abled, because I'm _able_ to do many different things. But I have to deal with added burdens to get the same things done that a normal person does, so I'm _handicapped_."

Horses carry extra weight in a race, golfers get extra points on their score, and racers get penalties added to their times to handicap them. Though life isn't a sport I entered with any thought of competition (and that's where the analogy falls down), it's true that I do carry a burden which makes it harder to complete the same tasks that anyone does.

But I can still cook one heck of a pan of Drunken Sweet Potatoes. Not everyone is, ahem, able to do that.

I'm definitely handicapped. I'm not sure I'm disabled. I can still write, and often remain coherent through a whole paragraph. That's an ability!

B. C. E. -- in my case, that means Before Crippling Event -- I could play the flute pretty well, too. I can't even hold the darn thing for more than a few seconds, now; the handicap there is too great to overcome.

Sadly, it's still true that -- whatever we call it -- this is a nasty, harsh reality which everyone handles poorly sooner or later; the terms will continue to revolve as we try to keep from getting too stuck in our collective thinking.

As the next decade turns, I expect the terminology to change again. And then again a decade after that. And again and again, as people age and grow and try to loosen up their thinking. Rock on, I say! -- We could all use a little more change.

Extreme Moderation: an Olympic challenge

I got on the wrong train today. Got off 15 minutes later - was already 15 minutes late, so now it's pushing an hour.

Ok, so the pain is up lately, not much sleep for a week, lot going on, etc. etc. The fact is, that's how my life is: pain, survival, and figuring out how to handle normal issues under abnormal circumstances -- this is just life.

I'm paying a lot of attention lately to navigating & negotiating these realities without succumbing to the inherent drama. One can have enough of drama, however seductive & compelling it is.

The fact that pain, survival and abnormal circumstances make the most thrilling narratives doesn't make this an easy task. But who needs easy? It's boring.

Y'know, I never thought of it that way before....

Here's a new sport: Extreme Moderation -- staying on top of my own responses and managing intelligently when my body plonks or my brain goes AWOL. What an interesting challenge for a recovering adrenaline junkie.

I've often said that, when you're skirting Paradox, you're close to naked Truth. So I think I'm onto something.

Haiku: September, SF Bay

Stars look back at me
And I long for blue water.
Ocean, take me home.

SF night shot

Got an eyeful of SF at night from across the Bay, with fog tickling
the towers. The camera refused to resolve the image, so ... haiku below.

Messy jewelry box
Trailing gems in the water,
Snagging feathered veils.

Moving is still in my mind. I'll soak up the beauties here while I can.

Life, as explained by a typo

Caveat emptor: tasteless humor.

It just smacked me in the frontal lobe that "ruination" is one
transposition away from "urination."

My professional trajectory suddenly makes a lot more sense.