Pertinent pain data

Here's a little gem I found while cleaning up my hard drive. It's from early last year...

===========

Each year, 80,000,000 (that's eighty million) Americans seek professional care for pain.

Combine the numbers of Americans who seek care for diabetes, heart disease, or cancer -- three much sexier issues -- and they still aren't as many as those who seek care for pain.

• Pain is the cause of 25% of all sick days.
• 50% of those with nonmalignant pain have considered suicide.  (That puts a real crimp in a family's earning power.)

The consequent costs of lost productivity and reduced contribution to the tax base & economic flow, the social impact with concomitant loss of productivity, etc., has never been quantified (that I know of), although it certainly exists. With that large a base, and that wide a ripple-effect, it has to run into billions of dollars per year.


Each year, we spend $100,000,000,000 (that's one hundred billion) on the direct costs of dealing -- badly, expensively, and inconclusively -- with pain.

That same amount could buy:

• More than one-fifth of Medicare’s entire 2010 budget.
• 60% of 2010 Federal spending on long-term unemployment (to which disability is the single biggest contributing factor, and pain is the single most common factor in disability.)
• 5 weeks of current military spending, with two wars to prosecute and unprecedented numbers of walking wounded to care for.

===========

I had forgotten those facts.  I was geekishly delighted to find them. But it is definitely an answer in search of a question, and in this case the question is this: why the hell are we wasting so much money, time, life and energy on handling pain so badly??

There are profound cultural and economic reasons why the present, appalling system is still in place.  I'm not rich enough to face those reasons down so I'll leave that as an exercise in logic for the reader: follow the money.  Who profits by this system?  Who funds it?  Who benefits, and of those who benefit, exactly how do they benefit? What do they give up or pay, in order to reap those benefits? What are the benefit/drawback profiles for the many different stakeholders in this system?

Pain patients are the least important stakeholders in this system, and that doesn't seem right to me. I realize I may be biased.

Sorting out the answers could keep you busy for awhile, but once you figure out a couple of common denominators, it starts to fall into place very easily. It's a bit disconcerting at first, though.

The point, as far as pain control is concerned, is this: we're studying the wrong things about it, and we're treating it the wrong way around.  There is no conclusive success path on the present trajectory, just increasingly expensive ways of mitigating these largely failed clinical (and economic) strategies.

And that's today's ray of sunshine! :)

References:
“Chronic Pain Fact Sheet”, http://www.cssa-inc.org/Articles/Chronic_Pain.htm (journalistic summary)
“AAPM Facts and Figures on Pain” , http://www.painmed.org/patient/facts.html (cited sources include the AMA, ADA, AHA, NIH)
THOMAS (Library of Congress online)
Office of ppp, http://www.whitehouse.gov/sites/default/files/omb/budget/fy2011

Reality check bounce

I got a settlement last year of $40,000. In 8 months, it's nearly gone. I ran through my numbers and realized that all that money went into taking care of myself (clothes, for the first time in years; chiropracty, not covered by insurance; acupuncture, which should be covered but is sometimes improperly denied; $300/month in supplements which aren't covered, but do let me function; $500/month for fresh whole food that keeps me from getting worse, more important now that I'm allergic to inexpensive foods like wheat, corn and rice; massage prepayments, for my masseur who was stuck abroad but is finally back & starting to work on me.) There were a couple of large one-offs, but they total the equivalent of the other 3-4 months of the year.
Although I'm certainly far better than I'd have been without it, I'm considerably sicker, weaker, sorer and more mentally impaired overall.
Meanwhile, insurance has -- most improperly -- denied any of the care that they are supposed to pay for and have covered in the past.
This disease is a bit like cancer in that, if treatment is delayed, you're liable to lose ground, and there's no realistic hope of regaining the ground you lose.
I've been pegging my hopes on federal disability (the dole, but a relatively generous dole) but even that will provide only one-third of what I need to live on. If I weren't tending this illness -- and could eat grains -- it would be enough; that gives scale to these expenses. It takes 40k to support me for a year and the best I'll get is 14.4k.
If I move ashore, which I'm trying to do (finishing up the boats and selling them being this winter/spring's project), then it will be considerably less, because rent ashore is so high. However, it's becoming impossible to function without hot running water, a bath and a laundry machine. Catch-22, or at least a choice of impossible situations.
If I could get a year's funding for the intensive health work I'd hoped to do this year, I'd stand a chance of regaining enough ground to work and earn. I don't see how to make that happen. I may be lacking in imagination.
Anyway, I'm beginning to wonder if it makes sense to keep working on figuring out how to mend. I've contemplated the babbling fool I'll become on the present trajectory without supplements and so forth: pride and dignity aside, there's no realistic way to bear it -- the waking with a muddle in my mind, the increasing helplessness and isolation as my friends get more and more frustrated with dealing with me, the waxing helplessness in the face of the most basic tasks like budgets and shopping, the inability to make decisions on the basis of imperfect understanding, the constant wounding of my amour propre as the patronizing tones and "there, there" remarks continue to mount. The startling shafts of clarity when I see just how stupid I've been, and knowing I'll soon fall into the fog again. It's simply unbearable.
Had I grown up unintelligent, I'd have the skills to manage life with fuzzy brains, but I really don't. It's desperately confusing and the constant humiliation doesn't help.
When I can just sit down and write, focusing on the one thing for a stretch of time, I do fine. (I hope that's obvious.) The hopping about from topic to topic, without having time to sink into one and pull up the mental flash cards, is becoming impossible. And that's what life requires.
My mind is thixotrophic: quick moves bounce right off; it takes time and gentle pressure for me to get in.
Though without the rigorously pure food and costly supplements, that focused writing-mind doesn't work either. It can't even start.
I read up on Woolf and Hemingway some years ago. I felt the usual poignant poetic feelings about their deaths, gilding over a sneaking suspicion that they'd copped out. But, as my own mental life becomes ever more fraught, I become ever more awed at the strength, grace and nerve each brought to their final stages. The words that sounded just a little bit like whining or wounded vainglory, were really a symptom of the inadequacy of language in the face of an assault on one's core that defies meaning itself, let alone language's ability to convey meaning.
I need more options. I need real care. I'm out of ideas.
I liked being happy & relieved last summer. I could do with more of that!

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

Quantum physics and the divine plan

Post on one of my CRPS groups: "Everything that happens to me is part of the plan for my good."

The responses to this seemed to come through a blissed-out narcotic haze. I'm afraid I administered the verbal Narcan. Surprised? :-)

I've counseled too many rape victims and abuse survivors, and treated far too many accident victims, to hold the belief that bad things happen to us as part of a greater plan -- let alone that it's for our own good.

Bad things happen, full stop. As living humans, we take our chances in the world; sometimes it works out for us, sometimes it doesn't.

If we grow and learn and become stronger, then it's because of how we chose to deal with it and what we could bring to bear -- not because some faceless force thought it would be interesting and valuable to cause us so much agony, because -- of all counter-logical reasons -- it loves us.

I aim to find a way to become free of CRPS. Nevertheless, I perceive that the skills, the inward peace, the strength, the poise I've developed in coping with these unimaginable challenges over so many years, have certainly made me something I never would've reached without it.

I thoroughly honor the brilliance, creativity and strength that my comrades with CRPS bring to their lives. It's breathtaking to belong to such a select group -- although the cost of membership is a little high.

It's a special disease: agonizing, rare, destructive, poorly researched, underfunded, extremely long-lasting, and -- most special of all -- widely believed to be hysterical in nature. The challenges it poses are distinctive and seemingly endless.

After eight years with it, I'm proud of myself and I even care about myself, even though I can accomplish so much less than before. 8 1/2 years ago, I felt that I had to earn my right to even breathe.

The credit for all that growth goes to innate qualities, my excellent friends (some of whom I'm related to), and a handful of gifted clinicians.

The causal lines are very clear: hard work, relentless study, determination, safe places to stay, loving words, wise ideas, needed gifts, perfect loans, valid diagnoses, key treatments -- these are what gave me strength and let me grow and learn.

It's been painstakingly pointed out to me that I have the friends I've earned. I'm not sure any mortal deserves such friends as mine, but I'm glad of them all the same.

Cold chronic CRPS and all that goes with it... Part of a plan? What plan? Whose bloody plan? I want the bastard's address! And so does my army.

Plan is a four letter word.

I will never forget the days and nights and years of desperate prayer, with nothing but silence coming back. The goodness, the help, the peace, these all came from other people and my own work. The natural results of many extraordinary efforts.

Inflicting this kind of agony and loss "for your own good" would be absolutely unthinkable for a conscious, caring being of any kind. Moreover, to have the power of withholding destruction and pain, and to fail to do so, is quintessentially evil.

I'm a theist, but I don't see deity as a psychopathic abuser -- as something that would clobber me for the fun of it, or be persuaded to stop the beating if I figured out the right things to say.

Moreover, I can really see why people would be atheists. Without quantum physics to make sense of things, deity is an indefensible concept. With quantum physics, I'm certain of three things:

We ARE a permanent part of something greater. It IS aware, omniscient, and ubiquitous.

Its job is not to screw things up, but to notice, communicate, and keep flowing. That's it.

Nothing else agrees with the evidence.

It's not intrusive, manipulative or evil. It can't be, because it doesn't possess the mechanisms.

Not to kill the buzz or anything :-)

Whatever belief system works for you, use it!  Just remember, there's more than one path to personal salvation -- or whatever your metaphor is -- but very few of them get discussed, because of the ancient hegemony that a few groups have held over religious and spiritual expression. Let's open the world up a bit.

All too often, the power of human connection is mentioned only as an afterthought. In practice, I've found nothing more important when the chips are down.

I no longer pray for help. I ask.

Because beliefs vary, it's important to give a voice to those who find the traditional idea of our helpless subjection to a greater will to be the opposite of comforting. We don't get much airtime, but we still find peace, strength and grace.

Just not in that particular idea. Thank God.

Questing for a strange beast -- a laptop I can use

I'm shopping for a laptop. This is not a trivial task. Here's why:

- It has to be light enough for me to handle easily.  That right there is a huge barrier. I'm looking at 3 pounds or less -- preferrably less.

- It has to be fast enough and strong enough to handle my dictation software, Dragon NaturallySpeaking, while running Windows Office plus whatever provides access to what I'm writing about -- the internet, media programs, etc.

You can see the Dragon hardware requirements here:
http://shop.nuance.com/store/nuanceus/en_US/pd/productID.202412500
(click the Requirements tab to see the hardware specs)

I find that, in practice, it's best to exceed their recommendations by 50-100%, in order to be able to run Dragon alongside the other stuff.  Windows writes crap code, meaning it's cumbersome, demanding, redundant and sluggish; the same features, if written on a well-designed and well-described codebase, should take up about 1/80th the size of Windows' codebase.  The damn thing is a monster.

But it's the only OS that Dragon Professional handles well. Dragon was written to run specifically on Windows, so if I'm doing my budget I have to use Excel, and if I'm writing I'd better be using Word, or all sorts of wretched things happen.

I dream of the day when everyone takes 501 (adaptive-software) compliance really seriously. I dream of the day when they'll hold off on production until they fix a bug that interferes with Dragon compatibility.  Mind you, I dream of a day when Dragon has real competition at the Professional SKU level.  I've tried the lower levels and, yup, all sorts of wretched things happen. (I had no idea my voice was so odd.)

Moreover, I've gotten my heart set on solid-state drives, after trashing my much-loved Acer Travelmate (2.8#!) by dropping it from a height of 3 feet.  $1,200 later, I had my data, but no hard drive.  Solid state drives are not bullet proof by any means, but their physical mechanism is totally different and it takes a lot more effort to trash them. As I am getting clumsier, this is getting more and more important.  I've filled up a 150 MB drive (despite considerable pruning, keeping music and books on thumb drives) and have nowhere to go, so it will have to be a rather large hard drive.

Fewmets: How I Know when I'm Getting Close

Between my lifting and handling limitations, and the hardware required of a system that could serve my purposes, we're talking about a fairly exotic beast:

- 3# or less in total weight
- Multi-core CPU with a top speed of 3.5 GHz
- Cache size of 3 MB or better
- RAM of 6-8 MB (8 is better)
- 256 SSD hard drive
- A fast connector, like USB 3.0, to make external drives reasonable to use.
- Windows 7 Professional OS (Vista is against my religion)
- Insurance or warranty covering accidental damage, because it will get accidentally damaged and this is cheaper than a new laptop.

The hunt for such a strange creature is one heck of a challenge.  I feel like Sir Pellinore, King Arthur's great-uncle, charging after the terrible Beast Glatisant, wearing shiny but battered armor and trailing a puppy on a string.

Of course, I feel the same way when looking for a cure, only more so.

I run into a similar problem with the cure as with the computer: affordability. You'll see why.

The Long List

I've looked at Asus, Acer, Lenovo/IBM, Samsung's 9 series, Sony, Toshiba, and even Mac, despite the obvious software issues. I have objections to how Dell and HP handle their chipsets and the Windows registry, in that order, so I don't use them. Fujitsu makes nothing this light.

Neither the delicious ZenBook and MacAir, nor the workmanlike Thinkpads and Ideapads have the chip speed or RAM, more's the pity.

Besides, though I like Mac, I can't run my programs on it, and years of experience have taught me that a virtual Windows machine is just not the same as an actual Windows machine.

The Short List

I've found exactly two machines that come close to meeting my criteria:

Sony Vaio Z:
$3,100 as spec'd.

Benefits: 2.6#!
Drawbacks: DVD drive and USB 3 in port replicator.

Toshiba Portege R830:
$2,700 as spec'd.

Benefits: Has a built-in DVD drive!
Drawbacks: 3#.  (Due, no doubt, to the drive.)

Conclusions (so far)

The .4# difference is huge to me. It may well be worth the extra $400 (wherever they come from) because of the huge difference in grab-ability. Also, the extra ports on the Vaio's port replicator are worth a lot.

So I'm leaning towards the Vaio on its features, but if I have to make the choice solely on price, I'll go for the Toshiba.

In either case, the only thing to do with a really expensive laptop is to make it look like a total POS. So I'm thinking of a skin that will not only cover the brand name but look like a tire tread or barbed wire or something that growls through the hole in its lip, "Don't touch me."

Psychological tactics work, because crooks -- especially amateurs -- are ever so human. ...And that's another random life-lesson I learned from working in the ER.

Donations would be lovely, of course, but I hardly expect them. For those saintly people who want to contribute to this quest (and of course the quest for a cure), there's now a button in the blue panel on the lower right for the purpose. May all good things come to you.

LINKS
Both of the lovely monster images were snagged from this blog:
http://archideaconalwhitterings.blogspot.com/2010/03/whitterings-april-2010.html

I got the tire tread image from this blog offering free designs:
http://creatingthehive.com/blog-post/143186/tires-amp-treads-free-mds-punches

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

Himalayan dreams

Had a dream of a remarkable wolf. It said it was from an extinct ancestral species. There were great mountains around us. I got curious and looked a few things up.

Timing couldn't have been much better. In 2004, scientists examined mitochondrial DNA and cleared up a lot of questions about speciation and ancestry:

Here's the Smithsonian's article with that graphic: http://nationalzoo.si.edu/SCBI/SpotlightOnScience/fleischer2003108.cfm

Until this study, all canids except maned wolves (truly ancient) and coyotes were thought to be basically a type of grey wolf; Tibetan and Himalayan wolves were different flavors of the same breed. (The web being what it is, the old ideas of the much-loved grey wolf being the grand-daddy of them all still show up everywhere.)

Turns out the beautiful and sweet-faced Himalayan wolf is the ancestral canid from which Tibetan wolves, grey wolves, Mexican wolves, red wolves and modern dogs (from molossers to dachsunds) are all descended.

The adorable mutt I grew up with. The huge, terrifying sheepdogs of Turkey, where I was born. The overdressed show poodle that walks my marina. The chihuahua who helped fix my boat. All from the Himalayan wolf.

There are only 350 of this extraordinary species left, as of 2004.

http://news.bbc.co.uk/2/hi/south_asia/3804817.stm

The main problem? Human ignorance, voraciousness and violence.

Because 12 billion of us just isn't enough, humans are expanding cultivable and buildable land every day to feed still more. I'm not sure why this is still seen as a better option than parental education and birth control, which are tragically underfunded worldwide.

Wolves are hunted for sport, because some people just have to prove they're better than anything that doesn't have ballistics and steel.

Wolves are hunted out of fear, because they are the bugaboos of Himalayan legend -- since wolves have been made metaphors for the vilest traits of humanity in Europe and Asia alike. They aren't like that, we just wish they were, so we wouldn't realize we are looking in the mirror when we think of unrelenting evil.

They are hunted for killing livestock, which they do in the winter ... But the ranchers who keep a couple donkeys with their herds, never lose animals to wolves. Donkeys have no fear of wolves and will kick the living snot out of anything that attacks their herd. Many ranchers don't know this! Livestock predation is a stupid problem with an easy fix.

Rumor has it there's a captive breeding program in India, but I haven't been able to track it down online. I'd be happy to make a website for them with a big, persuasive "Donate" button.

Meanwhile, I'll keep looking.

Addendum 1

Turns out that donations aren't possible: http://wildlifesaviour.blogspot.com/2011/05/himalayan-wolf.html. HOW is that POSSIBLE? Further research needed, apparently.

I intend

I intend to die a hale and hearty old bitch,
rounding Cape Hatteras on a blowy day
in a boat far too light for the waters
but light enough for me;
or flying over fences on my blooded
or bloody-minded Arab mare,
a feisty brat after my own heart,
one fence too far.

Sudden and fierce it should be.
Nobody I've never met should profit
from my slow and tortured death,
acceding in misery
to what the doctor thinks is best.

Their training is not that good.

Pharma doesn't train my best healers.
Only wind and waves and good rich earth
can give what I need, or take it at the end.

Refocus on what works: In memoriam

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don't know exactly what it was, and given my respect for patient confidentiality, it's none of my business.

She's the first person to die of my disease, to whom I felt personally attached. Needless to say, it's sobering as hell.

I've written about the need to attribute deaths from this disease correctly. I'm preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I've recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately -- and quietly -- become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie's death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I'm going to discuss what works, whether or not it's FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn't mean the modalities don't work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don't exist, I'll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I'll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it's up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It's too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I'll no longer collude.

Let's find a real way out.