Friends & other forms of support

I have the help I need.
I can’t believe I’m writing those words, but I think it should be said. It won’t last forever and there are some rough spots, but let’s put this in perspective.
I can no longer wash dishes because I don’t have a water heater and the touch of cold water has become utterly unbearable. I got back from my shower this afternoon to find the dishes washed — and the galley & front step picked up, a wholly unlooked-for bonus.
My excellent friend R. was living on the smaller boat and helping me with the boat-fixing and laundry. He set up the sale of that boat (completed today) and is moving onto Voyager. He’s taking my old cubbyhole in the quarterberth and (thanks to him moving the tools and lumber out) I’m finally moving into the forepeak — that is, the room at the pointy end of the boat. For the first time in years, I have a bedroom door that closes.
After watching me constantly overestimate my capacities (which are constantly changing), he wisely introduced the Pinky Rule: if I’m not confident of being able to pick it up or handle it with just my pinky finger, I don’t pick it up or handle it.
This doesn’t render me the complete nonentity that pure helplessness does — which helpful men are wont to suggest, with the best of intentions. (Yeah, I’ll sit back and do nothing if you let me lop off yours before lopping off mine.)
But, like the Elbow Rule I gave kids who came into my ER with things stuck in their ears and noses (“only stick things in there if they’re bigger than your elbow”), it has a certain brainless simplicity that’s hard to argue with. It is turning out to be an excellent guideline. You’d be amazed at what I can lift with a pinky.
In the fullness of time, his busy life will carry him onwards. In the meantime, I have a wise and helpful friend who is making this chicane of my own life a whole lot smoother.
It’s difficult, but strangely peaceful, to learn to share my life without the inherent drama or forced weight of romance. I’m honored to have the opportunity and I could never have imagined a better partner to learn this dance with.
I have to say, if there’s one thing CRPS teaches, it’s that Hollywood doesn’t have the answers; real life is a lot more subtle and inflected.
There is more than one way to love someone. This one comes with clever solutions. Others come with passing kisses. Which would you choose — really?
I could even learn to live with the bits of loose tobacco that find their way into everything. He rolls his own, and the stuff is more intrusive than stray tape. But we’ll find a peaceful solution there, too. I’m absolutely sure of it.

Leaping

I’m finally putting a book together for publication. I sent the first part out to readers for feedback, coasting that post-prep phase of being certain it’s practically perfect and totally wonderful.
Unlike the delightfully daft P. G. Wodehouse, I only think my work is perfect for about half a day. Then, with no warning, everything changes: my heart hits my feet and I become certain that what I’ve just thrown out all naked and unprotected into the world, is nothing more than a puerile squall which will soon be riddled with well-deserved flaming arrows.
I’m eating too much sugar (for which I’ll pay the price in pain, don’t worry) and trying to settle down for a bit of brain-soothing meditation. Then a bit of light boatwork, maybe some laundry … and then a couple of hours on the next part of the book. Because what I think of it doesn’t matter.

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!

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.

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:

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):

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.

How we REALLY were made! :)

Saturn, my favorite mythological curmudgeon, lost his throne and gave way to as nasty a pack of rapists, pederasts, thugs and thieves as Capt. Jack Sparrow could find in a century of shore leaves. Their litany of crimes is tedious, at best, but I’m aware of the limits of history; what gets preserved is often chosen by the loudest predators. 

There’s an old Greek story about the creation of humankind which sidesteps most of that. It goes something like this. 

*********
Young Kore (Persephone’s childhood name) was wandering by a river one day. As she forded her way across it, she was pleased by the clayey texture between her toes. She stopped on the opposite bank and scooped up some of that lovely mud.

She modeled it into a familiar bifurcated form, but it wouldn’t keep its shape. She worked some humus into the clay, to give it more body, and that helped. Bits of humus showed here and there, and the slightly fluffy look of it inspired her to give the dolly a nice topping of shreddy mould for hair.

Her father strolled up and asked what she was up to. She showed him her handiwork, as charmingly pleased with herself as only a kid can be.

Zeus admired it and said it was very nice, and what was she going to do with it?

She said she wasn’t sure. “But would you make it come alive, Papa? Please-please-pleeeeease?”

Zeus looked down at her wide, bright eyes and rosy cheeks, her face alight, and fidgeting in a pleased sort of way. Only one thing to do. 

He turned on his endless vision and looked up to see who was near the Olympian Fire. One of his nephews was standing there, staring at it. Zeus turned on his bullhorn voice and bellowed up to Olympos, “Hey, Prometheus! Oy, Prometheus, I need you!”

Prometheus looked away from the Fire and said, “What’s up, Big Guy?”

Zeus hated it when people called him Big Guy (it lacked class), but he swallowed his irritation. “Toss me down some of that Fire, smartass, okay?”

Prometheus grinned good-naturedly, scooped up a handful of the divine flame, and lobbed it in an underhand toss.

Zeus caught it in midair, massaged it into shape, then carefully pressed it against the clay creature in his daughter’s hands. It baked the clay and filled it with life.

The little clay dolly twitched, gasped, and sat up. It rubbed its face and opened new eyes. It rubbed its head, now sporting a fluffy head of soft hair. It spoke: “Holy crap.” Pause. “Well, that was weird.”

Kore bounced up and down, causing the creature to splay its legs and hang on for dear life.

“I want lots of them! And I want to call them Kores, like me! Look how cute they are,” she declared ungrammatically, staring at the singular creature.

“They should be called Zeus-lets, kiddo. You’re hardly old enough to be naming dollies, let alone species! I gave it life and I’m the grownup. I’ll decide what happens to it. Understand?”

Gaia, who had had quite enough of her rotten grandson lately, made her presence known with a rumble. “Do you ever tire of being the biggest brat in the room, Zeus? I gave my flesh for the creature, so it should be named after me! Lots of little Gaia-citas running around. Should brighten things up considerably around here.”

Zeus found himself in a serious disagreement, where he had expected a minor battle of wills with a child.

It didn’t help that Prometheus and the rest of the Olympians had turned to watch, and were encouraging all sides indiscriminately: “Go, you kid!” “Give it to the Big Guy!” “Hey, Grandma rocks, she should have it!” Zeus personally saw Apollo, alone, change his vote three times. And he wasn’t the most changeable, either. 

It was a floor show.

He caught Gaia’s eye. “Arbitrate?”

She lifted her chin. “If you can find an impartial arbiter.”

Zeus looked around and saw nearly every face animated with opinions. Even Hades had something to say. Naturally, he was rooting for the kid, just to spite Zeus.

Nearly every face. One face alone was still, and it was still behind bars. Zeus’s father, and former opponent, was just quietly watching.

He turned to Gaia. “How about Kronus?” (That’s the original name of Saturn, to you Latinites.)

Gaia was surprised. Also mighty pleased — she considered all her sons mentally weak, but Kronus was the best of the bunch and had taken her side when no one else would. If he was acceptable to his arch-enemy Zeus, he was certainly acceptable to her. “Kronus it is,” she said, and everyone turned with her to look at him.

Kronus’s eyes lifted. The ages of imprisonment had left his eyes deep and dark with shadows. It took some time for him to bring himself fully into the light again. His brother Iapetus gave him a surreptitious hand.

As he stepped into the center of the watching gods and took up the mantle of judgement, bright white light filled the space they were in. It chased away every shadow, prying into every nook. Nothing remained hidden. 

He cleared his throat softly. “I can’t pretend I didn’t see and hear every bit of that. I’m a little surprised you asked me, so before I go further, I need one word from each if you.”

He paused and made sure he had their attention. Even the restless child was riveted by the lines and hollows on his great face, the aeons of thought marking his brow. “Swear before all Olympos that you’ll be bound by my decision. All of you. Because greater good or greater ill may come of this than any of you can now see.”

Surprised, but trusting him, Gaia nodded. “Of course.”

Enthralled, Kore whispered, “Yes.”

Boxed in and suddenly wishing he’d named anyone else, even Hades, Zeus grumbled, “Oh, Hell.” Beat. “All right.”

Kronus nodded, and shifted position. “Then this is how I rule.

“Zeus, you did a thorough job of giving this creature life, and therefore gave it a future and everything that goes with it: thoughts, wishes, actions, an ability to affect the world. That is a heavy burden to lay on something that didn’t ask for it. It will need a strong ally, a knowing guide, a wise governor. You will be all that and more, because, having given this thing life, you should help to make that life worth having.”

Zeus blinked and stepped back, as if punched in the gut. Not what he’d been thinking at all. 

Kronus turned to Kore, who blanched and tried to shrink. He smiled at her as gently as he was able. “Kore, you made something beautiful, and it was intelligently and cleverly made. Well done.”

She tried to smile. She was certainly proud at his praise, but overwhelmed. Never had she been in the center of so much light; it hurt and frightened her, but she didn’t want to show it.

Kronus went on, “You asked that there be lots of them, and so there shall be. You will get your wish.”

Kore nodded with a big, shy motion of her head.

Kronus added, “You made it out of clay and in your hands it was lifeless. Do you remember?”

Kore nodded again.

Kronus said, “Then, in the fulness of time, you will be responsible for them in that state again. When they live out their spans and return to being lifeless, they will return to your hands.”

Kore’s eyes widened. So did Hades’, because a new shadow — distinctly like the shades of his realm — descended on Kore’s form and began to soften the light that nearly blinded her. Her mother Demeter, riveted by the shadow, was so tense you could string her in a bow, but there was nothing she could do. 

Kore breathed her relief at being shielded from the painful glare. 

Kronus turned last to Gaia. “You gave your flesh to make this flesh, so its flesh is your responsibility. Provide this species with food aplenty, and ensure its fertility so that it will perpetuate itself time out of mind.”

Gaia, hiding her relief, nodded. She didn’t know what she had been expecting, but hadn’t expected to get off so lightly for stooping to Zeus’s level in the first place.

Then Kronus stopped briefly and gave her a Look, and she felt she had just been privately chewed out for that very thing. She dropped her gaze and gave a little nod, accepting the silent rebuke.

Kronus looked upwards and scratched his chin. It made a scrunchy sound, since he hadn’t shaved. “As for what to call it,” he mused aloud, “I see no point in choosing one of your names over the others. It’s now a shared task and no one of you should have more credit — or more responsibility — than you already do.”

He looked at the little thing, sitting peacefully cross-legged and wondering what all the fuss was about.

Its mud was now good flesh, and the crisp, short fibers of humus peeking through were transformed into crisp, short hair. It saw Kronus peering at it, with his huge wise face alight with interest. It smiled brightly up at him and gave a big enthusiastic wave with both arms, exposing more crisp patches underneath.  

Kronus smiled as inspiration dawned. He remarked, “It does look like it was made with humus. We’ll call it homo.”

And so it was.
*********
The much shorter translation from Pseudo-Hyginus’s “220 Fables” is here:

http://www.theoi.com/Khthonios/Persephone.html

My prior work on the Saturn mythology is posted as a guest-blog series at Oxford Astrologer. …Why under astrology? 
Because, since the death of Joseph Campbell, modern astrology is the best repository of psychologically-oriented myth. Ignore what doesn’t work for you — but enjoy and mull over the stories, because they’re utterly human:
– Saturn’s tricky childhood: 

http://oxford-astrologer.blogspot.com/2011/08/how-i-made-friends-with-saturn.html?m=0


– The (kind of creepy, but fascinating) birth of Venus: 

http://oxford-astrologer.blogspot.com/2011/08/kind-of-creepy-birth-of-venus.html?m=0


– When Saturn goes off the rails: 

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