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):

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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.


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.

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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.

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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.

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At first, it’s fun, getting bonked gently about… until I get seasick. Then I have to put my feet up on the settee, turning myself sideways to the motion; doesn’t make me sick that way. (For some boaters, it’s the forward-back motion that’s better.) I put my feet up and read. Lovely.

Then the seesawing motion gets a bit much — just about the time stuff gets knocked around on deck. Oops.

Five or ten minutes of concerted outdoor work, moving things, tying things down, tossing things out of the cockpit and into the cabin, adding a springline (which reduces the hobby-horsey swiveling motion), and fielding bags and cushions as they try to grow wings.

Remembering why, when I had competent arms, I also had short hair; it utterly sucks to be constantly blinded when you’re looking at your work. Maddening. Good thing scissors are unthinkable in this wind, or I’d have a bugly (butt-ugly) do by now.

Climbing back inside, I brace myself on the steps, and work from behind to snap the cloth in place over the hatchcover, then slide the boards in. I won’t try to explain what that means because it looks (and sounds) technically impossible, but I did it.

Batten down the forehatch (yes, I really do have a hatch with closures that are called battens) and shut the forepeak to keep things in storage from sliding into the sanitary facilities.

My last task is to light a sweet-smelling beeswax candle and snuggle into this slightly untidy, but safe and warm, rocking cradle for the night.

Hard times, in some ways. But boy, things sure could be worse.

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