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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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

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Releasing the gods within

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

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

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

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

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

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

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

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

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

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Pain Manifesto

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

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

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

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

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

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

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

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

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

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

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Words, words, and words, with a poetry chaser

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

Word 1: Disabled

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

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

Word 2: Recovery

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

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

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

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

The Rhyme: “Re-cover and Heel — an overstretched metaphor”

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

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

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

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

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Out of the foggy night: Overmedication and abandonment issues

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

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

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

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

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

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

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

But anyway.

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

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

And that’s information I intend to use.

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Balancing act: homeostasis and words I live by

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

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

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

I find that intriguing.

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

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

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B. C. E. takes on new meaning

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

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

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

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

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

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

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

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

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

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

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

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Extreme Moderation: an Olympic challenge

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

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

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

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

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

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

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

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