Category: perspective

Beyond courage & compassion

Isy / / CRPS knock-on effects, perspective, self-care, what works

Here is a link to an article I once would have found moving and relevant to my nursing practice:

Courage and Compassion

The central idea is that the writer is dealing with an Ivy Leaguer with early dementia, who does the usual things of declaring that it’s “not that bad” even as her mind shatters piecemeal. The writer is trying to figure out how to be a good therapist while trying not to panic at the thought that it could happen to her. She looks for her answer in Buddhism, which is not a bad start.

I wrote a response which seemed too long to go through the web page’s comment function. I thought it over, and decided to post these ideas here, since this is the quintessence of learning how to live with the unbearable.

For several reasons — including being wildly overmedicated on antidepressants — I’ve gone back and forth across this line of intellectual capacity and incoherence. Since my central nervous system is still compromised, I will inevitably go back across that line again, if I live long enough. (Sadly, science focuses on the pain of my condition rather than the impaired function. As far as I can tell, the scientific subculture in psychiatric medicine has absolutely no regard for intellectual capacity in its patients, considering intelligence disposable — when it’s mentioned at all.)

There is another reason why this writer’s patients tell themselves it’s not that bad. Like most of those with an acquired disability, they find that there is more to life than they imagined, and that functioning with an impairment in an aspect of life they once considered essential, has opened up their minds — and their hearts — to aspects of life they never realized they valued so much.

This newly-demented woman is still loved. Her survival is still assured — to the extent one can say that in this world. Even though she lived all those years depending so heavily on her intellectual capacity, there comes a time, when everything is swept away and every characteristic you thought defined your “self” is gone, when you realize that something is still standing there, asking the question, “Who — or what — am I?”

Our ideas of who we are, are, I suspect, an essential part of samsara, or the world of illusion. I know that, whatever happens to me, the answer to the question of identity is both eternally answered and perfectly unanswerable.

In the end, it may be that we find we don’t need those illusions. If I didn’t have to struggle to survive, if I had a spouse and children and insurance, functioning without my intellect would have been immeasurably easier. When I lose it again, I have no idea what I’m going to do. However, I have a pretty good idea which of my friends will be able to stay with me on that journey. The past few years have been enlightening in that respect.

Suffering is, by definition, a willful engagement in the anguish of life. I find that it soon loses its charm. Is it more useful to struggle with the engagement of my ego, or to turn my attention to what works — the love in my life, the warmth of the sun, the value of the moment, the puzzle of doing the very next task?

In front of a boat propped up on blacktop, a man holds a bubble wand with bubbles streaming away, lit up by sunlight.

Losing my mind was a stunning lesson in the fact that it’s not about my limited and ego-driven ideas of myself. It was a door to perceiving what really fills my world, what lies beyond my expectations and beyond my uniquely limited understanding. Through her work with these people, this writer may have the privilege of discovering that, without having to pay the savage price that most of us have to pay for that understanding.

She writes with desperate fear of facing this herself, but this opportunity could be the gift that insulates her from the very devastation she fears, even if it does happen.

We humans are driven to comfort as the sparks fly upward, but there are times when it makes sense to turn your back on present comfort to ensure your future safety. Her fear won’t ease until it’s dealt with, as this issue is part of her work.

As for me, it’s time to go meditate. I intend to weather my future well, regardless of how little intelligence I can bring to bear at any given moment.

Chiron the Centaur: Earliest recorded case of CRPS?

Isy / / humor, mythology, perspective

I’ve been mulling Greek mythology as it has come down through my European ancestors and been rendered into my English tongue. Mostly, it seems that people haven’t changed much, even when they’re mythical. One of the most intriguing mythical figures I know of is Chiron, the centaur.

Chiron was the first of the centaurs, and of them, the only immortal. That devouring titan Kronos was into a nymph named Philyra, but Kronos’ wife (and sister) Rhea wandered by when he was in flagrante delicto. Not wishing to upset his wife or stop what he was doing, he changed into a horse in midstream (as it were) the better to hide in plain sight. Legend is silent on what Rhea did, possibly just figuring those nymphs were a funny lot, but Philyra bore a child with a novel equine aftereffect, and was so repulsed at the sight that she disowned him on the spot and begged her other uncle, Zeus, to make her into a linden tree (…why?). Since she subsequently had other children with Kronos, I assume the transformation was temporary.

Kronos and Philyre’s ongoing affair resulted in at least two other children: the twins Bythos and Aphros, who were like tritons, men to the waist and fish below, only they had horse’s hooves in place of men’s hands. Obviously, something was trying to tell their progenitors to stop horsing around.

Rejected by his mother, abandoned by his father, Chiron could have fallen into misery and loss, as many do, but with a huge dash of luck, he made it through. I can’t find anything in the mythology about how he survived his infancy, let alone how he grew up. When another nymph spawned a herd of half-human, half-horse beings (…why??), Chiron and his wife and daughters took them in, adopted them, and raised them as their own, so it’s probable he was fostered by someone conscientious and kind. His family likewise fostered and reared any number of heroes, including Jason (of the Argonauts), Achilles (of the Trojan War) and Aesclepios (who gave his name to the physician’s staff of office.)

This second generation of centaurs were quite different from their divine foster-father: where Chiron combined human understanding with animal knowing, they combined human desires with animal spirits — and let brains go hang.

Chiron, a loving, generous, brilliant individual, was what biologists call sui generis — he invented himself. He grew up to become a musician, a brilliant and knowledgeable healer, a hunter, a gymnast (among people who valued physical skill), a prophet, and a martial artist so gifted and so clear that gods and heroes came to him for training.

He was accidentally wounded by a poisoned arrow belonging to a friend, amidst a silly brawl his rambunctious semi-equine foster-children started, over wine. I find those details very telling: the youngsters got out of hand, someone got careless, people died — and in this mess of love and greed and chaos, his whole life changed completely, his old way of being pulled apart in one ridiculous moment.

The pain of the wound never left him; some say it killed him by sepsis in a matter of days, others that it lingered on for years. It tortured him beyond bearing, but by and large he learned to bear it, becoming more and more of a recluse as the pain crept into his mind and disrupted his ability to manage himself. Once a teacher and musician who thrived on company, he withdrew from the world in obstinate self-involvement — or, speaking from the other side, in obstinate refusal to inflict the results of his condition on others. As an immortal, he had no choice but to survive; he didn’t have to like it.

When the chance came to give his own immortality to his friend (some say it was to save Prometheus, some say Prometheus persuaded the gods to give the immortality to Hercules), he didn’t hesitate: he surrendered his life and escaped the pain and the silent, hidden destruction at last. Zeus placed him in the heavens as Sagittarius, whence he could visit Earth in spirit — unlike going to Hades, which is strictly a one-way trip.

The kicker: his name, “chiron” or “kheiron”, means “hand”, signifying “handy”, and also serving as the root of the Greek word for “surgeon.”

He is recognized in the constellation Sagittarius, and more recently in the minor planet Chiron. Aphros, his piscine brother, became king of Carthage in modern Libya and gave his name to a whole continent. Aphros (“sea-foam”) and his twin Bythos (“sea-deeps”) are honored together as Pisces, heavenly gratitude for their aid in Ashtarte/Aphrodite’s safe birth. They got along with their titan half-brother, Poseidon, but I don’t know how their once-fertile father Kronos felt about them. It’s not like he was good parent material.

"Nothing you do is in vain"

Isy / / loved ones, perspective, self-care, what works

My older brother’s sister-in-law has been doing international relief work for almost as long as I’ve known her. She was so helpful and wise, at the time that I was considering it myself, that I didn’t go into the field, though the thought of being so useful to those in such need was overwhelmingly seductive.

I know I don’t have the mental scale that lets you balance what you can’t accomplish with what you can, and decide whether the tradeoff is acceptable. The conditions are so harsh and the scale of work so grim that it imposes limits on care that are unimaginable to those of us who take soap and clean towels for granted; let’s not even think about bandages or IVs. I’d have come off very badly indeed, and that means I couldn’t have done much good.

In our intercontinental conversation on the subject (she’s British), she pulled off a balancing act I have strived to acheive ever since: clearly convinced of my capacities, without any assumption that she knew what they were. When you think about it, that’s very sensible — everybody’s good at something, often several somethings, and there’s nothing that says they have to wear their talents on their sleeves.

I was desperately intrigued by international aid work, but not sure I should pursue it and not even sure how to start; I wanted to know what to do to improve my chances.

She told me, “It doesn’t really matter what you do.” Shifting up from her lovely gentle, understated, soft British manners, I was riveted to my chair as her voice became more resonant, more intense, and I could hear the words marching from the depths of her soul, as she said something like this: “Do what you do; follow your instincts; do the work that comes to you. If [disaster relief] is the right work, the opportunities will open for you when you put yourself in their way, and whatever you’ve done until then will help you get there. If something else is right for you, then whatever you’ve done will help you get there instead.” And then, with a certainty that still makes my bones ring, “Nothing you do is wasted effort. Nothing you do is in vain.”

That was a third of my lifetime ago. Even now, when I have to pull myself through these non-international, unaided situations that are unimaginably grim in a totally different way, I remember her words and how she said them: “Nothing you do is in vain.”

Knowing that no effort is wasted effort, everything becomes much less difficult. Even in such a tiny life as mine has become, this matters hugely. In fact, it totally changes the game.

She was awarded an MBE in this year’s Queen’s Birthday Honors list. Clearly someone agrees that her own work is far from in vain.

Reverse culture shock, transcontinental style

Isy / / humor, loved ones, moving/traveling, perspective

Dear Reader … I’m a Yank. It’s true. I may have sparkly blonde hair, find it easy to talk to strangers, and not assume that anyone who smiles at me has an agenda, but that’s because I’ve been living in Central Coast California for 1/3 of my life.

Here in California, when you tell an acquaintance that they’re particularly clever or sweet, they grin pinkly and do a little riff on, “aw shucks, stop it again, quit it some more,” and like you the better for it. In New England, they’re liable to lift their chins — apparently avoiding a slobbery little dog — and take it as their due … while wondering what your agenda is, and bracing to resist it.

I know this because, after living in each place for a few years and watching the expressions and asking why, I found myself doing these exact same things. (I’m not immune, but I try to be aware.)

I’m also planning to go between the mid-Atlantic seaboard and the Northeast, which I’ve done before, and that has a charming set of subtle cultural potholes of its own.

For instance, if you call a stranger “ma’am” or “sir” in Alexandria, they figure you have nice manners and relax a little.

If you do that in New York, they raise their chins (ever so slightly) and figure you’ve taken a lower peg than themselves in the pecking order; then they’re either magnanimous or obstructive, but usually magnanimous.

If you do that in Massachusetts, they look around in a flustered manner and can’t quite figure out if you’re making fun of them or are putting them on a pedestal they aren’t sure they should occupy. … Which is in interesting contrast to the reaction to compliments.

Mind you, those who know me well have it figured out: compliments are taken pleasantly and “ma’am/sir” lightens the mood. So I’m not worried.

But I am glad that California has the cultural weight that it does, because — as I learned long ago — saying in an explanatory tone, “I’m from California,” smooths out any number of cultural faux pas. And there are sooo many pas to faux up.

How moving

Isy / / moving/traveling, perspective, self-care, what works

I’m working on clearing out all the needless stuff from my boat. This includes unfinished projects, equipment for work I can no longer do, things I’ve kept only because they’re too cute to get rid of, and so on. It’s been sufficiently, um, absorbing that I have neglected the blogs, but I’m playing catch-up online as I take an hour or two this morning to step back and breathe.

One realization that has helped me tremendously is the insight that NOTHING IS WASTED. I realized this when I held up a shirt that I had worn for a sweaty project: it was too smelly to use as a rag, but I couldn’t bring myself to wash it (laundry costs), and I realized it ought to go in the bin.

In a century or three, it will make very nice dirt for something to grow in. And isn’t it possible, I found myself thinking, that holding relentlessly to individual human scales of usefulness and time is a little … well, ethnocentric isn’t even the word. Speciecentric? … We are, after all, part of a greater reality which none of us will see the end of.

This expands on an idea I had long ago: that I don’t have to hold everything inside my skin. I was meditating to escape pain one day, and it followed me in, the jerk. So I took the idea that I’m just one drop in the ocean of humanity, and as my sense of awareness grew and expanded, the pain did not — it dissipated, being spread so wide over the whole world, and went away.

It was waiting for me when I got back, of course, but for one thing there was less of it; for another, the break did me a lot of good.

So I’m working on expanding my awareness. It makes it easier to detach from Things — objects whose main purpose is to take up space, use up mental energy, and carry some emotional trigger that, in fact, I probably don’t need. Life is quite emotional enough without the needless triggers, thanks.

Words, words, and words, with a poetry chaser

Isy / / humor, perspective, poetry, satire, tasty words

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.

A gift that keeps on giving

Isy / / loved ones, perspective

My 37th birthday happened at a fraught time (no, really?) but I planned ahead: 4 friends and I, tiny Brazilian restaurant, pitcher of mojitos.

No crowds. No fuss. No presents, please.

That was important. I was preparing to move but didn’t know where yet.

So Joyce and Graham, the techies, got me an early iPod Mini. Laura, an artist, got me an extraordinary shawl. Vince, a true gentleman, did exactly as I had asked and felt terrible about it.

My 37th year had been full of character-building surprises. I had decided not to reprise turning 36 because the subsequent year had been so rotten, but I wasn’t happy about getting older. Even before the drinks were poured, I was bitching about my age.

Joyce and Graham, who were just peeking over the shelf of 30, said, “There there, it’s good to be seasoned, age brings wisdom,” and so on.

Laura, a couple months older than I and the most sensible artist I’ve ever met, said, “Yeah. It sucks.”

Vince, who was barely old enough to rent a car in his own name (although he was bright enough to write the certification tests for Borland C++), with a self-deprecating shrug and a charming little pinkness, said, “I don’t know, you always seem to me like you have a mental age of 17.”

I remembered being 17 — happy, busy, fit, secure in my slice of the world, delighted with most things and amused by the rest, my adult mind just blooming, and absolutely no idea how cute I was.

Once I could reef in my grin enough to use my mouth for speaking, I said, “You just gave me the best present of all.”

Sadly, he didn’t exactly believe me.

The iPod Mini was superseded, then stolen. The beautiful shawl disappeared, along with everything else, when the US Mail failed to deliver what I mailed in my move.

But every year, when yet another birthday looms, I remember Vince twitching his shoulders and saying sweetly, “I don’t know…”

And, really, the count of years doesn’t seem quite so bad.

Because things change anyway

Isy / / Dept. of Blith. Obv., perspective, self-care, what works

As I rebuilt my posture this morning per usual, I remembered a conversation I had in my 30’s with my Shaolin teacher. I was sorting out knee issues, and after a week of working on something I hadn’t thought much about in several decades, I said in a ‘pity me’ voice, “I’m relearning how to walk.”

He shrugged, too distracted by the picayune-ness to notice the self-pity: “I’m always relearning how to walk.”

That was one of those moments that made me go away and think all the way up the thought, all the way down the thought, and all the way across it, too. (A good Sifu/sensei can do this to you, sometimes in even fewer words than that. Ted Mancuso in Santa Cruz; look him up.)

So here’s today’s update from the Department of the Blitheringly Obvious, which does a brisk trade because we are so good at not connecting the dots … Or I am, anyway:

1. Time moves.
2. We go with it.
Therefore,
3. Things change.
Therefore,
4. Our bodies alter, and take us with ’em.
Therefore,
5. We are always relearning, whether we know it or not.

Therefore…

I might as well pay a bit of attention and relearn better, instead of slipping off into relearning unconsciously and making things worse.

My posture is definitely improving. Core strength is damn good. Pants fit and my low back is MUCH better.

I haven’t worried much about my knees in ages. … Hunh.

Dopamine, poverty, and pain: the lighter side

Isy / / critical thinking, CRPS knock-on effects, nature, neurotransmitters, perspective, what works

Executive decisions are made in the forebrain. The information that goes into them comes from the sensory cortex (nearby) and the hypothalamus (back in the dark heart of the brain.) The execution of those decisions happens in the pituitary, among other places. In short, there’s a lot of nerve-impulse mileage laid down between the moment you feel the itch in your armpit, check your surroundings for privacy, scratch away, and give a happy little sigh of relief. Lots of neurotransmission there.

Dopamine is the neurotransmitter of executive decisions. It’s a daughter chemical of adrenaline, and your adrenal glands share blood supply with your kidneys; interestingly, Chinese medicine views the need to make too many decisions as being hard on the kidneys. Makes perfect sense to me. But that’s a red herring.

The key is, without dopamine, the decision can’t get from the frontal lobe to the action parts of the brain. Dopamine levels can be knocked back by pain, drugs (including the prescribed ones), depression, poor diet, and — of course — overuse.

People who have crippling pain have to make exponentially more decisions than those who don’t. Every action is measured against an internal set of standards that don’t exist for normos: how much pain will lifting that cost me? That car door — which way should I turn my hand to minimize damage when I pull it? How many function-dollars do I have left in my body’s account — enough to do laundry _and_ shower? Or should I do just one? If so, which one is more necessary?

Poor people have a similar ceaseless train of calculations running in their heads, but with different parameters. Can I get a little meat this week? What are my produce options, since there’s no good market in this area? Which neighborhood’s market has the best prices? Have I got the bus fare? Will I get into trouble over there? How do I blend in? Can I call in a favor to get some Tylenol too? These headaches are killing me.

As a poor person with pain, I figure I make easily 20 times as many decisions — on a slow day — as a normal person my age. When I was still overmedicated, I used to feel like a loser for not making 100% perfect decisions 100% of the time; in fact, I occasionally just goofed. And the trouble with living within such narrow parameters of function and finance is, the occasional goof can put you behindhand for a very long time.

It’s easy to sneer at those who make weird decisions like paying for a flat-screen TV instead of a semester of junior college. But try wringing out your dopamine every single blessed day, week after month after year, and see how well you do. These people don’t have decision-making disorders, so much as decision-making overload.

If you’re poor or in pain, take some credit for getting through the day. Cut yourself a little slack. Take a moment to rest and relax. See, it’s easier already.

Being hypercritical just uses up your dopamine faster. Why? Because criticism is the result of long strings of decisions. It’s very dopamine-expensive. (Ever wonder why hypercritical people don’t seem very happy? Now you know.)

Take a moment to be happy, to notice what’s good. Those moments rebuild your store of decision-making, anti-depressant dopamine. Each natural, happy little sigh is a shot of the stuff.

Sniff that flower one more time. Scratch where it itches (preferably in private.) Feel the sun warming your head. Laugh with your friends. There’s a reason why it feels so good. It really does make you stronger. It freely gives back what life makes you use. And it’s not too hard to find a reason to be happy.

Inspiration and vacation

Isy / / nature, perspective, what works

I must remember to inhale. It’s too normal to go about with my whole core clenched. It’s very tiring, and I’m generally tired enough, thank you.

Here’s an interesting thought… If I feel chronically un-rested, it’s tempting to think that the solution is to rest, at some point, for long enough to recuperate completely. Nice thought, eh?

Doesn’t work. For one thing, I need to Do Something to keep the lymph flowing & neurotransmitters cycling, so absolute rest is beyond me. For another … Well, pursuing yet another extreme state probably misses the point.

So I come to the idea — by a very long route — that resting and recuperation are supposed to be as much a part of daily life as eating and breathing and sleeping. (Strange thought.)

It takes a certain amount of determination and persistence. It’s much easier, given my situation and habits, to churn on something that frustrates me or to brace for the next unexpected blow.

I’m practicing. Yesterday, I took a more scenic route home; don’t think it took much longer, but I got quite a bit of sun on my hair … And I remembered how to inhale.

I got only a couple hours’ sleep the prior night and worked hard that day, but at 5:04 pm I felt more rested than I can remember.

Today, I still feel that much better. Inhaling is still something I need to remember to do, but the part about digging the moment I’m in is already easier. Stretching is spa-time. A moment in the sun is a break. A beautiful glimpse of sparkling sea is a mini-vacation.

So something worked.