CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Wednesday, December 28, 2011

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):

Monday, December 26, 2011

Himalayan dreams

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

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

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

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

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

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

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

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

The main problem? Human ignorance, voraciousness and violence.

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

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

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

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

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

Meanwhile, I'll keep looking.

Addendum 1

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

Friday, December 16, 2011

I intend

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

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

Their training is not that good.

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

Refocus on what works: In memoriam

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

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

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

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

But today, they are biting deep.

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

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

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

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

It means the studies need to be done. Period.

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

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

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

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

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

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

I do not consent to the deaths of my friends.

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

Let's find a real way out.

Wednesday, November 30, 2011

Windstorm

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.

Sunday, November 27, 2011

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: 

Monday, November 21, 2011

Intestinal Fortitude: a dirty story

Back by popular demand ... My crappiest Christmas ever -- a comedy.

Caveat emptor: This is not something to read before dinner, unless you're as strange as me.

Chapter 1: Welcome to the wonderful world of Isy

I have developed such a number of work-related hand injuries that there's nothing like it in the medical literature. Leave it to me to make history in such a feeble way.

I had a ganglion removed from the inside of my right wrist, just over a year ago. Subsequently, I developed a neuroma which was related to the surgery, carpal tunnel which was related to the ganglion, and radial tendonitis apparently out of pure cussedness. The tendonitis got so bad the radial nerve itself got involved.

Cue to second surgery -- December 23rd, 2001, I got a new wrist for Christmas: my carpal tunnel was released, the neuroma on the back of my hand was removed, and a nick was taken out of my radial muscle to give my irritated radial nerve some much-needed room. The only thing to be worried about, the surgeon said, was if the nerve got trapped in the scar tissue. (You can see it coming, can't you?)

First, I had trouble getting the post-op pain managed. Since a large part of my forearm and hand had just been flayed, pain was a real issue. The Vicodin made me dopy (which wasn't too bad), and horribly nauseous (which was.) So my surgeon prescribed Phenergan for the nausea, which made me even sleepier than the Vicodin alone; but, without the nausea to consume my attention, it was clear that Vicodin wasn't cutting the pain. So he gave me Percocet instead of Vicodin, which made me wackier still AND made me more nauseous than ever. Back on the Phenergan and bye bye brain!

I had a trip planned to see my folks and show off my cast. Linda took me to the airport and had the bright idea of taking Dramamine instead of Phenergan, so I could take my pain meds without alarming the neighbors with wanton drooling and wordless babble. It worked so well that the flight was, in fact, better than the previous two days at home on my couch had been.

Chapter 2: Gumming up the works

Turns out I flew into a horrendous tummy virus the entire DC-area family had, but thanks to my relentless handwashing and disinfecting the doorknobs, I avoided it. That was a miracle, but it may have been my first mistake . . .

Within a couple of days, my insides came to a grinding halt. Stopped up like epoxy.

It was awful. Couldn't get anything in, couldn't get anything out.

I stopped taking the Percocet, which had undoubtedly caused it, and tried to hustle things along. Water, fiber, laxatives, Colace, you name it. I used to be a Registered Nurse -- ER, ICU, HIV, Home Care; a varied career, but interesting, and it left me with a comprehensive knowledge of how to cope with intransigent innards.

The growing pain, I knew, was partly due to the growing pile of garbage in my gut, so moving things along would solve several problems.

After chugging a few oz.s of a particularly effective cathartic, instead of going Number Two, I wound up FACING the loo and heaving everything I'd eaten for the past 18 hours. Once I could breathe again, in a burst of uncharacteristic sanity, I told Mom (in a bored voice) to grab a book and take me to the ER.

Younger brother Huck, bless his heart, drove over from his in-laws and arrived shortly after I had gotten a gurney and laid my sorry ass down. The three of us kept each other in stitches, and got at least a giggle out of everyone who came into the room. This was a great relief because all I could do in the waiting room was weep with the sheer, all-consuming misery. Once on my home turf, with no tedious shift duties to manage, and with two of my family to entertain and amuse, things improved.

For me, anyway.

Mom was frankly astonished at the way I spoke to the nurses. She was discomposed by what she saw as my dictatorial manner. Coming from her, of course, I thought "dictatorial manner" was priceless, but, more to the point, I was perfectly in my element -- I loved working in the ER, and here I was in an ER where I knew exactly what needed to happen but somebody else had to do the messy part. Woo hoo!

My first nurse was new to the profession -- perfectly happy for help and advice, especially when it came to starting IV's. I told her I was a hard stick, and why: tough skin, leathery and highly-innervated (very sensitive) vessels, lots of valves in my veins, and -- since I was both out of shape and dehydrated -- my veins were tiny.

After one disastrous attempt, she dashed off and got somebody else.

That somebody else listened to my description, took one look, literally blanched, and ran off to get a third person. (I could tell by that that she was a more experienced nurse: never blow a vein needlessly.)

Bless her heart, person No. 3 got it in, first try. She turned out to be an ER technician who's graduating nursing school this year. That young woman's got a bright future.

Even the ones who got scared off were entertained. Two or more Aweighs in one spot always seems to turn into a movable feast of unabashed commentary and shameless wordplay. Mom and Huck entertained each other endlessly over my steel-plated veins... Bullet-proof skin... Vacuum-sealed gut... Armor-piercing eyelashes…

Chapter 3: Moving mountains

In the ER, a pleasant, sprightly doctor of sensible years did an unpleasantly thorough exam, with the best manners possible under the circumstances. He said I was not actually impacted, it's just that things weren't moving.

So, he ordered some blood work, medication for pain and nausea (YESSS!), some exciting radiological studies, and, once I could bear to move, the most astonishing plethora of enemas. In fact, pretty much every type of enema I had ever used on others, over 8 years of nursing and 4 as a nurse's aide. We went through the entire list. I counted.

I can't help thinking I've paid off some serious karma.

Once my stomach stopped arguing with me and my arm stopped screaming, I could prepare for the CT scan. I swallowed the contrast dye like a trooper, thinking that this was another thing I'd had to bully people into, so I was going to knock it back and say, "That's not so bad." My stomach even held it down, thanks to those marvelous drugs. I also had intravenous dye, just to make sure we got pictures of everything.

It was intriguing to be the subject of all these tests I'd administered to others. I wouldn't recommend it for casual entertainment, mind you. I'd rather rearrange my entertainment system or clean the kitchen or sit the neighbor's kid -- any neighbor, any kid, doesn't matter, it would still be more fun. But from the standpoint of pure empathy, really seeing the other side of an experience, this was hard to beat.

The IV dye was kind of fun -- I was all tingly-warm, and just high enough to enjoy it. I giggled and tried not to wiggle on the table as the tech snapped away. He broke his grumbly facade to ask rather wistfully if the dye was really that fun? He had "never gotten to try it."

I said I didn't recommend needing it, but since I had to have it, it beat a sharp stick in the eye. Or the elbow, which is where my IV had eventually gone in. I added that the dye didn't make up for the previous three days, a remark that made him nod knowingly and then retreat to his rad-shielding and goodly gruffness.

Then, back to the ER and more enemas, since we hadn't worked our way AAAALL the way down the list yet. Up went a suppository.

I wondered when I'd start developing hemorrohoids. Or a lean-to.

I have never shoved so much stuff up a single butt in my entire life. Ever.

Nothing, nothing, NOTHING happened. It was awful.

With all that garbage going in at both ends, and nothing coming out, I was beginning to feel a little bit ragged.

As I lay there, sweaty and despairing, the dynamic little doctor swung his fist determinedly and said, "Don't give up. I'm not giving up. We can move mountains -- we can move your bowels!"

I hadn't thought of it that way.

"Next," the doctor continued, then took a breath to brace himself to deliver the news. "Next," he started again, "we're going to try a soap-suds enema."

Why the pause? Because ... well, you have to really understand what he planned to do to me. A soap-suds enema works like this: You pour a couple quarts of warm water into a bag, add a little packet of castile soap, mix it up, and instill it (nice word, eh?) into the colon in a process that means every leg of your colon gets at least half a quart of warm, sudsy water in it.

Have you ever knocked back 2 pitchers of beer in a span of 5 minutes, and then not been able to get to the toilet for half an hour? It feels a bit like that, I suppose, only without the alcohol or winning a bet.

The rationale behind the soap-suds enema is that the soap acts on the intestinal lining to make it want to contract, and the sheer volume of water reminds the muscles of the lower intestine that they have a job to do. It's an excellent remedy, normally very mild, and is generally well-tolerated. However, it is definitely NOT something you'd think of when your patient is packed out to the point where it's standing-room only in there!

I looked at him dumbly, jaw fallen open to rest gently on my chest. Finally, I got my voice box back in gear: "You're kidding," I husked.

He shook his head. "I think volume is the trick."

I didn't know what to say to that.

If he thought that 5 days' food and water (and tea and Colace and fiber and drain cleaner -- just kidding -- and I don't know what) and then the past 4 hours' concerted efforts in a well-stocked hospital, didn't add up to enough volume for any 3 colons, there was simply no reasoning with him.

I stared.

He stood his ground.

Finally, I fell back into the sweaty sheets and said weakly, "Okay. Bring it on."

The nurse did all the things I remembered doing so often, instructing me in the process I once knew so well but had conveniently completely forgotten the moment I realized I was getting it. When the stuff started rolling in, I did like every patient I've ever had who had this procedure, and wailed and bitched and moaned that I couldn't possibly hold it, she was going to have to stop, wait wait wait it's coming out!

And she, like the ER nurse that I used to be, was reasonably kind but absolutely relentless, and told me first that there was hardly anything in there (liar!), then that I was doing fine, then that we were nearly done, and finally not to fuss because I could hold it a lot better than I thought I could.

Bitch!

She was done, and all that remained was for me to hang onto that ghastly load for 5-10 minutes by the clock, and hope I could make it to the portable potty that stood by the bed when the moment of truth arrived.

I lay there, breathing carefully in order not to disturb things, trying not to think about exploding.

Five minutes slowly passed.

Five and a half.

Five and three quarters.

And then ... it worked.

Boy, did it ever work!

It worked really amazingly well. And I'm happy to say that I made it to the bedside commode, where I hung on for dear life.

I can't say that I didn't know intestines could hold all that, because I know they can -- I've seen quite a lot of intestinal contents in my professional life, and I'd seen more at once than this. Not a lot more, but still, more.

I've smelled a lot, too, and it was on that scale that this stuff was impressive. The stink would have knocked over a horse with hay-fever. It cleared every sinus in a 30-meter radius, and may have triggered a couple of asthma attacks. I could hear Mom exclaiming from the hallway, on a rising scale that cracked glass on the final word, "Isy, is that YOU??"

Even as a nurse, you don't often get to take a whiff of bowel matter that has had the best part of a week to fester and mature before reaching the open air. It's just not a common occurence.

It really reminded me that the colon is simply alive with bacteria whose sole job is to rot your body's effluent.

What rot!

What effluent!

It was stunning.

One of my nurses came in as I was recovering from my frankly astonishing performance. I felt fantastic, although I could barely hold myself up and was dangling from the arm-rails.

I said, beaming, "Aaaah, the sweet smell of success!"

Here's how you could tell she had been an ER nurse for too long, but not quite long enough: she sniffed. Then she gagged, riposting, "Well, I wouldn't go that far!"


Chapter 4: "Oh, by the way ..."

Turns out that, among the other blood tests, the doctor ordered a pregnancy test. Naturally, I tried to suppress a giggle. Mom asked, in amazement, "Why didn't he just ask you?"

I replied, "Well, he has good manners. It's not something you want to ask a young lady when you've just had your hand up her butt."

The timing was perfect. She choked on her water. Huck patted her back, once he could hold himself upright.

I got admitted to the hospital, which meant they had to make sure they had dotted all their i's and crossed all their t's. Somebody at the nurse's desk smacked their forehead and realized that they hadn't checked ALL possible sources of internal distress...

The nurse and doctor trooped in with rather grim expressions, and said we had to do a pelvic exam.

ER docs hate doing pelvic exams. They really think it offends their sensibilities as much as the patients' own. (Most of these doctors are men, so we really don't need to comment further.)

They didn't spend ten years in school in order to stick their hands up strangers' skirts. It's gross. Give 'em a messy trauma any day. Blood, guts, bits of bone sticking out, messy burns, plastic tubing everywhere, monitors beeping in every key -- they love that.

Pubic hair? EEEEEW!

Consequently, they tend to be pretty clumsy with the GYN stuff. It hurt like hell. And they expected me to be sympathetic.


Chapter 5: Life on the inside

There was a delay in getting me admitted. The only spare bed in the hospital that night was on the cardiac step-down unit (my second-favorite type of nursing work), and they finally put me there for the hell of it. It was like old home week for me, except their beds and machines were much nicer than the ones I ever got to use.

They gave me IV pain medication, but of course they used another narcotic, Dilaudid. (Honestly, my admitting doctor was a turkey.) I could only have it every 4 hours, but unfortunately it only lasted about an hour and a half, and I spent all that time sleeping because the pain kept me awake the rest of the time.

It was another flashback for me to see the expression on the nurse's face when I called for pain medication with tears streaming helplessly down my face, and she had to say she couldn't give me any for another 2 hours. I'm sorry to say, though, that I had no sympathy to spare for her. It was all I could do not to plead or snarl. I suspect she cheated as much as she could without fudging the law, in order to get me my next dose sooner. I wasn't coherent enough to say so, but I know I've done the same, and all the thanks I needed was to see those eyes close peacefully that much sooner. Mind you, I think I'd have called the doctor the second time.

Of course, they gave me Colace twice a day. They also gave me Phenergan intravenously, so I got plenty of sleep. But, every time I opened my eyes, I saw Mom sitting and reading in the chair nearby, or I saw her coat draped over the back of it and knew she'd return soon. She's no mush, which is just fine, but knowing she was there made my dazed and painful world immeasurably better.

I spent 3 1/2 days in the hospital, getting rehydrated (16, count 'em, 16 hours before I even whizzed!) and trying to figure out what was going on. Most of it is a blur.

To start with, I had x-rays of my abdomen on Sunday, which required having a clean colon. I was utterly aghast when the saccharine young nurse brought me a bottle of magnesium citrate. I said, "You realize, the only time in my life I had that, last week, I threw up all over the place."

She shrugged. "That's what they want you to take. Your insides have to be clean."

This, after 3 days of nothing to eat, and the most spectacular bowel cleansing I've ever seen not 2 days before. There wasn't anything left to clean.

I opened my mouth to argue, but then realized that things could be worse. There's always the electrolyte-based cathartics, like Colyte and Go-Lytely, which taste like a mixture of sweat and window cleaner and come in, I'm not kidding, gallon jugs.

I pinched my nose and chugged the dose. Two hours later, my intestinal tract was cleaner than it's been since I first saw the light of day.

The nurse twitched an eyebrow, "That was quick."

I disliked her enough to say, "I told you so."


Chapter 6: X-ray vision

I was still bloated, but my insides felt as light as air. Sitting in the radiology hallway, with a serious case of bed head and draped in ghostly hospital wear, I felt like a giant marshmallow with a bad hairdresser.

I was fifth in line, but the radiologist, a hunky Italian with a sense of humor, stepped into the hallway to amuse me periodically. At one point, he asked if I was "Mrs. Aweigh."

I blinked and said, "Something like that."

One of the things I really like about Black English is the title "Miz," which is perfectly respectful yet maritally vague. He wasn't Black and didn't quite know how to recover from the faux pas, so I said what was on my mind, in order to salvage the conversation.

He wrinkled his eyebrows in a hunky Italian way and replied, "Your arm hurts? I thought you were here for abdominal X-rays."

I said, "I am. It's been a helluva week."

"What happened?" he asked.

I told him, "I had surgery in three places on my arm on Monday. The first pain medication didn't work and it made me nauseous. The second pain medication stopped me up. I spent ten hours in ER getting cleaned out, and it's taken two days to get me rehydrated. I also had an abnormal pelvic exam. So we're trying to figure out what the hell's going on."

He blinked, looking stunned. "Well, you sound like just the kind of girl anyone would want to marry."

"Yeah," I said, in my bloated gown and bloated face and bloated hair. "I'm a ball of fire."


Chapter 7: Radical tonsillectomy

On Monday, I got to see two competent doctors: the partner of the idiot who admitted me, and the gastro-intestinal (GI) specialist he referred me to.

The GI guy was clearly one of Nature's perfect gentlemen. He made a special effort to see me that day, and came in at 4:50 pm looking like someone at the end of a very long day with no rest in sight. I thanked him for the effort, and he waved off my thanks gracefully, saying that tomorrow was going to be a nightmare and he wanted to speed things up for me. It was December 30th.

I told him my adventures of the past week, describing my surgery, my pain, and my adventures with my gut. I added, "My pelvic exam was problematic, too. But it was done by an ER doc -- bless his heart, I think he was reaching for my tonsils."

The doctor's reaction was one for the record books. His face flickered slightly, like old film footage. He held absolutely still for a very large fraction of a second, refusing to lose his composure. Then, after a short, controlled breath, he snapped right back into the patient interview with a straight face.

I think I saw him patting a few hairs back into place as he walked out, but that was it.


Chapter 8: Potty training

The GI doctor ordered an ultrasound. The nurse came in with a quart of fluids for me to drink, and I, remembering all the times I had had to send patients back because they hadn't drunk enough, asked for seconds.

Well, I still had a nurse's bladder, which means I could increase a full dress size before I become all that uncomfortable. They forget that nurses are weird that way, and think that it's not worth examining you until you're really uncomfortable.

And then there was a delay.

By the time I got to ultrasound, I was in agony, and the ultrasound technician took one look at my abdomen and expressed serious concern that I might pop. She scolded me, in her best maternal manner, and said that I should trust her to know exactly how big she needed my bladder. She sent me to the bathroom with a cup, telling me exactly how many times to fill it, and exactly to where, to bring my bladder to her preferred volume.

The bathroom. Some idiot had pissed all over the floor. Not just the cute little territorial dribbles most men leave. This guy must've been blind, drunk or both. It was appalling.

Incidentally, I've got a little rant to insert here. EVERY guy dribbles. I love my men friends, I really do, but I have to mop after every visit. And, just to cap it off, they don't drip dead center -- they ALWAYS put it just where you want to put your feet. Now, I hate vacuuming, so I never wear shoes in the house. I hope I don't have to spell this out for you.

I mean, really, would it kill them to use a little toilet paper? When the door's shut, who the hell is going to see? I've told them: despite what they've heard, there is NOTHING in t.p. that will make It shrink.

And don't let's start with the toilet seat thing. The entire lid is always closed except when the toilet's actively in use, so EVERYONE in my house has to pay attention to the seat -- so all of y'all can stop your whinin'!

Boy, I feel better after getting all that off my chest. Back to the bowels of this story.

I was too wonky to really deal with the flood, and too wonky to think much at all. I unfolded paper towels, one by one, maneuvering around my IV tubing, clonking my cast, wielding my other hand scarcely better with its sausage-thick fingers, and piled the towels high, until finally no more leaks got through.

And then I had to wipe off and cover the seat, while not disturbing my carefully-constructed polder underfoot. Pulling the towels, stacking them deep enough to keep my fingers dry, keeping the IV tubing out of the toilet, wobbling cast, one hand of sausage fingers. Then I had to figure out how to wee into a cup while keeping my eye on the measuring marks ... and simultaneously keeping the paper cover of the toilet seat in place ... while craning over a huuuuugely-bloated belly ... trying to keep my IV not only inserted in my arm, but out of the toilet ... with my one arm with the hand of sausage fingers.

I still have no idea how it happened, but apparently it did: I emerged with a properly filled cup, dry butt and clean feet.

It was the most athletic activity I had had all week.

It turned out that the ultrasound technician had been waiting for me the whole time, and she was rather afraid I had gotten flushed. It turned out there was a larger toilet down the hall, but she hadn't wanted to make me walk all that way. Had I thought to complain, it would have saved a lot of time. And trouble. And paper.

I'll try to remember that next time.


Chapter 9: The sweetest sound I never heard

The tech thoughtfully warmed the jelly before spreading it on my belly, so it was merely cold rather than icy.

I love radiology to start with, but seeing my own inner workings (working innards?) was fascinating, completely fascinating. Once I figured out how the transducer worked, I could tell what she was aiming at, and could interpret the shadows on the screen. It was the most amazing, warm and fuzzy feeling to see my own organs bubbling and sloshing away, going about their work as we peeked in at them. All the anatomy books, all the photographs, all the trauma surgery had not prepared me for how beautiful the organs are when they're just pottering away.

I've seen a beating heart in an open chest before, and I thought that was the most beautiful thing in the world. I've felt the warm rush of gratitude to my own busy heart as I feel it going thub-bub, thub-bub (I have a tiny murmur), day after day, never asking for sick leave or overtime. I've listened to my lungs -- a lot; I'm asthmatic -- and am probably more familiar with those sounds than a normal person ought to be, but on the days when the air moves in me as sweetly as the breeze through new leaves, it's a joy to hear.

But this was the first time I got to see my own parts in action. Each one is extraordinarily appealing, in its own distinctive way.

My liver is a modernist work of art. Jackson Pollock on his best day, working with MirĂ³, after a really good liquid lunch with Stella, might come close. It's an arrangement of seriously artistic disorder, with a sense of gorgeously strange method to its apparent madness.

My kidneys are so adorable you just want to cuddle them. Honestly, they are darling! If they were people, I'd want to ask them out, because anything that looks so sweet has got to be worth some time. I never thought of kidneys as being cute before. Who knew?

The weird thing in my pelvic exam turned out to be picture-perfect ovulation (and a classic example of how poorly-understood "normal" is in women, thanks to the centuries-old bias in medicine.) The ovarian follicle swells up as it ripens, forming a cyst; this pops to release the egg inside the cyst. A follicular cyst was in full bloom, opening like a chrysanthemum, the egg possibly visible as it started off, tumbling downhill toward the fallopian tube. It was a garden in bloom.

The tech enjoyed having an interested and educated audience. She gave me a complete guided tour, and, as a sidebar note, I noticed how she used acronyms where most nurses use the whole terms. I guess, if you look at that many things 6 times a day for 15 years, acronyms are a lot easier to deal with.


Chapter 10: Free at last!

The GI doctor with the beautiful manners discharged me just in time for a New Year's I was in no condition to enjoy, with strict instructions to follow up with my gynecologist and a GI doctor at home. Once things were moving, there wasn't anything visibly wrong with me, but everyone was a little worried. So I have the rather unpleasant prospect of comprehensive GI and GYN workups ahead of me.

I hear the horrified screams: "That wasn't thorough??"

On the up-side, my arm pain is finally managed, without drugs. I'm using this wonderful thing called a TENS unit. It sends a mild electrical current through the relevant part of your body, interrupting pain signals sent by your skin and subcutaneous tissues. Love it. There are a couple of downsides: the cords are affectionate, and want to hug everything in reach; and if one pad gets slightly pulled off, the same current gets concentrated over a smaller area, and that HURTS. So I can't use it every time I need it, but it is there for when I can.

I have one on loan right now, but when I get one of my own, I think I'll name it Panacea. Or possibly Heroine, since it does save me, and it takes the pain away. Nice little double entendre.

While I was still in DC, though, I couldn't get a TENS unit. I made the doctor's day when I said emphatically, "I don't want narcotics. Give me Toradol." (Toradol is like Motrin on steroids. The one downside is that the healthiest person has no business taking it for more than 10 days, because it will rip a hole in your stomach.)

He blinked and said, "I don't hear that very often."

I'm susceptible to stomach ulcers. I still got Toradol for 10 days.

I was so relieved not to be suffering that that alone must have reduced the level of stomach acid, as the drug did no apparent harm.

Next, I had a couple of days of lying around the house and recovering, drinking up the ginger ale mom hadn't finished when she was sick with her tummy bug. It was absolutely delightful to be warm indoors, have the run of the best private book collection I know of, and have Mom being as sweet and attentive as she could be.

On the downside, I wound up overhearing far too many of her conversations with our nearest and dearest about my recent situation. I had to spend my limited social time trying to explain events tastefully (because of course they all asked me to tell them about it anyway), after knowing for a fact that my mom had been very free in using words like "bowels", "enemas", "pelvic exam", and other ghastly, pitilessly explicit terms to everyone she spoke to. For goodness' sake, you'd think someone with a vocabulary like hers could come up with something better.

But then I knew I would not be misunderstood, using terms like "insides", "cleaned me out", "female exam", and the like, because those I spoke to had gotten the inside dope -- sorry, the poop -- that is, the facts of the matter, from her in such unmistakable language beforehand. Besides, it made me look all kinds of classy by comparison.


Chapter 11: Need a hand?

Yes, the nerve did get trapped in two of these scars. However, after weeks of hard work, I've made a lot of progress in busting it loose. With any luck, all should be well in a few months.

... That was written in early 2002. Since then ... well, you know it didn't end there.

Tuesday, November 15, 2011

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

Monday, November 14, 2011

Freedom, friends, and owning responsibility

I found this in the archives, and thought it worth resurrecting. It's from my more active days, about 5 years ago. It addresses the meme of personal responsibility, and I'm still a huge fan of that.

...

I was an ER nurse and, regarding seatbelts -- not to mention motorcycle helmets -- I can say that those of us on the front lines know that sometimes the seatbelts cause a death. It's in roughly these proportions, if you like to gamble with money, too:

You place a bet that can go only two ways, so it's a pretty straightforward bet. You can bet between 50% and 100% of your lifespan's worth, including house, car, future houses and cars, your, your spouse's, and your children's potential lifetime earnings, everything. Lots of money on the line. When these magic 2-sided dice roll, here's the breakout:

Betting against seatbelt/helmet, odds of winning are maybe 1 in 3,000. Losing, which 2,999 times out of 3,000 is what'll happen, means you lose 50-100% of your and your family's lifetime worth. Gone.

Now, personally, I'm a huge fan of personal responsibility -- a HUGE fan. Pre-injury, I used to ride a motorcycle, and I longed to take my helmet off.

My pretty ride overlooking the Monterey Bay. This picture doesn't show the full-faced helmet and full leather I rode in.

The only reason I didn't do so on public roads is because I really couldn't provide for all that protection. I was a stellar rider, but I had no reason to suppose I'd be immune to the bad driving of others! And I honestly thought I had no right to expose my family, neighbors, and colleagues at the hospital to the huge potential for supporting the direct and indirect costs of my possible accident.

I never did well with the assumption that what I did occurred in a vacuum. I'm very connected to others and they to me, and as far as I can tell, most humans are.

So I had this great idea about 20 years ago, which has never come to pass: Special license plates!

If you have

  • full catastrophic coverage,
  • comprehensive long-term-care coverage,
  • adequate liability insurance,
  • complete prescription coverage,
  • a completed will, and
  • a life insurance policy that would make sure your children, pets, crippled aunt, and other dependents would not become wards of the state ...

... THEN you get the special plate, and everyone knows you can leave off any protective devices the law would otherwise require.

It's only fair: it alleviates the cost to the state, which would pay for the program right there; it affords that liberty to those who are mature enough to fulfill their responsibilities to the rest of their world; and it lets the other drivers on the road know that you're more vulnerable than they are (mostly) so they might cut you a break. Or not. But that's their call -- their responsibility.

Similar thing for smokers. The bans started after the passive-smoking reports were published, not before. I have no problem with grownups buying and using their own drugs, but it's important to take responsibility for the whole shmear, not just the part you like.

In short, smoke all you want, but keep the poison to yourself. Ride or drive as naked as you want, but don't make the rest of us pay.

I'm not a scientist or a policy wonk, I'm a frontliner with the scars to show for it. I passionately believe in rights -- but not without responsibilities.

Just a thought.

Saturday, November 5, 2011

The Raven quoth ... Something untranslatable

The ravens almost never come this far out on the water, but this morning two, then three of them, didn't want to leave my 'hood.

One perched on my mast; I shook it off with a nasty remark (their poop stains), and it flew around and around and around, too restless to settle elsewhere, too fixated to leave my bit of the sky.

(My unrepaired jib and the neighbor's "corporate America" flags point to the rook's erstwhile perch)

The restless raven rasped brusquely, then all three absconded at once.

As mythological moments go, that was a showstopper.

If I were writing a story, that would only happen right before all Hell broke loose. The thing is, Hell has a habit of breaking loose around here -- in my life, in Oakland, on Earth generally these days. Why ravens now?

I'll keep an eye on the sky (I always do, for the weather) and my nose to the grindstone. I'll keep my hand on the plow and not sheathe the sword. And, of course, both feet planted firmly on the ground while grabbing the tiller.

What's left of me will post updates.

Saturday, October 29, 2011

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.

Friday, October 21, 2011

Define stability

I live on a boat. Not a houseboat, a sailboat. It's 29 feet long, 9'4" at the widest point (outside measurement), and has overhead clearance of just barely 6' in the main cabin.

Since I'm less than 9' wide and 6' tall, this works for me.


A small boat is an unstable surface, shifting with every step and wiggle. You keep your balance by toning your abdominal muscles – as soon as you tighten your midsection, the wobbly feeling disappears, and even if the boat's surface is 30 degrees from horizontal, you can still keep your feet under you.

I have the strongest core of anyone I know who doesn't either live on a small boat or teach Iyengar yoga, because that's just how it works.

A friend of mine moved away and couldn't get rid of his even smaller boat (25' with rather less overhead clearance), so he sold it to me cheap. The main difference between his and mine is that the smaller boat has a larger engine and a thicker hull. It was designed to sail across the Pacific.

Now I have two boats. (That's COMMODORE Idiot, thank you very much.)

For various reasons, it's time to leave the Bay Area. I'll be returning part-time to rural Massachusetts, but I can't hack the cold season. It would be far cheaper and less painful to gnaw bits off me with a blunt and rusty saw. So I have to come up with some way to live and somewhere to be during the off-season.

Did I mention that I have a boat? ... In fact, two?

I'm discussing a boat-partnership with a friend of mine who is capable of the work, but hasn't found out if he really likes it yet. We're going to work on the boats this winter, getting them ready to sell; in the fullness of time, we'll know if we're cashing them in for an upgrade to sail towards the Equator in, or flogging them and splitting the money then going our separate ways.

The second option is easy, sensible, and well within my expectations and experience of life. Our friendship could easily continue intact.

The first is not necessarily any of those things. But the long-term benefit of it is that it would probably give me a second home to go to, somewhere warmer, with the comfort of a friendly face to greet me.

Some think that coming away with a sack of cash is more like stability. Having money reassures me in a way known only to those who've done without. It feels solid.

But what's the value of solidity? I'm used to ground that moves under my feet. Snug up your core, and it's easy to handle. And there's nothing like casting off and taking off, nothing over you but open sky, and your own home flying through the water with such poise that it makes even the cormorants faint with envy.

[IMG cormorant superflock on my birthday sail]

Stability might mean solidity. Or it could mean being able to balance different forces well. Which of these sounds more interesting? Even – or perhaps especially – when you aim to make each day as sparkly and intriguing as a handful of jewels?

[Just wait till I get the pictures up :)]

Thursday, October 6, 2011

On being human, or bearing the unbearable

Mythology helps me put my mind outside my ideas of what's impossible, and thereby live constructively despite CRPS. More on that later, probably, but here's an hour's private lesson with the greatest practical mythologist of all time.

Good for playing over & over while you do other things, and let different bits surprise you on each replay.

C.G. Jung In His Own Words - The World Within [FULL DOCUMENTARY]:

http://www.youtube.com/watch?v=75766BLgqeA&feature=youtube_gdata_player

(With grateful thanks to the L. A. Institute for Carl Jung, for providing this whole film on YouTube.)

It's always too easy to sneer at a superficial glance at the work of those who've gone before. There was a time when I thought Jung was pretty wacked, with his giving mythological caricatures such a powerful place in the mind. How simplistic!

Like all superlative work, it only looks simple from a distance. The closer you get to it, the more mind-glowingly complex, subtle and profound it becomes.

I meant to write "mind-blowingly" there, but, for once, autocorrect may have gotten it right.

Sunday, September 25, 2011

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.

Wednesday, September 14, 2011

Considering the end: a new beginning

Mortality is tricky. We're all going to go sometime, but we are hardwired to avoid the very thought of death. And so we should be.

However, when my loved ones die, my life (so far) continues – though significantly changed. Death has ripple effects on the living. This is why we have wills, wakes, and difficult conversations with the elderly and infirm.

My dad was a financial planner when he died. Here I am, 45, with a horrible condition and a little bit of property... As a financial planner's daughter, I know perfectly well that the responsible thing to do is sit down and make a will, living will, and any other terminal documents I need. So I've started that process.

The old man would be proud!


Naturally, the first thing people ask is, in sweetly worried tones, "Are you okay?"

Having begun this process, I'm much better. It reassures me to know that certain important things will be said, certain horrible things will be avoided, and -- though there's no getting around the fact that bereavement sucks -- there will be more love and comfort in those ripples than there would be otherwise.


It also makes me think in terms beyond myself. Legislation around CRPS is almost nonexistent, because people don't think of it as terminal. However, as I remarked in my bio-blog, the diseases it causes most certainly are.

Sound familiar? Anyone here remember the health care terminology changes in the '90s? (Read the bio-blog for more hints.)

I can do something very important with my death (hopefully many years off) -– I can make sure it's properly attributed. No disease without a body count is ever taken seriously, and it's time to start counting bodies with this horrible disease.

Personally, I have been struggling with a panicky fear of mortality because of this disease: each time I have a flareup, my body is never quite the same again; each time I have a lasting attack of the stupids, I have no idea if I will get my brain back; my heart is becoming more irregular. Barring a miracle or an accident, I'm facing a rotten time. With this disease, I look at the end, and all I can do is scream. I hope I have hidden it well!

However, the thought of this final gift -- proper attribution, a ripple of awareness, the hope of better care for my compatriots -- this tiny thing, this little spark, has had a tremendous effect: I feel the force of my life again.


It's true: when you're skirting paradox, you're close to the naked truth.

Contemplating the end with wide-open eyes, returns my thoughts to getting more juice out of life. There's a lot of it left, all things considered. My end will not be in vain, and with that in mind, the time until then seems much more promising.


Links:
Bioblog about myelin & attribution
"Nothing you do is in vain"

Friday, September 9, 2011

A gift to share

I had the pleasure and privilege of speaking with Dr. Adams, who (among other things) teaches clinical at UCSF Medical School. He provided me with a brilliant overview of the recent history of public health.

"Remember [the federally mandated public health targets called] Healthy People 2000 and Healthy People 2010? We missed those goals by miles. We don't even _have_ a target program now. The next one could just be: Breathe. And I'm not too sure we could even hit that!"

He kept me spellbound for half an hour. I don't think I got a word in edgeways, but he must have liked the quality of my listening, because he gave me this book off his shelf as a gift:

He said, "Be calm when you read it. Sit down, breathe, and take it easy." Caveat emptor.

This doctor uses the (numerous!) expensive letters after his name for something besides paying the mortgage ... He and his posse sent a copy of this book to President Obama, with a cover letter explaining the devastating consequences of a profit-driven health care system. 

They heard back from a medical advisor: the President put the book in his Presidential Library, but the advisor had to state that the for-profit industries had their influence so well laid in that, if the President breathed a word about single-payor care, it had been made clear to the White House that he would be abandoned by both sides of the aisle.

Abandoned. Completely. For standing up for the American people. The same American people who let those pikers into Capitol Hill in the first place.

You've been bought & sold. We all have.  Weren't you looking? I'm not sure I was. 

The industries speak for us because we haven't spoken up enough for ourselves. Politicians are nervous, ego-driven creatures desperate for a good image, and we've let the moonshiners polish their images -- and their apples -- while we bitch about the rent. 

The rent matters. Lots. Sadly, signing Internet petitions does not. 

Is it too late?

Well, you're still breathing, aren't you? So am I. Emigrated yet? Me neither. Guess it's not too late, then. 

Be heard, unfiltered. Call. Fax. Write. Put a stamp on it. Letters matter. Phone calls matter. These represent a big hurdle in people's minds, and politicians know it. They weight them accordingly. 
(http://www.usa.gov/usa/Contact/Elected)

Paper, three sentences, stamp and envelope are not really that hard to do ... just slightly strange to think about. Try it & you'll see what I mean. 
(http://www.usa.gov/usa/Contact/Elected)

If you have expensive letters after your name, this is an excellent way to get more mileage out of them. Your words are weighted more heavily still. 
(http://www.usa.gov/usa/Contact/Elected)

Let your politicians feel insecure about their policies, where they don't serve you or those you care about. Let them feel watched.  Let them get nervous and worry about their hair; it means they're procrastinating about changing their minds, even as their minds are changing. 
(http://www.usa.gov/usa/Contact/Elected)

Call. Write. Use stamps. Fax. Be seen. Be heard. Vote. And monitor voting. 

It's surprisingly little trouble after all. 
... http://www.usa.gov/usa/Contact/Elected

To find your reps and congress-critters, choose the category and plug in your zip code here: 
http://www.usa.gov/usa/Contact/Elected

Monday, August 29, 2011

Humanity, in spite of ourselves

Needed to change my flight in order to recover from Irene before coping with a transcontinental dose of high-altitude radiation, cramping & low-grade hypoxia. On the advice of my lovely travel agent at Pacific Harbor Travel, I called JetBlue directly: hi, I'm disabled, I have to change my flight due to Irene.

Unfortunately I missed their Irene fee waiver by one day. Okay, distasteful but I can respect their limit.

Seating was a problem. The staffer was very sweet and very insistent about having no window seats ... but on a later flight, there is one on the aisle.

After being straight-faced and literal about my limitations, then hearing her say "aisle seat" with a straight face, I sorta gave up. I confessed, "I would rather be BEATEN with a CATTLE PROD than sit in an aisle seat."

I didn't shout, I really didn't. But I know there was a certain amount of top-spin on the words, because the person in front of me on the bus flinched.

Things changed. I won't use her words because they were ignorant and would sound too harsh without the audible melting that happened, but she found me exactly the seat I'd have ordered if I had the whole cattlecar to choose from.

I hate bitching about this condition and I don't like to be so explicit about what it does to me, but sometimes that's what it takes. So this evening I'll raise a glass (or mug) to, "Humanity -- in spite of ourselves."

Friday, August 19, 2011

L.O.B.E.: Lung-Opening Buoyancy Exercise

I floated in the hot springs, like a wallowing marshmallow: inhale to come up, exhale to go down and sink beneath the surface. Lift chin, inhaling through fish lips to lift myself up, wobbling; exhale, slowly descend... to one side.

It had been a few years since I had done this, but something wasn't right. I was rocking like a drunk.

Inhale, slopping over to the left; inhale further, watch my middle rise, then my belly. Exhale, and sink piecemeal, in chunks.

This was just weird.

I got up, reached for the brains I had left by the side of the pool, and dumped them back into my head.

Now lie back... breathe... whoa, definitely off-balance. Flopping over onto my left side, I grabbed the side of the pool as realization struck.

I was only using my lungs one lobe at a time.

Yeah, weird. I didn't know it was possible.

Some of you know that the right bronchus is supposed to be more accessible, but it was the left lower lobe that inflated first. The right side inflated second, middle then bottom. Before the left upper lobe. My right upper lobe had simply forgotten how to expand, and took some prodding.

Inhale, slop, wobble; exhale, stagger, bump. The water let me know exactly how well -- or not -- I was doing.

It was a busy morning, relearning how to use my lungs, rocking like a sea serpent surfing for prey. I spent as little time as possible reflecting on how a once-athletic health nut who liked to meditate, could forget how to breathe.

In a hectic and pun-lathered conversation this afternoon, we decided that "lobing" was a good word to describe working on those skills you really should've mastered long ago, preferably with a built-in indicator that not even the terminally clueless could miss.

I'll spare you the wordplay, except that I'm a little worried about the Loberlords.

Next, I'll try to go for a walk... but that's far more complicated.

Maybe I'll just sit here and breathe.

Thursday, August 11, 2011

Fair Share Challenge: what taxes do for me

This budget horror-show has given us a lot to think about. The role of taxes in our country is probably the biggest, sorest issue of them all right now.

"Why should we pay taxes? That money is ours – we earned it!"I heard this from a member of the armed services who's quite intelligent.   

Out of respect and consideration for my impassioned, but perhaps distracted, old friend, I wanted to find a non-partisan, preferably non-political way to discuss the point of taxation. So let's simply see how that money gets used in real life.

Everything in bold-face type is heavily subsidized or completely funded by government money – local or federal, for better or worse. Do any of these tax-funded things affect you?

I take pain medicine which was funded by government grants to develop. My treatment was developed by government grantees. It keeps me alive and functional, so I can write things like this. Is that a good use of taxpayer dollars (printed at the Mint and monitored at the Federal Reserve)?

Read on and let's all decide.

My nephews go to school by bus, when their mother can't take them. She has just received her teaching credentials, so she will soon be working as a teacher. Their father, my brother, is a Marine. He runs a base where he supervises the training of National Reservists of the Army, Marines, and Air Force.  He recently visited a friend in the VA hospital.  All of his children were born in military hospitals.

Since they all run on a tight schedule, they use their car a lot. It uses gasoline; they used to have one that ran on diesel; the next one may be an electric hybrid. To cover short distances, they use local roads. To cover long distances, they use highways. They're careful of road crews, and drive sensibly over bridges and through tunnels (I hope.) Me, I mostly use the bus and train.

My brother and his wife pull over to make room for fire trucks, police cars and ambulances. (Many ambulance systems have been privatized; however, they still work on the basis of city or county contracts that are funded by taxes.)

They eat on the healthy side of a normal American diet. With three growing boys in the house, they eat plenty of wheat and corn-based products, such as bread for sandwiches, cereal, pasta, and so on. They're allowed occasional treats, including candy and soda sweetened with corn or cane sugar.  I bet they get their beef from the grocery store, so you know it was raised on soy and corn, and was probably fed antibiotics.  Those boys are pure dynamite anyway.

My dear old friend David used to work at the library. He still volunteers there. His pension keeps him in a simple but comfortable style of life. He likes to attend church, though most of his real friends are out and about on the city sidewalks.  He keeps in touch with a friend who has been in the mental hospital, and their conversations help her stay on track.

When my Dad died suddenly, I attended support groups at the local Hospice.  I used to be a nurse, working in hospitals and home care.  In the ER we took care of prison inmates when they got hurt. 

I ran out of work at one point and wound up on food stamps and welfare.  I will never forget that they kept me alive until I could find work again.  Since then, I haven't really minded paying my fair share of taxes.  

During the last election cycle, I saw an angry woman on TV waving a sign that read, "Get your government hands off my Medicare!"  I hope she understands things better now. 

This has given me a lot to think about.  

And, fellow bloggers, here's an invitation/challenge: how much better can you write on this theme?  How much do you really know about government support for the things you use every single day that make your life do-able?  How does this pertain to your work, paycheck, interests, family – whatever really matters?

I'd love it if you'd share links here and let me know.

Wednesday, July 13, 2011

Beyond courage & compassion

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?


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.