Vocation and purpose (illustrated)

I’ve spoken of myself as a writer for ages, and made a decent living writing professionally (about software) for several years — until I got disabled as a consequence of the long hours.

Look a little more closely…

My inward life (narrative, spirit, meaning) and outward life (events, tasks, purpose) have been approaching each other at an increasing rate, and the transparency this creates causes some re-evaluation of publicly-held assumptions like what I am. For instance, is being a writer my core occupation — my “real” job, where “real” means “true, valid, essential”?

It dawned on me that writing, for all its wry, playful and muscular delight, 

is, for me, a means to an end. Here’s why.

I’ve considered myself a writer since I was 10 years old. My mother gave me a blank book to write my poems and stories in, when I was 11 years old — a step up from my plethora of scoliotoc spiral-bound notebooks — so at that point I was clearly committed.

But my earliest coherent memories are of comforting her, of trying to rescue baby birds, of helping to wash and change my baby brother.

So there’s something I’ve been doing longer than writing.

As an adolescent, I probably spent more time rescuing cats, dogs and (more successfully this time) birds than I did putting words down on paper.

Writing is a joy, and it’s a tool. I know I wrote the right thing when someone says, “That really cleared things up for me,” or more transcendently, “This helped me so much.”

I write to heal. First, I wrote to heal myself, but now, it’s a way of doing a bit of good in the world outside my own head.

As I remarked to a friend of mine, some people go into the healing professions because they like the feeling of power it gives them to help others.

(Many of them are very good at their challenging jobs, so I’m not inclined to dis their motivations.)

Some of us go into it because we like to help people find their strength and set themselves free.

I used to enjoy some of that power, though I believe I did a good job of maintaining perspective in the face of the quite extraordinary impact an emergency nurse can have. 

Of course, what I really loved about that job was the scope and depth of challenge, and the instant feedback. Never a dull moment, and I learned a lot.

Now I have lost what taste I had for power over others, even benevolent power. But I have always loved helping people find their strength and watching them set themselves free.

These days, when I think of anything worth doing (after taking care of myself), that’s what it comes back to: helping people find their own strength, and watching them set themselves free.

Writing lets me do that in absentia, while I’m unconscious, perhaps even long after I’m gone. If I do my job well, others will be reminded of their own strength, or find the clue they need to set themselves free.

So, I’m a healer… who writes.

At least I have better dress sense and less disturbing kibitzers than this guy.

I hope it helps.

(revised 12 March 2013, to add images and improve clarity)
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Mendo Acid Trip

Language tends to reflect upbringing, or possibly genetics, or maybe both. Anyway, there is often a familial component. (I’ll let better-paid heads argue about why.)

Case in point — my older brother’s riff on my county’s name might have a familiar feel, although only he could possibly have come up with this imagery:

‘I can’t decide if ‘mendocino’ sounds like an antacid (“Mendocino, now in new cherry flavour…”), or a garment of Mexican origin (“and now just add a chunky brown leather belt to offset the vibrant shade of your mendocino…”), and indeed maybe are old chinos with violent coloured patchwork on them….

cropped from a photo by Midori

‘Why mendo-acid-vibrant coloured-cino?’

I had to read this through 3 times before I could keep my seat long enough to respond without falling off again.

The answer is far too prosaic to make a suitable reply, but frankly, that’s a tough act to follow…

So, why here?

Hills.
Trees.
Rocks.
Air.

Gives me whiplash to read this far.

Antacid-washed chinos might be more entertaining, but I had a deep need for a wooded granite ridge to park my frazzled bones upon, while preparing for the Healing Tour — whatever the heck that turns out to be.

My timing is good. Everything is bursting into bloom:

 Cherry-flavored patchwork chinos would look pretty good sprawled under that tree. Mind you, anything would, including that dusty ol’ truck.

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Pride of pwnership

I transferred my prescription to a new pharmacy today. When I was asked about existing conditions, I said, “CRPS – Complex Regional Pain Syndrome – and fibromyalgia.” My tone, I realized, was firm and proud.
At first, that freaked me out. Proud? To have CRPS? Just how far have I come to identify myself with this disease? 
It bothered me, but not as much as it should have. I put it on a back burner to mull for a bit.
I did some paperwork and watched a movie: Mulan, and I don’t think that’s irrelevant.
I realized that it’s not having CRPS and fibromyalgia that I’m proud of. It’s having CRPS and fibromyalgia, and still being alive – still hugely engaged – still moving to a new place, still sorting out my paperwork, still finding a new adventure, and still organizing that adventure even as it unfolds. 
I identify with whatever it took to develop the nerve, courage, and modicum of grace that got me this far. I identify with what it took to discover those who kept me alive, and made that life worth living. I identify with having gotten to the point where the things that I think about, much of the time, have nothing to do with pain, frailty, and other losses. I have this ridiculously awful disease, but that’s not where my life is. 
I have CRPS, but the verb “to have” has a number of meanings: to possess, to be in relationship to, to be required, to have a duty or need, and so on. If you’ve ever done any translation, you know what a headache the verb “to have” can be. 
In this case, it might just mean that I own the disease, in the way that hackers mean when they spell “own” with a P: pwn. To pwn something (a device, troublesome software, the CIA mainframe) is to figure out how to dominate it, because you know exactly how to make it play ball — whether that’s legal, approved, or otherwise. 
As it happens, that’s pretty much what I intend to do with CRPS.
I’m okay with being proud about that.
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Tern to the present

This is the third major purge of my possessions in 7 years. 

The first time, I decided that anything that I was keeping for sentimental value had to trigger only good feelings; I’d keep nothing that made me unhappy.

The second time, I moved onto the boat, so everything had to have at least two uses.

Now, I’m eliminating everything that isn’t easy to handle, as well as being useful and pleasing.

That meme is extending into the realm of perception. Images and events that used to trigger emotional cascades, because of memories and associations, are finally losing their sickening zap. Associations fall away, and images and events stand out  in simple splendor as just what they are: unlayered, transient, colorful, done.

For instance, I used to hate terns, because their cry sounds exactly like a drowning cat. I blame their awful caw for my not being aware that my cat was in jeopardy when he died. For a couple years now, I’ve gotten snarly at tern-time, when they come here to breed. But, with this shift in my perspective, a tern is just a tern. My excellent companion was still an excellent companion — and, obviously, a kindred spirit.

A tern is not about the past or the future. It’s here now. It’s just that, at this moment, one is floating past with its strange sharp wings twinkling; then it hovers and wiggles for a moment; twists, plunges, spears the water; bobs up again, looking smug, with a little fish in its mouth; takes off and disappears.

Usually, there is no fish. But right now, there goes a pleased tern, enjoying the moment.

It’s just a tern, and it’s doing tern things in a ternish kind of way. Tomorrow it will do tern stuff in a slightly different, but still ternish way. Doesn’t matter. It’s just a tern — nothing more nor less.

There is no furry friend dying alone.

There is just a bird.

Gorgeous photo: Geert Wilders at http://www.freerepublic.com/focus/f-chat/2426290/posts

And I want credit for resisting the obvious urge to make a crack about taking a tern for the worse.

Oops…

Anyway.

I stumbled across a quote that seemed shiningly appropriate:

“To live here and now, you must train yourself: in the seen there will be just the seen, in the heard just the heard, in the sensed just the sensed, in the thought just the thought. That is the end of  sorrow.” – Gautama Buddha

I don’t know about the end of sorrow, but it’s true that it is far easier to manage my moods, notice my body’s signals, and do what I need to do, when I keep things in this charmingly simple, deceptively rigorous perspective.

It’s rigorous because it goes against all my socialization about the importance of hair-trigger reactions and emotional responses: Am I an ice-queen? Don’t I care about things? Aren’t I human? What’s wrong with me?

I’ve gotten all of those remarks in my time, when I strove for calm in former years — especially from mere acquaintances and random strangers, which always shocked me. How I, and those around me, survived my 13th-23rd years is unimaginable at this distance of time and self-certainty, but falling into the reactivity trap was one good way not to get verbally assaulted.

One advantage of being plumply middle-aged is that, for one thing, people watch you less; for another, a degree of equanimity seems to be less … annoying.


Exqueeze me?!?

I’ve had it up to here with emotional reactions. CRPS is a roller coaster par excellence, for emotional reactions. I’m quite done, thank you, and I’d like to get off now.

Actually, I think I just did.

And now, a tern is just a tern. For better … or worse.

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New glasses, renewed perspective

I used to have remarkably acute vision (20/15, if you’re curious) and exceptional color perception to go with it. It used to make me happy just to look. Turning my sweet eagle’s eyes on a treetop and picking out each leaf really felt good. Noticing the individual speckles on a falcon overhead made my heart sing.

I liked to see.

That has been changing for some years; I remember when I could no longer see the star at the center of the sparkle in the night sky, for instance. With more pressing matters (food, rent, keeping CRPS under control) I’ve adapted and adapted and adapted to my worsening vision, using pattern-matching skills (another 5-star category in my old brain) to replace actual perception.

It is an excellent adaptation to use, leveraging a primitive part of the brain that is very hard to screw up. However, it does have its limits.

My housemate, the excellent R. (I avoid using personal names without permission), finally confessed that my driving scared him because he really thought I couldn’t see well enough to manage it safely. He worried even more when he wasn’t in the car. That made me think.

And then I scared myself today on the road, and decided that was the last time. I called the ocular shop and they squeezed me in at 4 o’clock on a Sunday.

My visual acuity had deteriorated from 20/15 to 20/80.

Some things should not be adapted to.

I’m now a member of the four-eyed fraternity.

I think my nose was red because I almost cried.

I wear my polycarbonate steel-rimmed cheaters as if they were portals into heaven, because they are. I spent an hour and a half simply strolling around, agog, with the whole world smacking me squarely in the eyeballs.

First thing I noticed is, everything has an edge. I had forgotten that; more precisely, I had taken it so much for granted when I could see, that I didn’t notice when it faded from view. It’s like the resolution on the world is turned up to infinity. (…It is, in case you’re wondering.)

The next humdinger was the warping effect. Looking through the lenses is hunky-dory, but it gets a bit weird at the very edges, and beyond the rims there is no correction at all — the world is a palid mess, off to the sides and around the bottom, right where my feet and hands are most of the time.

I twisted my head slowly around, expecting wa-wa noises and doppler effects to accompany the dizzying twist of light around the margins of my sight.

I stumbled until I figured out that my feet were just where I’d left them, and I’d have to treat them just the same as I did before the glasses.

I was sure the pavement was breathing.

I’ve never taken hallucinogens (apart from exhaustion, surgery and chronic pain). I have nothing against them, I just felt no need to. There might be a reason why: all it takes is a pair of new glasses and I’m nearly there.

I went down to the beach and saw two boys in red shirts. I was riveted. My ocular nerve itself was stained, the color was so intense. Did you know red is the color of healthy, living blood? Red so glorious and alive that it almost quivered was all over street signs, cars, carts — shirts.

When I noticed that, I noticed that all the colors were darker, richer, more alive. The dim shapes of the SF Peninsula across the Bay were purple, dark steel and deep amber. I had no idea. It was spectacular, in a tasteful and slightly intimidating palette.

Then the shapes and colors came together for me as I looked up at the sky. The clouds didn’t just drift stately by, they floated in a tender dance of radiant whites and silvers, caressing the air with fingertips trailing Chantilly lace and oxygen.

As I saw that, I realized that the movement of things had taken on new poetry. Palm trees shifted in the breeze with the distracted grace of mermaids playing with their hair. Every frond was alive and had a finger of wind wrapped around it. Who knew?

I walked until I could bear to focus on a path, could do head checks without headspins, and generally felt able to drive more safely. It was still a stunning trip home, and I got here just as the sun touched the top of the Marin Headlands and dropped out of sight, staining the sky with farewell colors. I said thanks to it, right out loud.

I’m told it will take another day to adapt, and by then I’ll know what my world will look like from now on. The hallucinatory wonder will probably be replaced by something I can talk about in public (“Didja see that? Looked like the Goodyear blimp!”) but, from my personal history as a visual junkie of ocular delight, this intense thrill of LOOKING will probably be mine again forever — or for as long as I keep my prescription up to date.

I’m pretty motivated. This cuts into my car-buying budget, but I do think it’s worth it. Being able to survive driving is not a bad idea at all.

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Friends & other forms of support

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

Post on one of my CRPS groups: “Everything that happens to me is part of the plan for my good.”

The responses to this seemed to come through a blissed-out narcotic haze. I’m afraid I administered the verbal Narcan. Surprised? 🙂

I’ve counseled too many rape victims and abuse survivors, and treated far too many accident victims, to hold the belief that bad things happen to us as part of a greater plan — let alone that it’s for our own good.

Bad things happen, full stop. As living humans, we take our chances in the world; sometimes it works out for us, sometimes it doesn’t.

If we grow and learn and become stronger, then it’s because of how we chose to deal with it and what we could bring to bear — not because some faceless force thought it would be interesting and valuable to cause us so much agony, because — of all counter-logical reasons — it loves us.

I aim to find a way to become free of CRPS. Nevertheless, I perceive that the skills, the inward peace, the strength, the poise I’ve developed in coping with these unimaginable challenges over so many years, have certainly made me something I never would’ve reached without it.

I thoroughly honor the brilliance, creativity and strength that my comrades with CRPS bring to their lives. It’s breathtaking to belong to such a select group — although the cost of membership is a little high.

It’s a special disease: agonizing, rare, destructive, poorly researched, underfunded, extremely long-lasting, and — most special of all — widely believed to be hysterical in nature. The challenges it poses are distinctive and seemingly endless.

After eight years with it, I’m proud of myself and I even care about myself, even though I can accomplish so much less than before. 8 1/2 years ago, I felt that I had to earn my right to even breathe.

The credit for all that growth goes to innate qualities, my excellent friends (some of whom I’m related to), and a handful of gifted clinicians.

The causal lines are very clear: hard work, relentless study, determination, safe places to stay, loving words, wise ideas, needed gifts, perfect loans, valid diagnoses, key treatments — these are what gave me strength and let me grow and learn.

It’s been painstakingly pointed out to me that I have the friends I’ve earned. I’m not sure any mortal deserves such friends as mine, but I’m glad of them all the same.

Cold chronic CRPS and all that goes with it… Part of a plan? What plan? Whose bloody plan? I want the bastard’s address! And so does my army.

Plan is a four letter word.

I will never forget the days and nights and years of desperate prayer, with nothing but silence coming back. The goodness, the help, the peace, these all came from other people and my own work. The natural results of many extraordinary efforts.

Inflicting this kind of agony and loss “for your own good” would be absolutely unthinkable for a conscious, caring being of any kind. Moreover, to have the power of withholding destruction and pain, and to fail to do so, is quintessentially evil.

I’m a theist, but I don’t see deity as a psychopathic abuser — as something that would clobber me for the fun of it, or be persuaded to stop the beating if I figured out the right things to say.

Moreover, I can really see why people would be atheists. Without quantum physics to make sense of things, deity is an indefensible concept. With quantum physics, I’m certain of three things:

We ARE a permanent part of something greater. It IS aware, omniscient, and ubiquitous.

Its job is not to screw things up, but to notice, communicate, and keep flowing. That’s it.

Nothing else agrees with the evidence.

It’s not intrusive, manipulative or evil. It can’t be, because it doesn’t possess the mechanisms.

Not to kill the buzz or anything 🙂

Whatever belief system works for you, use it!  Just remember, there’s more than one path to personal salvation — or whatever your metaphor is — but very few of them get discussed, because of the ancient hegemony that a few groups have held over religious and spiritual expression. Let’s open the world up a bit.

All too often, the power of human connection is mentioned only as an afterthought. In practice, I’ve found nothing more important when the chips are down.

I no longer pray for help. I ask.

Because beliefs vary, it’s important to give a voice to those who find the traditional idea of our helpless subjection to a greater will to be the opposite of comforting. We don’t get much airtime, but we still find peace, strength and grace.

Just not in that particular idea. Thank God.

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Refocus on what works: In memoriam

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

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

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

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

But today, they are biting deep.

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

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

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

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

It means the studies need to be done. Period.

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

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

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

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

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

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

I do not consent to the deaths of my friends.

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

Let’s find a real way out.

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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 Miró, 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.

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Pain Manifesto

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

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

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

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

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

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

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

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

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

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

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