I’m sorry, Dave. I’m afraid I can’t do that.

Interesting metaphor for this, um, ratfink disease.

Interviewer:
HAL, you have an enormous responsibility on this mission, in many ways perhaps the greatest responsibility of any single mission element. You’re the brain and central nervous system of the ship…

Poole:
Unfortunately, that sounds a little like famous last words.

I had the pleasure of explaining CRPS to a doctor who isn’t mine, who really wanted to understand. After listening to me for 15 minutes nonstop, he summarized it perfectly.

He said, “It’s a bit like HAL, in 2001.”

I asked if I could borrow that.

I’ve culled movie quotes off the web and my CRPS compatriots can say how breathtakingly parallel they are. In no particular order:

Dr. Frank Poole:
… That would pretty well wrap it up as far as HAL was concerned, wouldn’t it?
Dave Bowman:
Well, we’d be in very serious trouble.
Frank Poole:
We would, wouldn’t we. What the hell could we do?
Dave Bowman: [sigh]
Well, we wouldn’t have too many alternatives.
Frank Poole:
I don’t think we’d have any alternatives. There isn’t a single aspect of ship operations that isn’t under his control.

And that, ladies and gentlemen, is the central nervous system in a nutshell.

Dave Bowman:
All right, HAL; I’ll go in through the emergency airlock.
HAL:
Without your space helmet, Dave, you’re going to find that rather difficult.
Dave Bowman:
HAL, I won’t argue with you any more! Open the doors!
HAL:
Dave, this conversation can serve no purpose anymore. Goodbye.

We’ve all had that happen!

HAL:
Just what do you think you’re doing, Dave?

Um, trying to survive?

[Regarding an apparent problem which HAL itself falsified]
HAL:
It can only be attributable to human error.

Swine. YOU did this, CRPS!

HAL:
I know I’ve made some very poor decisions recently, but I can give you my complete assurance that my work will be back to normal. I’ve still got the greatest enthusiasm and confidence in the mission. And I want to help you.

This reminds me of the “you have CRPS because you think wrong” school of thought. Right… thanks for the help… next time, suck the oxygen out of my atmosphere; that’d be a real help.

Dave Bowman:
Hello, HAL. Do you read me, HAL?
HAL:
Affirmative, Dave. I read you.
Dave Bowman:
Open the pod bay doors, HAL.
HAL:
I’m sorry, Dave. I’m afraid I can’t do that.

Because sometimes this system seems to get input, but it just won’t generate any output.

On providers trying to assess from outside:

Mission Controller:
X-ray delta one, this is Mission Control. Roger your two-zero-one-three. Sorry you fellows are having a bit of trouble. We are reviewing telemetric information in our mission simulator and will advise.

On trying different treatments:

Dr. Frank Poole:
Let’s see, king… anyway, Queen takes Pawn. Okay.
HAL:
Bishop takes Knight’s Pawn.
Frank Poole:
Huh, lousy move. Um, Rook to King 1.
HAL:
I’m sorry, Frank, I think you missed it. Queen to Bishop 3, Bishop takes Queen, Knight takes Bishop. Mate.
Frank Poole:
Huh. Yeah, it looks like you’re right. I resign.
HAL:
Thank you for a very enjoyable game.
Frank Poole:
Yeah, thank you.

Yeah, thank you. Sooooooo much.
me-fingers-2up

This movie says everything you need to know about what it takes to deal with this disease:

  • It’s hard. Breathtakingly hard.
  • We don’t really know where it came from, and we really don’t understand why.
  • It’s crazy, and it does its best to make us crazy — and those around us.
  • It takes away more than we knew we had to lose.
  • We have to out-think it, even though it seems to stay 3 steps ahead of us.
  • Persistence — unvarnished, absolute, bloody-minded persistence — is key. Even when you feel you can’t, take a breath and make the next move. Keep working.
  • It seems impossible. It’s a harrowing thing to face, and has killed so many of us, in different ways.
  • It sabotages our efforts to improve things.
  • It’s worse than we could have imagined.

It really is like HAL.

So … Let’s remember who won.

Now a bit of Youtube for dessert, and a hopeful image for all in search of remission. Let’s pop those modules, one by one.

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Threads on the loom: bereavement and CRPS

When I was 4, we moved to New Jersey from Turkey, as my parents thought their kids should get a feel for their native land. Our new backfence neighbors were a large and lovely family from Virginia, so I learned to spell “dog” both with and without a “w” by the time I was six.

The youngest daughter got me going on poetry. We read A. A. Milne and Louis Untermeyer in between dips in the kiddie pool. Her Mom, Mrs P, gave me drawing lessons when I was about 9.

My Mom was very maternal in her genuine enthusiasm for all my art. (I found that frustrating, because I knew it could be better and had no idea how to make it so.)

Mrs P did not have that problem with me… Her key edicts make reasonable rules for living: For one thing, I should not draw the whole scene until I was capable enough (don’t let things overwhelm you.) I had to pick the parts that were most important or that caught my eye, keep it simple, and do it right – or else there’d be erasing, and, if you erase too much, the surface gets harder to work on. (Isn’t that the truth.)

She was also good for the reality check. She quickly eliminated my grade-school habit of drawing red apples and brown trees, but made me look at a real apple and draw that; hold my colored pencils up to the tree and see which colors really matched.

See what’s really there, not what I expect or what I’ve been told things should look like.

The biggest note of approval I ever got from her was, “not bad.” By the time I was 6 weeks in, I was able to collect a “not bad” or two almost every lesson, which pleased me no end.

CRPS took away the link between brain and hand that let me make art, but one thing really stuck with me …

Why settle for good or even great, when you could aim for making it absolutely right?

“Good” and “great” are about others’ opinions, but “absolutely right” is something ageless that stands on its own.

Later that year, our parents sat us down to have a family meeting. Dad had been offered a job in Cairo, Egypt. He wanted to know what we thought about moving to Egypt in a few months. Mom and Dad discussed pros (long list) and cons (short list.) Older Brother asked about schooling (very good) and the social scene (unknown, but probably interesting.) Younger Brother piped up with characteristic curiosity and adaptability.

It seemed like a done deal, but I was wrong. Dad looked at me and said, “What do you think, Isy?” I must have looked surprised. He said, “You have a good sense of people. I don’t want to finalize this decision until I hear what you think it’ll do to us, either way.”

Should I be nice? My first instinct was to be nice, to stick up for the shabby underdog (in this case, New Jersey), to do what I thought was expected of me … but it stuck in my craw. Perhaps Mrs P’s lessons on seeing things as they really are had sunk in.
I said, quite honestly, that New Jersey was not being good for any of us (except maybe Younger Brother) and that Egypt would be new and interesting. We all liked new and interesting. So, as far as I could see, it was hard to see a downside to going, and hard to see an upside to staying.

So we went. And I got an early lesson in the value of calling it like I see it.

Our vacations were dreamlike, because we were close to some of the most striking sights in the world:

  • El Alamein and the remains of fallen soldiers from 5 continents;
  • The Red Sea, when it was still the most outstandingly varied and brilliant source of sea life on Earth (it’s still good in spots, as that video shows);
  • The southwest coast of Turkey when Bodrum (formerly known as Halicarnassus) was still a fishing town and their medieval castle the tallest building in it;
  • And, of course, the remains of roughly 8,000 years of Egyptian history from before the Old Kingdom, down through all those Rameses, Greek absorption, Roman annexation, Medieval flowering and Mameluk co-optation, the French and British tradeoffs, modernization as the royal family fell and the secular dictatorship accepted Nazi help to fend off the British return, the flowering of art and writing as the world wars faded and the newly mobile masses could collect like runoff from the tortured continent to the north. The Ancient history is only the beginning…

During the day, I learned about path-finding, history, and sea life, and in the evenings my mother read to us from local literature such as the Odyssey, the Iliad, My Family and Other Animals, even A Connecticut Yankee in King Arthur’s Court (the sharpest satire on jingoism and culture shock ever written.)

My parents had a gift for making the most of teachable moments.

The move turned out to be an excellent choice for all of us: Older Brother became a track star on the international circuit, I found a crop of kindred spirits, Younger Brother’s precocious historicity kept growing, Mom became a successful working photographer (and, as it happened, a role model of working womanhood for every intelligent female friend I had), and Dad got paid to help people – then towns – then governments get better and better at handling their money and improving their chances for a sustainable future.

The day I drafted this is the 38th anniversary of that move.

Dad was great at practical stuff. He genuinely liked humans, despite being such a historian. He often said that people are like table wine. Each one is a blend of different strains: good and bad, clever and foolish, creative and not, good with money and profligate, nice and otherwise… and each person’s blend is a little bit different. If you can accept each of them as the blend they are, and not try to change them – into a different blend, or even into beer, for instance – then you could really come to appreciate the variety that this world has to offer.

People are what they are. Accepting that makes for better connections.

The first time he taught me to drive was when we were on vacation in France, which was cheaper to get to than the US. We had rented a historical farmhouse that was about to become a gîte (at which point the price would go up), so we got all the benefits – a fireplace Younger Brother could stand up in, window sills two feet thick to sit on, a lush yard going down to a creek at the bottom with a moat up one side of the yard, a line of stately chestnut trees, twittering birds, fresh eggs and raw milk from the neighbor – for considerably less than we should have paid.

The rental car looked like it came straight out of a matchbox, but it was a real, rattly little French Renault. Dad sat in the passenger seat and directed me to the driver’s seat. He told me about the brake, the gas and clutch, the gear shift, the friction point, and how it all came together. I got the friction point coordinated and tested it a few times.

Then he said, “Okay, here we go.” I checked the friction point again and then stopped. He said, “No, I want you to go. Go ahead and drive across the yard.”

Oh, okay then. I can do this.

I grabbed the wheel tightly, engaged the gear, and eased past the friction point.

The car snorted briefly, pawed the ground, took the bit firmly between its teeth, and off it went. Or so it seemed to me.

The car charged off the gravel, kicking it up behind. It careened over the lush yard, carrying us past (fortunately) the huge stone house. It rocked and bounced off of molehills, scoring crazy tracks through the soft green earth.

I noticed my Dad was yelling, but he never yelled, so that was confusing. I didn’t understand a word of it, anyway.

Completely out of its metallic mind, the car charged past the trees, heading straight for the neatly-dug moat.

I was helpless to stop it. My own involvement had escaped my awareness completely. I simply hung onto the steering wheel for dear life, eyes wider than ever, completely absent to the fact that MY FOOT WAS ON THE GAS.

All at once, Dad finally got his full-grown leg around the gear shift and kicked my foot off the gas pedal and stamped on the brake in one astoundingly swift move.

The car sputtered, died, rocked to a standstill.

Its front wheels were on the lip of the moat. Below us, three feet of water and unimaginable depths of sticky mud glittered silently.

Little clods of earth trickled out from under the front tires and dropped in, stirring tiny clouds as each one descended through the water and into the mud.

All was quiet. Even the birds were too shocked to peep.

I sat there, frozen, hands locked on the wheel. I was alive. And dry. It was shocking.

I didn’t dare to move.

I heard Dad take a breath, and then take another. I felt, even with my head still turned away, two completely different speeches considered, then thrown away before he even made a sound.

I turned to see what he’d finally settle on, and whether it would finally involve a pair of hands wrapped around my throat – something I’d never seen him do yet, but you never knew, especially after a performance like that.

A pair of blue lasers drilled me to my seat.

Very quietly, very clearly, very firmly, he said, pronouncing each word distinctly:

“When what you’re doing doesn’t work… Try. Something. Different.”

Words to live by.

It was years until I was anywhere as green as Bordeaux. I lived along the Mohawk Trail in my 20’s. My excellent friend Paul was the hub of a wide circle of friends who, even if we couldn’t always stand each other individually, felt strangely as if we were still part of the same tribe: Paul’s tribe – or, as we called it at the time (such was his gift for invisible influence) The Tribe.

Paul was a master of appreciating people just as they were – even if that was not necessarily what the person in question wanted to be. He was the first to say, in assured tones,

“You’ll figure it out, Bella.”

He wasn’t kidding, either. He had complete faith in me, in spite of the evidence. I don’t know why. It sure helped, though.
My Dad died in early February 1999 while swimming in Egypt. I still remember the way the word “No” echoed off the walls of my little room at 4:08 am, when I got the call. The second flight on my 3-legged trip back East was overbooked, and I was going to get bumped.

I went up to the desk with my untucked button-down shirt, uncombed hair, and my own pair of blue lasers. Very quietly, very clearly, very firmly, I said, pronouncing each word distinctly, “My father is dead. I’m going back to bury him. I will be. On. That. Plane.”

And I was.

On January 23rd the following year, Paul decided to sleep late, and never woke up. On the plane to his funeral, I wrote to the father of one of my oldest friends from Egypt days, who had end-stage cancer. It started something like this:

“I’m on my way to a dear friend’s memorial, and I’m keenly aware that life is short and time is passing. Even though I don’t know you well, because you were my friend’s father rather than my friend directly, you matter to me. I want to let you know how important you’ve been throughout my life.” And then I told him about the ways his life had intersected mine over the years, brightening it along the way.

It was the last letter he received in this life.

Deathiversaries.

That’s my word for those days that sneak up on the calendar, dropping shards of stabbing tears out of a clear blue sky, breaking my knees for a moment as the agony of the unfillable absence hits me anew.

Now, not to strain the violins further, but the period that encompassed the deaths of my father, Paul, and my friend’s father also encompassed several other bereavements, a crippling stroke of my grandmother’s, the heartbreaking failure of my almost-marriage, the end of my nursing career due to illness, being too sickly-weak to make it to the mailbox and back for months, starting a new tech career from nothing but raw talent and pure luck, and moving.

And I really hate moving.

That was all in 18 months. I was a different person at the end of it. I’m sorry to say that it was someone who could face the devastation of CRPS with a lot more poise, but it still sucks.

Last Monday, January 20th, my old neighbor and teacher Mrs P died in her sleep. I haven’t seen her in 38 years (minus a week) but something as sharp and bright as faceted crystal slid out of my world.

My kitten Ari was a comfort to me, flinging himself firmly onto my body, as if to shove his strength and warmth into me.

He was enormous in every way: 10 pounds at 10 months and all of it lanky muscle, enormous love, enormous cheer, enormous charm, enormous athleticism, enormous independence, enormous courage, enormous confidence, enormous sense of humor … he was enormously unusual, even for a cat. He was an enormous invitation to life, just by the way he lived it.

Four nights after that, Ari disappeared. The following morning he was found on the road, dead and cold. Our Lovely Neighbors got us through, from finding his body to explaining to J to telling me. (I’m weaker now. It’s the buckling knees I remember.)
Partner J dug a perfect meter-deep grave, bedded it 6” deep in sprigs of fresh California bay while I blew sage smoke in, and I carried my kitten down to his final spot in the sun, at the bend in the path where he played with our dog and the Lovely Neighbors’ numerous cats.

I took the loss hard.

I’m an old hand at grieving. I can walk through the stages and the process in my sleep, although my body handles it worse all the time.

  1. The initial devastation and shock.
  2. The tasks:
    1. communicating the news,
    2. planning the funerary rites,
    3. preparing the final rest,
    4. performing the rites one needs to lay the deceased, as well as life with the deceased, to rest,
    5. cleaning up their things,
    6. comforting each other,
    7. getting something to eat,
    8. reminding everyone to be extra careful and remember to drink lots of water, which we tend to forget nevertheless.
  3. The reactions:
    • Noticing the way sunshine lands on my skin and birds sing in the trees but it seems to come from a world that’s not quite the one I’m in.
    • The way I have casual surges of wishful thinking: wouldn’t a bullet in the brain be nice about now? This isn’t suicidality (I promise), it’s my mind’s way of signaling that it’s overwhelmed by horrible feelings that it can’t do anything about, and it’s tired and doesn’t know what to do.
    • Re-learn the daily habits that this person (of however many feet) used to be involved in. That’s so dislocating. I don’t need to eyeball a certain corner of the bed before moving my feet now. I’m not even awake when I do that. It’s so horribly weird to wake up by realizing I don’t have to look.

Then the misnamed “stages” of grief, which are really nodes, which can be visited in any order.

  • The anguish, where life without that person has to be faced.
  • The anger, like, why couldn’t that little cuss cross under the bridge as usual, instead of testing one more damned limit and crossing over?
  • The bargaining, although I stopped bargaining years ago. I don’t seem to do that now. Too many unanswered prayers wept and bled into silence.
  • The sweet memories that stab like a ray of sun in my eyes, bringing tears that gradually wane over time, until those memories bring mostly sunshine.
  • Finding a new pattern beginning to emerge in my life, one that encompasses that absence without filling it, but making it less of an obstacle over time. They call that “acceptance”, but I think that’s a bit of a misnomer. I’d call it adapting.

I’ve only realized how very deep and interconnected life is by losing parts of mine. In that 18-month period of multiple losses, I found myself mulling the image of a complex weave on a loom, where each person and each influence in my life was a thread.

Some threads were solid and stable, some were wildly colorful, some thick with burrs, some wove in and out of the pattern, some were knotty and strange, some were pure gold.

When a major thread, or a lot of threads of any size, were ripped off the loom, then the fabric was distorted and there was a visible gap in it for a long time. I could weave on, but that band of the fabric was weaker – sometimes for years, sometimes for a lifetime. It takes a very long time to rebuild from the loss of enough warp threads.

It takes time to work new threads into the weave of life, and longer still to see which ones work in the overall pattern, and which ones fall out on their own – or need to be pulled out, for the damage they do to the rest.

Some people and influences are part of the warp, as they’re meant to stay in the weave for its length and are made to be strong. Career, close family, good friends, matters of identity – these are all warp threads which usually shape and color our lives all along its length. Each one has its own color and texture and breadth, which varies from person to person, and each contributes a depth of color and texture to the weaving that nothing else can provide.

In life, unlike fabric, the warp threads are highly individual.

When one of those gets ripped out, the whole weave … well … warps.

Some people and influences are weft threads, and are easier to change out. Doctors are usually weft threads, although the need for medical care is a warp thread for some of us. Jobs are weft, while careers are usually warp.

I lost a number of warp threads in that 18-month period. Between the end of January and the second week of February, the closest bereavements hit, year after year. The weave of my life has warped, over and over, in the armpit of winter.

I shift my stance from relying unthinkingly on having a lot of strength inside and out, to being mindful and precise about where to put my diminishing attention and energy.

I’ve learned to be more and more aware of good times, genuine love, beautiful days, radiant people, perfect moments, delicious food …

When I look back, I have far fewer regrets when I really noticed good things at the time.

I didn’t expect to have that kitten in the first place.
Even in this season of bereavement, I didn’t expect to lose him so soon.

But when he was here, keeping me permanently in a mild state of befuddlement because he was so much larger than life but still so very young, I sure noticed.

One day, that should be a comfort.

Meanwhile, as CRPS continues to change the game on me, I’m trying to learn to handle bereavement-amidst-deathiversaries with this new and different body-system.

My autonomic system is normally in a state that maps most closely to that of someone who’s being continually beaten with a live cattle prod, but years of practice have taught me when to ignore it and how to manage the results somewhat.

It gets better and worse from time to time. Stress, uncertainty, poor diet, missed meds, solar flares (believe it or not), and injuries, all crank up the volume on my oscillating central nervous system.

Bereavement is stressful, unpredictable, and contributes to poor diet, missed meds, and injuries. (Possibly solar flares for all I know.) Deathiversaries are a hardwired physical memory of bereavements. Having both at once is like being hit from both sides at once. Double oscillations that don’t cancel each other out, but feed into each other and magnify their effects.

All right… What’s an oscillating nervous system like?

Right now, the skin on my face is so raw that my partner’s nice springy beard feels sharper than a cheese-grater. My left lower leg wants to turn into a lump of Dacron, impenetrable and basically useless. My wrists and forearms, well, the less said the better, but I have to hold my mug with both hands to avoid wearing what’s in it. I went outside in soft shoes today (I usually wear hiking shoes) and the friendly little stones in the yard slowed me down considerably, as each one wanted to get way too personal with my foot-bones.

That’s the physical side of CRPS.

Because of the brain changes that make that stuff happen, there’s a parallel process that happens on the emotional side. Imagine the same degree of relentless rawness and unquenchable pain inside the heart and mind, and you’ll have some idea what it’s like.

I’ll give you a minute, if you like.

I don’t mean to whine, it’s just a fact of life with this disease. It takes a lot of managing, because my mental state wants to default to, well… how distressing and upsetting it is to be beaten continually with a live cattle prod.

How do you deal with an oscillating nervous system?

When your world is being purged, it’s important to replenish and nourish. This means extra antioxidants, extra meditation/biofeedback, extra hugs, and – if possible – someone else to clean the house and help with laundry and cooking.

One must eat, clean, and cope, and if it takes help, then I ask for help.

Herbal lemon balm extract helps cut the flared nerve pain. Chamomile and lavender tea, maybe with tulsi, helps me get to sleep. Some people do well with vervain or ashwaganda.

Homeopathics like ignatia amara and hypericum ease other parts of my nervous system responses. Also, I use an essential oil blend from Young Living called Valor, to reduce the hotwired panic reflex and hyper-alertness.

In case it isn’t obvious …

I don’t care what academics say, I only care what works for me. Empiricism is the only form of science that matters in the individual case.

I keep busy in order to keep my mind from exploding over the surfeit of losses and memories of losses, while CRPS takes the brakes off of all the feelings – physical and emotional alike.

This leaves me to manage the resulting inward chaos with whatever poise I can fake, because I know that a certain part of it is grief but a certain part of it is simply brain damage.

Either way, it will ease up in time.

So I keep busy, take my supplements, comfort the dog (whose heartsick look would make a stone weep), try not to draw attention to my partner’s look of not knowing what hit him, and wait …

Mostly, I wait for the balm of time, because it doesn’t change the loss, but it helps me learn to live with it.

Also, it moves the deathiversaries into my rearview mirror for another year. Until then, I’ll hold the love and leave the pain as much as I can.

Lastly, I wait for the fierce oscillations of my nervous system, humming and shaking like a five-foot-high tuning fork, to decrease and diminish and eventually …
quiet down …
to … a …
stop.

There is always an afterwards. Survival is simply a matter of getting to it.

Managing CRPS under this kind of duress is not magic, it’s persistence.

I keep breathing and let the awful moments pass. I’m old enough, both as a person and a CRPSer, to know that there are better ones ahead.

All I have to do is get there.

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Happy Everything!

Now that the December holidays are within a couple days of being totally over, I hope it’s safe and amusing (rather than triggering and insensitive) to talk about them from my idiosyncratic point of view 🙂

We left the U.S. in January of 1976 for tropical countries, shortly before my 10th birthday, and didn’t move back for about 7 years. (This is relevant. Hang on.)
airplane_Abu_Dhabi_Boeing_747jpg
This means my entire pubescence and adolescence was spent in countries where, at the time, Christianity was an amiably tolerated oddity, and Western-style Christmas was weird almost beyond belief… but the pragmatism of shopkeepers is the same the world over: It’s all money!

And, of course, the legendary sweetness of Egyptians (outside of politics) made it all a sort of good-natured sport:
“Tell me what is ‘Christmas tree’ and I’ll get it — for you, special price, my friend! You my friend! Special price!” (The last part is indispensible.)

For you, my friend, special price!
For you, my friend, special price!

Then it was a matter of watching them try to keep a straight face, as you:

  • Try to obtain a cold-weather evergreen … in a hot desert country;
  • Subsequently drape that evergreen in colors of snow and blood … in order to celebrate a god of peace;
  • Who came to earth in — yup — the desert … where it snows less than once a century;
  • Which is all somehow tied up with celebrating a Northern solar event, which doesn’t matter near the equator

… And then there’s the obligatory gift-giving. This was even a bigger trip to explain.

The Cultural Gap on Gift-Giving

“Everyone?” I remember one man asking Mom, in deep confusion. In his life, the only people who got gifts were those who deserved it, and little children on their birthdays.

“Well, not everyone,” she temporized.

“Who do you have to give things to?” he asked, really wanting to understand.

She did her best to explain, as a good cultural ambassador should. “Your husband or wife and children, of course.”

ALL the children?” he asked, in shock.

“Well, yes.”

“Even if they’ve been bad, or broke the car, or spoiled the crops? Cost you a lot of money? You still buy them presents?”

Mom had to stop a minute. This is where practice bears no relation to theory. “You can try not giving evenly to the children, but they’ll let you know. Mine let me know, as a group, if they think it wasn’t perfectly even.” We did, too. She went on, “And I send presents back to my brother and his wife and family –”

He interrupted, “Where are they?”

She said, “In America.” Where he knew we hadn’t been in a few years.

He tipped his chin to one side, in that “as you wish” gesture of the Middle East, which was a polite way of indicating, “yeah, this doesn’t seem silly. Much.”

She went on, “We also send gifts to my husband’s brother and sister and her children — she’s divorced, so we don’t have to buy for her husband any more.”

His eyebrows popped, but he held his tongue. Why would you buy gifts for nieces and nephews thousands of miles away? What have they ever done to deserve that much effort? — And divorced?? A woman, divorced, still embraced by her famiily? And these foreigners push off the guy instead — odd, but probably praiseworthy. Okay. Nice. Weird, but nice. Moving right along.

But he didn’t say any of that aloud.

Mom went on, “And my mother, of course. My husband’s parents and my father are no longer living, so we don’t have to buy for them.”

I thought he murmured, “I’m surprised.” Maybe it was just his limpid expression.

She went on, “Oh, and we get something for the servants, plus a bonus of money. [Eyebrows up: nice deal, a bonus for your boss’s religion]. And Tom gives his boss a gift, small but nice, and the office pitches in and gets something for each of the secretaries, but Tom still gets something extra for the ones he works with [visibly wondering about those secretaries]… And then of course our friends.”

He was beginning to sound weary, or possibly just relieved that it wasn’t him. “All your friends?”

Mom said, “You get nice things for those you’re close to, less valuable things for friends further out.”

He nodded. At least that made sense. He asked, like the socially sensitive person he clearly was, “What happens if they’re not equal — if you get a nicer present than you give, or the other way around?”

“Well,” said my mother frankly, “That can be a little embarrassing. It happens sometimes, but we try to be polite about it. I’ve gone back and gotten someone something more, to even up the balance.”

Another gracious tip of the chin, this time probably meaning, “Smart move in a crazy system.”

Mom added, “And, if someone invites you to a party, it’s considered good manners to bring them a small gift, or at least a bottle of wine.” How suitable — in a traditionally non-drinking country.

He shook his head slowly and said, “And that’s not everybody?”

Mom finally laughed. “Well, not quite.”

It really makes you wonder, when you look at it from the outside.

"Oh no, I couldn't take another thing!"
“Oh no, I couldn’t take another thing!”

Blowing scads of money every single year on a bunch of ill-thought-out purchases, mostly for people you hardly know, who are getting inundated with them anyway, to celebrate the birth of someone who told you that love matters more than money … or possibly because it was the armpit of winter, so let’s all go indoors and eat ourselves sick until the sun shows up again … in the desert.

I never sneer when someone uses the terms “religion” and “mythology” interchangeably, even when they’re talking about mine. I know for a fact that it’s simply a matter of perspective.

Back to the tree question.

Our first year in Egypt, we did try buying a spruce and, well, sprucing it up. The result was pathetic even beyond my father’s generous taste for “trees with personality”. It was the quintessential Charlie Brown tree, but slightly taller. The poor straggly little thing was quite overwhelmed by even the few decorations we dared hang on it, and was almost crushed by a single strand of lights.

That was that for traditional trees (and none of us cared for the plastic ones.)
ChristmasTree_NOT
So we had to come up with non-traditional trees.

Each year, my feverishly creative mother outdid herself in coming up with some fabulous representation of a Christmas “tree”, appropriately gaudy and festive, festooned with merry decorations and strung with whatever we felt like stringing it with. (I remember learning just how tedious crafts could be, the year we decided to string popcorn.)

She was especially fond of the stacked poinsettias, perched on benches and boxes at several levels, but I liked every single year’s distinctive creation as much as the others.

I only wish I could remember them in any detail; it was a pleasant part of the backdrop of life, as far as I was concerned at the time. We take so much for granted at that age!

She finally called it quits on our first Christmas in Bangladesh. She was fed to the back teeth with coming up with something every year and decided to “rest on her laurels” — a nice way of saying that she was plumb out of ideas.

I was home from boarding school in the US (there were no accredited high schools in Dhaka at the time) and was still blossoming under the influence of tropical warmth, so notably absent from Massachusetts in December.
woman-with-sitar
I found a red-and-white canvas plant hanger (this was back when plant hangers were made of fabric rather than plastic) and fastened it to the wooden screen between the living room and sun room. A few bent wire coat-hangers later, we had a Christmas tree to decorate.

I even whittled a couple of reindeer out of Ivory soap and fashioned a little sleigh for them to pull out of unlined 3×5 card and toothpicks. Our little elfin Santa perched in it quite happily.

I have no idea how I pulled it off, but it was easy to do at the time.

So, as you can see, my notion of the holidays involved a lot of flexibility from very early on. This probably explains a lot. I celebrate Yule, Solstice, Christmas, and if I’m invited to any other spiritual observance, I do my best to participate with my best manners and heartfelt good will.

Normally. This disease does change things; most obviously, one’s social activities.

All last year, I sent off presents whenever I found them, things I really thought the recipient would absolutely love. Nothing thoughtless and nothing I couldn’t afford, and no waiting and storing and wrapping to deal with. It was a nice change! Not everyone I love got something, but everything I sent was right, and everyone else knows I love them just the same — I simply didn’t find the right gift yet. Next year, it’ll be a different mix.

At home, there was no noticeable festivity, but there was a cozy little trailer filled with love and care. That was all we were up to, and it was fine.

Next year, J and I think, there will be lights and color and a bit of show. In our own little way, we will celebrate anything we have a mind to, and it will probably involve lights and candles and sweet smudge. Whatever we do, it will still be in a little home full of love and care.

Because love is more important than money.

Postscript
Informal International Network of CRPS Bloggers:

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2013 retrospective

I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
boat-mancallingastern
It’s gratifying to see how I’ve matured as a writer. Most of my posts this year have been solid, practical, and reasonably well-put. I don’t say that as a matter of ego (much), but as a matter of professionalism: if I’m going to be doing this, I should be doing a good job! I’m constantly trying to improve. There is always room for improvement, a fact which I find intriguing more than frustrating.
George_Goodwin_Kilburne_Writing_a_letter_home_1875
The arc of 2013 was interesting: started off very rough, so rough I had to completely revamp my pain rating scale to ignore the question of pain, and go straight to the question of function. And even that was pretty iffy. In retrospect, it was actually pathetic.

I got reacquainted with my body and, of course, my mind, with considerable help from a capable team at the University of Southern California. I felt like I missed a lot of the “coursework”, so to speak, because my cognitive function was so horribly screwy. (In fact, I had recurring nightmares about finding myself in school partway through the term, with no idea what my schedule was and not even knowing what classes I was taking, certain only that I was doomed to failure.)
poison_skull
Identifying my screwy cognitive function (or rather, dysfunction) as, basically, “acquired ADD” and treating it accordingly allowed me to play some catch-up after the fact.

I moved out of the LA area and in with my beloved – at last! – and rediscovered fresh air and sunshine, which is a great help with the body and mind, I find.
girl on a flat beach kicking a ball high
I worked on what I had learned at USC, (here’s one and here’s another example of using those mental tricks) and, in parallel, I worked with my lawyer on closing and settling my work injury case. (I wasn’t able to discuss that at the time, as it was an open legal issue. Now, it’s not. That’s what we call foreshadowing 🙂 )

To my consummate relief and delight, we succeeded in crafting an offer that was acceptable to all parties, and we finally closed the legal aspect of this case – after almost exactly 14 years since my first injury, 12/1999.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu

Last week, for the first time, I was able to get my medication without needing anyone’s approval. That was a great day.

We have another move coming up in a couple of months, and the idea is to go where I can get all the massage, acupuncture, and chiropracty I need. It’s a much shorter commute to LA, which, I hope, will mean shorter recovery times from those trips.

Moreover, now that I don’t have to argue about my care, I plan to go back to “class” and try to recapture some of what I missed in 2013.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
Halleluiah!

2013 was a lot of hard work, but a lot less brutal than many of its predecessors.

From where I stand, 2014 looks like it’s going to be a lot of work too, but I sincerely hope – I almost expect – to be considerably stronger at the end of it. We shall see.

Happy and painless 2014, with hopes for full remission and possibly total healing for us all! Hey, I dream big 🙂
me-fingers-peace
Postscript:
My partner is becoming better acquainted with what this disease does to me. He wants backup.

I know of two of my compatriots who’ve died of CRPS this week, people I was acquainted with online. The world is poorer without them.
Earth seen from the moon. Earth is gibbous.
So, what with one thing and another, and despite the absurd snafus involved so far, it’s time to finish up my will and legally establish a durable power of attorney for healthcare. Unless I achieve complete remission, I expect my death (hopefully long since) to be attributed to this disease. My executrix knows, and I trust her to see to it. CRPS is deadly, and it doesn’t get nearly enough credit for that.

If you haven’t already done so, I encourage you to take care of these things, too. It’s very freeing, and the conversations you have around it can be useful beyond themselves.

Being better prepared for these brutal and terminal issues frees up a lot of energy for living and enjoying it. Really 🙂
Detail from the Crab Nebula,

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Riding what you’ve got

Today’s images are a sampling from the newly-released online library of digitized images from Oxford University’s Bodleian Library, one of the oldest extant university libraries in Europe, with images from all around the world. Enjoy 🙂

I’ve written before about the recurring message from some self-described healers that I must be sick because I think wrong, my soul is awry, I want this subconsciously, or some similarly cruel and blaming trope. (Pardon my speaking so plainly, but I have always been very likely to call a “spade” either a shovel, a playing card, or an African-American, depending on what the original speaker meant.)

I went through quite a few years of believing that myself, which is one reason I feel free to call it what it is, now. I know what it is from the inside. Like the child who gets beaten, I’d like to imagine that I have some control over the situation, so I try to believe that I’m responsible for it. But believing that does not make it so.

What would happen if I told a child who gets beaten that it happens because the kid thinks wrong, or because something is awry with that child’s soul, or because he or she subconsciously wants to be brutalized and abused?

child-beating
From a board game about Dick Whitington!

I’d probably get lynched, and rightly so.

There is such a thing as random chance. There is such a thing as being in the wrong place at the wrong time. There is such a thing as bloody luck. (Insurance companies know this, and people with consistently bad luck — regardless of actual, verifiable skill — pay higher rates for certain kinds of insurance.)

I used to be a trauma and triage nurse. I heard uncountable numbers of people cry out, “Why is God punishing me like this?”
angel-scoldingman
To which I said, more than once, “You’re not being punished! Sometimes things just happen, and this time it happened to you. It’s going to happen to someone, and what makes you think you’re immune from being a member of the human race?” (Said with a nice smile, of course.)

I wasn’t always there with the pat-pat-there-there (you’d be amazed how little that helps with the heavy stuff), but I could usually be counted on for the proverbial whiff of coffee.

coffee-4men
Yes, I added the coffee cups.

Some people believe that there is a reason for everything, and if it gives them comfort, so much the better.

Me, I’m absolutely clear that reason is what we bring to life, not vice versa. The universe tends towards entropy, which is, perfect chaos; our fragile rafts of order, which we impose on our lives, are temporary structures.
boat-mancallingastern
I’ve had so many of these rafts, each of which I called my life, blasted apart with me in them, that I no longer imagine either that I have to have one to live, or that I’m incapable of building another.
women-3bathing
I can live without coherence in my life for awhile, and I can always make more out of raw materials. These days, I recognize everything as temporary. And that’s neither good nor bad, it just is. I can have feelings about it, but that doesn’t really change things, except to make me happier or sadder.

I’d rather be happier, but what I’d really rather do is get on with things and stop dithering. I’m getting better at bringing order with me, and that gives my ANS a break so I’m better equipped to handle the chaos that inevitably barges in.
boat-amidstchaos
There’s an inward sense of riding the waves, rather than trying to flatten the ocean, which epitomizes my handling of life — especially life with CRPS.
boat-ridingthewaves
Joseph Campbell put this in his usual velvety prose, sounding much more spiritual and impressive:

And so this brings us to the final formula of the Bodhisattava way, the way of the one who is grounded in eternity and moving in the field of time. The field of time is the field of sorow. “All life is sorrowful.” And it is. If you try to correct the sorrows, all you do is shift them somewhere else. [Good point! //Is.] Life is sorrowful. How do you live with that? You realize the eternal within yourself. You disengage, and yet, reengage. You — and here’s the beautiful formula — “participate with joy in the sorrows of the world.” You play the game. It hurts, but you know that you have found the place that is transcendent of injury and fulfillments. You are there, and that’s it.

There’s nothing in there about being above pain or beyond illness. It’s about having illness, having pain, and being there anyway, because you know there’s more to it than the illness and the pain, and the “more” is what matters in the end.

Which raises the interesting question: Is life *supposed* to be a bed of roses? Because, if it is, then most of us are getting gyped!
woman-indolenceandroses
Many people say they deserve better, but what does that have to do with anything? Most of us deserve better, but I haven’t noticed things improving with that approach. Deserving isn’t the point. I get what I get, and what I make of it is the real litmus test of my life.

Are we supposed to reach for a painless state of perfect health and earthly bliss? Are we supposed to stay stuck in our ideas of what constitutes a life worth living, and keep reaching for that, whether or not it’s ever in reach?

Is that chronic state of dissatisfaction with the lives we have, right here/right now, really the point?

Or is life supposed to be one heck of a ride, where we don’t get to choose it, but we do get to choose how we handle it?

animals-battle-rides
Did you get a horse, a camel, an elephant, or a pair of boots?

I think it’s one heck of a ride. But that’s me. And I know I’m not immune from being a member of the human race, so I take my chances — and this illness was one of them.

I’ll take this life, warts and all, and be grateful. CRPS is a spectacular pain in the neck, a huge nuisance and a vile burden to carry, but it’s not the sum of my life.

I aim to handle this ride with all the poise I can, because it’s about a lot more than one rotten disease. And I certainly have some good company on this ride.
women-riding

P.S. The international network of CRPS bloggers is posting about how we handle the holidays this month. I avoid the whole circus, as you can see, but beam benevolently on those who choose otherwise. All the gifts I had to give went out between May and November. I spend winter getting through the winter, and that’s enough to manage, thank you 🙂

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Expletives can be good

I’ve always been a wee bit daffy, so the additional daffiness of pain-brain, combined with the clumsiness of my brain’s shoddy un-mapping, re-mapping, or possibly dis-mapping of my body and physical environment, leaves my daily life simply packed with faux pas and prat-falls of one kind or another.

Mr. Keaton, clearly making a decision in a moment of pain-brain.

These used to upset me considerably, and I’d try to re-normalize the situation as fast as possible out of the combined distress of embarrassment and fear about the brain-invading nature of this disease.

This morning, I turned away from the counter too fast and knocked over the oil-filled heater. Instead of dissolving in humiliation and anxiety, I pursed my lips, finished what I was doing, and pulled up the heater when I had a hand free.

My sweetie J, as usual, said (without the asterisks), “You f***ed up,” with a unique combination of resignation and relish. (Nobody says, “You f***ed up,” like he does. It’s a gift.)

The more trivial the faux pas or prat-fall, the more pronounced those syllables are. “You f***ed up” becomes more emphatic, the more meaningless the mistake.

It never fails to put things in perspective.

Something I’m going to write about, once I figure out how, is The Flinch — the way that years of isolation, vulnerability, and abuse left me twitching in fear with the least expression of displeasure or annoyance in those around me.

Last summer, my excellent hostess L, who has a magical combination of boundless compassion and ‘no b.s. thank you’, was the first to let me know that I’d become a nervous nellie extraordinaire, and helped me start to retrain myself.

When I moved in with J in October, he let me know, after a couple of weeks of me jumping and flinching and asking permission to use my own damn home, that The Flinch was back and needed to take a lo-o-o-ong vacation.

“You f****ed up” is part of his droll approach to that inescapable fact of life, frustration. It’s part of his gift for surviving with his golden personality intact. He says things like that to defuse feelings before they even start to pile up.

I grew up in New England. Do I need to say more? We don’t defuse … what, feelings? We are very intellectual in the way we admit that we even have any. The first few times he told me, “You f****ed up,” I stared at him in shock.
me, looking absurdly shocked
I’m used to it now. I laugh, or agree “I f****ed up,” or turn it around and say, “Yeah, you sure did.”

I can’t do any of that and flinch.

Long ago, I observed that a good partner was one who handed you the way back to yourself when you got lost in the confusion of life. Simply telling me it’s no big deal is not that helpful — I know in my head that it’s no big deal, but the feelings in this over-torqued, dis-mapped brain all charge ahead nevertheless.

J’s way of showing me, by making the bigness of the deal ridiculous, stops that routine in its tracks.

I f***ed up. So what? I’ve got a fresh pot of tea waiting on the other side of that radiator. And that’s what matters! 🙂
teapot-eaglehaslanded

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Being clear about being grateful

We visited our favorite hot springs last week. There’s a hot pool that’s very hot indeed. When I alternate between that and the cold pool, preferably dipping several times, it becomes quite a fabulous experience.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
Halleluiah!

Whether it’s the lymph getting going properly for a change, or toxins (the few that are left) getting sucked out of my system, or my autonomic system finally getting a clue and just taking a break, or possibly all that and something more, I have no idea. But it can be really good.

gleeful woman grinning, sitting in a sailboat cockpit, sunny water behind her
REALLY good!

I did my dips and bounced gently on the balls of my feet in the hot pool, overflowing with something like gratitude. I’m no fool (I just take an off-road approach to life) … offering gratitude works, even with a conception of spirituality based more on quantum physics than religious dogma.

Things go better when I’m classy enough to express whatever gratitude I feel.

However, it has to be “true enough to write,” my ultimate litmus test of sincerity. (That really is my key phrase when I’m thinking about truth, writing, or both.)

George_Goodwin_Kilburne_Writing_a_letter_home_1875There’s no fooling the All, because I’m part of it and I know the truth, even when I don’t want to.

Letting my head fall back into the welcoming warmth, I thought a moment, letting the feeling swirl through me like water.

Grateful for my life?
I have to be honest (though it may mean I have an inferior soul or something) … I’d love to be. I think that somehow I ought to be. But really, when you get right down to it… too many caveats.

Grateful for this day?
Well, y’know, there was too much of the day left that could go wrong. Experience has been too strong a teacher to make me grateful for something before it’s in the bag.

Grateful for this moment?
Ah yes, there we go.

I felt my spine let go of the last knot.

I could say, without hesitation and with perfect integrity, that I was definitely grateful for this moment. Completely, unwaveringly glad to have it. I was truly thankful for that heavenly bit of space-time I’d found myself in.

Crab_Nebula-crop
Heavenly, beautiful… grateful for it

The moment stretched and smiled and wrapped me in blissful arms. It made me stronger and more content, and I faced the bumps and mild insults of the rest of the day with fairly unruffled peace.

It turned out to be a good day. A day to be grateful for.

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There’s always an afterwards

When I was a nurse, I could see when death was creeping up on someone. I saw gray fluttering around the person’s edges, especially around the head and upper body. As they recovered, the fluttering grew narrower and disappeared; as they lost ground, it grew wider, sometimes growing too wide to see.

Rear view of sturdy stone angel inside a lovel stone church

When that happened, I made sure I could find the code cart, because we were going to need it.

I worked and fought like hell to shrink that fluttering, to get each person closer to life.

Not every life can be saved. There’s a dislocating moment when, after working with several others to try to revive someone, it sinks in upon all of you – neaerly simultaneously – that it’s a lost cause, and then the doctor calls the code.

Everyone steps back for a moment, same expression on their faces: eyebrows up, eyes on the erstwhile patient, mouth slightly open, every brain running through the scenario and looking for something left undone (never has been, on my teams)… pausing in the shock of rebooting.

When I was coding someone, that person was the most important thing in my world, and all of my training and experience and physical capacity was tightly woven into my determination to get them back. When I had to stop coding them, all of that intense focus, activity, and energy had to come to a screeching halt, be re-assimilated back into my reserve, and clear the way for the next set of tasks. Not a trivial job.

Multiply  that by the number of professionals in the room, and you see why there’s always a breathless pause, even in the most practiced ER.

Then we get back to work, but it’s the work of cleaning up, restocking supplies and meds, prepping the body for the morgue/organ harvesting, and clearing the way for the next incident — a gunshot wound, a bloody nose, a beaten child, a drama queen or king; could be anything.

This explains a lot about ER staff: whatever happens, however we feel about it, we have to clear it away, clean up, restock, and be ready for the most trivial or the most harrowing issues to come in that door next — with little or no warning. Then deal with that, sometimes by brutal means (which you’d understand if you ever saw a chest tube placed or helped set bones for someone who’s been beaten.) Then go home, get food down and go to sleep, and be ready to  come in the next day and do it all over again. Day after day after week after year.

Imagine what that takes.

No wonder they often seem a bit detached, a bit harsh, a bit clueless about the human impact of what they do. They have to come back to that every working day, and try to stay above the madness.

Bosch_painting_of_Hell_(582x800)

The very day I realized I’d forgotten the human impact, was the day I knew I had to change careers. No wonder my immune system was failing. The effort to protect myself was killing me.

My dad’s death was unexpected, and happened overseas. It happened shortly after I knew I’d have to change careers, and shortly before I gave notice and surrendered my RN licensure.

I don’t think I’ll talk about it much, except to pass on the best advice I ever got about survival:

Take every opportunity to be happy, because it makes you stronger for the other times.

Less than a year later, one of my dearest friends died suddenly, back East… After that, I lost someone I loved every month or two, for just over a year… and somewhere in the middle of that, my relationship fell apart.

Hellish, tragic and harrowing as that period of time was, it turned out to be training wheels for being disabled with CRPS and all that comes with that.

It’s no wonder I have some of the symptoms of someone in an abusive relationship. I am; it’s called Life.

me-fingers-2up
And that’s what I say about it.

I’ve seen the grey fluttering around myself more often than I’d care to say. I’ve wrestled with the desperate temptation to end this brutal, chaotic nonsense for myself.

Angels_lossy_notsonice

My own intransigence saves me; no stupid disease gets to win. The very thought is intolerable. Not gonna let it happen.

US Navy: Marines of the embarked 15th Marine Expeditionary Unit practice hand-to-hand combat
I identify with both. They’re working their butts off and there’s no telling who’ll win… but neither one will cry uncle.

I’ve had to tell myself, sometimes every few seconds, “Keep breathing. This will pass. There is an afterwards. Just stay alive long enough to see it. There is an afterwards. Let’s find out what it’ll be like. Keep breathing. This will pass.”

Verbatim.

And, eventually, times like this morning come, which thaw those unspeakable memories on the warm stove of peace…

Gentle air from a misty morning caresses my mouth. Happy morning voices trickle in from the neighbors. My tea tastes just right. The birds are screaming their fool heads off in the greenery. My feline ray  of sunshine can’t stop moving for the sheer glee of being alive.

Ari-squirming

It’s simple, but it’s perfect.

I find myself glancing back at the shadows behind me, giving them a nod.

I was right. There is always an afterwards.

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The Red Pen Technique (dramatic music, please)

This is probably the simplest, most powerful tool for getting your complex care back into the realm of sanity.

It’s easier said than done, but it’s worth it. More valuable than words can say.

It’s a fairly simple 3-step process:

  1.  Get copies of your medical records.
  2.  Prepare: understand the records, get a colored pen, and stock up on post-its.
  3.  Mark it like you own it.

Here’s the step-by-step rundown of this process, with insider insights, tips and suggestions. (I apologize in advance for the clunky formatting. I’ll work on it.)

1. Get copies of your medical records

[Updated 3/2018 to reflect current trend towards soft copy documentation.]

In the US, you are LEGALLY ENTITLED to all the information in your medical chart. (Worker’s Compensation is a special case; you can still get copies through your lawyer or sometimes directly from the doctor, but don’t talk to the insurer about any of that.)

To get copies,

A. Call the hospital, clinic, or office and ask for the Medical Records department.

B. Ask what their process is for obtaining copies of your medical records. Most MR departments are honest, understaffed, and extremely literal-minded. Be clear, frank, and polite-but-not-wimpy; that seems to work well with the MR mindset.

i. Some will let you come into the office and make your own photocopies. They may charge you for the copies. Some may have soft copy they can send you on a CD or provide a secure way to download.

ii. Some don’t allow non-staff into the department and will make the copies for you (and it’s best to provide them with a list of what you want, so they don’t provide you with the usual thin, doctor-oriented version. More on that later.) They will probably charge you for pulling the record, making the copies, reassembling the chart, and packaging your copies up for you. They might fax them to you, but, if they don’t require you to come in personally and show ID, then the chart copy is usually mailed or FedExed. Soft copy may be free or cheap. Ask about the cost for each method, and if they don’t offer the method you want, ask if they can provide it anyway.

iii. Some will give you the runaround. In that case, be polite but firm, and let them know that you have a legal right to the information in your chart, so let’s figure out how to get it to you. (Never buy into a power struggle with petty power weilders. Just refocus on the goal — like with toddlers.)

iv. If you had films of any kind (X-ray, MRI, CT scan, ultrasound), ask how to get those films. You usually get them directly from the Radiology or Sonography department rather than Medical Records. They’re most likely to drop a CD in the mail for you. You’ll need software that can view DICOM images — do an internet search to find the best current free application for reading DICOM files.

The radiology departments no longer use film. They used to recycle it every 2 years, so the only way to keep those records was to get the physical films and hang onto them despite promises they’d demand to return them. That didn’t mean you were any better or that the film was irrelevant in two years!

C. Follow the instructions they give you for getting those copies. Be sure to request copies of the following:

i. Doctor’s notes, both narrative notes and forms.

ia. Consults’/Specialists’ notes. (Yes, they need to be specifically requested in some facilities.)

ii. Medication orders. This is what was supposed to be given.

iii. Medication Administration Record (MAR.) This is what was actually given.

iv. Nurse’s notes, both narrative notes and forms. (These days, some places only have forms.) These should include Nursing Diagnoses (which gives a good idea of just how worried or confused they were about you) and daily tracking of what care was needed and provided.

v. Vital signs and intake/output sheets. (Includes fingerstick blood sugars when used.) This is usually background information, but every now and then there’s a nasty surprise. There is no substitute for the clarity and simplicity of this info.

vi. Results of tests. These include labs taken from your blood, urine, stool, saliva, tissue samples, or whatever else they examined. It can include psych tests, behavioral tests, and any other test.

vii. Readings. This refers to what a trained specialist concluded from looking at your films, ultrasound, EEGs, EMGs, EKGs, and so on. It’s usually a couple of paragraphs.

viii. Rehab notes: narrative notes, test results, and forms. This is what your PT, OT, and other rehab specialists saw.

ix. Discharge planning notes. Discharge planning is supposed to start as soon as you’re admitted. These notes will tell you what they knew or assumed about your context and abilities. Very useful info between the lines.

x. List of charges. This is what they’re telling the insurance company they did for you and how much it cost. This should include pharmacy charges as well as “floor” charges. Another place to find both corroborations and surprises.

xi. If they say, “Would you also like [something else in the chart]?” The right answer is usually, “Why yes, thank you, that would be helpful.” Sometimes they offer it because they’re so detail-oriented, but sometimes they offer it because it fits into the pattern of the care you received. Feel free to ask why they suggested it or what it relates to.

D. When you get your chart copy, either scan it into your hard drive before you do anything else, or make 2 more copies and put the original (clearly labeled) somewhere safe.

Some people consider this step optional. I won’t argue with someone else’s working style or legal situation; you’re the one best-qualified to decide how protective to be of your chart copy.

I have everything on my hard drive. I have dealt with a hospital, a federal agency and an insurance company that forgot, mislaid, misread, or destroyed part or all of my chart. I don’t trust any institution to get it right any more.

2. Prepare

When your original copy of your chart is as safe as you want it to be, take a copy to mark up. This is where the real fun begins.

A. Read the whole thing over once. Try not to get bogged down — this quick run-through will help you familiarize yourself with the lingo and the special way of thinking that’s used in the health care field. It will also give you an overall idea of what you’re working with and will shine a light on the most obvious gaps — in your knowledge or vocabulary, or in theirs. Put flags in the strangest, most egregious or excitiing parts, so you can refer to them quickly. Use post-its to comment on the page.

B. Whether or not your first read-through is quick, your second read-through will be a LOT more informative. Pick out and investigate the obvious holes in your own knowledge, looking up words and concepts that aren’t clear, or checking your assumptions about what they meant.

C. (You can start doing this in 2.B., but you’ll be better-equipped if you wait until you’ve got your vocabulary and assumptions squared away.)

GRAB A COLORED PEN. Mwahahahahahahaaaa!

Red, green, dark  pink, and medium purple are all great, because they stand out so well from the black and grey of the copy. Use a color you enjoy commenting with, in a pen that feels good to write with.

No black. No grey. Blue if you must, but it’s a very “normal” color and easy to overlook.

3. Mark it like you own it

Now that you’re prepared, are familiar with the chart, have the hot spots flagged, and know the vocabulary, you’re ready to TAKE BACK YOUR CARE.

A. Go through the chart with your colored pen.

B. Mark everything that is wrong, misleading, or unclear. (Feel free to color-code, if that works for you.)

C. Comment on:

i.  what the real deal was,

ii. what was wrong with what they wrote,

iii. your own observations,

iv. any evidence or witnesses,

v. and — this is usually relevant! — where else in the chart this error, confusion or lie is brought into question. (This is why you get the nurse’s notes. They tend to be accurate, front-line reportage of what happened at the bedside.)

Generally, you can keep emotions out of it. The facts WILL tell the story, and the reader’s own emotions will fill in the blanks.  If you can do this, then you will wind up with a much more powerful piece of documentation than if you’d given into the natural urge to editorialize. Sometimes, if I’m just too mad, I editorialize (and use expletives and call names) on separate paper, then, when I’m calmer and my thoughts are clearer, I go back and write in a calmer note.

D. Write (or tabulate, or draw; whatever works for you to nail your understanding) a summary of issues with the chart.

i. Pick out major issues, overarching issues, and the points where things really should have gone differently. (If you’re writing, use headings — that impresses the heck out of people.)

ii. Summarize the whole thing in a paragraph or two at the end.

4. Now what?

It’s up to  you. You have documentation that is worth presenting in court. (Yes, believe it or not, you can talk until you’re blue in the face and be only tolerated, but if you really want to persuade highly-educated people, then put it in print — with annotations. They will believe exactly the same thing in print, that they’ll be incredulous of when you speak.)

Regardless of what happens next, you will have a whole new approach to medical care. Your perspective on the whole business will change as a result of doing this exercise. You will be much more collegial with your doctors — much less the supplicant praying for something beyond your control. You will speak about your care with more clarity and authority, and your care providers will respond to that, usually with more forthcoming-ness and respect.

Depending on the issues involved (and whether your case is already part of a legal process, such as Worker’s Comp), you can:

  •  Send a (color?) copy to  your attorney. You can always do this. It’s guaranteed to get some attention, and your attorney is liable to  respond well to the nonverbal message that this is important enough to you to go to all this effort. That’s a big deal. Most clients of attorneys are kind of helpless. You set yourself apart with this.
  •  Take it with you to your next visit with a key physician — the worst offender, or his boss, or the one who’s on your side and can help you figure out how to proceed most effectively. Be prepared to let the “good guy” take a copy, and consider bringing a copy for the “bad guy” since you don’t want to let your copy out of your hands there.
  •  Arrange a meeting with the facility’s adminstrators to address the hot issues. Take it with you (or scan copies and show it from your laptop — lots of tech assumptions there) and let them know, kindly and clearly, what you want them to do about it. Administrators tend to be goal-oriented, so give them a goal. Tip: If they have legal counsel present, it’s good if you do, too. In any case, it’s not a bad idea to bring a couple of respectable-looking friends (“my assistants/associates/posse”) who have faith in you, for moral support — and so you’re not all alone on your side of the table.
  •  Send a color copy to your local paper, your congresscritter, the medical board for your state, or the Department of Health, with a cover letter explaining your concerns and what you would like to see change. This could raise some attention, all right. (If your case is currently in a legal process, it may be illegal to do this. Ask your lawyer.)

If you’ve never done this before, you’re in for a transformative experience. Even if you do nothing further with it, your situation will feel very different, and you’ll find yourself facing future care with a stronger, clearer, more in-charge attitude.

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Is losing our minds to “pain brain” optional?

64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:

– Confusion: it’s harder to keep track of things like we used to.

– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.

– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.

– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*

– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.

– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.

– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.

– Poor sleep. Trouble waking up. No duh.

 

Now, just for grins, let’s look at the list of symptoms for AD/HD:

– Difficulty tracking complex ideas/confusion

– Forgetfulness.

– Distractability.

– Locked focus.

– Memory issues.

– Intense, driving feelings.

– Oversimplifying/black-and-white thinking.

– Poor sleep. Trouble waking up. Hel-lo!

 

Is it just me, or is there a wee bit of overlap here?

 

Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.

 

We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.

 

Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.

 

This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.

 

When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.

 

We can do this.

 

Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.

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