To fail myself is to fail others, and doesn’t that suck!

My desk setup is nonexistent and much of it still buried in unpacking. I wish I’d been writing some of the wonderful blog ideas that have passed through, but I didn’t. Rather than trying to reconstruct them from addled hindsight, I’ll just go on as if I had a whole nest of posts to plop this one into, and go on from here.

As my desk situation indicates, I still feel perched, rather than settled. I’m going to have to find a rental in the spring and then start looking for a miraculously good deal on a house to buy after that, so it’s hard to unpack all the way.

Moreover, California is still extending opportunistic tendrils into our wallets, task lists, and attention.

And then there are the periodic health crises: a bit of allergy exposure here, a bit of partner’s chest pain there, a sprained wrist from me overdoing, a sprained back from him overdoing… you know. Stuff.

Oh, and the holidays, with a trip and gifties to prepare, mostly for people I haven’t seen for over a decade… no pressure.

These aren’t excuses, they’re reasons. I don’t really believe in excuses; it’s largely an irrelevant concept. It’s for an injured party to decide if I’m excused, not me, so “offering an excuse” just doesn’t make sense. I have reasons, but so does everyone.

Here’s the thing I feel a need to mention my reasons for:

I’ve let my self-disciplines go. T’ai chi, qigong, meditation, reiki, relaxation exercises, stretching, even listening to chamber music — I think about them, but I don’t do them. I still have my morning routine, or at least half of it… if that… OK, yeah, my self-disciplines are pretty much out the window.

Like medication, meditation only works if you use it.

After weeks, actually months, of coping and managing with (and concealing, because that’s what chronically ill people do) my rising instability and neural chaos, I’ve finally started skidding off the cliff.

As for the effect… I’m trying to come up with a good image.

Imagine a patch of sea. I’m in a well-rigged little sailboat, noodling along in a fair wind.
view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.
The oil of willpower is constantly sprinkled on the water’s surface, keeping it smooth and flat, easy to sail along on.

Underneath, the weedy patches pluck at the propeller and keel, the barnacles grow restive and start plucking back, the creatures swimming underneath get bigger and more voracious, and then they get big enough to break the surface now and then.

More oil! Keep sailing!

Those surface-breaking tiddlers get chased off by the real mondo beasts. The boat is getting sprayed by the monsters breeching.

Everything’s fine, I’m too busy to pay attention, la la la la la I’m not listening!

Also, the wind is acting up. The boom is starting to swing across at head-height.

Just a little farther now! More oil! /BOOM/ It’s OK, I’m fine, just a flesh wound!

Unbeknownst to me (since I’ve got the radio turned off, because I’m not listening), there was a string of earthquakes.

Since Banda Aceh and the meltdown at Fukijima, we’ve all learned about how earhquakes make waves. The shock of the quake trundles happily along the ocean floor until the ocean floor rises towards the shore. Then it sucks the landward water into itself and brings it all back as a tsunami.
water_tsunamiformation
If you’re afloat and listening, you move out to deep water, sail over the bump without losing stability, and you’re fine. If not… cue exciting sound track and hire George Clooney for the (possibly race- and gender-inappropriate) lead in another disaster movie.

There was a wave and I wasn’t in deep water. I didn’t handle it well; I was dysregulated and chaotic for days. Days. I was so dysregulated and chaotic I didn’t even see that that’s what I was, until it was pointed out to me — by the person who’d just gotten butt-kicked by an earthquake. That is not a fair burden to put on someone who’s already having trouble.

I have a personal meme about being good to friends. This is important for us spoonies (as chronically ill people sometimes call themselves.) My disease treats me like crap, but that isn’t a license for me to treat others like crap.

People who are protected from the true impact of this illness need to not get it at close range, or they run away (understandably) feeling as if they just got burned.

People who have this illness can understand a lot more, but are able to do much less.

I have to communicate appropriately. That’s my job in each relationship.

Basically, humans are emotionally fragile creatures and — whether I want to be judgmental about it or not — I can either respect that, keep the worst of my crap to myself, and have good relationships; or I can expect them to be as tough as me and to do so on my schedule, neglecting that they have to be as tough as themselves on their own schedule, and wind up isolated. Because I’m human too, I’m emotionally fragile enough that being isolated sucks.

I absolutely dropped my backlog of frustration and pain and rage on someone who was about the last to ever deserve it. That’s quite a breach of trust.

I stopped taking care of myself. As a result, I fkdup and hurt someone else. Now I have to own up (did that), figure it out (working on it), and do what needs to be done (re-integrate my practices) to prevent it ever happening again (and find a way to cue myself before I get bad: the missing piece.)

At that point, I’m allowed to make amends. It’s another tweak of my logic that I can’t make amends until I’m sure I won’t make the same mistake.

Being a spoonie is hard work. Part of that work is these time-intensive disciplines that seem like “oh how nice, you’re so cool, I wish I could do that” — but, as it turns out, are really not optional if I want to function.
Allie Brosch cartoon,
Why I need to do my disciplines: to stay out of this pit with Allie.

BTW, do you notice how people excuse themselves by saying, “I wish I could do that”? I listen for these words coming out of my own mouth. It’s a sure flag that I’m throwing the baby out with the bathwater. Oh, a little extra effort up front to save a whole lot of trouble later on? H’mmm…

We all screw up at times. The consequences for spoonies can be life-threatening, if the wrong relationship gets ruined. Handling these issues is part of “living anyway” in the face of profound disease. It’s harder to figure out and harder to repair the damage, because of the nature of central nervous system diseases. So, dear reader, I’ll try to stay on the right side of the line between washing dirty laundry and discussing a common issue here.

We often tell each other, “You can’t take care of others if you don’t take care of yourself.” That’s a tough one for caregiver personalities; we’d much rather take care of others than ourselves. However, it was through failing to take care of myself that I actively hurt another. That is a whole different octave of problem. I guess I’d better learn this lesson.

This is a lot of thinking for a breached boat. I can do it, though. I must. I’m still a long way from harbor.
boatsSBMarina_night

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A simple 3-step program for bearing the unbearable

It’s been an interesting summer. It’s good to be safe and well. And that’s all I want to say about it right now. On to more interesting things.

Those of us who have to bear the unbearable eventually learn that there’s no trick to it, no shortcuts, no secret wisdom. I’m sorry to say it, but there isn’t. It’s very simple — not easy, but simple.

There are just three things we have to do:

1. Keep breathing.
2. Put one foot in front of the other.
3. Keep going through the motions until we adapt to the New Normal.

That seems a bit telegraphic. Let me expand on these a little:

  1. Keep breathing.

    If we don’t do that, we’ve got nothing. Literally. Keep breathing. In fact, the better we breathe, the better we cope. (There’s a ton of science on this, if you care about that.) For those who need reminding how, try this:

    1. Ease your lower back, if you can. Gently drop your shoulders, which are probably up near your ears.
       
    2. Breathe in through your nose, if you can; if you can’t, stick your tongue out loosely between your open jaws and breathe through your mouth. (This opens the back of your throat — and releases clenched teeth.) Imagine the breath going down in front of your spine and into the bowl of your pelvis. This helps draw it in deeper, which is key to calming and strengthening your system.
       
    3. Breathe out naturally, or by gently exhaling through pursed lips — like blowing out a little candle. The pursed-lips one is great for tense moments and higher pain.

    Breathing well disrupts the “anxious/fight/flight” loop in the nervous system. It’s amazing. So simple, can’t beat the price, and no bad side-effects!

  2. Put one foot in front of the other.
     
    This means doing the work of survival:

    1. Do what it takes to get fresh air, water, food, clothing, and shelter, plus a phone and internet access. (In this isolated and far-flung age, phone and internet are essential elements of survival.) The safer and more effective, the better, but we can’t always be choosy.
       
    2. Keep our bills paid, if we can. If we can’t, find out how to get assistance with them. (This is one task where we need the phone and internet.)
       
    3. Put the minimum effective effort into maintaining our relationships. (More phone and internet.) We need to know who won’t fade away at the first real sign of trouble. We can’t expect much, though — a sad fact of life. Just stay in touch and see what happens.

      One way or another, we do find out who our real friends are.

  3. Keep going through the motions until we adapt to the New Normal.

    What that involves varies for each of us; you’ll know it when you see it starting to happen. Things you’ll probably notice include:

    • The work of survival shifts from “minimum survival” to meeting slightly higher expectations.
       
    • New relationships have begun to form, and old bonds to re-form, around the new realities.
       
    • The inevitable grief over what we’ve lost (abilities, opportunities, friends, and so on) begins to separate from the general mash of misery.

That’s actually a good sign.

When grief becomes distinct, it makes room for other things — relief, moments of joy, feelings of love, appreciation for what we now have.

If we keep breathing well, we can notice those other things better, and get closer to that quality of “radical acceptance” (which can work with or without hope) that makes even hellacious lives so much richer.

When in doubt, breathe. Then just go through the steps.

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Story: Shasta suggests a dog

This is another story improvised on the fly. One solution to boredom, when my studying-brain won’t work: I send it wandering, and it brings back souvenirs. I find that these mental excursions strengthen my mind and my focus when my studying-brain does work. (Jung might have been onto something, there.) It’s also very satisfying to feel capable of nothing, yet still produce something. I mean, wow, how cool is that?

Enjoy.

Shasta suggests a dog

Dark wings overhead. Are they angled up in a V, or flat across? Flat. Oh. Time to get the kids in.

She ran back towards the house, waving and barking. “Eagle! Eagle!” she snarled, when she was close enough to be understood.

Denny reacted quickly. He extended one gangly arm and snapped open two gates so that the pasture led straight into the barn. Then he followed Shasta, who had raced back up the pasture and was getting around behind the herd, shepherding them in. Danny called out the goats’ supper-call, but the goats didn’t take that well. They knew it wasn’t anywhere near suppertime!

Shasta‘s more direct approach got them going. She hustled and hassled the goats, coaxing here and pushing there, taking attitude from the harder-headed nannies and dishing it out in return. Fortunately, the billy was a lamb. Figuratively speaking.

Making soothing noises, Denny stood near the gate and persuaded the disgruntled herbivores, despite their complaining and nagging, to shuffle along and take a break in the barn.

Shasta sneezed after the last little goat, making it skip, jump up, and bounce off its mother’s side. Or, at least, giving it an excuse to.

Denny swung the barn door shut and sighed. The goats farted and burped, some of them eating their breakfast for lunch, settling in to hurry up and wait.

“So now we’ve got eagles,” Denny said. “I thought the hawks had that niche filled.”

“That pair of red-tails didn’t come back last year, and I saw a peregrine in the road yesterday,” Shasta muttered. “And now there’s baby goat,” she sighed.

Denny shrugged and walked back to the cabin. Shasta shuffled after, looking back moodily now and then.

“C’mon, old girl, let’s go in and have a cup of coffee.”

Coffee made and distributed, Denny sat down hard with a woof. Shasta flopped on the rug.

“I don’t know what to do about eagles,” Denny fretted.

Shasta blinked agreement.

There was a long silence.

“I know what,” said Shasta, pushing up on her hands. “Let’s get a dog.”

Denny looked at her with light slowly dawning. “You’ve got that friend,” he started.

Who breeds kuvasch,” Shasta finished.

Denny sank down, cross-quartering the idea for feasibility.

“Let’s call,” she said. “It can’t hurt to ask about it.”

Denny’s face didn’t change, but something in the air smelled of masculine resistance to asking.

“I’ll call,” Shasta rephrased. “Time I caught up with him anyway.”

She came back with a bag of peanuts and a grin. “He’s moving and has one pup left from the last litter,” she said, “so we get a deal, if it works out. We need the right kind of dog, because most of them don’t look up. Not normally. Not unless they’ve got a really tall owner, I guess. Kuvasch are enormous, and they’ll take on anything that attacks their flock, up, down, or sideways. They’re left in charge of herds for months at a time, they’re that good. We get to meet the puppy and try each other on, but in two weeks he’ll be gone, so he’s kind of on the fence about it.”

That was a long speech from Shasta.

Once Denny recovered from the verbosity, he gave his head a little shake and said, “He’s on the fence about it? What does that mean? Doesn’t he want to get rid of the dog?”

Shasta offered him the peanuts. “He’s a breeder. A real one. It’s not about unloading the dogs for a profit, it’s about spreading the kuvasch love and covering his expenses.” She chewed thoughtfully. “These are good peanuts,” she remarked. “Fresh.”

She examined the label while Denny absorbed that.

“Okay, so what’s so special about kuvasches?” he asked, making it an honest question, not snarking.

Shasta passed him her smart phone, with a search on “kuvasch” already done. “In rural Turkey, my parents had trouble finding childcare for me and my little brother. They were going to get a kuvasch, but then the neighbor’s sister came home from a bad marriage, and she became our nanny instead.” She shrugged. “Worked out for everyone. The dog was considered a reasonable solution, though.”

They went to meet the puppy three days later. He would scarcely even acknowledge Shasta‘s presence.

Half an hour later, after Denny had escorted a shell-shocked Shasta to the car and helped her to sit, he just sat and looked at her for a long moment.

Finally, she said, “He wouldn’t even look at me.” She turned to Denny. “How could he not even look at me? Dogs love me.” She turned away, sinking her chin. “I love dogs. Even that one, the rotten ratfink little bastidge.” She shook her head, tears trickling beside her nose. “I love dogs. I never met a dog who didn’t like me. I don’t understand.”

Worse still, in Denny’s mind, was the increasingly suspicious looks cast at Shasta by the breeder. Some friend. Even now, he was peering through the blinds, as Shasta wept over his churlish pup. (The sire and dam had been delighted with her, within the cat-like restraint typical of the breed. Only the pup had snubbed her.)

Denny gave up the pat-pat-there-there routine, cast a look of good riddance at the tacky suburban front of the breeder’s house, and drove off.

He was keeping his thoughts to himself, but they weren’t nice ones. He didn’t realize he was muttering nasty things under his breath, imagining the conversation he would have *liked* to have with the supercilious breeder.

Shasta noticed. She poked him.

He turned to her. “What is it?”

“You’re mutt–“

Denny checked the road just in time, swerved, ran the car off the road and stopped after several vaulting leaps over curbs, hummocks and undergrowth.

The car went pink-pink-pink. Denny and Shasta looked at each other with big eyes. Then they unbelted, cursed a bit as they got their feet under them, and tottered shakily back up to the road.

Yup. There was a green gym bag in the middle of the lane. And it was wiggling and whining.

Later, back at the cabin, Shasta, who was having the most talkative day of her adult life, puzzled some more. “Who would abandon such a beautiful pup?” She was on the rug with their new find, or new friend, stroking the drizzle of white that ran from nose to tummy through the short black fur. “She can’t be more than a few months old.”

The youngster looked at her worshippingly, as Shasta‘s hand traced the white drizzle again.

The next day, at the vet, Denny asked if the vet could identify the dog.

“Well, pit bull of some kind, I’d guess a thinking breed rather than a musclehead like most of them are.” The vet looked at the dog with her head cocked on one side, her fabulously chic lopsided fade blending up into a gorgeous cap of kinky curls. She was the sharpest vet for hundreds of miles, and even though she looked out of place in the country, there was something in her air — like the way she cocked her head — that made it impossible not to feel you’d found a good ally in troubled times.

“Hang on,” she said. “I’ll see if there’s a chip.”

There was.

“I have to look it up,” she said, clearly rather sorry.

Denny nodded.

She rattled at the keyboard for several minutes, shifting screens several times. Then she picked up the phone. “Mr. Mess? Hi, I’m the veterinarian at –“

She looked at the phone, surprised. She hit Redial, and began again. “Hi, Mr. Mess, I believe we were just disconnected. … Uh huh. Yes. … I’m sure you do, but I can hear you perfectly, so …. Why yes, it is about a dog with your chip in it. … Uh huh. … Uh huh. … Oh dear. … I didn’t hear about that. Oh, you did, did you? Well, I go home every night to the county sherif, and he never mentioned that call to me. … Oh, I see.”

Denny saw a vein start to throb in the side of her forehead.

“No, he would not have forgotten, because I’m the only forensic vet in the county. He would certainly have let me know. … Uh huh. … I see. … I think that would be best. … No, we are not a shelter, we’re a vet hospital. Howev-” she had clearly been interrupted, but was listening .. for another moment, anyway. “Let me say that there’s someone who might be interest –” Interrupted again.

The vet made eye contact with him, made a gesture to be quiet, and put the call on speakerphone. A grating male voice came out.

“– and then there’s the vet bills, vaccinations and so forth, plus five weeks of dog food,” the guy said, clearly compiling a bill to see how much he could get for the dog he’d abandoned for free. “And wear and tear on the furniture. And the makeup. That stupid bitch got into my wife’s Lancôme! Do you have any idea how much that crap costs? I’m seriously out of pocket here, and if someone wants that dog –“

She tried to intervene. “Mr. Mess, you misunder–“

He rode right over her. “And then there was the gas to take the dog out to where she could be found. That was not a short trip, you know.”

Denny had had enough. Shasta had long ago told him that she didn’t say much because she hated being interrupted or ignored, and men always interrupt women and most of them never listen.

He stepped up to the phone and, in his most alpha tones, rumbled, “Mr. Mess. This is Mr. Grill. If you’re interested in an accounting, then you should know that this dog has required treatment for damage due to her injuries on the road. As Dr. Smart stated, this is not a charity, it’s a veterinary hospital. If you are saying that, despite endangering and abandoning your pet, you still claim legal ownership, then we will be happy to send you a bill payable on receipt. It’s only fair to say that, even if your lawyer can persuade a judge to grant you everything you’ve listed, you’ll still owe us –” he stretched the word out — “thooooouuusands.”

He took a breath, then pulled on the velvet glove. “If, on the other hand, you relinquish all claim to the dog, then of course what happens after you abandoned it, illegally and in a manner which endangered both the animal and all traffic on that road, then of course this bill is not your problem. And, naturally, your expenses up to that point are yours and yours alone.”

There was a stage wait. Dr. Smart used the time to pick her jaw up off the floor and try to compose herself for speech.

There was a shaky little mumble, in which the word “relinquish” was barely distinguishable.

Denny needed to make this vaguely legal, so he added, “Would you like to conclude your business with Dr. Smart?”

Obliging gurgling sounds. Denny backed off the phone.

Dr. Smart said, very precisely, “Do I understand you to say that you relinquish all claim to this dog?”

Obliging hiss, probably a yes.

“And I can reassign ownership however I want?” She added briskly, “And speak up, I can barely hear you.”

“Sorry. Yes. Do whatever you want. She’s not mine anyway.” He muttered nastily, “Stupid black bitch.”

Dr. Smart reared back, took one look at Denny’s expression, and hung up.

She said to Denny, crossing her arms and leaning back slightly, “You do know she’s all right, don’t you? And this visit is not much more than a well-puppy checkup? And, although I appreciate the good intentions that made you run interference, I can’t support lying, and I and only I am in charge of what happens in my practice?”

Denny thought fast. He reached carefully over to point at one paw. “Um, I think she stubbed a toe. That was related to her being abandoned on the road. Right?” He spoke humbly. It was b.s., but it was obvious b.s., and he radiated apology.

She smiled, unbending just this once. “She certainly could have gotten much worse. Now take her home and teach her to watch the skies for eagles. Something tells me she’ll be good at that, in spite of the odds. I’ll update the microchip database for you.”

Denny reached into his pocket. “What do I owe?”

She smiled wryly at him. “Thooooouuusands. Now get home before Shasta starts worrying.”

Denny said, offhandedly, “Shasta never worries. She’s too sensible.”

The vet gave him a look, a very womanly and very smart Look. “She just doesn’t tell you about it. Good afternoon, Mr. Grill. And good driving.”

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Uncle Peter passes

There are no shortcuts with grief. There’s no trick to it. It just is. It’s just one part of life, different from joy or ecstasy or delight, but still one part of life, and as such, its real purpose is to be experienced.

I thought there was something more, and that I must be doing something wrong in the way I dealt with it. I don’t think so, though. I think it just is.

I was in deep meditation when an image came to me. A dear and excellent friend I meet in my dream-times was standing by me while I burned. He is a profoundly spiritual person, wise beyond reckoning, and always calm.

He was not calm this time. He looked at me in agony as I went up like a torch. There was nothing he could do. I burned away until my flesh was gone, then my skeleton tumbled, still burning, and soon there was nothing but ash.

He fell to his knees among my cooling remains, frantically sifting through the ashes for anything left of me, sobbing great wracking sobs that tore through him like bombs.

He found a strand of pearls, and from them made me a backbone. He and a great bird worked together to build me anew.

I asked him why he had cried. He said, “I didn’t know if we were going to get you back. I knew I might lose you.”

This most enlightened being, according to my subconscious, was torn up and bereft by his young friend’s death. The fact that he subsequently brought me back was not the point. At that time, he was bereaved, and it hurt like hell.

On reflection, I find that freeing. I thought there was something I should be doing differently about bereavement, but it turns out, what I have to do is simply feel it, and then get on with the work.

My beloved Uncle Peter died last weekend. He died painlessly, a stroke knocking him down and out between one breath and the next. Naturally, I keep wanting to call him, and running headlong into his absence. He had a terrible illness all his life, and to combat it, he created a personal life-structure of great simplicity, absolute rigidity, and total decency. He was the most forgiving, truly charitable person I ever met.

He lived in a poky little flat on the cheap side of town, lived on emergency rations and diner food, slept in a sleeping bag on an unwrapped mattress, and gave half of his respectable middle-class income, before taxes, to charities. His correspondence was filled with replies from his letters to legislators and the White House, doubtless written on half-sheets in his very shaky old-man’s cursive, since he was consistent in his habits, and that was how he wrote to me. He would probably see no appreciable difference between the importance of writing heartfelt encouragement to his niece or well-informed thoughts to the White House. To him, we are all under Heaven.

Uncle Peter was an exceptionally good and self-disciplined character, notwithstanding his twinkling share of the family sass. His humility and sincerity always were there, but I never really knew how humble and sincere he really was until after he died and the proof turned up. I can’t emulate him, but I can aim to be better in my own way because I know now how extraordinarily good it really is possible to be, and still live and breathe in this world.

He’ll always outshine me, morally, but I think of him as a Klieg light, illuminating the extent of what is possible. It’s much further than I thought.

I could talk to him about anything, the most humiliating and terrible events of this… interesting life, and his reaction was always the same, utterly sincere every time: “You deserve a lot of credit, you really do. You deserve a lot of credit for dealing with all this and still plugging along.”

I can hear his soft, husky baritone humming the words to me again, as I sit here with a break in my foot and a break in my heart.

And yet, I’m not frozen.

Bereavement is agony. I am in agony (and not just because of the broken foot.) But it’s okay. It’s right and natural. There’s no trick to it, and I’m not handling it wrong. I love Uncle Peter and I can weep for my selfish loss, and when each storm of tears passes, I can get on with the work.

I know he’d approve. He’d say, with perfect sincerity, “You deserve a lot of credit for dealing with all this and still just plugging along.” And he’d go on plugging along himself … shrugging off the most astonishing insults from life with steady calm, advising the silliest and the wisest with equal sincerity, supporting himself in hermetic simplicity, and going on giving.

My uncle. My beacon. How he shines.

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Autobiographita

I heard from a lovely friend of my youth, who wanted to know what I’ve been doing since Egypt. I tried to tell her. I realized that, embedded in my nutshell autobiography, were a lot of clues about why I blog and why I approach CRPS and its ghastly little friends with this sort of incisive determination seasoned with a laugh, a sort of functional contempt — an attitude of, “not going to let such a nasty little mindless rat-fink take any more of my life than required.” It goes way back. So here’s a little background…

I was born in Ankara, Turkey, though I nearly wasn’t born at all. My mother started bleeding well into her pregnancy. The protocol at the time was to get care from the Army base near Ankara. The Army doctor told her, “The baby’s dead. Come back on Monday and we’ll have it out.” Which, if it were true, would have killed my mother… but she didn’t think the baby was dead.

She asked around and found a Turkish doctor (her Turkish was pretty good) and he said, “The baby’s not dead, but you’re going to bed and will stay there until it’s born.” (She spent her time reading, smoking, and knitting, so I have something to blame for the asthma. I think it was all that knitting. The sweater made its way all the way down three children intact, so it was some very good knitting, but still… )

block image of a toddler's read sweater
A few months later, the wonderful Turkish doctor strolled into my mother’s hospital room, threw open the blinds, and said in Turkish, “A new day, a new baby!”
children-Versailles_petit_appartement_de_la_reine_web
As we left Turkey 3 years later, me toddling along with my little stuffie in one hand and my mother’s hand in the other, my older brother charging ahead of my Dad who was carrying the bags, and my younger brother a babe in arms, my mom was stopped on our way to the gate. It was the nurse from the Army hospital. She said, ever so kindly, “Oh Mrs. Aweigh, I remembered that you’d lost a baby. I’ve thought of you often, and I just wanted to know that you’re all right, now.”

My mother was very touched, but she had a plane to catch. She looked at me, looked at the nurse, looked at me, looked at the nurse, and said, as nicely as she could manage, “I’m fine, thank you,” then caught up with the rest of her family.

We survived 7 years Stateside, and left for Egypt in January of 1976. I consider that to be my humanization, as I never felt at home in New Jersey. That could come off as a cheap shot, but it’s the simple truth. I was all wrong there.

Cairo was a dream come true, only I never could have imagined being somewhere so rich — rich in history, rich in culture, rich in the textures of language, rich in feeling. I had finally come home.

I also discovered healing, taking in whatever sick or injured animals came my way and figuring out how to help them — kittens, pups, birds both wild and tame… I’d have gotten a donkey, if the neighbors would have let me.

Very young white donkey grazing cutely under palm trees.
This little colt is nearly as cute as the one I had my heart set on.

I was a dependent, however, and we weren’t allowed to stay in one place for more than two “tours”, totaling four and a half years. My folks went to Bangladesh, and my older brother and I went to high school in Massachusetts.

I was in rural Western Massachusetts, a slice of heaven on earth, especially if you grew up in a desert.

I wound up starting at a Seven Sisters college there. Left the ivory tower when school was interfering with my education (thus neatly acquiring the black sheepskin from my disreputable older brother, who had meanwhile cleaned up his act and gone to law school.)

I became a registered nurse after surviving a sailing trip from Cape Cod to the US Virgin Islands, taking the deep-water route outside Bermuda. The captain was a drug-addicted control freak and sexually inappropriate — none of which became apparent until we were signed on and nearly underweigh. (Now, I’d run anyway, and let her lawyers try and find me. I was younger then.)

She had been an ivory tower classmate of mine, an older student who had been locked up for most of her youth for being gay. She probably was perfectly sane to start with, but after being thrown off by parents and socialized in a nut house, nobody stands a chance. However, she was in her 30’s and living as an adult, so it was not ok.

Side note: queer people are somehow expected to be better than straight people, but that’s just unfair. People are people. Some straight people are really decent. Some queer people are really awful. And vice versa! Just let everyone be human, okay? Rant over.

Due to the intolerable hostility and tension aboard the boat, the nicest member of the crew developed a stomach ulcer, which hemmorhaged… so I started my first IV on the high seas and we had a day-long wait for the helicopter to air lift her. Why? Because the drug-addicted captain had plotted us as being about 80 miles landward of our actual position.

That bleeding ulcer saved us all!

We got safely to anchor in Tortola a few days later.
Panoramic view of Road Town harbor in the tropics
After a screaming row with the captain at 1 am over something irrelevant and stupid (not danger, not losing the dinghy, not being hit on, not being verbally abused day in and day out, but something totally stupid and irrelevant), I was kicked off the boat in a foreign country, with $5 and a tube of toothpaste in my pocket — which exploded as I lay sleeping on a picnic table at Pusser’s Landing, halving my resources and adding a mess.

My dad was posted to Jamaica at the time. I was allowed back on the boat to get my things and call him and arrange for my extrication. Nothing happened on weekends on the Islands in the late 1980’s, so I wound up being the house-guest of a truly kind and decent Island couple, who took in penniless waifs and strays simply in order to make the world a better place. I’m everlastingly grateful to Marina and Samuel. May all good things come to them.

After that, nursing school was a stroll.

I supported myself by tutoring in the school and splitting and hauling cordwood in the forest. However, between the time I started and the time I graduated, the economy in Massachusetts crashed, so I headed to Washington DC, where my State Department-associated family members and friends roosted.

My first nursing job was on an HIV unit, until it closed when visitors realized that most people there had, my goodness, HIV. (Sigh…) My second job was at DC General Emergency Dept, the only public hospital in one of the roughest cities in the country at the time. I learned a LOT.

I found my way back to rural Massachusetts, once I had the resume to get a good job in a lean market. I had first learned about herbs and energy healing there, and treated my illnesses and injuries with no health insurance from the time I left college through nearly all of my nursing career. (How ironic is it that it was so hard to get health insurance when I was a nurse?) I also took care of a couple of “incurable” things that patients of mine had, and cured them. I became a good empiricist. Home care nurses HAVE to get results, because there’s no backup.

Scientific-method science is very sound when it’s properly applied, but money and access distorts it too easily. Empirical-method science is the only kind that can actually tell you what works in the case of the individual.
While I prefer to understand how things work, I really only care WHETHER they work in a given case. I’m also well aware that, in medicine, at every point in history, we always think we know a lot — but, 10 or 20 or 100 years later, we look like idiots.

My favorite Star Trek clip of all time sums it up well:

A few years later, as the economy softened again and all but the worst jobs dried up, I allowed myself to be drawn to California by a nice face — which ditched me once we arrived. Not so nice.

I worked as a nurse and made my home in Central California until my immune system gave out, for no discernible reason. Shortly after the immune system pooped, my dad died, preventably (CPR would have clearly saved him, but he was in Egypt and swimming alone) and that was the final straw. Well, the penultimate straw…. Afterwards, my lungs shut down and my doctor was out of ideas. I’m pretty sure that acupuncture saved my life, because nothing else worked.
Acupuncture_chart_300px
Once I was well enough to do some career research and put together a portfolio, I was hired to document programming software, starting with an internship on the basis of the raw talent my supervisor saw in my work. I was quickly hired out of the internship. They had an onsite gym, and one of the loveliest running trails through the redwoods was right on my way to work, so I got into outstanding shape …

…And then the repetitive stress injuries hit.

A couple of surgeries later, with odd complications, I developed a horrific central AND peripheral nervous system disorder called Complex Regional Pain Syndrome, or CRPS. It took from 2001 to 2005 to get diagnosed, then fighting until 2012 to get disability dole (SSDI) and get worker’s compensation insurance off my back. (Call it another 3 near-death experiences. They so badly wanted me to just die, it was stunning to see what they’d do to try to effect that, short of hiring a hit man.) This gave me a lot of insight into the approaching-3rd-world status of US health care and its social administration.

The U.S. spends twice as much on care as other "civilized" countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that's not what the data show.
The U.S. spends twice as much on care as other “civilized” countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that’s not what the data show. This link takes you to the full story.

The nursing background and the information-architecture and explanatory experience have formed my current career, the (currently unpaid, but highly useful) job of explicating CRPS, its mechanisms and management, and how I adapt my world to function, in spite one of the most invisibly crippling diseases known to science.

I’ve been trying to think how to turn the plot arc of this life into a nice, suitable-for-polite-company little anecdote, but I broke my foot in my one non-affected limb last Friday (I am laughing with heartfelt irony as I write this) and am hugely motivated to simplify. For me, simplicity is most congruent with honesty and straightforwardness — less to remember. So I just spat it out.

This might explain a few things, among them my fascination with health and medical science, my very wide view of healing (belief is irrelevant; what matters is if it works for you), and why I have zero to negative patience for the arrogantly overeducated — they’ve nearly killed me a few too many times. Right from the start!

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"

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Ted’s Talks #2: “Relaxed” in Chinese

Ted Mancuso is famous for his enthusiastic Renaissance mind and the kinds of explanations it leads to. If that kind of thing doesn’t drive you up a tree, it’s enormously rewarding, because it can pay off for years.

It may not be immediately obvious how Chinese calligraphy, the evolution of the yin/yang symbol, James Joyce’s “The Dubliners”, a great general who died 2 thousand years ago, and the spinal root of a nerve, all relate to each other — let alone to the logic of a single move in t’ai chi.
puzzles_Chinese_Burr_305_imgbyMeronim
For him, they do.

Moreover, when he explains it, it makes perfect sense.
puzzles_Chinese_SixPartWoodKnot_Andreas.Roever
Compared to his ferally free discursiveness, my mind is almost tame. It helps me relax into training, because I don’t have to struggle with my own lateral-mindedness and force it into literal-mindedness — I can just say what I think and get instant yes/no/kinda, from a teacher who gets it. As I said to his wife once, “I LOVE that man.”

There’s a lot to think about in t’ai chi chuan, the way it’s taught at Ted’s academy. For that reason — and here I apologize to my fellow ADD-ers — this is a long piece, because I have to circle through a few related ideas to get to the point in a meaningful way.

One thing that’s becoming very clear to me is that, ideally, there is no such thing as an inattentive moment or an inactive body part. Even a part that’s held still, is still alive, still alert, still awake to the world and present in the mind.

Ideally.

Introducing Peng (however you spell it)

The concept of “peng” leads us closer to understanding this. If your native language is a Chinese language or French, your pronunciation is fine or nearly fine. If it’s not, you’re in trouble.

The word is pronounced with a very hard P and an English A that clearly came from the upper crust in the south of England. Its pronunciation is closest to “bong” in English, but, as a resident of a medical-marijuana state, I can’t write “bong” without inviting confusion, and as a longtime pain patient, I can’t write “pang” for much the same reason.

So, hard P, haughty A, and in here I’ll spell it pæng.

Pæng is often explained as a defensive or guarding force, but that’s an oversimplification. Ideally, pæng never leaves, except when displaced by a more specifically directed action.

Pæng makes directed action a lot faster, too, because of the way it creates potential space in any direction, which is then easy for you to fill. Much more efficient than the usual wind-up we usually find ourselves doing before initiating a directed action.
(This Marx Brothers compilation is hypnotic, to the point of being kinda creepy. If you’re triggered by casual violence, skip it.)

Pæng is the force you use to define the space you inhabit. Since you’re always in your own space, it makes sense to maintain pæng. Pæng is the ground state of each limb “at rest” (a relative term.)

Ideally.

This is what we work towards, anyway.

A relevant discussion of expertise

I’ve noticed, for much of my life, how the true experts in any movement (martial arts, dancing, rock climbing, surgery) don’t get in their own way. This is a lot easier said than done.

There’s a reason why true excellence is generally pegged at 10 years of experience. I figure it takes a couple of years to learn what’s supposed to happen, and then it takes most of the rest of the time to unlearn the reflexes that get in the way of achieving that. That’s my theory. Unlearning is that hard.

We lack faith in ourselves, at a subtle level, and it creates the interferences of hesitation, fidgets, and engaging the wrong efforts, then having to disengage them and reassess, then go forward again, in a sort of ongoing, half-unconscious dance towards accomplishing the goal.

Ted says that people come to his classes hoping to come in as they are and go straight on to excellence, and have to come to terms with the need to back up to roughly when they learned to walk/run really well and go on from there.
tai-chi-path

It’s part of his particular genius that he doesn’t try to get each person to unlearn their ways, he simply creates what he calls a shadow posture, and I call a parallel posture (though we mean the same thing), so that class time and practice time are spent in this new and evolving structure that creates the foundation for excellence to be built on. It’s up to you whether you go into that space the rest of the time, but it’s pretty hard to resist, because it’s delightful.

That very delightfulness is unnerving. I’ve had to integrate a lot to be able to accept something so alien to my experience of the last 14… no, actually, 40-odd years. It’s just so foreign, so antipathetic to what I have known for so long. Fortunately, I have ways of dealing with that…

My style of learning something profound goes like this:

  1. I charge in for a bit, throwing myself at it like spaghetti at the wall.
  2. Then, when my body-mind has reached a saturation point of new information and everything inside is sitting up and screaming, “WTH??”, I sit back for awhile to rethink and mull the new ideas involved in these skills.
  3. I feel and learn how they filter down and across and through every applicable aspect of life, and I have to semi-consciously work to let those old assumptions shift, evolve, and change.
  4. Then, when my mind has reached a saturation point of digested information, I can move back into activity, usually with a significant bump up to a new level.

Winter is a good time to digest, and with the waxing days I’m getting impatient and ready to bump up. I’m thorough, and I give full credit to my subconscious processes and the importance of mental digestion. When it comes to my learning style, I’m fairly relaxed…

We’re not relaxed in our tasks until we’re expert. I wonder if we can accelerate towards expertness by learning to relax in our tasks. There’s an empowering thought.

Expert surgeons have far better outcomes, partly because their lack of irrelevant motion means that they leave less trauma behind. Their scalpels don’t make any pointless cuts, their hands don’t jostle any irrelevant flesh, there simply isn’t anything done under the skin that isn’t directed towards the goal. There is not a wasted motion, and not a wasted moment.

They don’t dither; they do, and they do it decisively and cleanly. If something turns out a bit different from what they expect, they go with it — no holding back, no denial, just accept, redirect, and move on. They don’t interfere with themselves, and thus they don’t interfere with the work.

The truly expert surgeon, a few of which I’ve been privileged to see, is a breathing artwork of purposeful action and focused intent.

Martial arts is a bit more accessible to most people, so let me show you a popular and priceless example of an expert martial artist next to a couple of wonderful actors who can’t help getting in their own way. Here is the famous fight scene between Darth Maul and the two heroic Jedi, Qui Gon and a young Obi-Wan Kenobi:
All rights to this film belong to 20th Century Fox, in case someone forgets.

I included the whole fight scene. (You’re welcome, Marie P. and Steven R.) If you’re impatient, skip to the last 2 minutes. You’ll notice that the only reason the bad guy lost was a moment of inattention. He moves with effortless elegance, decisiveness, and power, while the Jedi are fighting their own bodies with every move, hulking their shoulders and flexing like mad. It looks exhausting! It took a lot of Lucasfilm to spin the contest out past the first minute, the imbalance of skill is so great.

Darth Maul is relaxed. It makes him effective. Qui Gon and Obi-Wan are not. They’re braced and clunky, utterly without pæng.

All right, given that this force (as it were) of pæng both protects space and creates space, what the heck is it, exactly?

Very simple. Not easy, but simple.

Pæng is the yielding resistance of a tree branch or a length of spring steel, or, for that matter, of a good dancer’s arms.

You push one part of the branch, and the whole bough may sway, but its balance is undisturbed. You push your good dance partner’s hand, but that doesn’t just move her hand — her whole frame absorbs and responds to your push with a graceful springy motion and she rotates, balanced over her own feet, as far as your push goes (backwards and in high heels, most likely. Be impressed.)

That is the force called pæng.

Let’s return to the tree branch for a moment. It allows us to extend the analogy without special training.

Take a good look at an oak, maple, or a eucalyptus tree. Look at a branch from its tip to the root of the tree. You can always follow a single, sinuous line from tip to root.

eucalyptus tree with lines showing the shape of each branch's support.
It’s the same tree, mirrored across. The lines are drawn in on the right-hand image.

That tree holds the branch up from root to tip, without any muscles at all. It lifts it from underneath its feet, up its trunk, and floats it out into space from there. This is how the force flows. Not muscular at all, but very, very strong. It’s pure physics.

The tree also holds the branch outward with curves that act as support structures (like the curvilinear welts in plastic packaging, to keep the package from being flattened), in order to make the most of the space.

Mmm... I wonder if they're gluten free?
Mmm… I wonder if they’re gluten free?

Bounce a branch lightly. Observe the change in the movement. It bounces more near the point of impact, and as the springiness absorbs the motion, it moves less the closer it gets to the spine. I mean trunk. Did I say spine? I meant trunk. Of the tree. In this case.

This calm-but-alive springiness, this resistance without strain, lifting up from the root through the trunk, opening without pushing, pressing without squeezing, all at the same time, is pæng: the whole branch, from trunk to leaftip, is awake all the time, ready to play with the wind all the time, ready to soak up the raindrops all the time, connected through the trunk or stem to its root all the time. Every touch on the way is received and understood, and responded to naturally. It is always alive with this springy yet relaxed, rooted yet responsive energy.

In humans, pæng can be modulated. This is part of the martial aspect of t’ai chi: intensify pæng to ward off an attack or prepare for one, shift pæng to draw the opponent, release pæng to snap into an attack, but always, always have pæng as your ground state. It gives you a safe, structured space to work from.

Ideally. That’w what we work towards.

Now that we’ve mulled the nature of pæng, we’re a bit closer to understanding what Ted and the t’ai chi chuan classics mean when they use the word “relaxed.” In our extreme-adoring Northern/Western Hemisphere culture, “relaxed” is the opposite of “tensed”, or even “stressed.” A certain floppiness comes to mind, even a resistance to being vertical.
Tense:

   []
   |
   |
   |
   L

Relaxed (Western style):


   8)________|

A “relaxed” body, in this sense, is not ready to move — far from it. It probably wants another drink!

The ancient Chinese traditions cultivate the middle way, not extremes.

As it happens, this is an excellent approach for many people with central nervous system dysfunctions, because our disrupted systems are hardwired to charge wildly between extremes. The more we strengthen our access to the middle ground, the more stable our central nervous systems become, and the better we can get.

Simple. Not easy.

With this in mind, we have to repurpose the word “relaxed” so it’s not a synonym for “floppy”, but a distinctly different term that describes the useful middle ground between “floppy” and “tense.”

   Tense: []    Relaxed: 0     Floppy:
          |            ( | )
          |             }|{
          |             / \
          L            /   \            8)_________|

It’s easy to see, even in these keyboard-figures, which level of energy makes it easiest to move in a useful way, doesn’t it?

How do you want your surgeon to be, heaven forbid you ever need one? How do you want to move when you dance?

Darth Maul seems quite a bit different now, doesn’t he? Actually, he does remind me of a couple of doctors I’ve worked with…

Shortly after I drafted this, Ted saw me struggling through a leg-intensive exercise. He said, with sympathy, “I see why you find these leg exercises so exhausting. Your leg muscles are fighting with each other in every direction.”

I went away and thought it over.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Well, of course they were fighting each other in every direction. This was the setup:

  1. When I was 10, I got the silly idea that I should have an adult arch to my foot, so I began to supinate.
  2. That led to my thigh muscles developing lopsidedly, and since I played varsity soccer in high school and ran in my 20’s, they developed lopsidedly a fair bit.
  3. That led to my kneecaps tracking wrong, and me losing the cartilage under my kneecaps. (I used to think that hurt. Cute!) Ted steered me away from his t’ai chi class in the 1990’s because I was so nervous about my knee pain (really cute!)… so I took his shaolin kung fu class instead.

So, over 15 years later… I’m far too frail for serious kung fu and Ted has become a breathtakingly subtle teacher of t’ai chi; I’ve gone through several rounds of posture training (round 1, round 2, round 3); and, now that the pieces are finally coming together (big clue: if it bears weight, it affects your posture), I’ve been working like mad to rectify my knees.

They still pull to the outside, from the habits laid in by my childhood efforts to lift my arch, and my knees hurt like blazes when they bend. To manage that, I practiced pulling them to the inside, but not directly — kind of rolling my lower thigh muscles inside and upward at the same time… While my habitual muscle pattern pulls outward and up.

Weren’t we just watching Liam Neeson and Ewan Macgregor do something very similar (if a lot more cutely)? Muscles fighting each other in every direction, literally at every turn?
jedifighting
The fighting was simply wrong. …And I don’t mean in the movie.

That’s no way for a body to behave, fighting itself. I don’t want my body to fight itself.

I didn’t see that changing the fighting would work, because there would still be fighting.

Finally, I straightened up. I said to myself, in tones of firm parental authority, “Knee, do it right. I’m not having you fight about it. I’m going to relax — unwind every muscle and make them stand down and wait for orders. You’re going to do it right the first time, because nothing is interfering and nothing is asleep. It is … relaxed.” Pæng.

I lifted my leg and put my foot down. It felt different.

I bent my knee. It was fine, absolutely fine.

I tried the exercise. The thing was completely painless, and floatingly easy.

Buyer beware — it’s a process. For me, the issues are simple, although annoyingly tricky to work with:

  • My levels of tension and awareness, not to mention relaxation and attention (those are 4 completely different concepts, you’ll notice), change so much from day to day.
  • I still have nearly 40 years of walking habits that I’m building an alternative to.
  • I still have to take lip from my knees now and then, which slows me down for recovery, and I have to mentally go down there and tell everyone to stop arguing and let me mend.

It’s a process. However, it’s well begun. It’s all about relaxing, in this special sense of pæng.

Cats are masters of pæng  :)
Cats are masters of pæng 🙂

It’s like this stuff works …
Who knew?
Who knew?

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Oh look! I’ve adapted!

I used to be punctual, meaning, 3-10 minutes early. I used to be relentlessly diligent. I used to be cast-iron reliable. (I worked hard to acquire those skills, after drifting through my first couple of decades with my energy and attention set to “simmer.”)

These were so much a part of my identity that, after a memorable lunch with 12 engineers and one writer (me), they passed me the bill to calculate. I didn’t know whether to laugh or cry, but I scolded them and passed it back. CRPS had already set in and numbers tended to cartwheel in front of my eyes, but I didn’t tell them that.

My care providers know they have to call me to confirm the day before an appointment, because even with the calendar in my phone and on the wall, and now with a weekly dry-erase scheduler on the fridge, I need the added sensory input to make sure the other 3 are correct and, above all, to give my brain one more hook to the info.

Reliable, remember? I’ve still got a lot of identity tied up in being reliable, and it takes a LOT more work, but it’s important enough to me to do, and ask for a little practical assistance with.

Today, I looked at the clock when I woke up and thought, “Hour and a half to appointment time. OK.”

As I set up my tea, I thought, “I’ll let J sleep. He’d only have half an hour to get ready and I don’t want to spoil his morning.”

As I washed and dressed, I thought, “Excellent, time to read a little while I have my tea, fruit and morning pillage.” Can’t just call them pills. Definitely pillage. I hope to lay waste to CRPS as it tries to lay waste to me, so that could go either way.

En route to my appointment, I found a whopping case of vehicular atherosclerosis — a traffic jam, in a country stretch of highway. Very odd. The clock read 9:50, and I realized I was going to be late gor my appointment.

Diligently, I picked up my phone and made an illegal call to notify Dr. Resneck that I’d be late.

She said, in slightly worried tones, “But… your appointment isn’t until 11.”

Not missing a beat, I said, “Excellent! I’ll pull over and read for an hour. That’ll be nice!”

In response to the still-shocky silence, I added, “Well, an hour early is better than an hour late, isn’t it! See you soon!” And hung up.

I realized that my brain had simply done an ER-worthy triage — is anyone hurt? Anything made worse? No? Fine! — and moved straight on to a good Plan B. I’m reading Jodi Taylor, and St Mary’s is about to be incinerated and I’m dying to know what happens. And yes, I’ve read it before, though not for awhile.

If I were a clinician caring for me, I’d note this incident down and give a worried little sigh. It’s not good, just not very good.

But I have learned, in this brutal school of my life with this ratfink stinker of a disease, that I CAN’T WORRY ABOUT THESE THINGS. From the standpoint of the person doing this, I am really pleased with my handling of it.

Anyone hurt? Anything worse because of my mistake? No? Fine! Now let’s advance some other agenda I’ve got! Because as long as the first two questions come up negative, IT’S OKAY. I am not a failure, oddly enough. I’m just not. I get a free hour, and that’s pure bonus!

Off to read my book. Enjoy the rest of your day, and remember that blessings can come in heavy disguise.

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Ted’s Talks #1: know yourself best

A fellow martial arts teacher/competition judge once barked at Ted Mancuso, “None of your students move like you!”

Ted blinked, barked back “Good!” and walked away, shaking his head.

He refuses to model a move more than the essential minimum, and is no great fan of the mirror, either. However, he will coach the most clueless student with bottomless patience, week after week, as long as they don’t give up.

His model of teaching is based on the (all too rare) assumption that each of us should be the person most aware of, and most in charge of, our own bodies.

… I know, right?

If you follow the logic through, this implies that the correct structure for moving through, say, Fair/Jade Lady Weaves Shuttle (which is an upward block snappily followed by a nose break, which tells you something about those names)… as I was saying, the most effective and correct structure for that move is going to vary from one body to the next. The correct structure for HIS configuration of bones, ligaments, muscles, and chemistry is not going to be the most correct (or even passable) structure for MY configuration, or yours, or anyone else’s.

Ted doesn’t just say that, he bases his whole approach on it, from start to finish. His crogglingly refined sense of how to read that on others is probably another article, or rather book. Gifted pedagogue, yes.

In the long years of wrestling to take back control of my body from CRPS and all its ghastly little friends, I’ve taken PT for months, done intensive massage therapy ditto, and been overdosed on nearly every class of drug used to treat it — except the ones I flatly refused.

This inward/martial training with Ted is the first one that not only requires physical self-awareness, but actually helps me learn that awareness from the inside out, rather than passively requiring me to learn it from the outside in.

Once I gave permission for him to go to town on my structure, it would be tempting to say that he’s become merciless. That would be totally wrong, in both senses. He lives in an ocean consisting of equal proportions of mercy, humor, precision, and a degree of awareness of others that seems uncanny until you reflect that he’s been working on that since I could walk. So, yeah, he’s got that healer’s mercy that means he’ll do what’s right for you even if it sucks right now.

I’m now on the second round of fighting with my low back and hips for control of my spine, and it really sucks right now.

I am tired of trying to unlearn 40-odd years worth of faulty structure from the inside; it hurts, and more pain is tediously wearing.

So I found a massage therapist who suits my needs, and went to line up a series of sessions.

First available time?

3 weeks out.

… I know, right?

I came for a hot tub and chiropractic adjustment (which I believe is within spec for Ted’s style, given the intransigence of bony tissue and the ubiquity of hot water) and sat there letting my knotted thoughts and knotted muscles melt… until I smacked my forehead and started to laugh.

Why is my low spine putting up such a fight? Why has it kept falling back into the same darn reef-knots, despite the PT and massage and Round 1 of this struggle last year and so on?

Right.

It’s obvious, now that I think about it. There are no shortcuts! I have to learn how to identify, unravel, and rebuild those structures from the inside out. That’s the whole point. That’s why I undertook this training. This is exactly how it’s supposed to happen, aches and all.

This is me, having another laugh at my own expense, releasing one last sigh, and figuring out how to do this from the inside.

I love that teacher. I don’t exactly like him a lot right now, but that’s okay.

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The Bean Dip Response, companion to the Spoon Theory

Those of us with crazy-bad illnesses appreciate the stroke of genius from Christine Miserandino, who originated the Spoon Theory to explain what it takes to get through the day.

For the most part, though, we shouldn’t have to explain much. Wouldn’t it be nice if everyone could get that memo?

To that end, here is a great article by family therapist and parent counselor Joanne Ketch on parenting boundaries, using the Bean Dip Response: http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

With her permission and kind support, I’ve revised her article to reflect the realities of the chronically or severely ill. Please feel free to print out/pass on, with credit to her embedded as it is in this text.

Here’s my version…

Health Management Choices – Boundaries

A long time ago, as a developing patient educator, I found many chronic patients uncomfortable and frustrated with unsolicited advice – or inadvertently soliciting advice and then feeling uncomfortable with the discussion that followed.

Eventually, I read this great article on boundaries that eventually become known as “The Bean Dip Response”, “Pass the Bean Dip”, or even used as a verb: “bean dip” someone.

I rewrote the article from the perspective of a chronically ill, alternative-using or drug-disabled patient (one who can’t use common meds for the condition because of uselessness or devastating side-effects) – but the principles are transferrable to any constellation of health management choices.

The Bean Dip Response is best used when you don’t need to defend or don’t wish to engage with a person over a health management choice. If you are discussing issues with a person and you welcome their feedback, the Bean Dip Response is not needed.

I’ve found that chronic patients may confuse boundaries while trying to convince someone of the rightness of their choices. The best thing is to assert your boundary, rather than defend your choice. Your choice needs no defense.

Health management choices should be on a “need to know” basis. Most people don’t “need to know”. Since medical information is highly confidential, it’s NOT incumbent on you to explain yourself to those who don’t need to know. Those who need to know are essentially you, your doctors/providers, and your designated decision-maker for when you can’t make your own decisions.

If anyone else asks, "How are you sleeping?"
Answer: Great! Thanks for asking! Want some bean dip?

"Are you sure you should get picked up every time your legs flare?"
Answer: “Yes! Thank you! Want some bean dip?"

"When do you plan to wean off those meds?"
Answer: "When it's time. Thanks! Want some bean dip?"

"You should use my aunt's hairdresser's physiotherapist's product. It cleared up her [symptom du jour] in two weeks."
Answer: "That's great! I'm happy for her. Want some bean dip?"

Now, with some people you will need to set firm boundaries. The offer of bean dip won’t be sufficient to redirect them [I can’t imagine why not. -ed.] They either don’t respond to gentle redirection or they have emotion tied to the issue and a desire to “go there” more deeply. You may be able to anticipate this – if it’s a pattern of intrusion, for example, which you’ve seen in other circumstances.

In such a case, a stronger “Bean Dip” response may be needed. In these cases, the redirect will need to be backed up with action (like hanging up, leaving the room, or even unfriending them).

Remember, boundaries are not about forcing another person to comply. You cannot “do” that. Boundaries are about what YOU will do or not do. You are the person you own. You don’t own them and they don’t own you.

Practice kind but firm responses: "I know you love me and want to help. I am so glad. My health choices have been researched and made. I won't discuss it again.”

Don’t confuse setting boundaries with trying to convince someone of the rightness of your choices. It’s a common (and understandable) desire to present the same information that led you to your choices. The problem with that in dealing with a person who has boundary issues is that engaging with content invites discussion. (Also, different people’s minds work in different ways, so your train of thought may make no sense at all to them. Wasted effort all around.)

Chronic patients often struggle with this.

The boundary is that no one else has an inherent right to tell you how to take care of yourself.

You set boundaries by doing the above: acknowledging what they said and redirecting.

Where the chronically ill may invite problems is by citing authors, studies and sites to “defend” themselves. Each time you do so, you create more time for discussion and rebuttal and send the message that your decisions are up for debate.

Don’t defend your choices beyond generalities, and then only once or twice. “My doctor is in support of my choices. Want some bean dip?” Or maybe, “Well, this is my decision. Want some bean dip?”

If necessary, look them in the eye and say simply, “I want us to have a good relationship. I want to enjoy my time with you. I’ll take care of me, so that we both can make the most of our time together. Let’s not discuss this anymore. If you bring it up again, I will have to ask you to leave.”

Finally, an important corollary to the “Bean Dip Response” is reciprocity. Once again, the content of your choices should not dictate the interaction.

You may be totally, and correctly, convinced that you should be able to determine your own activity, medication, and supplementation regime; never be left to “cry it out”; and should be allowed to follow your own weaning path, if any.

But, if you post those opinions on Facebook (or communicate them in other ways), you invite (and therefore solicit) feedback and advice. Post accordingly and respond to comments with that in mind. You need to give the “other side” the same respect that you expect to receive.

Credit for original: Joanne Ketch, MA, LPC, LMFTa, LCDC
http://www.joanneketch.com/ParentingChoiceBoundaries.en.html

For those of us who are chronically ill, there are people we DO need to explain ourselves to. However, these are mostly highly educated people with specialist training, and that makes it a short list indeed.

Our loved ones may believe they want to understand, but, as my mother finally admitted, “I don’t think I really do want to understand what you’re going through. I couldn’t stand to know how much pain you’re in and how rotten you feel all the time. It would drive me crazy, knowing that.”

But, hoo boy, does she ever respect my boundaries! That’s worth the world. It makes everything open and clear between us, and our current relationship reflects that.

When someone confesses their limits to me, I take it as a gift. They have told me how to protect our relationship and how to move forward with it. I appreciate that. With that subject opened, we can move on to discuss how, or if, they can connect with me in a way that works for us both. This is priceless information. I’m glad my mother had the courage to open that can of worms, because then it got very manageable very quickly.

For an ever-changing kaleidescope of visual delight, check out my Mom’s photography from all around the world at http://jldtifft.com/

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“Best Christmas in years”

J’s experience of the holiday of loving and giving was one of manipulating and threatening for a long time. He doesn’t say that, of course; it takes detective work to glean the data from the clues he drops. He doesn’t reflect on the past, but it does tend to cast shadows into his present.

After last year, when I’d kept the holiday out of our home and opened my gifts in private, he said — to my surprise — that he’d like maybe a little bit of decoration and festivity next year. Not the commercial garbage, just a little light.

This year, I put redwood swags tied with burlap bows against the fence and draped a green swag of redwood across the trunk outside.

I picked up redwood cones, which are tiny and exquisite. I dipped them in penetrating epoxy to make them sturdy and non-porous. Then I painted the tips in copper or gold paint, and where I had twin cones on a single twig, I made one of each.
redwood-cones_decorated
On Christmas Eve, I made lamb kofta that turned out better than any I’ve had in years. It was the first solid food J had had in almost 2 weeks, and he ate half of it in a few hours. It went down well.

We’d gotten new flannel sheets. I dressed the bed in a brighter, perkier version of Black Watch plaid, fresh and soft and soothing.

That was enough preparation for me, clobbered by the worst humdinger of a cold I’ve had in years.

Then Christmas day dawned, sparklingly bright and crisp. Once he’d had coffee and I’d had tea, I made blueberry pancakes (recipe below) which he told me were the best I’d ever made.

We noodled around the house and yard all day, warm and content. I opened my gifts in the living room (he’d gotten and opened his earlier.)

I made a leopard-print minkee shawl for his dog, who has been swanning around ever since, clearly feeling as breathtakingly stylish as a modern Grace Kelly.
dog_shonie_elegant
The satellite TV was out, but I figured out how to connect my computer to the new TV and stream Netflix on our gorgeous HD screen.

Like many people, he has deep scars from mainstream religion. When he started climbing down that rabbit hole, I told him the history of the Christmas holiday, which dates back thousands of years in Europe. People collected under the largest available roof for the armpit of winter, keeping warm and entertaining each other, and those who had more shared with those who had less. Everyone got through better together than they would have alone, and familial and social bonds were reconfirmed ahead of another year of hard, often lonely labor. When the Church moved into Europe, they moved the celebration of their Savior’s birth from springtime to a few days after Yule, because the good ones loved the season of warmth and sharing and the scheming ones could spot a good opportunity. (I told him that the 3-day margin gave people time to sober up from the Solstice bonfires and clean up in time for Church.)

That isn’t about faith, just about historical data. Belief creates its own reality, and I respectfully support everyone’s right to choose and structure their own beliefs. All honest forms of worship make the world better, in my view. Amen.

The history lesson took the sting out of Christmas, and the last detail made him laugh.

After a week of prostration with that awful cold, he actually got up and washed all the dishes. The kitchen was sparkling by bedtime. It’s the little things that really tell you.

From about dusk on, J kept saying, “This is the best Christmas I’ve had in years.”

Something tells me they’ll get even better.

Recipes

These are Isy Recipes, so they don’t have too many ingredients or too many steps, and every ingredient has something fabulously useful about it.

Pain-cutting Pancakes

2 bananas, mashed
2 eggs, beaten
1/4 cup flaxseed, ground
1/4 coarse raw sugar
1/4 package Boreal blueberries

Beat everything together and let it sit while the pan heats to medium heat or slightly lower. These cook low and slow, not like flour pancakes.

Pour the oil off the top of your almond butter into the pan. If you don’t have that, use safflower oil. Either one makes a wonderful crispy edge.

Spoon the batter into the pan about 3-3.5 inches (5-6 cm) across and up to 1/4 inch (.75 cm) thick. If you’re using the almond oil, they may fizzle and make white foam with a lovely scent. Cover the pan. It takes at least 5-7 minutes for them to cook well enough to flip in one piece. Cook the other side for slightly less time. Serve with Kerrygold butter and non-osmosed maple syrup, if possible 🙂

Kofta Kebab

1 pound (2.2 kg) ground lamb
2 eggs
~2 tsp natural mustard
2 handfuls of finely chopped spinach (I couldn’t find the parsley)
Spices:
Lots of ground cumin
black pepper
1 tablespoon (scant palmful) basil
2-3 tablespoons parsley (I found it)

Mix everything well with your clean hands. Heat 1/4 inch (.5 cm) of grapeseed or olive oil in a frying pan over medium high heat, hot but not smoking. As the oil heats, take small handfuls of meat and squish them into a lozenge shape, laying them out on a plate or board. Drop them into the pan, one batch at a time. If you made the lozenge shape rolly-polly enough, you can roll the kebabs over in the pan. Only turn them once; more often and the meat gets tough.

When they are crispy gorgeous dark amber, scoop them out and lay them on brown paper to drain. Eat with your fingers if you can’t wait, like me, or with ketchup if you’re a total yahoo, like J.

Lamb has lots of zinc, which is good for fighting off viral infections.

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