CRPS tends to demineralize the bones, creating a sort of Swiss-cheese-looking osteoporosis. I’ve held that at bay so far, and I believe it relates to jumping on the vitamin D bandwagon long before I saw it in the news — I followed a tip from a friend without CRPS, who found that it kept her teeth from chipping. Well, I know why teeth chip — demineralization. So I started on the D3 at the first sign of soft teeth, years ago.
The other main thing to hold back osteoporosis is weight-bearing exercise.
I am absolutely certain that the old nursing/physiotherapy trope, “Use it or lose it,” is nearly always true.
Mind you, there are no guarantees.
Another trope: absolutist statements are always flawed.
Preferring to stack the oddds in my favor, I’ve stayed active and weightbearing despite considerable slumps, occasional backslides, and the occasional wish to throw myself off a bridge rather than mobilize.
So here I am with a broken foot, bone pain for the very first time since I got CRPS, and camping in our trailer as a diversion and a coping measure for being in between homes right now. (And that’s another looooong story.)
The second week post-fracture was interesting, as I figured out how to stay mobile. In this third week, I’ve learned that I should probably spend more time sitting down with my leg up.
Lay-people keep asking where my cast is. Casting slows healing. I have CRPS, which means my healing is already slowed considerably. Do I really need to slow it further? Hard to see an upside to that.
The point of casting is immobilization, and there are other, safer, saner ways to do that. Jamming a hard surface against a soft and variably swelling one doesn’t strike me as the best way to stabilize a small but essential bone. There’s nothing quite as rational as just leaving the darn thing COMPLETELY ALONE. Especially when even the touch of the sheet is unbearable … because, oh yeah, I’ve got CRPS.
The single biggest cause of nonhealing bones is overuse. Even I, type A-ish as I might sometimes be, can’t think of anything stupider and more wooly-headed than putting any weight or stress on a broken foot. Those are small bones with the most fundamental job in the whole skeleton. When they go wrong, it’s not good!
At first, I didn’t even put a sock on it — just a light lady’s scarf at times (a gift from a healer friend), gently wrapped around to keep the breeze off — or, as I thought of it, the burning blast from hell.
Recently, I graduated to a loose, bright red fleece sleeve with the end stapled shut (breeze…) Now that the swelling is down enough, I can wear the “walking” (no, that’s not a sensible suggestion) shoe…
… to minimize the effects of the occasional little bumps and jostles the foot gets as I dart around on my stunning little knee-walker.
I can’t use the knee-walker in the trailer, too close to the car, on rough terrain, or when the bruising on my shin gets too bad. So the moves I developed in my first week are getting more refined.
Major problem… Despite an eating pattern averaging 1,450 kcal a day of steamed greens, lean protein, and highest-quality fats, I weigh 200 pounds (90 kg.) So,
every time I lever myself up from the floor on one foot .. that’s 200 pounds going through one knee bent double, on a frame designed for less than 150.
Every time I hop, even in my scoop-bottomed sneakers, that’s 200# — plus velocity — landing on that leg each time.
I do my best to control my velocity and distribute the load through the whole spring-structure of the leg, but … 200 pounds. I thought my Achilles tendon was going to pop off my heel yesterday.
Every time I brace myself with my hands on a rail or counter as I swing or scoot along, that’s 3 digits of poundage on my CRPS’d carpal tunnels.
And then there’s getting in or out of the trailer I’m living in, with its two and a half foot rise… makes me feel faint to think of it.
The t’ai chi is invaluable. It’s all about the curves. Everything, in the end, is embodied in the swooping lines of the taiji symbol.
I can get a lot more leverage than should be humanly possible out of a curving or looping wave of my hand — a Roll-sideways rather than Roll-back, for my fellow t’ai chi-kans.
I propel myself from the ground up onto my foot by sending energy down from my back in a spiral into the floor, and letting that “imaginary” spring push me up. Go Dragon!
I settle onto the toilet while keeping one foot aloft by using a really cool sort of 3-D scissor-swoop with my two arms — Part Wild Horse’s Mane, but with less tilting and more curve.
The pain is, well, beyond words, so let’s pass on. The level of dependency is, for me, even worse. The hardest part of all, though, was giving up chocolate. It interferes with calcium absorption. I did say about not slowing healing, right?
I’m grateful beyond words for the t’ai chi moves. They save me, in a very physical, literal sense.
While we may find, in impossible situations, that we are a little superhuman, it isn’t good that we have to do these things. It isn’t healthy. In fact, it’s all rather ghastly from the first-person standpoint, however much it seems to inspire outsiders. In short, it sucks. And we suck it up. Then move on.
Swoopingly, if we know how.
I think I’m halfway to Bagua Zhang by now.
But it’s all related.
I wish I were an animator. I have these ideas in mind of a cartoon character who wiggles where I do, and not only could I make the character bounce and thud and stagger and scoot like I do, but I could animate wa-wa-ing waves and oscillating ropes of pain in morphing colors for each move. It’s really rather elegant, as well as side-splittingly funny in a greusome way. At the same time, extremely informative. Extremely.
Hmmm.. I guess I’ll download and learn some suitable animation software. In between the fractures, fallouts, fall-throughs, snafus, and the dribbling detritus of a slightly ridiculous life.
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… )
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!”
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.
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.
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.
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 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!
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.
For him, they do.
Moreover, when he explains it, it makes perfect sense.
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.
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.)
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.
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:
I charge in for a bit, throwing myself at it like spaghetti at the wall.
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.
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.
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.
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.
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.
Relaxed (Western style):
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.”
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.
Well, of course they were fighting each other in every direction. This was the setup:
When I was 10, I got the silly idea that I should have an adult arch to my foot, so I began to supinate.
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.
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?
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.
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.
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.
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/
I was mulling a post called, “The Pulse,” about how my life tends to go in surges, and when I work with that, things go better, but when I try too hard to flatten life out to a steady level, everything goes badly.
It’s about the pulse — push when I have the momentum to push, pause when the momentum fades, sink when even standing still feels like a sucking drain; push, pause, sink, push, pause, sink, and so forth.
If you’ve ever held a stethoscope to the sound of a beating heart, you have an idea what that sounds like.
It’s like pacing, a familiar concept to the chronically ill, but on a larger timescale.
Winter always involves some withdrawal, some sinking. This makes lots of sense to my acupuncturists and martial arts teachers. The traditional Chinese medical model assumes that we’re embedded in a larger reality, with weather and climate and timely changes, a key idea which conventional medicine doesn’t acknowledge very well.
I used to be able to push enough, even in winter, that the annual sinking wasn’t that obvious, given that most of those around me were in winter too. However, since my mid-30’s, a lot of people I’ve loved, liked, and depended on have died in the chilly armpit of the year. Deathiversaries, as I’ve noted, tend to have an effect on me, especially when they pile up like… well… bodies.
Perhaps I should move south of the equator. Then it’ll be warm at this time of year, at least for me, if not for my lovely ghosts.
Late last year, two honorary brothers, one of my dear CRPS friends and a young friend whose life I actually saved at one time, both died. Now, at least two of my honorary sisters are at the end of their lives, one of CRPS and the other who’s working on her 6th cancer.
I’m not whining. It’s not about me, it’s definitely about them. I’m not dying.
It’s just that it’s hard to remember that, sometimes.
Helpless as I am to hold back the grim reaper’s scythe, there are sometimes things I can do to soften the end of others’ lives. My first nursing job was on an HIV/AIDS unit in 1991, so this is a well-established idea for me.
This year, though, 24 years on, some invisible line has been crossed, or some invisible straw has landed on this camel’s back. I cannot move. (It’s kind of wild that I can write, finally.)
I am paralyzed, generally anesthetized, frozen. There is no pulse, no pause, no sinking, not a microgram of push.
Four days of work, pushing so hard it sucks my breath away, and I now have a psychotherapy appointment with a 30-year veteran of helping the chronically ill and deeply traumatized. Plus one blog post.
I can’t do a thing for anyone else until I can move and breathe again. This thought alone is like a blanket of razors, since the condition of my friends isn’t going to wait for me to get my act together, but still — it doesn’t break the ice.
There are some things that are too much to expect a reasonable person to bear, and anyone with a hellacious disease already has one of those things on their plate. Those who are in the last stage of life have another. Those who are bereaved … you get the idea.
I’m posting this, not to write my diary in public, but because I know I’m not alone. Those of you who can barely move enough to shift the cursor, be assured that I know you’re not alone, either. Somehow, we will get through this. We will melt the ice, with help if we can get it. There is always an afterwards.
There’s one thing that offers this frozen veteran of grief the kind of scathing consolation that’s all I can expect these days: when my time comes to shuffle off this mortal coil, then, if there’s anything left of me to notice or care (as I strongly suspect the more subtle yet intransigent laws of physics require), I will be in the very best company.
I tried to find a song for Ethan, who did love music, but it wasn’t working. I’m not much of a poet, frankly, but it was the only thing I could do.
Here is Ethan’s poem from me.
We did the impossible quietly
Getting the boat into harbor
and keeping it safe through the night
Tight hugs abeam unstable piers
My little brother, so big
When I thought I'd die of weakness
You showed me my strength
And, smiling, would not accept less
Tight hugs killing off mortal fears
My little brother, so big
Long nights talking and talking
'til your gyroscope turned and you looked
at the first stains of dawn on the water
Tight hugs at the end of the tears
My little brother, so big
When you turned searching eyes upon me
For the integrity that rooted your heart
You had the grace to thank me
Tight hugs through difficult years
My little brother, so big
You were so impossibly larger than life
I wrote you into a comedy of death
And you were the best thing in it.
I miss your hugs, my dear.
It’s really too bad (a bit of staggering English understatement, there.) He had found the right life and the right wife, and I was beginning to think I’d eventually meet his children.
I hope he’s free of the demons that hounded him so mercilessly. Wherever he is, I expect he’s raising Hell — kicking righteous butt and making the world fall in love with him, and doing both with equal, unquenchable vigor.
I lived without hope for years. Years. It was weird to look around one day and realize I had no hope, and that I hadn’t had any for awhile. I didn’t think I was going to see another Christmas… for at least 5 Christmases.
When the few friends who were willing to be honest asked me what I hoped for or what I had ambitions for, I had to tell them that I had no hope and I had no dreams of the future.
They really had trouble with that.
Some just did that weird, head-shaking, “I didn’t just hear that” thing and changed the subject. A few asked if I was suicidal. I had been, and I drifted in and out of degrees of thinking about how to make it painless and permanent if I did kill myself, but I was… surviving.
Actually, I was working really hard on surviving. Hope had been sucking me dry, making me see things that weren’t there, putting my energy into some future I could only imagine, but couldn’t see a way to reach.
If I hadn’t been willing to drop everything, including hope, in order to just focus on the business of living with this horrific reality, I think I wouldn’t have survived. I had no extra energy, and hope was too demanding.
When I came out of that time, very very slowly, it dawned on me that I had been fighting for so long for my own life that, for the first time in my entire conscious existence, I felt no need to apologize for the space I took up, the effort and attention I required from the world, or, in fact, for anything.
As I told my Mom at the time, “I’ve fought for others’ lives pretty often, and when you’re coding someone, they’re your whole world for the time that you’re coding them.
“If you fight for someone’s life over any length of time, you come to care about them as well as for them, even if you have nothing else in common. Well, I’ve spent years fighting for my own life, and it’s impossible to fight that long for someone without really coming to care about them. I really love myself, in a solid way, with no caveats, and nobody and nothing can shake that.”
So, I don’t associate hopelessness with futurelessness or lifelessness, as most people seem to do. I have every faith in our ability to face life without hope, because sometimes it’s just dead weight. Sometimes, it distracts us from what’s real.
I have faith in us, hope or no hope. I have absolute faith in our ability to move through the stages of this unbelievable circus we call life, and make them work for OURSELVES in the end.
Faith isn’t the same as hope, because it relies on something that’s present now, not on something that might be possible in the future. I have faith in our doughtiness, an old-fashioned word combining the meanings of nerve, grit, and determination. Boy, do CRPSers have all of that!
In the end, hope is a luxury we can’t always afford. Hoping and dreaming — putting our energy into things that don’t exist — can be a real sink. That is, maintaining hope and dreams can, themselves, take more energy than we can afford.
It sounds counterintuitive to someone who’s never been there, because most people think of hopes and dreams as what pulls us forward.
If hopes or dreams pull you forward, that’s good; if they don’t, reconsider, and maybe refocus.
Refocusing on the sheer present business of finding a way to survive with things as they are right now is not wasted time, it’s not suicidality, and it’s not even an act of despair. It’s profoundly rational, profoundly functional, and even when it’s profoundly difficult, it’s still profoundly worthwhile.
From my own experience, I have to say it’s a strange state of mind to live in, but it’s surprisingly worry-free. False worries fall away as fast as false comforts do. Once I accepted the state of life with no hope, there was no room for b.s., either in my world or in my relationships.
Life simplified itself; all I had to do was keep up — or rather, pare down. That was weird too, because I used to find stuff comforting.
In that utterly simple state, though, it wasn’t comforting. It was just stuff.
Having emotional energy invested in something so … stufflike … was absurd. Talk about false comfort!
So, before long, all I had was what I needed; nothing more, and not much less.
In time, everything changes, even the amount of energy we can spare. I can tell you exactly when I rediscovered the luxury of hope, because I blogged about it here. It was nothing more than the first whisper, because that was all I could support, but it was unmistakeable.
Since then, I’ve also rediscovered flippancy, ambition, and even toilet humor. (My sense of irony never left, which makes me think it’s essential. H’mm…)
But a few things still remain, deep currents in the otherwise twinkly surface of my character:
stuff is good only if it’s useful and there’s room for it;
nobody, but nobody, decides when I die but me; and
I love myself. I may be grubby, nerdy, daffy, clever, ill-yet-unconquered — but I love myself absolutely, without vanity, and without caveats.
If it took living without hope, then I’m better for having done it.
Aphorism for the day: Don’t be afraid of what life brings you. You never know what’s on the other side. It’s just a matter of getting there.
About 15 years ago, I studied shaolin kung fu with Ted Mancuso at the Academy of Martial Arts in Santa Cruz. I was outrageously lucky to wind up there. I had too much spiritual feeling to tolerate the gym-type martial arts classes normally found in the US, but not nearly enough discipline to make the most of my time at the Academy.
However, I did learn a few things, including how to block a punch in such a way that my opponent’s spinal reflexes were disabled for my return punch. That was cool.
Being short, blonde, female, well-traveled, and — above all — a sometime Emergency nurse, all my illusions about bad things only happening to bad people were long since destroyed. It’s a great big world out there, and anything can happen to anybody.
So there I was, in my self-satisfied early 30’s, at a top-flight martial arts training school. The fact that the teacher (or “sifu”) had started in qi gong somehow totally eluded me. I was infatuated with the grandmother of martial arts, shaolin kung fu, and really had eyes for nothing else.
I briefly flirted with t’ai chi, but decided it would be too hard on my knees… Knees are important, but shoddily made. I had cruddy cartilage (what was left of it) under my kneecaps. I thought that was painful (how cute!) and was afraid of making it worse before my time (another joke, in retrospect.) I got physical therapy for that problem, and learned that my legs had been aligning poorly at least since I was 11.
Retraining my legs to activate different muscles, ones I could hardly feel (and no wonder), was daunting at first.
I remarked to Sifu Ted, in tones of reflective melancholy overlaying a certain smugness, “I’m re-learning how to walk.”
That was supposed to be the opening line of a short discourse on rebuilding something so fundamental, literally repatterning one of the most reflexive early lessons in life, going right back to the beginning and restructuring an utterly basic activity … yeah. Cute.
But, before I could get started, he said, in a tone of unrehearsed frankness overlaying a certain frustration, “I’m always relearning how to walk.”
My verbal hot-air balloon deflated on a laugh, before it ever left the ground.
He said, “It’s true.”
I nodded, and went away to think that over for a decade or so.
I thought of Ted when I realized that combining energy discipline and body work was the best rubric for managing my CRPS. I’m back at his school now, studying — you guessed it — qi gong and t’ai chi.
Um… No, it’s not too hard on my knees.
T’ai chi is second to nothing I’ve tried for correcting posture, the way Ted’s Academy teaches it. While each body is unique, there are certain things that have to happen in order for the movement to work. To do good t’ai chi is to line your body up properly. My low back is slowly opening and lengthening again, and my feet are remembering how to find the ground.
Qi gong is another dimension beyond that. I’m sweating over re-learning how to stand. When I find the words, which may take awhile, I’ll write about it more. To start with, I’ll just say that I had no idea how much I get in my own way — and I’m not that bad, for a Westerner. I started qi gong 20 years ago, but now I’m starting all over again.
I thought it was trippy to go back to when I was 11, and un-learn from there. Now I’m realizing I have to go back to when I was 1.
But I’m looking forward to knowing how to walk.