Pacing, from the outside for a change

Now that I’m writing more, I find (again) that I don’t always know if I’m writing a blog post or journal entry until after the fact. (When I’m in practice, I always know ahead of time.) Naturally, the blog posts go here, and the journal entries don’t, so this is only visible at my end. However, I’m getting more journaling done, and that’s definitely good for my brain!

My partner J is learning to pace himself. He’s bit older than I am, is a bit hyperactive, and has had outrageously good health all his life. The onset of, um, late middle age is coming as a rather shocking surprise to someone whose body seemed to hold its position from 25 to 55 … and then it only took a decade or so for him to have some peace and wisdom around the fact that it’s time to act with more peace and wisdom.

Of course, in his case, he first had to find a place where acting with peace and wisdom was a survival path, rather than an invitation to younger predators.

Etching of elephant in distance, man taking aim at elephant with rifle, another man preparing to stab the man with rifle.
Life in J’s old neighborhood. Img from Wikimedia Commons.

I used to think that it didn’t much matter where I lived, that people were people and that things would work out much the same nonetheless. Boy, have I ever changed my mind about that. Some places are nice to visit, but I wouldn’t want to live there.

Back here in the North Beast, the cold snap has us both moving slowly. We’re about 2/3 done with sanding the driveway, and will take a couple days to rest until the next push on that task. It’s good to sit here in the living room all cozy and peaceful, because he’s now comfortable with doing things in episodes.

Pacing is a tough thing to learn, but it’s nice once you get it. It’s easier on those around you, too. Who knew? I never thought of that before, until I was one of those hanging around a person who paced himself successfully.

Line drawing of woman flat on floor, with woozles coming out of her head
Image mine. Creative Commons share-alike attribution license 🙂

We are warm, safe, housed, fed, loved, and cherished. For all the years that none of that was true for either of us, well, we never knew this was up ahead. We had to stay alive long enough to get to this point. It wasn’t easy. I’m glad we did.

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Living anyway

I was holding off on blogging consistently until my brain was more consistently reliable — until I had enough improvement in my mental faculties. Reason intervened, and it got through the concrete that, longstanding CRPS being what it is, that could be a very long wait. Those of you looking for solid whacks of brilliance or coherence or good judgment, consider yourselves warned. This is real life, and, whatever is left of it, it’s time to live it anyway.
Snowy lawn, apple tree, row of pines behind apple tree, snowy road visible between trees, silvery cloudy sky above trees.
And, with that said, 2015 is left in the dust.

Waiting for perfection is obviously absurd. Anything with a pulse is still imperfect. Waiting for “enough improvement” is the mental sucker-punch that hides in perfection’s shadow. It cajoles me by not being perfect, but … define “enough improvement.” — See what I mean? Mental sucker-punch!

My tea, like me, is a work in progress at the moment. I sit here letting it steep, with my patches of exposed skin singing “zippity do dah!” every time something touches them, the silver and white day rising gently through my window, my insides solidly blocking the thought of food or pills for the foreseeable future (we’ll have to negotiate that later), J coming over to hug me against his side and give a pleased giggle that we’re reallly here and really together and we made it this far, and I find a perfect moment in it.

Living anyway. That’s the point. Well done, Isy.

Happy New Year.
May your hardships be balanced by your blessings.
May your love drown your pain.
For the many of us who live unbearable lives, may you have all the courage and wit and calm to bear it and find your moments of freedom.
Whatever you’ve got to live with, live anyway, and find the peace and joy there is even in the event horizon.
My heart is with you.

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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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How I find my doctors

It’s not easy to find providers who can pay attention to the people in front of them and think their way out of a wet paper bag at the best of times, especially in the increasingly money-oriented and depersonalized model of care that grows and spreads out from the US like a bad rash.

When you’re looking for a specialist in a rare disease like CRPS, it’s even more interesting.

Sources for lists of providers


The online info-and-education site, RSDS.org, can send you a list of providers if you write to them and ask:
http://rsds.org/finding-a-crps-specialist/. More usefully, though, they also provide a list of links to medical-specialist licensing board sites, where you can find specialists in your region.

I checked these out.

American Board of Pain Medicine

Enter your city, state/province, and country in the fields provided; choose your target category (Anaesthesiology, Physical Medicine & Rehab, Neurology, Psychiatry, etc.) to find someone board-certified in that specialty; and click Find.
http://imis.abpm.org/abpmimis/abpm/directory.aspx

American Academy of Physical Medicine & Rehab

Same as above but with better instructions at the site.
https://members.aapmr.org/AAPMR/AAPMR_FINDER.aspx

American Academy of Pain Management

This very useful search tool includes a range of natural, ancillary, and supportive fields of care, not just physicians. It also allows you to set a distance, so you can expand or limit your commute as you see fit.
https://members.aapainmanage.org/aapmssa/censsacustlkup.query_page

Last but not least

Of course, if your insurance provider has a specific list of providers they’re willing to pay for, you may have to start with the list they give you. That simplifies the process initially.

Using online reviews rationally

Having found a list of specialists, I strongly recommend reading lots of reviews to find the one who suits you the best.

That will be different for different people, of course, because we have different bodies and we each have found that certain kinds of things work best for us; doctors, likewise, have different brains and are inclined to use a distinctive set of treatments, believing that that is what’s best.

So, if possible, we probably want to find a doctor whose approach and treatments bear some resemblance to our own.

Excellence

In addition to that, I recommend finding someone with over a decade of practice. There is no substitute for experience. It’s the only way that judgment — that subtle sense that takes in a lot of info subconsciously to arrive faster at a better result — can develop.

Excellence takes time. Extensive research on excellence indicates that 10 years is the functional minimum to develop it.

Personally, I tend to go for 25-30 years. I know that I require a collegial relationship with my doctor, and it takes an unusual degree of poise for most specialists to handle that gracefully. Also, I really need to be treated by someone who knows more than I do, and the longer I have this, the rarer that is….

Review sites

List of review sites I’ve used

Doctor review sites I’ve used include:

Yelp.com
ratemds.com
www.vitals.com
healthgrades.com
zocdoc.com

Using review sites rationally

Once I get a list of specialists, it’s pretty easy to screen out the majority on the first pass, on the basis of inexperience or irrelevant experience. Some of these review sites, like ratemds.com and healthgrades.com, show the education, experience, rewards, and publication highlights for each physician. (All of this is public info.) These data make a great screening tool.

I only need to do in-depth review reading for less than a dozen doctors, usually. I don’t feel comfortable with less than 4 review sites for each doc I take seriously. Each site has its own slant, so I prefer to triangulate on each provider’s patient relationships from different sites.

Caveat emptor: It’s important to look at review sites with my brain plugged in and working. We know that some reviews are posted malevolently, and that everyone — including doctors — has a bad day. We also know that everyone — including doctors — has got their blind spots. That’s fine. I’m looking for PATTERNS, not exceptional instances.

For instance, one memorable doc treated beautiful people very well, and everyone else very dismissively. When his attention was engaged (which, for him, was about looks), he was intelligent, appropriate, and did outstanding work; these are valuable traits. Therefore, I’d recommend him (with an explanation), to friends who meet the age/BMI criteria in his sweet spot, because good care is good care — but I’d emphatically warn against him to the rest!

Last time, I wound up choosing a doctor who had a super high proportion of “he listens to me” remarks, had over 30 years of practice, had started in psychiatry (which indicated a more human-oriented and less problem-oriented approach, I thought), and did charity work for pain in his own time. That turned out extremely well. I wish I could get him to move across the country now, because I hate having to start the search all over again.

Now that I’ve got all my links in one place, it’ll be a lot easier.

Recap of my process

1. Create a list of potential providers:


Choose an appropriate specialty, such as..

  • anaesthesiology (training is oriented towards meds and procedures)
  • physical medicine and rehab (training is oriented toward physiotherapy and mental discipline)
  • psychiatry (training is oriented toward neurochemistry and life habits)

Choose an appropriate level of experience,with 10 years as my recommended minimum.

Make a comprehensive list of possibilities in your commute distance, using one of the board-certification bodies above or the list your insurance company provides you with.

2. Narrow it down to what makes sense:


First, quick pass through the list: screen for appropriate specialty (you’d be amazed at what winds up in those lists) and experience.

Second pass through the list: Start looking at online reviews. Cross out those who do a great job of pissing off their patients. Again, you’d be amazed… Every single doc gets a certain number of “he treated me like crap! I’ve never been so insulted in my life!” remarks, so I don’t notice a few of those, but when they predominate, out that doctor goes.

Third pass through the list: I look at 3-4 sites containing online reviews for the surprisingly short list of names I’ve got left. Some reviews are cut-and-pasted across sites, so I count those only once. This is where a pattern of personalities and approaches comes across.

Final triangulation: These impressions are easy enough to check by looking at the doctor’s web presence — activities they’re involved in, published work, what they do in their spare time (I find doing disease-related charities more compelling than golf club or Rotarian memberships, for instance), and I’m quickly down to 1 or 2 practitioners.

From there it’s a very simple choice.

3. Pick one.

If it’s a hard choice, I’ll call the office and ask to talk to the nurse. The staff a doctor hires have an awful lot to do with my experience there, so, by the time I know the doc has met my other criteria, incompetent or stupid staff is a perfectly reasonable deal-breaker.

I’m willing and able to travel quite a distance for a good provider, and this makes it a lot easier for me to find one. I’m deeply indebted to my partner for being so willing and happy to do so much driving on my behalf. It makes an enormous difference, and I’m suitably grateful.

I hope you all can find the right doctor where you need one. There is simply no substitute for good and appropriate care.

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Don’t abandon yourself

Um, I’m embarrassed here, but WordPress decided I wanted to publish this instead of keeping it as a draft, despite my (I thought) clear button-clicking. And after all this work, naturally, I’m too clobbered to figure out how to back out and fix that. So I won’t advertise this until it’s done. Meanwhile, enjoy reading the beta version, if you want…

// markup
// consider splitting into 2 or 3
// sanity check
// images

Don’t abandon yourself

As individuals and as a group, we have far too much experience of being abandoned by those who are supposed to care for us and those who, we believed, cared about us. Sooner or later, those of us with invisible disabilities in general, and disruptive neurological and pain diseases particularly, *really* learn who our friends and allies *truly* are — if we have any at all. It’s a brutal lesson.

On top of this, those of us who survive the initial assaults of the disease — not to mention the staggering rounds of betrayals and abandonments — tend to be rather driven. If we weren’t when we started, we sure are by the time we get through those ghastly shivarees. We can keep going by will alone, without the muscle, the memory, or the means to do so. We do it anyway.

In the long run, this is a skill that needs to be used selectively. It gets us through the pinches and punches of life, but we have to learn when to turn that off and take care of ourselves, as we wish others had taken care of us.

The trickiest lesson of all may be, how not to abandon ourselves.

It’s not that hard. It’s difficult, but it’s not hard. The trick is learning to walk fine lines, using our judgment instead of our impulses — which are a LOT more impulsive because of the neurochemistry of relentless pain.

The deck is stacked against us. But we are still in the game.

Here are some notes on the distinctions we have to learn, even when our brains can’t cooperate. The fact that we get as far as we do is astounding, when you think about it.

H/The difference between comfort and care

There are habitual comforts that belonged to our pre-disease life, and care that belongs to the present. I’ve found that care itself has become very comforting, so the work of leaving behind old comforts that suddenly came with a very high price has turned out to be well worth the years of effort. (I rarely even want pastries any more, which is just as well, considering all the problems they trigger in this body… but Epsom baths are wonderful, and berries are delicious!)

H/The difference between rest and sluggishness

There are four pillars to self-care for CRPS and, indeed, most pain diseases: activity, rest, nutrition, and distraction.

We have GOT to move. We have GOT to rest. Neither is optional. But the pain makes it hard to start moving, and once you get comfortable… oh, dear heavens, why get up when it just makes things hurt again? Initiating movement is awful at the time, but maintaining flow of blood and lymph is absolutely crucial for *ongoing* pain control and keeping the damage down.

Putting your feet up between tasks, taking it easy the day before and the day after an appointment or event, and [LINK] having good sleep habits[/] is resting. Resting is good. Resting is helpful. Resting makes you stronger.

H/The difference between doing and overdoing — and undoing

One great advantage that kids with CRPS have is parents. Parents push you when you can’t push yourself. It’s their job. I suspect that two reasons why kids have a better chance at remission is that, for one thing, they have a structured daily routine, which reduces the CNS chaos; and, for another, they have parents helping and coaching and maybe crying with them as they push through the pain to keep moving and
get their activity in, as well as their rest.

One great disadvantage that adults have is less resilience. If we overdo, our bodies go straight to Hell — go to Hell, go directly to Hell, do not pass Go, do not collect $200 (to paraphrase the game Monopoly.)

At worst, we can create a spread or an intensifying of CRPS if we push ourselves too hard, eat the wrong thing, have a procedure, break a bone. We can, by one misjudgment or accident, find ourselves far more disabled and agonized and in need than we already were. Which is unimaginable to a healthy person in the first place.

And yet, we must move… While exhibiting good judgment… With a brain that hasn’t got much judgment-juice at the best of times.

No, it’s not fair! It’s CRPS!

H/The difference between pushing and pacing

Pacing is key. Pacing is how I built up from being able to walk just 100 feet to a couple of miles. Pushing is how I got CRPS in the first place, and it’s insane to do the same thing in the hope of getting different results.

Learning how to pace, when you’re used to pushing, is relentlessly frustrating… but it *can* be done! For me, it’s usually a question of turning my stubbornness towards my own service, instead of the service of my frustration, ADD-driven fixation, or impulsiveness.

Actually, come to think of it, it’s really a question of *remembering* to do that, prioritizing accordingly, and following through on the decision. Easier said than done. This brain doesn’t have much judgment-juice, remember? It’s unspeakably weird to feel myself make the choice to stop doing whatever task I’ve gotten sucked into, realize it’s a good idea, find that I’m totally unable to make the switch, and — here’s the kicker — hear myself say in my head, “I haven’t got enough dopamine,” and simply realize I’m going to be in trouble and that’s all there is to it.

H/The difference between a bad decision, the end of life as you know it, and being dead.

Normally, only one of these is unrecoverable. Remember that. Being dead eliminates aaaaaaaaall your future options. Every last one. This is why I say, with Barrie Rosen, that *only suicide* is failure; everything else is just tactics.

Bad decisions have consequences, as we know better than most. We are often underfunded in what it takes to make those decisions, as my example in the previous section indicates. Bad decisions suck, they’re often costly, and it’s not like we can always help making them, adding a layer of humiliation that isn’t fun.

But they aren’t the end of the world. Not usually. They rarely result in our deaths. Being able to manage or mitigate the consequences and move on with a minimum of fuss is a hugely valuable skill. This brings us to our next topic.

H/The difference between being irresponsible, and forgiving yourself for a mistake.

Forgiving ourselves is key. The neurochemistry of judgment and decision-making takes heavy damage from the neurochemistry of pain *and* the particular neurological re-mapping and re-wiring of CRPS.

That’s not fair!

Would you dis someone with no legs because they couldn’t climb a mountain? No, of course not. You’d be much more likely to offer to help them get their chair up to where they can get a better view.

Between our greater likelihood of dropping a brick, so to speak, and the incredibly high price we pay for every mistake, being able to forgive ourselves is essential to keeping some perspective and keeping ourselves going.

Not forgiving ourselves actually leaves us with *less* judgment-juice (otherwise known as dopamine.) Being critical is hard work, neurologically speaking. Our brains are already overtaxed, in every possible sense of the word; do we really need to strip still more dopamine from this system and work the pain pathways even harder? Probably not, eh?

Being irresponsible boils down to surrendering your own agency. Agency, in this case, means being the active force in your own life. Whose body is it? Yours. Who is it who has this pain and all that goes with it? You. Who is responsible for learning how to manage this body? Who is it who has to find the right treatment and negotiate usefully with your providers? One guess…

Doctors spend a decade just being trained to treat this disease. We don’t have that luxury, even though we have to depend on them to get the care. Since it shows up uniquely in each one of us, we have to become our own best specialists. To quote Ojocion Ingram, a passive patient is a dead patient.

While modern conventional medicine does not take kindly to patients who drive their own care, there’s a reason for that: modern conventional medicine was not designed to create healthy patients, it was designed to create healthy profits. The system does not have your best interests at heart. It’s up to you to manage the system to serve your needs to the extent that it can… and then to find ways to stretch it a little further.

Although others may help us (and isn’t it wonderful when they do?) the final decisions are ours, for better or worse. The law still mostly respects that, if only because it shifts responsibility off the “health care” system.

H/The difference between inner wisdom and inner chaos

I recently lost a friend with CRPS who released her agency to her surgeon, for very logical reasons, but very much against her inner voice. Her voice is now silenced, and we miss her dreadfully.

This raises an interesting conundrum: with or without adequate brain-juice, we have to find ways to make decisions which can have consequences up to, and including, death. Is the logical decision the right one? Or should we listen to our inner voice, even if we can’t find logical reasons to do so? Is it inner wisdom, or yet another anxiety attack? How can we know?

I’m an old triage nurse. I used to say, always go with that inner voice. I’ve seen it be right more often than the best of doctors. There is something inside us that knows more than we can possibly perceive. Sadly, we can’t always hear it clearly, especially when our brains are hotwired and hair-triggered by the constant barrage of weirdness that CRPS creates.

The primitive parts of our brain that monitor risk and reward, hazards and fears, aversion and attraction, are all potentially infected with the disruption and misfiring that CRPS causes. It’s a central disease, so the pain it creates in the body can be reflected and echoed and magnified by the upheaval it creates in the brain. This can make it very hard to know what’s really going on, especially for the person most closely involved.

This is why coloring, meditation/contemplation, relaxation techniques, and inner arts like yoga and qi gong are so useful. They smooth out the chaotic ripples set off by the disease, so we can hear our inner voices a bit more clearly. Sadly, they’re still seen as something absurd (coloring? Really??), out of reach, exotic, or personally irrelevant. My doctors almost never mention them, and if they do, it’s usually clear that it’s something they don’t do themselves — it’s for the patients. And, as every practitioner knows, patients are just a little less than fully human.

That’s one thing I learned from working as a nurse at 6 teaching hospitals. Patients are consistently seen as less than fully human. The training in that regard goes very deep. Knowing that may make it easier to understand why things are the way they are in the modern health care system.

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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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Burning Mercury and the story of Bathsheba

This was written a week ago. Enjoy…

We’re on an extended camping trip, simultaneously waiting for my broken foot to mend, waiting to find out when we can move our travel trailer into a long-term spot, and figuring out how we are going to manage this relationship over the long term — which involves a lot of waiting. So things are quiet and scenic, but, on the whole, not very comfortable.

I was sitting by the cold firepit, looking out across the sere grass and low hills, in a quiet reverie in a quiet hour. I sent my imagination off to find something utterly irrelevant.

What came back was the sign of Pluto, which approached in a portentous manner —
astrological glyph for Pluto
And, in the sideways manner of dreams, said it was Mercury, which normally looks like this:
astrological glyph for Mercury
Then it grew flames, starting from the ball.
pluto glyph with small flame on ball
The flames spread, and as they spread around the symbol and over it, the symbol came close to me.
Pluto glyph nearly engulfed in flames on top
Closer.

Closer still.

Then it hooked its barbs into my side. It was intrusive as dammit. It poked right into my flesh, as if it wanted to climb in.

Trying to pull away, I said, “What the heck are you doing? What do you want?”

It said, “We need your stories.

I thought of my science writing at my biowizardry blog, and it said No. I thought of my anecdotes here, and it said No.

It waved a few pages of books and stories I’ve half-written and said, “We need your STORIES.”

Oh. The imaginative stuff. Didn’t think that was the most unique thing I had to offer, but hey, I’m a writer … I usually do what the little voices tell me.

So here’s a story.

One day, there was a woodcutter and … no, wait, you’ve heard that one. How about this, and I’m writing it from sentence to sentence, no idea what comes next, so be kind…

The story of Bathsheba

Bathsheba was beautiful and did not know it, despite her luscious name. She wanted little, and got slightly less, but she had a gift for appreciation and made the most of it.

One day, while dumpster-diving (she did even that with grace), she came across half a salmon, nearly fresh, cooked with red wine and oranges. It was heavenly. She was only three bites in when a bully named Tom came by, heard her happy little sounds, and cursed and smacked her away so he could have the rest. He never learned that it’s wrong to hit people smaller than you, especially girls.

She scrambled out in a hurry, but he didn’t come after her, so she calmed down and wandered away to somewhere more peaceful. She was glad she had gotten the three bites, and sat on the curb in the sun, licking her lips and enjoying the aftertaste.

A car drove by, spitting fumes and loud music, and a half-empty can nearly beaned her. She leaned aside to dodge it, and went back to soaking up the sun. It was part of city life — she could tell that they hadn’t been aiming.

Another car pulled up, partly blocking the sun, large and with something sturdy on the roof. She pulled her feet in neatly. The occupants didn’t seem to notice; they were busy talking, sounding uncomfortable and distracted. The one on the street side got out and opened the back up, then returned to the front. The two occupants opened out an enormous sheet of paper between them. A map.

Bathsheba loved maps. It had been ages since she’d been able to just relax and look at a map. Curiosity flashed a fin.

Very quietly, she sidled closer to the car’s rear end.

No reaction from up front.

Very gently, very quietly, she leaned — oh so casually — against the rear bumper.

They were having technical issues: the space was too small to turn the map over in, but they were trying.

Bathsheba put one foot on the bumper, experimentally. The piles of clothing and sleeping gear obscured her view.

Up front, the map turning had not gone well, so there were some knocked mirrors and banged knuckles and bumped heads. The trivial dip of the bumper didn’t even show up in the chaos up front.

She shifted her weight, oh so carefully… just to see …

And, up front, the map tore.

One of the occupants burst into tears.

Bathsheba leaped towards the front of the car, then remembered herself — you don’t just go up to strangers, even if all you want to do is comfort them!

Instead, with wide eyes, she crouched behind the back seat, half-buried by piles of clothing and pillows, her back against the hard plastic side of a cooler, looking all her sympathy, yet terrified of the very questionable position she found herself in. She had absolutely no idea what to do.

The conversation up front shifted gear, from frustration and recrimination to apology and comforting. Eventually, and more or less in the middle of a word, the driver put the idling car into gear and pulled away from the curb.

Bathsheba clutched the clothing under her, eyes now very wide indeed. She definitely didn’t belong here, but the car was going too fast to jump out; all she could do was hold onto the clothing, which she was now half-buried in, and hope with all her might that it didn’t fall out the still-open back.

Some time later, she was startled awake by a thud. The driver had stopped the car and put the back lift-gate down. He apparently hadn’t noticed Bathsheba, curled up among the tumbled clothing. The car lurched forward and took off again at highway speed.

She peered over the cooler and gazed out at the darkening sky. There was a great big wall along the road and city smells blew in through the vent, but not the strong stenches she was used to.

She wondered if being homeless out here was any better than being homeless in the heart of the city. She couldn’t even begin to think of how she’d get back. It wasn’t a great life, sure, but at least she knew where the good dumpsters were, and who to avoid. Mind you, it smelled better out here.

She wanted to cry, and maybe she whimpered very quietly so nobody else could hear, but she didn’t dare to announce herself. She had no idea how she was going to get out of this, but maybe something would go right… later…

With nothing else to do and a short lifetime’s experience of stress under her belt already, she burrowed in and went back to sleep among the strangers’ clothes. They smelled kind of nice, like cotton and lemon and something crisp and soft which she couldn’t name, but felt so at home with.

She woke later to a voice, a nice gentle man’s voice tinged with wonder: “Kate, come look.” It was one of the occupants.

The car was still. The air was full of that crisp, soft smell. The sky was dark, with millions of points of light — stars, so rare in the city. There was a fire burning nearby under a grill loaded with wonderful things. The other occupant got up from her seat by the fire and came over.

The two people looked down at Bathsheba, utterly tangled in their clothing, utterly helpless, and curiously at home.

They didn’t snarl. They didn’t throw cans. They didn’t invade her privacy or try to grab at her.

They just smiled — two kind, sweet, wondering smiles. They looked like they were witnessing a minor miracle, and like Bathsheba was someone they already considered a friend.

Bathsheba couldn’t help herself. The clothes under her fingers curled. Her chest stretched. Her eyelids squished gently closed, then opened again. She purred.

“I think you’re going to like it a lot better out here, kitty,” said Kate.

Bathsheba wanted to correct her, and say her name was Bathsheba, not Kitty. But just then, Kate reached out with two hands and gently scooped her in. Bathsheba felt Kate’s slow, solid heartbeat — thubump, thubump, thubump — against her own soft little body, and melted into joy.

Don’t worry. There will be plenty more science, and plenty more stories too.

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Managing with one foot

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.
mismatched_sox
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…
Red fleece sleeve slid over foot and lower leg. Walking shoe on.
… to minimize the effects of the occasional little bumps and jostles the foot gets as I dart around on my stunning little knee-walker.
scooterfreesme
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.

It’s kind of unreal that my body has held it together for so long. But hey, like I’ve said, a lot of us find that we are capable of far more than the science might think.

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.
Yin_yang-sm
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?
choco-giving-it-up
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.

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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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