Angel wings & tactical things

This morning, I woke up feeling like a butcher knife was lodged in my heart, the memory of barking and snarling voices ringing in my ears. No surprise there; it’s to be expected.

My first coherent thought was, “This needs to be better.” I think that about a lot of things, but this one is mine to deal with.

I pulled one of my tools out of my mental toolkit, and flicked my eyes from ceiling to floor, ceiling to floor. (I’m a side-sleeper.) When I felt an urge to close my eyes, I did. When I opened them again, the butcher knife had shrunk to the size of a stiletto, maybe a medium-sized knitting-needle.

This magic technique is one way of using “bilateral stimulation.” Bilateral stimulation is a way of using neuro-anatomy to manage neuro-chemistry, using your brain signals to heal your mind. There’s loads of material on it in the field of trauma psychology.

Basically, the way our brain processes “sidedness” (the fact that we have a left, a right, a front, and a back) is even deeper than the way it processes strong, primitive emotions, like fight-or-flight-or-freeze. Those emotions tend to disrupt the brain’s normal processing of memory, thought, and decision-making, which can be useful when mastodons are stomping over your village — what you need to do is move faster than you’ve ever done in your life, and not camp on their migratory route in the future.

Most decisions we have to make are not on that order. Even when we live with a brain that keeps wanting to go there, it’s still rarely useful. So, it’s wise to have a few tools that can keep it in check when it’s working “after hours”, so to speak.

One way to do that, which works for most ordinary stressors, is meditation. It gives me practice in creating a still space inside, where I can survey my surroundings, assess things, and choose the best way forward, from this non-triggered space. The “success” of individual meditation sessions is irrelevant to this skill, because it comes naturally as a result of persistently going back to meditation and working on it over and over. Like with many things regarding central nervous system care, persistence is key.

When my skills are toppled over by what goes on around me (cf. my last post! A perfect example of losing it and coming back again), these other tools come out of my “bag of tricks.”

Glancing from one side to another is easy, portable, and requires only some vision and muscular control of your eyes. Pick a spot about 45-60 degrees ahead of you on your left, and a corresponding spot on your right. Flick your glance from one to the other, and back again, not too fast, not too slow. The right speed varies from person to person and time to time. Feel out the point where your system naturally drops to a median, attentive level. It doesn’t feel dramatic or unnatural; I experience it as a sort of a natural pause, as if it’s waiting calmly for something reasonable. Getting someone properly trained in EMDR to teach you what this feels like is really helpful, but you might be able to find it yourself.

There’s a bit more to it: real EMDR training starts with finding, and programming into that deep layer, a “safe place” to go to in your mind; establishing a certain connection with what some call “your wise self”, so you can re-assess your situation and re-evaluate your responses without the triggering; and learning what happens to you, in particular, during the process, so you can self-treat with fewer problems and more success.

Other techniques of bilateral stimulation include the “butterfly hug.” Cross your arms so your hands rest on your opposite collarbones, and tap one side, then the other side. This feels very comforting. It’s not my go-to, because the nerves going through my elbows don’t like bending up that much.

Thigh tapping is widely taught in disaster- and war-related trauma recovery. It can be done sitting, standing, or lying down. Simply tap your legs, first one side, then the other, with the hand on that side. Left hand left leg, Right hhand right leg, back adn forth. The signal demands attention from the brain, which pulls itelf off of panic duty and gets back to processing information and sorting memories in a healthier way.

My physical therapist recently taught me the cross-body crawl. I can do this standing, sitting, or lying down on my back. Reach over with one hand and bring up the opposite knee, then switch sides, back and forth.

This does several things: it provides bilateral stimulation, which calms the panicky system down. It tones the core muscles, especially done while walking! It reminds the brain where the limbs are, which is kind of a huge deal with CRPS, which tends to muddle our brain’s map of our bodies. The cross-body crawl tops my current list of things I wish I wouldn’t do in public, because people look at me funny, but I’m going to do it anyway, because it’s so helpful to me.

I’m also able to focus on nutrition, physically the biggest player in the healing game. I made a green soup last night — Not Chik’n brand bouillon with all the green things I could find in the store that weren’t cabbage relatives (because they push down on my thyroid), and yesterday that was parsley, leeks, mature spinach, celery, and dandelion greens, plus carrots to smooth it all out. I cooked the rather harsh-smelling leeks in butter until the smell sweetened, then dumped everything but the spinach in and simmered for awhile, letting the minerals leach out into the broth. Then I cooked the spinach on top more briefly (so it wouldn’t get bitter) and threw it all in the blender.

As my friend said, “It’s like a chlorophyll bath.”

Meanwhile, as long as I persist in my meditative practice, the work on finding a home charges ahead. It’s a lasting puzzle to the linear part of my mind why an hour spent on meditation makes the other 3-4 functional hours I can squeeze out of the day ten times more effective. I’m gaspingly glad that it does, because it’s a heck of a job to find a safe place for this body.

This cascade of events has carved into my very bones the understanding that it’s meditation that will save me in the end. It’s the axis of my mundi, strange as that may seem to those who’ve witnessed any of my eventful life.

I feel the wings of angels stirring my hair now, and I can’t worry, only take the leap and trust that I’ll fly, rather than fall.

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Nerdy stuff: menstruation, hormones, pregnancy, and pain

This is a brain-dump and research-blurch I just did for a compatriot. These are issues that come up occasionally — every 28 days, for many — and always deserve good answers. Lots of links to scientific articles here.

Mouse brain neurons, two pairs, stained flame yellow against red background
Image by neurollero on flickr, CC share-alike attribution license.
There has been little research on women’s experiences of CRPS in terms of menstruation and pregnancy & breastfeeding. Gee, surprise surprise!
So I’m working to come at the issue sideways: looking for info on hormonal changes during menstruation & during pregnancy, and the effects that those hormones have on deep or central pain. Tedious, but possible. 
Also, I only have access to those articles which are publicly available. Many are kept under wraps because it’s one way that labs protect their intellectual property, sigh. 
PAIN & CHEMICAL-MESSENGER BASICS

Pain-related cytokines (this is old information, so these studies are old, but still informative):
“Recent findings on how proinflammatory cytokines cause pain”
https://www.sciencedirect.com/science/article/abs/pii/S0304394003013879
This article specifically cites 3 main culprits in neuropathic pain: IL-1beta (interleukin 1-beta), IL-6 (interluekin 6), and TNF-alpha (tumor necrosis factor alpha, which does a lot more than kill tumors!)

The publicly-available articles on cytokines’ role in pain are abundant from the early part of the millenium (1999-2010) but seem to disappear after 2013. I assume a lot of patentable activity is going on about it now, and given the usual lead-time on drug development, may not be available even for human trials for at least 5 more years.
Your pain specialist should be able to pull up more recent articles to share with your OB-GYN about that.

“Oxytocin – A Multifunctional Analgesic for Chronic Deep Tissue Pain” 2015
https://www.ingentaconnect.com/content/ben/cpd/2015/00000021/00000007/art00008

“Oxytocin and the modulation of pain experience: Implications for chronic pain management” 2015
https://www.sciencedirect.com/science/article/pii/S0149763415001177

MENSTRUAL CYCLE

Pain-related cytokine & hormonal changes around menstruation:
“Impact of Gender and Menstrual Cycle Phase on Plasma Cytokine Concentrations”
https://www.karger.com/Article/Abstract/107423
Women always have more pain cytokines than men, but they have more still during the luteal phase of the cycle, right after the egg is released (a.k.a. premenstrual phase) and leads to menses.

Since there’s so little science on menstruation in those with pain disorders, I include an article on menstruation & cytokines which explicitly draws a conclusion that *menstrual tissue itself* is the cytokine trigger (and endometriosis is basically an exaggeration of it), a conclusion which does support our experience of higher levels of CRPS pain with menses:
“Menstruation pulls the trigger for inflammation and pain in endometriosis”
https://www.sciencedirect.com/science/article/abs/pii/S0165614715000449

PREGNANCY & BREASTFEEDING

Breastfeeding confers protection against noxious brain chemistry:
“A new paradigm for depression in new mothers: the central role of inflammation and how breastfeeding and anti-inflammatory treatments protect maternal mental health”
https://internationalbreastfeedingjournal.biomedcentral.com/articles/10.1186/1746-4358-2-6
Has loads of references. It’s from 2007, but it’s so approachable I want you to have it anyway. Besides, the chemistry of our bodies hasn’t changed, only our understanding has increased.

Here’s an update by the same original author:
“The new paradigm for depression in new mothers: Current findings on maternal depression, breastfeeding and resiliency across the lifespan” 2015
https://search.informit.com.au/documentSummary;dn=283392990281695;res=IELHEA
It may be risky to include this, depending on your OB/GYN, because of the brutalizing confusion and ignorance around depression — widely seen as a character flaw and sign of weakness, when it’s just an overwhelming neurochemical state, and incidentally overlaps significantly with the overwhelming neurochemical state of neurogenic/central pain. In short, things that alleviate/mitigate depression also usually alleviate/mitigate central pain. It’s very simple.

GOOD TO KNOW

Let me give you two names to pass on to doctors willing to learn, for great info on CRPS: R.J. Schwartzmann, who retired in 2012 but whose work remains the most intelligent and articulate among CRPS researchers; and currently Breuhl and van Rijn are doing good work too.
More articles listed here by a trained 2dary researcher: https://elleandtheautognome.wordpress.com/crps-frequently-asked-questions-faq/

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There’s always an afterwards

This, right after “Keep breathing”, is one of my go-to pieces of mind management. It’s about so much more than consequences. Let’s take an example.

A non-obvious choice

At work, before I got sick, there were a lot of big, well-built guys in the software engineering department, who wrote the programming code that made the business happen. (It was a software firm with a great gym on campus; hence, lots of engineers & muscley ones at that.)

There were a lot of diligent people (almost all of them fit, though few as statuesque) in the QA department, who tested the programming code that the software engineers wrote, and had to make sure it was accurate and well-behaved (yes, code is supposed to be well-behaved!) before it was finalized.

Among the QA engineers was a woman about 4’9″, one of those sweetly scintillating geniuses who didn’t seem to have a temper to lose.

One day, in a meeting, one of the most magnificent of the software engineers learned that something he’d made was not behaving well. He argued the point; this QA engineer calmly reiterated her findings. To my astonishment, he actually stood up, walked over to her, and loomed. I mean, LOOMED.

The entire room (mostly men) held its collective breath. It was out of character for this engineer to be unpleasant, as a rule; and to pick on a woman? Unthinkable.

But his brainchild had been criticized, and he did not like it one bit.

Now, I grew up with two brothers. I also worked as an ER nurse in one of this nation’s hell-holes. I know how this is supposed to go. One person looms, the other bristles, and things get louder, with the (sometimes implicit) threat-level increasing until one backs down.

two tense men, one standing, one curled on his back, pointing guns at each other

I learned that day that there is, in fact, more than one way that this absolutely primal interaction can go.

All 92 pounds of QA engineer peered straight up, neck totally relaxed and head dropped back, at the scowling 180-pound sculpture of irritation and physique, with a mild air of bland puzzlement. It was as if she was wondering if he really thought standing over her changed the facts, and what was the point, which it turned out was exactly what she _was_ thinking.

This image?

big great dane looking down at a little chihuahua

Not a patch on that moment. It was wonderful.

The engineer eventually breathed and went back to his seat. Like the super-smart guy he almost always was, he moved straight on to how to fix the problem.

The afterwards

Given the format of conflict most of us know, the QA engineer should have tensed up and snarled, and that should have turned into a shouting match and disrupted the rest of the day — possibly involving HR and resulting in reprimands for them and hours of “training” for all. That’d make for a difficult, expensive, exhausting, and largely fruitless afterwards. These two worked together a lot, and this could have started a long downhill slide in their work relationship, which would have affected a lot more than their moods.

Instead, the QA engineer stayed on task — she held the larger view of what was needed to bring the code “up to code”, so to speak. By doing so, she gave the software engineer (who, admittedly, shouldn’t have needed it, but we’re all human and make mistakes sometimes) enough mental space and time to calm down, refocus, and get on with the important thing. Which he did.

After that, he did his looming without moving from his seat, which was no more than anyone else did. Their relationship continued to be a little testy, since one necessarily had to criticize the other, but increasingly respectful because they were both so good at their jobs. (They loved each other, professionally, even when they didn’t like each other. Sound familiar?)

I  finally got it

I found my own level of tension dropping after that. Even when the brainstem is receiving hard signals, it’s possible for the cortex to choose wisely, instead of reflexively. Who knew??

My own team of software engineers were more shouty and less loomy, but it sure calmed things down when I could simply wait, relaxed, as they ranted, and then ask — in a calm, natural manner — what to do about it.

waves pouring around a still stack of rocks

It was great preparation for living with central (that is, driven by the brain and spine) pain.

Barely alive

Pain does things to the brain, and central pain does more, worse, longer, and harder. However, pain is not the only thing in my brain. I have all kinds of things there, not least of which is — my mind.

There was a period when I was almost dead (sorry, Mom.) Even getting to my knees was impossible until my body had turned up the volume on itself, which took almost an hour. I was living aboard a sailboat at the time, and the fresh air and gentle rocking did me a lot of good. Not enough, though.

As this period began, I thought about it long and hard, lying there in my berth, desperate to yield completely to the exhaustion but unable to give up on life until I’d figured out the plot. Seriously, that was all that kept me alive: narrative curiosity, and feeding my cat. (Hey, whatever it takes!)

But wait, this gets even funnier.

I mentally reviewed the many adventure movies I’d seen, where the protagonist gets through impossible situations and overcomes unbearable limits by pure willpower, because they choose — over and over — to take the next step or make the next move, however hard it might be.

It popped into my head that almost all of those movies were fiction. “Doesn’t matter,” I told myself. “It’s all right. Some of them were based on fact.” Sure, I’ll go with that!

And so, with Cleopatra (Queen of Denial) riding my back…

sketch of me, splatted, with one fist ahead of me, and a bas-relief of Cleopatra perched on my back

I pushed my pillows aside, planted a fist on the settee coming straight out from the head of my sleeping berth, and pulled forward. God, that was hard. I panted until I could breathe again, then muttered, “I choose to go forward, whatever it takes.” I planted the other fist, dragged myself forward another few inches. Panted, took a breath, “I choose to go forward.” Over and over. “I choose.”

After a few days, I didn’t have to say it aloud every time. After a few weeks, I didn’t verbalize it at all; it was a silent stream of intention. A couple months later, I got hooked up to an acupuncturist/naturopath/homeopath who figured out how to gently draw my shattered system back from the brink, without accidentally knocking me off the edge. (Dr. Daniel Donner in the Oakland/Berkeley area; very highly recommended.)

Becoming super-human, or maybe more fully human

It was around this time — with social media toddling out of the BBS/chat era with its first firm steps, and blogs becoming normalized — that I developed the theory that humans under unbearable circumstances have to become superhuman, and that this is why we have myths — to show us the way past our learned limits. To quote the sainted Sir Terry Pratchett,

It’s amazing how peope define roles for themselves and put handcuffs on their experience and are constantly surprised by the things a roulette universe spins at them.

We are so much more than we think we are, than we have let ourselves believe, than this tiny moment in history and culture allows us even to notice!

As an amateur historian and someone who bounced all around the world growing up, I’ve always had a pretty solid sense that what one time/place thinks is normal, is actually pretty darn weird in the eyes of the rest of reality. (“Eggs for breakfast? But that’s dinner food!” And the moment I realized it was breakfast in London but dinner for me, and so it didn’t matter what I had.)

What I learned a little later is that I don’t always have to blend in. In fact, there are times when it’s best to ignore “normal” and get on with what needs doing.

These days, “normal” is scarcely ever a relevant concept, except as a matter of how to tune my disguise.

I’ve noticed I get better results and am treated better by others when I fall within certain parameters of appearance and behavior — ones that are “normal” either for a nice White soccer mom with arty sensibilities (on the street), or a pleasantly intelligent professional (when seeing physicians & administrators) — so I track myself accordingly. Your mileage may vary — we’re all different — so, try different things and see what works for you.

Back to reality

The point is, even at the hardest moments, and despite intense cultural programming and bitter central pain, it IS possible to choose how to be.

We don’t hear that much, especially from movies, eh? Follow your feelings! Be impulsive — it’s cool! Violence works! 3 days is enough to know someone’s soul! Good people will love you no matter what! If it/they are not perfect, it’s broken! If others disagree, you have the right to hurt them back! Sigh.

In fact, these are symptoms of a traumatized brain. I know — I live in one that’s constantly being re-traumatized. Black-and-white thinking, catastrophizing, blaming, panicking — being totally overwhelmed by huge emotions, forgetting that there is a complex human being in the midst of them, one who HAS feelings but IS NOT the feelings.

This is the un-managed internal reality of central pain: full-on red-alert, a fire drill for an inferno that never stops burning.

Feelings, impulses, drives — they’re information, not commands.

Consciously or not, we choose what to be guided by.

This is why self-management is imperative for us — and why we can be a bit fragile when the pain is high, or we have to think about being sick (like at the doctor’s office.)

We have to work to manage this impossible mess without looking like we’re falling apart. If we don’t succeed, if we simply react the way “normal” people would “normally” react under that kind of stress, we can easily lose everything — doctors, jobs, family, friends, allies, resources, the lot. We have to be abnormally strong to handle abnormally large, abnormally relentless assaults on our peace and poise, not to mention our lives and minds.

This is why being “super-human” is not a bad concept — imagine being a better survivor than X-Men’s Magneto, a cannier manager than James Bonds’ M, as resourceful as Coyote, as implacable as Kronos, as benevolent as Kuan Yin. These mythological models, not “normal human behavior”, may be the only standards that are even applicable to people in extraordinary circumstances.

For people like me (and there are a lot of us, not only from central pain), with a brain constantly under siege from noxious primal signals and in a socio-historical moment aiming to squash the disabled/poor/female/peculiar like bugs, this understanding is transformative, and very freeing: I can’t aspire to be normal, let alone change the world… but I can learn to choose my responses, and if I have to aim higher than normal to do so, there are still models to follow — even if I have to go inch by inch, fist over fist, to follow them.

It takes practice, but it’s possible. As with muscles, our habits of mind get stronger with practice. Of course it takes time, but the time will pass anyway, right?

Catching the wave

The first habit to develop is learning to notice when the wave of emotion rises. That is the sweet spot, right before emotional/physical pain (in all their strangling glory) take over.

That’s the moment when it’s easiest to catch on and remember our larger job of doing well despite everything, the moment when it’s easiest to pick a good “afterwards” to aim for and follow the inner prompts that can lead to it.

I find that the temporary relief of discharging my anguish or rage is absolutely nothing compared to the lasting relief of making things better, one choice at a time. At times, I have to remind myself of this, pause, breathe, and take the time to choose a better response than the first or strongest one that occurs to me.

It’s a constant discipline, rather than a destination; life always has more surprises in store. But I’ve had practice, and those “choosing my afterwards” mind-muscles are in decent shape. If I can get clear of mind-muddling mold, they might get even better.

Hard to do that without being able to catch the moment. It took time to learn to identify it, and when I’m particularly disrupted by pain or shock or toxic exposures — especially toxic exposures — catching that moment can be temporarily impossible.

Given good nutrition and no toxins, though: reaching for a better way to be, comes soon after we learn to identify that difficult moment. It’s a wonderful skill; makes a person very powerful in the wider world, as well as in the interior world of “living anyway.”

I think it also improves my writing 🙂

Beyond the moment

I said earlier that “always an afterwards” was about more than consequences. It was an important part of my getting through what I call The Hell Years. It reminded me that, if I survived this — whatever it was — I’d get to find out what would happen next.

And boy, was that a journey worth making!

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Shore Break

There I was, trying to steer the 3-headed rhinoceros that is the de-mold-the-mobile-home project (dubbed “DeStroy DeMold.”) Two of my volunteers had gotten sick with things that could conceivably relate to:

  1. Their refusal to wear respirator masks, and
  2. The craptastic nature of the stuff coming out of the walls.

So, no more volunteers, and I was trying to figure out what next.

With heavy multiple mold exposures.

Detail of a Bosch painting. Whiskery demon holding and reaching for a misereable man.
Bosch knew.

And food poisoning (different story.)

First things first

I declared a personal moratorium on entering my place unless I had to. Ditto for my car.

Counting the inescapable mold-factory of the leaky place where I’m staying, that means I had been sucking in three, count ’em, three, substantially different species of mold. …And feeling very sorry for myself that I was strangely unable to compensate with supplements and air filters, think my way through the end of a compound sentence, get through a pain flare without going zombie, or recover from an ordinary bout of hit-the-opposite-wall vomiting.

Sorry, letting my vile sense of humor run away with me there. I actually did get it all in the toilet; I’m just not sure how.

Attitude adjustment (with cast of characters)

Last week, my gracious hostess Laurie and I realized we had not gone to the shore this year, despite our good intentions. 24 hours later, she had us all set up, and invited her excellent friend & traveling companion Dave along for the ride.

Dave & Laurie are wonderful together. A gal so butch her nephews call her Uncle Laurie and a guy so cis he could — and did — show up in white Gucci snaffle loafers and still look straight, they bring out a gleeful zest in each other that’s contagious.

woman and man in nearly identical shirts, thumbs up and laughing

Laurie was our hinge, the one who is so close to us both, and it was impossible for me to be stranger-shy with their buoyancy lightening everything.

Dave has an enormous, unflappable black lab named Bernie as his guide dog, who avoids being lethargic simply through being so good-natured. Laurie has a teeny weeny toy fox terrier named Vinny who is irretrievably in love with Big Black Beautiful Bernie.

Imagine a stately black galleon with a high-powered white tender zipping around alongside, and you’ll have the image perfectly.

I almost brought the cat…

cat,distorted with closeness while coming at the viewer

But five bodies and 14 feet seemed like quite enough.

So: me, a human; Laurie, human, with Vinny, pocket pup; Dave, human, with Bernie, guide dog.

If everyone sucked in their hips, there was just room to pass between the beds in our one room.

The weather was perfect. The waves were influenced by a hurricane out at sea, and were nearly Californian in size and color. The dark sand was almost silky. The water was about as warm as it gets, brisk but not bracing, according to Dave’s well-tested algorithm.

photo of everyone but me, on the beach

What I did on my vacation

It wasn’t an eventful trip on the outside — mostly. At one point, I saw Vinny heading down to the water, mooning hopefully after Bernie; I almost called him back, but if you’ve ever seen a terrier on a mission, you know that only going over and picking him up would change his mind. Something told me to wait.

Bernie ambled into the lap of the waves, checking on his master. Vinny toddled after, absorbed and elated. The wash of the wave splashed up Bernie’s ankles; Vinny’s little legs shot out to the sides as he tried to brace against the movement, and off he went. His human turned with perfect timing and lifted him out of the water as the backwash carried him to her, knee-deep.

I was braced to race and plunge in for some dog-rescuing, but watching that remarkable little ballet unfold was quite a moment.

Vinny isn’t the only one who got a bit more than he bargained for.

I was having a bangup time, playing at the shore break. Diving under, popping over, and frequently getting trashed by the waves is such a blast. I might have some retriever in me — probably more than Bernie, who couldn’t be bothered with boisterous water.

I saw two waves converge at an angle, and jumped on them to ride the double-act into shore. Little did I know that two other waves had approached that intersection from behind me. I got washing-machined like I rarely have — completely bashed and thrashed and flung around under the water. My sinuses got washed along with everything else. I’m really glad there were no solid objects (besides me) in that water.

I came up hooting with glee — then felt something was amiss.

Somehow, over the surf, the words, “It came out!” reached me from our pretty neighbors on the thinly-populated beach. I looked down and, sure enough, one half of my generous allotment of, um, chest flesh was making a determined dive for freedom.

Wrestling it back under cover was considerably hampered, not only by the cantankerous mechanics of a soggy bathing suit, but by the fact that I was laughing so hard I could barely control my limbs.

I’m over 50. I don’t have to care what people think. Laughing is so much healthier than anxiety!

Most of my exits were much more successful.

me climbing out of the surf, with another breaker behind me

But seriously…

Apart from that, we just found the nearest beach on the first day, found the best beach on the second, chatted with the neighbors, walked, ate, told each other stories, and enjoyed the muscular shush of the sounds of the shore. We all got ice cream.

It was transformative on the inside, at least for me.

I found that I kept talking about my childhood and my family of origin — not about life as a spoonie or neuro-nerd or an Isypedia of potentially life-saving information, but about life as something quirky and full of character; if not innocent, then willing to be optimistic in spite of it all.

That was odd, but refreshing.

After a day at the seaside and a good night’s sleep (despite the pillows fighting back against my leaning-tower arrangement), I woke up feeling…

What’s the word…

Um…

Oh, how shall I put it…

What do you call it when you feel like you can tell you’re inside your skin and the mental lights are on and you can tell what’s going on around you? Y’know, zestful and buoyant and present and awake and alive?

Oh right.

I felt more like myself than I had in about as long as I can remember.

woman walking up beach, looking totally at home in her skin.

THAT was the opposite of odd, though it was totally unexpected.

Mold toxicity: CONFIRMED.
Prognosis: EXCELLENT.
Recommendation: GIT THAT SH-T.
Target: ACQUIRED.

My brain unfolded like an origami map and alternative ways to get this mobile home taken care of — AND paid for — emerged from the crumpled mess of blocked avenues and despair.

And all that quiet, worried persistence about getting in at least one short walk most days? Well, the exercise intolerance packed it in, too — I walked a couple of miles the day before we left, the day we arrived, and the day after; definitely no exercise intolerance, without the wicked mold exposures.

This is huge. So huge.

Being able to exercise opens up new worlds of improvement. Nothing is as stabilizing to every body system as exercise. Few things are as stabilizing to the brain. I can’t even find words for the explosion of gasping hope I hardly dare to let myself feel.

My planner is about to explode. I’ve got things to do this week! WOOHOOOO!

A word to my  longtime readers & fellow spoonies (a wise & canny crew)

Remember all the times I’ve said that it’s sometimes just a question of getting through one day, one hour, or one breath at a time, and that there is always an afterwards?

This, my dears, THIS looks like an afterwards worth surviving long enough for. Let’s see what I can make of it.

May we all have the right care, the right meds, the right supplements, the right routine, the right friends — and the right breaks.

Coda

30 hours

Five years of no ocean
ended at last:
the waves curled almost Pacific blue
and crashed most assertively;
soft silky sand
burled them mackerel-patterned
below utterly spotless blue skies.

I ran out all daffy abandon
“Hi water! Here I am!”
and the waves came to greet me,
and beat me, and rub me all over
like a pack of retrievers convinced I held food…

A smug Californian, I dissed the sun’s vigor
But turns out I do burn — quite well! —
on Block Island
in mid-September…
but oh, it was worth every sting.

Rainbow sky melts above while returning.
Sun rivers and I’m stupid happy
One glint, one shimmy, and all I can smile
is eyes locked on water, waiting for more.

woman looking at sunset over water, dog nose poking out of jacket.

Shameless plugs

DJ Fabulous! LaurieB, a local fixture at sober fests and community events, works in Western Massachusetts. She plays all styles, genres, and eras of music, specializing in all-ages events. She gets people smiling and moving and having a good time. 🙂

David Roulston, Esq, is the sort of lawyer every  community should have. He does, or has done: probate & wills, criminal defense, designing implementation of legislation, mental health and community health, poverty & homeless issues, and business law.

Laurie took almost all of the photographs. When I mentioned I’d credit her, she said, “I think they’ll figure it out. Who else is gonna take them? The blind guy??”

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What I did with my summer

I’m aware that I disappeared for awhile. Obsessively focusing on housing and breakup, everything else sorta disappeared.  Here’s what that period looked like, framed around the 3 dimensions of life I always update my doctors on — physical, mental/cognitive, and emotional changes:

June

Physically: holding together with bubble gum and baling wire. Somehow didn’t injure myself with packing, storage, and less and less help with errands.
Mentally: dear gods and little piglets, did I ever get a lot done! Dealing with my own move, identifying resources for nontoxic and used building components, dealing with an identity theft, getting a new provider on board (acupuncture), looking at homes, finally getting an old friend out of a deadly situation and somewhere safe, and still keeping my appointments.
Emotionally: J used his last Saturday here helping a friend. He left late enough on a Monday that we could have a bit of morning together and say a proper goodbye. Best moment we’ve had in a long time. And so, my partner of seven years removed his hugely-wounded self to the other side of the continent, so he couldn’t hurt me anymore.

July

Physically: living in one mold factory, driving in another, and working in a third. Discovered that Borax, vinegar, and hydrogen peroxide are very unkind to auto interiors and soft furnishings. Discovered concromium, and hosed almost everything down with it – twice. Much improvement.
Mentally: bought a house (mobile home in a sweet park, actually – who knew!)
Emotionally: saw a beloved friend from my youth. Woot! After five friends, one by one, sat me down and told me how was going to be, I promised to include my friends in the work of making my home safe for me. Horrifically, one of my dearest and most dependable friends dropped dead. See Taming the Beast for some of her outstanding work on nontoxic self care, mast cell disease (weird allergies), and central-pain management.

August

Old amber-screen lettering showing *TILT* like on old pinball machines

Physically: much stronger than this time last year, but still have exercise intolerance, so have to go carefully. Tried to lower meds to summer pattern, but whoops! Bad idea. Definitely not getting the usual warm weather recovery; so, having a chemically and biologically safe home is more important than ever.
Mentally: flailing, burned out and not willing to admit it. Housemate/hostess pulled my head out of my butt and got me back to pacing, alternating activity and rest. Figured out how to organize the work on my home.
Emotionally: it’s extremely reassuring to be 5 min. from the highways, 10 min. from the store, 15 min. from the hospital, 20 min. from nearly half my regional friends, and have a bunch of sweet-natured busybody neighbors making sure I’m all right. Started opening up my social world, now that I’m here.

Summary

It’s been one hell of a summer.

When I look inside, I see myself as entirely raw, a walking mass of weeping wounds. Naturally, this doesn’t normally show, because I’m a responsible painiac and I’ve had 20 years of experience in choosing what to show, what to focus on in public.

Despite so much wounding, healing is possible. In fact, it’s imperative. It’s what I do.

For better or worse, here I am, still alive and kicking. With staunch old friends, something resembling a plan in place, and one new friend who touches on my past in interesting ways and opens up my sense of an unexplored future, I’m looking ahead again – not as a duty, the job of the living; but because it could be really fun, and how much fun I have is largely up to me.

head shot of blonde woman grinning 3/4 face

I’m outrageously lucky. Yeah, multiple crap-tastic diseases, too little income, too much loss and pain; yada yada, that’s life sometimes. In these harrowing times, kindness, love, and care define my world, and that’s so very wonderful.

Life’s short. Take care of yourselves and each other – and do have fun. It makes you stronger 🙂

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Back to work

The massive physiological destabilization triggered by J’s departure doesn’t change my own deadlines: I still have to get out by next week, stay somewhere in the interim because I’m now too frail to camp alone, work out mitigation strategies that’ll work for both me and my hostess, and maintain forward momentum on my house search.

The physiological damage does make safe housing more critical. My body is borrowing against a future it may not have, to get through this difficult period. Fact of spoonie life.

I have movers lined up to get the furniture out, but I don’t yet have storage to put it in. So that’s today’s job.

I was nibbling at two properties, both of which are now out of reach, but it was a learning experience:

  1. Small cheap homes in the country go like lightning. By the time my realtor and I could both get to the house that looked close to being right, it was already under offer.
  2. Renovating a good shell, even when the demolition is already done, takes serious time, as well as money.

This second point has a lot of bearing on my work here.

From a  builder’s perspective, building a house from scratch is the most expensive thing you can possibly do. Buying a shell and renovating it is the ideal combination of price and control over the result.

From the homeowner’s perspective, where the heck am I going to live while the renovation is done? Rent isn’t cheap, and rental units — for reasons described at much length in previous posts — are too risky for too many reasons to be a rational option.

So, I’m putting “buy a plot, preferably with a driveway, well, and septic, and put up a new cottage” back on the list. It may spend out my money up front, but the housing formats I’m considering are put together very quickly, so I’d be in safe shelter in fairly short order. THAT would save me a LOT!

I’m way beyond frustrated or exasperated. I’m in that still, calm, bitter pool on the other side. One foot in front of the other. Onward.

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A fond farewell

J just drove away from here for the last time.

Friday, he filled up the kindling box and organized the firewood to his satisfaction.  (Yes, it has been cold enough in the mornings to need a fire sometimes. In late June.)

Saturday, he helped my friends change out a very troublesome toilet. It was not a task for the faint of heart.

En route, he let me know he’d decided to leave this weekend, 2 weeks earlier than planned.  I could have handled it worse, but it wasn’t good.

Being part of doing something as fundamentally Freudian as changing a toilet helped, though. We both were a lot better afterwards.

Sunday, he took a “recovery” day but still mowed the whole lawn, did the lion’s share of washing every stitch of clothes and linens for me, cleaned the kitchen, and vacuumed the living room.

I wrote up an illustrated “so long & thanks for all the fish” sort of letter for him, so he could leave easier in his mind. I saw him read it, pause, smile upside-down and let one eyebrow drift up. A shadow lifted.

Neither of us slept much last night, but spent hours hearing the other toss and sigh a floor away. While I was rattling around upstairs at midnight, he came up and asked for alka-seltzer. I gave him half a box for the road. (It’s part of my gluten-exposure first aid kit.)

This morning, unable to lie down past 5:40am (my feet were spasming something awful), I got up and took a shower straight away, giving him time to slip away if he wasn’t up to seeing me. He waited until I was dressed and ready, then gave me a warm hug and a warm kiss and asked for my blessings.

I carried the cat out to wave goodbye.

When I came back, there was, of course, exactly the right amount of water in the kettle for my tea.

So, this is what it looks like to let go with love.

It’s still devastating, absolutely devastating, but a lot less wracking and a lot quieter than the usual alternative.

And now, back to my regularly-scheduled programming of coping with agony, loss, DIY for gimps, too much work with too little time and capacity, appropriate depression/anxiety, and impending homelessness.

Send in the clowns!

Today’s task: get my last box into storage, retrieve my camping stuff, and assess whether I’m safe to use the table-saw I’ll need to rent to do the subflooring downstairs. Probably not a good idea. That might have to wait. At least a week.

Okay, storage it is. And work on prepping the car for camping. Because the future happens whether I’m ready or not.

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Cold Watershed

In my blogs on getting safe housing, I’ve researched and discussed the following:

  • What aspects of ordinary housing do me in
  • What alternative building techniques could do for me
  • What’s involved in a fresh build, nontox and otherwise
  • What “reno” can really mean for me
  • All within my picayune means.

The last bullet point makes it all increasingly absurd.

In the most recent housing blog, I started getting my head out of that two-digits-to-the-right-of-the-decimal possibility. The  housing market has been creeping up, and this year it’s definitely putting those possibilities out of reach.

It’s time to stop thinking I can go it alone. I clearly can’t — not in any way.

Now, time to start researching in 2 different directions:

  • What’s a reasonable range of cost, given the kinds of houses that are on the market, to acquire a fixer and renovate it to my requirements?
  • How many other people or units could that accommodate, generally?

And  then, given those harder and more realistic numbers, figure out the following:

  • How to get that funded
  • Who’d be interested in funding it
  • A list of good prospective tenants who need safe nontox housing
  • What the contract with the funders would look like (several ways that could go)
  • What the contract with the tenants should look like

Because, as my Dad would have said and my other relatives still do, better keep everything clear and above-board. That’s what contracts are actually supposed to do.

Of course, this contract will have to have contingencies for my incapacity and death as a real possibility. Plan A, the place goes on the market and all investors (including my heirs) get their money back. Plan B could be more interesting. Depends on who shows up for this.

And all of this assumes I can stage-manage all this.

I’m so scared.

Meanwhile, back to packing and health appointments. One foot in front of the other.

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3-4 solid tools for tough times

(If you’re looking for my housing-search info, go here for the latest with all the tables, and here for the one before that 🙂 )
I’ve often remarked that one of the really SPECIAL things about CRPS is the way it essentially “re-traumatizes” the brain: in many ways, it duplicates what happens to the brain when horrific things happen — car accidents, war, etc.
That’s so not right.
This is why we tend to be a leeeeeetle intense at times, and why those of us who survive it long-term become Jedi masters about managing how we appear to feel and how we manage how we really feel.
A key component, as many of you are well aware, is helping yourself find and develop the tools that let your brain process the endless hurt, integrate useful lessons, and release the bitterness, day by day by day. 
 
This is where a regular inner practice comes in handy. I’m sure there’s something most of y’all have got going, possibly related to CBT or DBT or mindfulness, for anxiety, grounding and self-calming; these are great tools. To strengthen yourself further and create more resiliency, try taking that to the next level in some way.
Here are some tools from my life and from survivor workshops and so forth. Individually, they’re amazing. Together, they’re mutually reinforcing and geometrically powerful. They are:
  • Free writing
  • Journaling (not the same thing at all)
  • Disciplined movement
  • Some kind of meditation
 

A. Free Writing:

1. Set a timer or page-count. If possible, use paper and pen rather than keyboard.
2. Once you start, just keep the pen moving forward, no crossings out or edits, just keep the pen moving forward. 
3. When the timer/page count is done, stop right there. It’s okay to finish the sentence, but stop.
> This does something important, which we don’t really have language for but which is absolutely primitive-brain-supportive, that helps de-sting one’s thoughts and experiences.
> Start as short or long as you think it would be successful to do, and go from there. Time spent doing free-writing is never wasted, but running around and art are good too.
> Walk away and do something physical or practical afterwards.
>> Take at least 2 hours before coming back for another round. The brain needs the integration-rest-time, for this to work.
> If you leave out any of these points, then you’re journalling, which is also great, but it’s a totally different strategy as far as the brain/mind/emotional landscape is concerned.
This technique is particularly useful after school, after a big incident when the feelings have calmed down but the mind is still recovering, or before starting a big project.
 

B. Journaling:

1. Put it outside the head and onto a physical medium.
That’s it.
> Journaling can be written, drawn, painted, danced (if filmed), sculpted, photographed, montaged, whatever. Out of the head and onto/into a physical medium.
> We journal for ourselves alone. The writing, pictures, even the dance footage, are not for showing. They might be shown later, after the period of life has passed, but that’s not the point. More commonly, they lay the groundwork for exponentially better art that’s made later.
> Keep them close, where they can be consulted by the one who did them. Nobody else is involved.
> Journaling exteriorizes and preserves our thoughts/feelings/subjectivity so they get less “gluey” and less scatty and become easier to handle.
> Looking over a period of life’s journals can be a great way to shine a Klieg Light of God on things, and free you up to make great changes quickly.
> It’s compost. Don’t expect it to be sweet or glorious, just let it compost. It pays off over time.
 

C. Disciplined movement

Of any sort: dance (Traditional, hip hop, jazz, modern, square, anything), t’ai chi, yoga, playing drums, gymnastics, long-distance running, group sports (plenty of opportunities for seeing both useful and silly ways to handle conflict), canoeing, sailing, etc.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu
> This literally helps organize the brain, especially a growing brain, most especially that of an intelligent child.
> It also helps regulate neurotransmitters to a healthier balance.
> The body working under specific direction of the brain is enormously neuro-protective and re-balancing. Nothing else works half as well for the brain, the mind, the feelings, and the immune and digestive systems, as disciplined movement. Its value simply can’t be overstated.

D. Meditation

Of any of several kinds.
It seems most useful to have a couple of different kinds of meditation, so if you’re not up to one, you can do the other, and the benefits are mutually reinforcing.
1. “Still” meditation is mostly based on breathing with attention, and once that gets more natural, there are progressive layers of using attention & breathing to strengthen, stabilize, and regulate inner life and responses to outer events in life.
2. “Standing” and “Moving” meditations are often easier than still meditation when it’s harder to focus. The posture and/or movement provides a way into the meditative state.  Also, it qualifies as “disciplined movement.” Two-fer!
> Different methods of “still” meditation only become interesting once you’re generally pretty comfortable with sitting and breathing, and being able to put your attention on some place in your breathing path and just rest it there. (Feeling the air come in at the tip of your nose. Feel it come down to 2″ above your navel. Or rest your attention on any place in between. I love the feeling of it moving in my lungs, so that’s where I focus. My mom focuses on the tip of her nose. Just pick one and learn to rest your attention there — with a naturally-upwelling calm delight, yum! — while breathing.)
> Set a timer, and respect it — just like with Free Writing. For that period of time, all you have to do is the meditation, of whatever kind. It’s okay if it’s boring. It’s okay if it’s frightening — you’re actually safe and okay, and it’s okay to breathe through the feelings and let the time pass. The timer is your safety net. Remember that it takes about 5 minutes before and after meditating to transition, and that’s okay too.
> “Standing” and “Moving” meditations come in millions of styles and schools. These include yoga (hot, cold, slow, fast, many schools!), t’ai chi, qi gong (thousands of schools), judo (those who engage in judo are referred to as “playing” rather than “fighting” judo — it was my first martial art; surprised?), aikido, Shaolin — in fact, any martial art with a great teacher… and of course these come in styles relevant to the countries in which each particular school originated — Japan, Okinawa (my Dad’s karate style), China, Tibet, India, even France (savate) and Brazil (capoeira)… lots to choose from.
 
I’ve found that most more-detailed techniques of managing and clarifying thoughts, feelings, and decisions are basically variations or elaborations of these 4 core strategies. Play around and find what works for you.
 
I copied this from a comment I wrote on social media. So many of us need reminding, especially me. I’m so frightened and overwhelmed myself, I want to put this info where I can grab it quick.
Off to set a timer and do some t’ai chi.
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