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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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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Some Kind of Watershed on the Imp-possibility of Safe Housing

Over the past 14 months I’ve gotten a look at every house I found that was:
1. Already built,
2. In my price range & size range (600-900 sq ft),
3. Judging from the ad, might qualify for a first-time homebuyer loan (which I could get, because sailboats don’t count as homes in this context. Considering how much work sailboats are to live on, I think that’s just precious.)

All 4 of them.

In 14 months of sporadic, but persistent, looking… only 4 houses turned up within my parameters.

Well, actually, only 3 were in my parameters. It just looked SO pathetic, I threw in the house I looked at that taught me just how horrific it could be to buy a repo. I don’t know why I felt a need to count that.

So, really, 3 houses. Only 3 even seemed possible, but they weren’t. They turned out to be marginally too fuddup for the loan, too moldy, or too close to too many Isy-toxic things.

Broke my heart.

The Market

In all this time, there were 2 houses I wanted to view that did, in fact, meet all 3 criteria, but they had a buyer and 5 alternates before I even had a chance to reach for the phone. Good, small homes go FAST here! (If anybody’s looking for steady returns on moderate investments, consider building some, eh? I’d be happy to project-manage that business. It’d be a great example of doing well while doing good.)

Double the target size and price point, and I’d have LOADS of options. The market is littered with 1200-2000 sq ft pocket palaces for a quarter to a third of a mil. Those buyers can be as fussy as they please around here.

The Reality Check

Here are some grim financial realities which bring new depth to the yawning chasm of the imp-possibility of me finding a safe home:

1. Frail, reactive body on SSDI.
NOTE: It’s illegal for anyone on SSDI (which normally brings in government-sponsored health care) to have over $2,000 in personal assests (exempting already-owned house and car), ever at all, even for 1 day, or they can stop your health coverage.
You read that right, folks. In the USA, poor and sick/disabled people are brutally barred from saving up, even in the interests of getting a car or home if they don’t already own one. (That was a GOP mandate. How’s that for fiscally responsible? /headdesk/)

2. Only legally-recognized close relatives are allowed to contribute to a mortgage. No matter how well connected the PDSP (Poor Disabled Sick Person; or, if you’re from California, Person who’s Disabled, Sick, and Poor), or how wide and generous their circle of friends, *nobody else* is allowed to contribute, or else the PDSP *gets no loan.*
NOTE: this was nominally an anti-terrorist maneuver, to keep cells from easily acquiring property. Which makes even less sense than most modern American anti-terrorist legislation… ‘cuz somehow the financial data-mining that’s actually been built into your central processing chip since the turn of the millenium, and is now supplemented by every data stream you dip into, is magically unable to track the source of these gifts, in this one realm of financial transactions? Huh?? And somehow it assumes that terrorists can’t find other ways to meet their logistical needs — a counter-factual assumption, at best. I grew up with actual terrorist threats framing our daily lives; this mickey-mouse magical thinking irritates me at the best of times.)

3. First time homebuyers (c.f. the snarkery in the opening paragraphs) get automatically lined up for a loan called FHA, which banks appreciate because the loan is insured by the feds. All houses bought with that kind of loan have to meet certain standards before purchase.
NOTE: this is generally good, as it ensures that first-time homebuyers start out in a code-compliant home. For me, it’s disastrous, because the standards don’t account for occult mold or proximity to fossil fuel output and EM radiation — but they heavily favor fresh paint and conventional insulation, cheap and reasonable ways to meet the code criteria. These amount to life-or-death issues for me.

4. Ordinarily, it’s extremely difficult — in fact, well-nigh impossible — to get a “one mortgage” or build loan, which you can use to buy a lot and have your own home built on it. Too many people have taken the money and run, or gotten overwhelmed by loads of decisions and delays they’re not used to, or lost their way somehow. This leaves unfinished properties dissolving where they stand, and frustrated loan officers doing much the same thing.

Now, when those loans ARE made, payouts are structured to keep the owner one large payout behind. The idea is to make sure the owner has “enough skin in the game”, a metaphor I always hear in this connection, which is peculiarly apt and especially painful for someone with CRPS.

Also, you need a builder on board who is prepared to advocate with the bank. How many builders really want to face a freaking bank just to get a picayune, weird little job like mine?

Also, my builder would have to be someone comfortable enough with low-tox building to help me be rightly understood when I talk about using high-grade materials in what’s otherwise a cheapest-possible design.

The Current Scenario

So, here’s what I bring to the table:

1. Frail, reactive body needing a small home with nonstandard finishes. Have some resources and loads of information.

2. Some relatives are able and willing to contribute, thank heavens and them!

3. Friendly mortgage broker, glad to work with me and guide me in inserting my info into their system in the most fruitful possible way. (Applied Mortgage in Northampton, MA. I recommend them very highly!)

4. Doctors willing to provide letters on letterhead stating that I do, in fact, have demonstrated needs that affect my safest home environment, and it would be good to work with me on that. (If only their fax machines worked.)

5. Info and analysis by the bucketload, which only needs to be extracted from my brain and the web and dumped out into tables, spreadsheets, breakdowns, overviews, digests, summaries, etc., about just what’s needed and just why it matters and what it really does to me when it doesn’t happen right. With references and bibiliographies for key concepts and key resources. In colors and patterns that are meaningfully coded to the info. In as many copies as they like. In origami folds, if that would help. Tied up in a neat little ribbon — green, as a hint. Sound good?

Of course, given 3 functional hours each day, putting that together is so much easier than it sounds… NOT. If I don’t go out and run errands or appointments, or eat anything the least bit wrong, get only a short walk in as exercise, my voice recognition software has no trouble with my allergy-hoarse voice, and I take 20 minute breaks every 30 minutes absolutely faithfully, I can try to eke that out to as much as 5 productive hours per day!

Who knows, it might happen!

Sysiphus was an amateur.

Because, folks, poor though I am, tiny and unprofitable though my mortgage would be, simple as my other needs are.. there is NOBODY ALIVE who could have more skin in this game than me. And I need the chance to prove that to the bank.

More and more lately, I miss my Dad. I don’t know what he would have done or what he would have taught me in the process, but if he were alive, I would be safely housed. “Legitimate need? Doing your best? Got a rational budget? Okay, let’s figure this out.”

He was very staunch about facing hard realities and, working capitalist though he was, had many thoughtful conversations with his daughter about “from each according to his ability, to each according to his need.”

According to him, he loved that idea.

It was his favorite dictum about distributing resources, and he dearly wished it were realistic on larger economic scales. He worked in a world where it wasn’t useful, but he clearly wanted me to know that he honored it as an ethical guide.

He articulated to me how he used it as a parenting tool with his three gifted, demanding, and wildly different children. He said he’d never parent me the way he parented Older Brother, and Younger Brother was yet another proposition; he tried daily to treat each of us according to what he understood of what we each had, and what we each needed. He knew his perceptions weren’t perfect, and so it was a constant process to keep trying to improve his insight, as he kept trying to keep up with our development.

He explained all that nuance, admitted all that depth of thought and his practical limits, to his 11-to-13-year-old girl… in the late 1970’s. In some ways, he was way ahead of his time.

Through all the stormy years we had afterwards, I never forgot that, at root, he had that much faith in my mind and that much trust in my morals.

He’d be so proud of my diligence in all this.

Now, all I need is a reputable builder who’s up for this job, and enough working-brain-time to put all this medical and practical material together — preferably in the next week, due to the timing of the hard credit-check.

Neither is really in reach, but I’m here to keep trying. Wish me success!

Bonus Points

If I can get this done this summer, and recuperate in a safe home for awhile, then I’d like to put together a plan to make small safe homes all over these hills; I know people who can find the funding, and I know customers who’d be banging our doors down. It’s just that I can’t properly or legally use that program for my own benefit, so I must have my own home first.

Tell you what, I bet the whole process could be neatly documented and charmingly presented in an attractive book on the subject. It’d be one blueprint for a win-win way to help stabilize local neighborhoods, reduce blight, mitigate housing crises, generate middle-class jobs, stabilize local economies, reduce medical costs, and make many people more calm and content. All of which is economically positive in so many ways… and morally spotless.

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Interim choices

After my head exploded last month, it took awhile to recover. It wasn’t happening while I was up to my eyeballs in what I can’t do and can’t change, even with daily Epsom baths and extra antioxidants. So, I visited Mom for a bit, soaked myself in her hugs and books and art and homey-exotic collections of interior dec from my upbringing and her subsequent travels, had lunch with my cousin (who did an outstanding job of mental chiropracty on my crippled thinking), and came home almost ready to face my current world.

Which looks something like this:

  • Approaching the hard deadline for leaving my rented home.
  • Lump of expensive metal sitting in my driveway, not driveable.
  • Housemate & ex-fiance (who asked me to marry him for 5 years, until I said yes, then refused to set a date) who really truly simply can’t choose a life-ward path but is increasingly obsessed with orchestrating his end… with frustratingly irrational obliviousness that that’s what it is. I could write a book about this — it’d make a fascinating novel — but confidentiality forbids.
  • Understanding that, after 7 eventful years together during which we’ve saved each other’s lives more than once, that’s not the choice I make every day I rise up against my own pain etc,, but HIS path is not MY choice to make.

Okay, bluntly, that’s:

  • No safe-enough home.
  • No working car.
  • Newly “divorced.”
  • Expecting to be imminently widowed.
  • Helpless in the face of most of this.

And this is where I tune into the meditative practices, because there’s a way I’ve learned to breathe that lifts my heart and brings me into life, no matter what. Helps me let go of the need to care FOR someone as much as I care ABOUT them. Releases him and his future to the care of the cosmos, which is a lot bigger than me, and has a different perspective on life.

I have to get back to writing perky posts! I have to live with this heavy stuff, but it doesn’t usually set the tone of my being. I can’t allow despair more than a look-in, so I’ve learned what it takes not to.

…Breeeeeathe…

It’s probably needless to say that I prefer to stay on the kindest terms possible. Keeping my connections pleasant is hugely important in managing the underlying chaos of my system, so my nerves have less to be jangled by. One of my personal mantras is: Someone else’s bad behavior is not an excuse for mine. Sounds rigid, but it works well in the service of my larger strategy of keeping my system on a more even keel.

Here’s where I huff on my nails and buff them on my nonexistent lapel: I stopped 4 efforts to start an argument in 20 minutes yesterday, and I only pulled one of my old habits of “managing” his tortured thinking 3 times throughout the day. Just letting it all go. He is his, warts and all. Only he (I think) will have to face his consequences.

I also found a couple of possibly-soft-enough-ride cars I should be able to afford, with a bank loan. Just need to arrange the ride to check them out.

Here’s a little cherry on top of the hopefully-expanding sundae of possibilities: the ugly and ill-considered business choices made by the dealership who sold me that expensive hunk of metal, can be addressed by filing online (no car trip! No need to collect and print my documentation & evidence ahead of time! No repeat visits!) with the state’s Consumer Protection department. PHEW! I’m happy to let the authorities tackle this while I deal with my present needs.

Life is short; keep it kind. Be good to each other.

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3rd panel of triptych: The action of deciding

This is the third panel of the triptych. It took awhile to write. You’ll see why soon.

First panel: my pre-CRPS decision mechanism broke, but look! There’s a hack for that! Using remaining fragments, bubble gum & baling-wire, and lots of patience, I can still stagger through even fairly complex decisions.

Second panel: Speaking of complex decisions, I’m looking for a home that meets my physical needs and my financial limitations. Turns out, there is no such thing… Yet. Crossing every available digit and getting really creative.

Now: I’ve been mulling the origin of the act of deciding. When does that happen? It goes by so fast sometimes, I find myself dancing on a spinning log of results before being aware of stepping onto it.

It’s my nature to leap to a decision and be told I’m going off half-cocked, but what I’m doing is processing huge amounts of information very quickly at a largely subconscious or pre-conscious level. I can haul out all the arguments pro and con on no notice, if anyone wants to hear them.

At least, I used to. It’s CRPS’s nature to pour a whole lot of crude-oil over everything between my ears, so things just don’t happen that fast in there any more, and the gears are more likely to slip and chatter. So, I go through a more iterative process and take much more time. If I could adjust my expectations of myself accordingly, I’d be all set…

At the moment, I’m viewing the action of choice with great intensity. I’m convinced that decisions are especially difficult, especially fraught, and especially crucial, for people with CRPS. (Not that this is a competition. If what you read fits, just circle it and write, “me too.”)

Layers of decision-ing:
Conscious vs. Unconscious

So much happens at the unconscious level before we even are aware of having a choice, that it’s impossible to discuss a mental action like choosing without acknowledging some of the most important barriers to thinking clearly in the first place. These are factors that many spoonies (and all CRPSers) have to live with and figure out how to handle, or decide not to handle and just be driven by them instead. (The enormous initiative required to deal with them is overwhelming, so I gently suggest being tolerant of those who don’t, or feel that they can’t, circumvent the circus acts desribed below.)

  • PAIN: Acts on the most primitive brain, and the primitive brain can’t think past the moment. Not its job.
    • Takes a good set of pain-management tips and tools to nudge the primitive brain to the back of the car, so reason can drive.
  • FEAR: Fear hijacks the amygdala and activates the fight-or-flight syndrome. Hijacked amygdalas distort the brain’s function even further, and the fight-or-flight response further destabilizes the already-wobbly central nervous system.
    • This is a one-two punch for CRPSers. It takes a lot of training and practice to work around that, but it usually can be done.
  • The MONSTER: know thy (current) self. Those of us with horrifying illnesses sometimes feel and seem like we’re taken over by some horrible, biting, unpleasant person who looks and sounds a lot like us, but doesn’t act like we normally intend to. This is tough all around. I find myself being emotionally hijacked — say, by a food allergy response, or a surprise pain flare — and, as I’m sitting there with tears of rage and fear pouring down my face and snarling, inside I’m going, “What the hell is going on? Why can’t I stop this??” It’s The Monster, and it’s off the leash.
    • Because I self-monitor so much, I can usually catch The Monster before things go too far, and I sequester myself (that is, I hide) and do distraction/self-care/Epsom baths/whatever until I’m back in charge as (& of) myself.

Bases for decisions: Information — & Certainty

When is the info in hand enough — both in quantity and quality — to base a decision on? (This is where I really miss those old rapid-processing days.) More fundamentally, how can I tell? Because determining and sorting the value of info is yet another, even higher-order level of processing than collecting it!

Having to make choices based on inadequate, unreliable, or unknown-quality info is a far more common task post-CRPS than pre-CRPS. Stumbling around in the dark and guessing, hoping for the best or maybe for the kindness of strangers, is not yet a default, but it sure is more common.

At some level — probably that mile-high view that my “wise self” hangs onto, whether or not it’s talking to me at the moment — it’s funny to see a super-clever type A whizz kid with delusions of promotion, like I used to be, stumbling around in the dark here. There’s a poetic justice to that, um, adjustment that even I can see. My darker side, perhaps, which I usually inflict only on myself.

“There’s always an afterwards”:
Sequelae & Consequences

Reality doesn’t care what drives my decisions; the “afterwards” I face is going to be what it’s going to be, and derive largely from the choices I make — not the ones I wanted to make, or was unable to make, or wished I could have made. They stem directly from the choice I did make, consciously or not, emotionally or not, rationally or not, wisely or not. It takes, again, a lot of practice and some basic training to keep in mind that there will be an afterwards, and force myself to make the decision that results in a better afterwards — even if it’s less satisfying at the time.

The increasing intransigence of reality is really annoying! Can’t it work with me a little more? Sigh.

The older, poorer, and sicker I get, the less flexible the world around me gets. Being young and perky was all kinds of help — I had no idea!

everyone over 50

I distinguish sequelae (|suh-quell’-eye|) from consequences like this:

  • Sequelae are natural results of something. They may or may not be a problem, may or may not need managing, but they’re just what happens as a result of factors we don’t necessarily control.
  • Consequences are results that must be dealt with somehow. Assessing consequences is part of rational decision-making. Who could be hurt? What might it cost? What kind of damage, or benefit, could happen? They’re predictable, if we stop and think things through properly. So, there’s a level of responsibility involved.

We RISK possible sequelae. We FACE possible consequences.

Too much decision-ing:
What About Control Issues?

In the category of bottomless dopamine sinks…

Trying to control too much of my environment is a total waste of effort. It soaks up decision-making chemistry, burns through my attention like a bonfire, and creates a lot more anxiety for absolutely zero net benefit.

People who knew (or dated) me in my 20’s quirk up one corner of the mouth a lot these days. I’m happy to let anyone decide anything for me — as long as it doesn’t do any further harm. My emotional investment in things like where to meet or what to eat, interior decor, stylistic choices, what others should do — pretty much nil.

My emotional investment in being in control is tightly centered on protecting my immune and nervous systems. That’s about it. Anything that meets those (admittedly, enormous & far-reaching) criteria and then looks for something more from me gets a big, airy, sky-bright “whatever!”

I realized that control issues were really a type of anxiety. I have my past traumas, like most, and loads of current problems which are terrifying to contemplate, so it’s reasonable to be anxious. Not helpful, though. Anxiety stalls my brain out completely.

This ratfink disease forces me to choose consciously — and learn to enforce skillfully — what to let myself worry about. It’s one of the great lessons of learning to live with this disease. Speaking as someone who started out being mildly thrilled by emergencies and wound up, at my nadir, being unable to get out of my home and onto a bus because of long-legged terror looming and lunging at me, I’m the first to say that managing anxiety is a journey, a process, any of those things that won’t be completed in my life because it now is part of my life.

This is why I now meditate twice a day. I was mulling, about a month ago, how much harder it was to keep my temper or keep my brain ticking over at a functional rate. The Dalai Lama’s dictum came to mind: “Meditate for half an hour every day. Oh, you don’t have time to meditate for half an hour every day? Meditate for an HOUR every day!”

I’d gotten to the point where an hour before bedtime was not cutting it any more. Figuring the Dalai Lama has never steered me wrong so far, I added another hour (or so) of meditation, after my morning pills go down.

I retest that now and then, but sure enough, if I don’t have time to meditate for the morning hour, everything takes longer and everything gets worse. If I do take that extra hour, I’m a lot clearer and my rate of being able to get things done — and to know, moment by moment, what I’m most able to do as my “glasses” change — surges up to a new normal. I’d like to get used to that — but never take it for granted!

Counter-intuitive, to say the least, but I care more about what works than about what I understand or believe.

Now, back to wrestling with reality to create possibilities that don’t currently exist… No hurry, though — doing the impossible usually takes more effort; might as well do it right the first time.

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Decisions 2 – housing

Making a major decision, for someone with so little margin for error as a ragged, underfunded, spoony crip like me, means being able to answer all of these questions usefully:

  • What are ordinary needs and requirements, in this situation?
  • What are my particular needs and requirements they create?
  • What’s involved in an adequate trade-off?
  • What does success look like?
  • Are there any choices that meet my needs?
    If so…
  • What are the usual pitfalls?
  • What are my particular pitfalls?
  • How do I avoid or mitigate those?
  • How do I make this decision happen?
  • Red light signals and how to respond.
  • Yellow light signals and how to respond.
  • Gotchas and how to handle them.

So here I am, bringing my laborious and slow-motion decision-making process to finding a home I can afford and survive. Definitely a major decision.

This could be fun. Or gruesome. I’ll find out.

Let’s take a look at this through the decision-making stages I discussed in the previous article.

Developing good info about the problem to be solved

Housing is a crucial human need, especially beyond the 35th parallels.

Hang on, I need to come back. Everything went white for a minute there. (PTSD about facing homelessness and surviving criminally unsafe living situations? Who, me? Yup.)

The need has been around as long as we have, so the laws and practices are pretty predictable.

There are two normal fiscal options: renting and buying. There is one additional option available to residents of Vermont: buy the house from the state, which keeps the land but gives you the right to use the part your house is standing on.

There are three normal physical options: freestanding home, adjoined units (apartments, condos, townhomes/row-houses, etc.), or portable housing (mobile homes and travel trailers.)

Nonstandard options include buying an RV (made and insulated entirely with Isy-toxic materials) and living with a level of mobility and uncertainty I can’t even contemplate any more; or buying a boat (a.k.a. a mold factory) and living on that, which I can no longer afford in any way. I have to eschew them both.

Adult co-housing is a nonstandard option that has some appeal. A group of adults get together, develop a set of guidelines that (through a real-estate attorney) turn into a contract, find and buy a place together, and arrange themselves on the property according to their contract.

I’ve seen that go very well and I’ve seen that go very poorly, and quite a lot in the middle. It’s partly a matter of chemistry, but mostly a matter of writing a good, clear, solid contract and everyone agreeing to play by the rules and being able to live and let live.

All I need is a group of adults who are not only willing and wanting to do that, but have no toxic habits (like painting or baking), are willing to live gluten-free (except for cold food brought in from outside) and are willing and able to give up wifi and live off of hard-wired internet access only — no Bluetooth — and, most annoyingly, respect hard limits on how much time the cable box is on. Radiation off that thing gives me unconquerable insomnia in the other room from 30 feet away.

Let’s look at how the remaining options fit into the questions I need to answer.

What are ordinary needs and requirements, in this situation (home-hunting)?

Safe, dry, warm, with working doors/windows/plumbing/electrics; close enough to where the person needs to be.

Also, it has to be affordable.

What are my particular needs, and the requirements they create?

  • Mold free living, in this green land of upland lakes, swamps, and ubiquitous streams.
  • No petroleum-based volatile organic compounds — a category which includes regular paint, all low-cost and most mid-range flooring, and every conceivable kind of carpet.
  • Significant air pollution. For me, this centers around internal combustion engines, chemical processing, and fossil fuels. (For others, it’s woodsmoke that smells like doom.)
  • Loud noises and the vibrations that come with them. (You know how the nearest bully used to sneak up behind you, and then smack their palms over both your ears at once? Remember that feeling that your head just exploded, and hot shards jinked down your spine? Kind of like that, times about 1000. A vacuum cleaner suddenly turning on can knock me down. I used to live near railroad tracks; not an option now.)
  • Radiation of many kinds. This rules out being near power stations, overhead wires, hands-free phone technology (Bluetooth or cordless house phones) and (this is really limiting:) modern wireless signals, which feel like a blunt spear piercing me just below my xyphoid process and spinning barbed tails through my trunk while injecting molten metal up my spine and into my brain.

So much fun.

Believe it or not, after hearing part or all of this list, I’ve had people ask me, “How do you know that you need to avoid all that?” It’s not the words, it’s the tone. The implication is that all of this is somehow the product of a fevered imagination. If only it were!

I notice my responses, which are not subtle from the inside; I work out what particular exposure caused that response; and, intentionally or not, I get multiple exposures to each of these things because they’re everywhere, so I can test out the theory that a particular exposure causes a particular response.

It takes a special kind of person to go to the extraordinary effort to research substances that affect fragile systems and how, and claim to be that ill and be required to make all those compromises and spend all that money to avoid those materials, and give up so much because of it, without actually having their survival depend on it. That particular mental disorder is extremely rare — a lot rarer than invisible illnesses. Anyway, it’s one thing I definitely don’t have.

Examining the options

Rent or buy?

Good question. Let’s look at those from my point of view.

Renting

Rent tends to cost, month per month, about twice what home ownership does around here, even with all the taxes and fees figured in. Boggles my mind, but there it is. (Homeownership has loads of hidden expenses, but rarely do they double the cost month after month.)

Rentals are supposed to get repainted every two years or between each tenant, whichever is longer. That really sucks for me, because even low VOC paint makes me sick, goofy, nauseous, edgy, and unhappy for weeks.

The majority of rental units have carpeting, mostly cheap carpeting consisting mostly of petroleum derivatives, aggressively outgassing toxins all their lives while harboring mold and less savory things beyond the reach of steam cleaners.

Rental units in my price range are in high density housing (meaning there’s normally pollution, Wi-Fi, and noise completely beyond my control), and every single one that I’ve looked at has a mold issue – a solid, interlaminar set of colonies, usually in the kitchen and bathroom, often in the bedrooms, and if they’re in the bedrooms, they’re in the living rooms as well.

So much wrong.

In any case, unless I can find low income, high density living with non-toxic interior furnishings, nontoxic finishes, hardwood floors, no mold, good air, no pollution and no street noise (which would be fantastic for all concerned!), where all my neighbors have no power tools, dulcet voices, and no interest in using their cell phones every hour of every day (yeah, right), then… I probably have to think in terms of a freestanding house.

From the practical standpoint of having people to say hi to and help shoveling the stairs and the like, I would love to have close neighbors! It’s just that I need not to put myself in a position to be poisoned and tortured by regular people simply living their lives.

Buying

What with one thing and another, I realized a year and a half ago that I would have to focus on a freestanding house – despite all the upfront cost and work involved in that. It’s kind of like jumping off the deep end, an especially apt metaphor for a lifelong skin-diver, deep-water sailor, and former live-aboard “grotty yachtie” like me.

I’ve always had a pretty good instinct for real estate, which annoyed my father more than once – he kept ignoring my advice. The prices here only bobbled, they didn’t bubble; the overall trend has been gradually, consistently, steadily upward for a century or more.

This IS a region where it’s a good investment.

Buying requires good credit, but after LINK some work and time, that’s not a problem.

First-time homebuyers and low-income home buyers have special government programs that make it possible for them to get loans from banks by insuring those loans with the feds. Of course, the federal government has to be working for that to happen. (That could happen any month now. Maybe within a year?)

All I want is a clean, dry, safe-for-me 600-800 square-foot house on a couple acres of buffer zone for ~$135k inclusive, somewhere in the area of Easthampton to Heath to Montague to North Hadley, on a paved quiet road.

This is a reasonable price for a reasonable proposition. However, in two years of looking, it hasn’t turned up.

But I’ll show you what has turned up:

Century floodplain houses

How do you spell “moldfest”? It’s actually called “Sick Building Syndrome”, but either way, there’s a reason these places are cheap and still on the market.
[The century floodplain houses]

Foreclosures
First-time homebuyer loans will not cover these, nor should they. Foreclosures are the ultimate black-box proposition — you have no idea what’s in there, but a few observations and questions have taught me to interpret clues. I won’t bother you with photos, because these have since gone off the market and I’m not researching foreclosures any further:

  • Great little house in a gorgeous spot… with a cracked foundation — I mean a busted-right-open-and-let-the-critters-in foundation.
  • Current tenant dropped not one, but two trees across the driveway. Is that a hint? I was curiously disinclined to investigate.
  • The house has stood empty for over a year, and because of that, any characteristics that weren’t up to modern code are no longer grandfathered, but have to be corrected before moving in. This seems to add 30-120% to the effective price, and in one case I looked at, would have cost 3 times the purchase price just to turn it into a code-compliant property.
  • Extensive plumbing work is often required: in one case, the well went bad; in another, the septic system was toast; in many foreclosures, the sinks and toilets are smashed apart to discourage squatters — and add enormously to the repairs required of pipes, flooring, and walls affected, not to mention the porcelain.

[Several examples of what’s in my price range, with wry commentary]

[The total reno, with the great bones] I love this. I would LOVE to get my hands on this. Sadly, I’m now a formerly handy person. Holding the tools required, let alone breathing the dust and fumes involved, are sot even to be thought of. Breaks my heart, darn it! This would have been so much fun!

My needs and wants are very reasonable, but apparently, a place that embodies them doesn’t already exist.

It’s horrifying to contemplate, but I have to think about building my own. There are so many issues, both physical and fiscal, that it simply boggles the mind. Just to start with, how is a first time, low income home buyer going to qualify for a building loan, even where there is so much documentation regarding these special needs?

I’ve spoken at length with builders specializing in non-toxic homes, one company’s owners giving me what amounted to a three-hour workshop in materials, gotchas, and things to know and watch out for in regard to renovation and building. It doesn’t have to be much costlier, but it requires an enormous amount of project management on my part to keep costs down by researching and sourcing used or overstock fixtures and fittings, hardwood flooring, non-toxic and natural finishes (some of which I worked out how to use on my boat), and so forth.

I’ve come up with a couple of novel ways to simplify plumbing and electrics, which are in compliance with the current building codes. (The electrician and builders I’ve mentioned it to are intrigued and plan to keep my ideas in mind for the future. I find that encouraging.) That’s one way I’ve brought down some projected costs, although it depends on my being able to do certain physical work.

I’ve also researched the toxins, materials, labor, permitting, and costs involved in prefab vs. stick built (traditional) vs. log building here.

What I’ve learned about heating methods (toxicity, mold, fuels, weaknesses, etc.) would bore you to tears. I just have two words: steam heat.

While I have always imagined/dreamed of living in a hexagonal stick built house with lots of windows and two small wings, it turns out my family have always imagined I’d wind up in a little log cabin. It looks like they might be right.

What’s involved in an adequate trade-off?

I have to know where I can be flexible. This wiggle-room could make the difference between having a rational home and spinning off the face of the earth. (Two people who couldn’t find a home in time were found frozen to death yesterday. I’m trying not to think about that.)

There’s a little bit of slack in my needs, but not much.

Radiation (from heavy electrics, heavy electronics, cell phone towers too close, and wi-fi) is a no go.

VOCs that can be washed off, treated with pine and baking soda, or aired out in a few days would be fine.

Treatable mold would be fine, but, unfortunately, by the time it shows, there’s usually a well-established root system inside the wall and mitigation becomes the sort of iterative, messy, relentless, and ultimately unresolved nightmare that usually takes three scream queens and gallons of artificial blood to get across on the silver screen; respiratory struggles, immune failure and mental impairment aren’t nearly as dramatic on the outside as they are on the inside.

What does success look like?

I could be really flippant and say that success looks like an added hundred thousand dollars free and clear in my mortgage account. That would definitely put me in a price bracket that would allow me to have my log cabin, with the right fittings and finishes, in a safe clean area, with everything I need and nothing I don’t. Plus…

I used to dream of having a big enough property to put additional cabins on, and provide safe non-toxic living for friends who like small spaces, and maybe some glamping spots for the summer. I’ve already got 2 friends who’d love to sign that lease as of yesterday, and 3 more who’d love to think about it, and that all turned up in 2 conversations. There is clearly a market for safe, small, inexpensive housing, and it would be a good, benevolent, and sound investment. However, the start-up costs (more buildings, more slabs, more plumbing, more septic, etc.) are unthinkable for me. I just don’t have that.

This is where being poor is super frustrating. (Yes, I really do think this way … I’m more frustrated that I can’t help others than I am that finding a place for my own self is so hard.) I could so easily provide safe and sane housing for people who, like me, are fighting their environments all the time, and who would, if they could, much rather be using their energy to contribute to the world. And helping pay my mortgage. There is no downside.

There is no money for it, either.

Okay, onward.

What does success look like?

It looks manageably small, manageably affordable (or self-supporting — hello, cabins!), safe, clean, healthy, nontoxic, and warm.

I have a lot to do, and a lifespan truncated by probably 25-30 years. I’m genetically wired for my 90s, if I don’t smoke, which I don’t. So I’d better hustle!

In order to do my work (write my books, produce my pain-mitigating products, do live trainings on handling chronic pain and disability at home and at work, etc.) I need a home that doesn’t make things worse; Time alone will do that. It doesn’t need any more help from my living environment.

My success path is very, very narrow. I’m still not sure how to get there, but I have a few more interviews with specialist professionals ahead of me.

Are there any choices that meet my needs?

According to two years of market research, there is nothing already built that meets my needs in my price range.

I might have to make it myself, whether I like it or not, whether it’s easy (which it was never going to be) or not, whether there is any standard path to get me there, or whether I have to forge ahead and work the steps out one by one, going purely by what works for me – as I did with CRPS for so long, before clinical practice caught up with what I was doing.

I’m a very reasonable person. I’m just in a very unreasonable situation.

…Again.

I’m almost used to it. Sigh.

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Decisions, decisions, decisions (this is a triptych)

WordPress has utterly changed their writing UI. Apparently, they felt the need to reinvent text entry… (um… Why???)

I usually hold off on publishing a post until I’ve got the formatting tidied up and the images in. I can’t even figure out how to do that yet. So I’m posting a couple of ragged, really funny-looking articles, because it’s better than not posting at all, and there is SO much to keep up with I don’t want to keep falling behind here.

Back to our regularly scheduled programming…

As I’ve said before, making decisions amidst pain-brain and the neurowackiness of CRPS is not the easiest thing to do.

It takes more effort and time than it used to, but the years have led me to certain strategies that help me make good decisions pretty consistently, even though doing so is such an up-hill task.
[Sysiphus image]

1: Good info about the problem.
The idea of “good info” is key. For health and practical matters, I need my info to be coherent, consistent, reliable, and reasonable. Above all, I need it to reflect reality — in other words, to be true.

Opinions are not info, except when they are.

“Hey, thanks for that totally meaningless sentence, Isy! That’s not confusing at all!”

But seriously — a professional opinion, about something that’s pertinent, does matter. That opinion goes into the data pool.

Personal opinions, which are usually accompanied by logical fallacies[LINK], are not data (except to sociologists and comedians) and will never be useful to me. I can provide my own, if I want them. I’ve got loads of opinions, but they go up on the shelf when I’m culling information.

I need facts, data, professional (or highly-skilled amateur) quality input.

At this point, I’m not always as diligent about that as I think I should be. A large part of this early stage of inquiry is getting a sense of the social and cultural clues. I find it almost impossible to immerse myself in a subject without letting in some of the noise around it. /shrug/ Not perfect yet.

1a: Enough good info

After mulling things for a bit, I find that the lower-quality info annoys me instead of pulling me in, and I seek out more higher-quality info with a better basis in experience or science or whatever the best measure of the field is.

I’m building a mental map of the field, and where I see blank spaces, I try to fill them in with information.

  1. Good information about my options.
    This is where it gets interesting. Because of my significant non-standard needs, which are not so much a matter of taste as of survival (key point there!), I have to put extra time, diligence, and effort into developing a good list of options, because by the time I’ve done a reality check to evaluate my options against my diseases and disabilities, the REAL options available to ME tend to be few — even where most people would have a lot to choose from.

This is one of those occasions where the limits I live with just hit me in the face, and I have to figure out how to deal with a reality most people can’t even wrap their heads around as anything other than a bizarre whimsy or a sign of questionable judgment.

That hurts.

Moving right along here…

  1. Time to digest it

[use nav. tree image to illustrate how I absorb info, so it can be used as needed in any context.]

Reality check #1 — floating trial balloons
This is when I can sound half-cocked, because the decisions are floating around in my brain in about 5 dimensions and don’t readily lend themselves to explanatory words. Action words, yes, but not explanatory ones. So,it sounds like I’m going off half-cocked, when what I’m doing is trying on a decision for size.

My focus is oriented towards implementing my current decision, and of course at the time I always think it’s the Real Plan. If I didn’t, I wouldn’t focus as hard and pay as close attention to what goes on when my decisions meet the outer reality.

At this point, I’ve got the basic decision made, and I’m roughing out how to make it happen.

Because I have a peculiar set of circumstances (in every possible respect, it seems), my decisions are rarely off-the-shelf solutions. Every solution is customized. They have to be, or I suffer, lose brains, and die horribly. Or, at least, things don’t go well. YMMV — my mileage varies all the time.

  1. Digest results and lessons learned
    Just what it says. This is a semi-conscious process that I can feel happening, but doesn’t lend itself well to description. It’s more of the tree-and-grass activity, adjusting and tuning my ideas and understanding all the way down and all the way across and all the way up the related chains of ideas. It takes a lot longer than it used to, but it does happen if I’m patient and let it be.

In time, what I don’t know becomes obvious to me, and what I need to unload just goes.

If, at this point, I’ve got a workable choice, I’m done. Time for the next task.

If not, time to re-assess and re-evaluate.

  1. Seek out more and better info
    At this point, I’m past online research alone; I need to talk to experts. This involves phone calls and meetings and interviews. The face-time may not be free. The mobility may not be easy. I may have to spend more time on the phone than my brain is, er, quite happy with.

This one-to-one contact is a super-effective way for me to get more info out of people than they’re aware that they’re sharing, so if I can afford it — physically and fiscally — I’ll do it.

Naturally, being me (and wanting to get the most out of everyone’s time), I prepare for these conversations. I want to make sure I:

  • Have the vocabulary. I’m not at all afraid to ask for corrections, but it’s essential to have a working vocabulary of the subject and the major professionals involved. An hour or four over a few days of web-reading usually provides enough context for me to get going with.
  • Can show an intelligent interest in them and the subject. They need to know I’m taking them seriously in order for them to take me seriously. An extra 15 minutes on their web site, learning about the people and history behind the industry or company, pays off hugely.
  • Have a clear, specific answer to the question, “What can I do for you?” I need to know what it will look like when I have the answers I’m looking for. That means I need to have a pretty good idea what my questions should be. This is rarely as easy as it sounds. All those orbiting words and ideas have to be beaten into some kind of shape so the question marks bursting out of my head have meaningful sentences in front of them.
  • Have note-taking or recording equipment appropriate to the format of the meeting and my physical and attentional abilities at the time. I need notes. As medical professionals get drilled into our heads, “If it isn’t documented, it didn’t happen.” Plus, I want to make sure I get the data right. The ideas I can process; it’s the facts and figures and new terms I need to preserve.
  • Correct contact info for those I want to talk with. (It’s the little things…)

Since the bulk of my online research has already happened, the online part of this “more and better info” search is largely backward-referring:

  • Reviewing the websites I found most helpful
  • Chasing down data or info that seemed less important then, but deserves attention now
  • Filling in holes I didn’t notice or didn’t care about before, but want to clear up now
  • Going through my Evernote directory, if it’s a subject that needs one, and making sure I have enough info in it that I could go back and reconstruct my reasoning just from my information pool.

The discussions and “interviews” with friends and trusted contacts are important (especially in relation to whether an option matches my needs) but much more casual. A significant exchange can happen in 15 seconds at the deli counter or between gossip and talk about the weather. I can “download” a huge amount of info in these brief, solid exchanges with people who know me well.

Therefore, after a certain (large) amount of data-gathering, thinking, and processing, it’s essential for me to do sanity-checks and get assessments from friends and contacts I trust in that context.

  1. Reality check #2 — feasible plan, with fallbacks
    This is where the adhesive meets the tacky surface. There’s a lot more weight and momentum behind a plan that falls into place after all that thinking and working and studying up and experimenting, and it shows.

At this point, I should know what a successful outcome involves, what the major pitfalls — both generally, and for me particularly — could be and how to avoid or mitigate them, and what the likeliest way to implement the decision successfully should be. I should also have a good idea what “yellow light” and “red light” signals to look for, and what to do if they happen. I should have a good idea what the first round of “gotchas” might be and what to do to avoid them or deal with them. (Later “gotchas” are less likely to be out of the blue, and can be figured out more easily.)

To think it used to be so easy, and lightning quick, before I got sick.

I remember wondering, almost a decade ago, how I could possibly make sound decisions when there was so much that was so uncertain in my mind. The time passed, I kept working on it, and the decisions involved in making a process for decisions evolved into something repeatable and reliable. Phew!

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