Next step, stop!

Update on wifiddling…
I got an idiot-proof radiation meter. Wifi is in the microwave band of 2,500 GHz and the additional 5,000 GHz band, which are part of the radiofrequency band, abbreviated as RF.

Here’s the reading from upstairs’s wifi, beaming down to where I used to have my sofa:
TriField Meter showing RF reading of .029
Here’s the reading where I have the sofa now:
TriField Meter showing RF reading of .004
I found a couple other hottish spots, but I also found a sitting spot that registers nearly 0 in every direction (as does most of my bed) and that’s where I take tea and pills in the morning.

I really like having data. After finishing my last post, I thought I was going to have to spend $1500 at the very least for partial protection, and start at $2200 for the whole enchilada, and where the heck would I get that? (My savings are tied up in a messy little mobile home I can’t go anywhere near.) Instead, it turns out I just need to move the furniture a little, and stay back from the windows that look next door. MUCH cheaper!

It turns out I’m just shatteringly tired. I’ve been living with too much fear for too long. Fear uses up a lot of energy and neurochemicals. On top of the relentless pain signalling (which uses a lot of energy and neurochemicals) and the neurochemically-expensive and exhausting work of having to juggle the exponentially increased effort and decisions required by disability AND poverty (each of which uses a lot of energy and neurochemicals)… once I got a safe and sane chance to rest, it’s like aaaaall those energy bills are coming due at once.

… To clarify my relationship to an excess of rest, let me relate a work anecdote.

I was new to software. I was still used to the pace of nursing, which is inhuman and unforgiving. I said something about having completed 4 out of 5 of my tasks (which I didn’t realize I had another week to complete) but I hadn’t completed the 5th because, I said with chagrin, I was probably being a lazy cuss.

The entire room erupted in laughter. Me — lazy? What a joke!

After 20 years post-injury and still being upright, articulate, and seasonally functional (which takes a TON of relentless work) I’ve almost adjusted to the idea that I’m the opposite of lazy. What I can do, I will, as soon as I can do it safely and adequately. That’s just how my programming goes. Good thing, too, or I’d never have made it this far.

It turns out I’m just phenomenally tired right now, 99.98% of the time. I’ve begun to stop apologizing for it, because it’s clearly beyond me. It just is, and will continue to be until it’s over.

When I can, I will do more. I have absolutely no worries about that, because I know in my bones that I’m the opposite of lazy.

I just really need to rest. I didn’t know it was possible to be this weary. Of all I’ve read about profound idiopathic exhaustion, the only thing that consistently works with no further damage is to rest thoroughly enough and long enough. Plus maybe a bit of careful, inch-by-inch support with Chinese herbs, which I’m also starting.

Rest. What a concept.

Well, here I go…

Ready? Set?

Resting.

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No wonder I can’t get up! Rad realities

After the ghastly fiascos of last year, imagine my overwhelming relief to finally — FINALLY! — find a clean, safe place to live, in one of my favorite towns in the world.

The past weeks of unbudging exhaustion — starting from roughly the time everyone in the building got back from their holiday vacations — I put down to my body going into a “deep recovery” mode after the astonishing stresses it survived. I knew neighbors had wifi, as most adults do in this country, and noticed I felt better in the sunny side of my bedroom — behind an enormous brick wall, as the bedroom is an addition built onto a century-old, balloon-built brick building — so I’ve been spending a lot of time sitting there, letting all that earthing happen between me and the wifi signals.

Today, more or less out of the blue, two or three neurons fizzed together and I realized there was something differently-familiar to this feeling of having had all the air let out of my tires and my batteries totally drained. There was a knot of yuk behind my xyphoid — right about where the vagal nerve comes through the diaphragm and shakes hands with the stomach on its way past — which has rarely gone away.

Following these clues — my neighbors getting back, the bitter exhaustion, the yuk behind my xyphoid — I pulled out my elderly-but-spry laptop and asked it about the wifi signals it can see.

Here is what it sees in the living room:
List of available wifi networks, several with 4 bars

Here is what it sees in the bedroom, behind the double layer of brick wall with a door in the middle:
List of available wifi connections, mostly 3 bars

That one bar of difference is definitely palpable, to me. Also, I know that one of my near neighbors has turned off their wifi right now (bless them!) because there’s sometimes another network on this list which has all 5 bars when it shows at all; it chases me right out of the living room because I can feel it like an incoming missile to my gut.

This exercise simply goes to prove my longtime suspicion that, indeed, wifi is the Un-Healer for me. I can’t get off the couch for long, simply because I’m being soaked in it all the time.

Give me a moment to get myself together, please. This is tough.

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

It could be worse. I could be unsafe, breathing mold, AND being soaked in wifi.

Solutions

First, a key term:

Faraday cages are structures that use particle absorption, grounding, or deflection to create a radiation-free space inside. I’d expect to incorporate all three elements, for a more durable and predictable kind of protection.

Grounding

There are some low-tech, lower-cost things to try that can have the effect of minimizing my exposure to wifi signals:
– Grounded skin, that is, a grounding mat I keep my skin connected to, to carry away the signal before my body takes it up much. I haven’t had terrific results from these yet, but I may have gotten a bogus mat before. I’ll experiment with wire and foil before investing in anything better.

– Rad sinks (already in place), a mass of metal dense enough to act as its own ground — in my case, big heavy old-fashioned steel filing cabinets. I should really paint them thickly in matte black to get the best results (preventing signal-bounce), but it’s hard to think of a less useful work-setting for a colorist like me. I’ll keep thinking about it, though, because I’m pretty sure it could help.

After that, it gets a bit more iffy vs. more expensive.

Shielding

Make a Faraday-shielded pod I can pick up and move around, and sit in when I’m doing anything for long. Given the inexpensiveness and availability of pop-up structures, black felt yardage, and that shiny mylar stuff, I could cobble that together, probably with a zipped door and a couple of battery-powered computer fans. But dayum, would that be claustrophobic, gloomy, noisy, and a space-hogging eyesore! Also, it would render most furniture effectively unavailable for shielding time.

I’ve tried rad-blocking clothing. This poor challenged body needs a good few feet between my skin and shielding, or the feedback gets incredibly painful. Can you imagine that thing that microphones do with feedback, happening to your spine & everything connected to it? Yeah, that’d be cute by comparison to the experience of me wearing rad-blocking clothing for 5 minutes. So, rad-blocking clothing is not an option for me.

– Creating a shielded-fabric blockade around my bed, looking rather like a mosquito net but costing the equivalent in silver netting, which it often is. Silver is an excellent conductor. If properly grounded (always a consideration for a Faraday cage you want to use for more than an hour!) this can, at least, create a low-rad place to sleep that still has air flow — and room for the cat. It’s not the total radiation seal that a proper Faraday cage should be, but it’s a compromise that works well for many people. I can certainly tell if it needs to be better sealed for my purposes; boy howdy, is that clear to me now!

Shielding & grounding my whole space

Then there’s the costly, smelly-toxic, protracted option of having a minimum of 2 good coats of rad-blocking paint (at ~$200/quart, I’m guessing a total of 5 or 6 gallons for these high ceilings, plus the ghastly oil-based primer required), securely wired into the building ground at appropriate points by an electrician ($1k), with adequate layers of 3M UV-filter film ($?) cut to fit every single window ($hundreds for labor, because I can’t do that), the sashes of which will also have to be painted or filmed over… And do something to cover the gorgeous old maplewood floors to block rad bounce from the basement. That, given my abiding love and admiration of maple in every form, would be absolutely criminal.

So, that’s not going to happen.

Or, of course, there’s the prospect of moving again, to which my internal response is way out of the decibel range that blogs can carry. I have JUST gotten my hotwired system to stop leaping awake every hour or two, convinced I have to pack and move again. I really need not to move for a good while.

This is a great place in so many ways, and I really like being here right now. I aim to make it work.

I project that my solution, whatever it is, will be a compromise, like this home — so much going for it, but still missing crucial elements. I’ll have to come up with something that will protect me enough to heal while I’m here, since that’s the point.

First steps

I think the first thing to do is shield the bed. Like I said, not perfect, but it should improve my overnight recovery-time. The means to do that is readily available and I already know the better makers and materials-technology. I could probably get that up in a week.

After that, I’m thinking portable pod, big enough for a chair inside with a little writing desk. Might rig up a window or viewing port, using something reflective but not too dark.

Any engineers want to come play with these ideas and problem-solve here? 🙂

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A 3-point reality check in the armpit of winter

I’ve got a sweet, safe little spot all to myself now. I can’t talk about it much but the gratitude and relief is STUPENDOUS. It took over a month to begin to come home to the fact that I get to come home now.

Last week, I didn’t spend much time upright. Months of overdrafts on my body’s account were called in: colossal spoon-deficit.

If I’d had the energy to feel much, I would have been alarmed. I just couldn’t. I couldn’t anything: think, choose, feel, read, watch, be.

Pale mass of bubbles from underwater

Just drifted through the hours, mostly lying down, listening to audiobooks I’d read (or had read to me; thanks, Mom!) at least a dozen times before. Drifting in and out of the stories. Falling asleep early, waking late. Weird, spacey surges of energy got the kitchen cleaned a couple of times, and enough whole food cooked (can’t afford premade) to keep me fed for another 2 or 3 days.

The laundry pile and state of the floors don’t bear thinking about. I’ve started cleaning the floor, one square yard at a time, and so far that’s one square yard. Yay!

Last week, I was incredibly seduced by the idea of giving up the considerable ongoing effort of living. Oh, the peace, the comfort, the over-ness…

Eventually, I made an agreement with myself to simply wait until summer. That’s all. Anything else I did would be pure bonus. Even knowing I’ve got dreadfully important things to do, I had to be ready to put them aside to get this internal agreement to work.

Reasons

Of course, part of this is the wacky human version of hibernation, an unsatisfying slowdown without the restfulness or calm feelings that make it pleasant.

Cold dark winters are brutal. I never stop thinking about 2 things: deep warm baths and warm places to go in the winter. There’s no tub here and I’m not doing any more packing for awhile, though.

Compounded by longtime central pain, dysautonomia now with heart effects, bereavement, and recent protracted survival-stress, it’s really no darned wonder that letting this ride stop appealed to me!

I made promises which I take seriously, and there’s no question of my hurting myself. That’s just not going to happen.

I only wanted so badly to stop pushing back all the time, stop doing the relentless self-disciplines around every life activity — eating, sleeping, moving around, taking care of self and pet and home, making it to all those appointments, staying on top of my tasks, tracking the endless cyclogram* of signs & symptoms & exposures & feelings & barometric changes & solar weather & functional levels… you get the picture.

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

What chores await

I want the business from my failed homing efforts cleaned up and moved on as soon as possible, so I can stop paying rent on a useless space. Going back to it is a desperately nauseating thought. The place nearly killed me, I realize in retrospect.

At least one of my friends realized that at the time. Sigh.

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

I’m used to pushing past feelings, of course — “CRPS R US!” — but this stage of illness makes an issue out of being too dizzy or vomity to drive safely. (The vomiting is really intense and leaves me no control of my arms and legs… or anything, actually.)

I toy with the idea of a tree falling on the thing hard enough to trigger an insurance writeoff… happy thought! Well, actually, I’m not fussy; anything that totals it and doesn’t harm anyone would be fine with me.

Dreaming is free. Meanwhile, I’m working on healing as hard as I can. This is one of several weighty and important things to manage, and I know a few of you know how much that’s like trying to run with no legs.

But I’m getting better

This morning, I could actually taste the raw sugar in my tea. That’s kind of amazing. I didn’t realize I’d simply stopped being able to taste sweetness. It’s these little things that give me some rational hope.

This first day that I’ve been well enough to get out, I loaded up on blue fruit and low-FODMAP carbs.

Hubris, meet Reality-check

I’m sitting down to give these palpitations a chance to calm down before heading home. If I’m up to it, I’ll get some digestible protein; if not, I’ll go home and get back to horizontal.

Something about that statement seemed odd. H’mmm…

I know what to do when a statement seems odd: do a simple 3-step reality check!

Isy’s 3-step reality check**:
1. Review what I just said.
2. Take a moment to notice the totality of how my body feels, right now.
3. Think back over past 24 hours and look for other symptoms.

That took 5 seconds for the first 2 steps and another 6 for the third. It gets very efficient with practice.

I said to myself, “Self… Palpitations and breathlessness now, and seeing spots last night & this morning? You’re going home to lie the heck down, pal! No argument!” (The spots relate to blood flow, in my case, so heart symptoms have been acting up in a non-chest way.)

Can’t argue with that.

…Well, I could, but it’d be wilfully stupid and I disapprove of wilful stupidity — not just in politicians, but also in myself. So I’d better get stable enough to drive and then go home and lie down.

1 hr later…
I did.

Cats are masters of pa:ng 🙂

Footnotes
*A cyclogram is a way of charting multiple changing elements in a single system, using a circular graph. It can be useful for seeing overlaps, backtracks, correlations, and other patterns among the different elements. Whether it’s better than an oblong line-graph is a matter of taste, but I find the sense of spinning-ness very apt here!

**Step 1 keeps me on track. I had two professions where everything depended on my getting things right, but I’m not perfect (despite best efforts!) so I got into the habit, very early on, of mental review and double-checking myself.
Step 2 is nearly magical in its effect. I stole it from the stress- and uncontrolled-pain-management skillset. It’s key to getting on top of any mind-clouding moment. Try it out, it’s magnificent!
Noticing the body response is a tremendously powerful step to getting back in charge. Once we can notice the physical self in an overcharged state, we can learn to steer it to a better physical state — breathe better, stand or sit better, lift the neck, release the shoulders — and wow! Suddenly it’s not about being so overwhelmed, it’s about a single moment (in a whole life) which we’re managing and moving more gracefully through. Great tool. Gets better and better with practice.
Step 3 I add for health issues, because chronic conditions need more context so we can figure out what’s going on. I started doing that for patients 30 years ago, so there’s a special rolodex in my brain for recent symptoms. When that rolodex went missing during the Hell Years, I noted symptoms & signs in my journal, which lived by my berth on the boat, always in reach. Over time (time which was passing anyway) that ability gradually got rebuilt.
Tracking matters. It really matters.

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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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Floating again

I’ve removed two posts:

  1. “Departure & apology” is moot, completely overtaken by events.
  2. “Outrageous fortune” has the seeds of a good tutorial for navigating intensely difficult, but very predictably-patterned, situations which painies are very likely to find themselves in sooner or later, especially in relation to other painies. (Currently, it’s mostly “bleeding on the page,” which is not very useful.) With a top-flight professional in the field as a cowriter, I think we can turn that into a useful tool which could help limit damage in other situations and provide good tactics and strategies for self-extrication and perspective.

 

To provide some sort of segue between two very different periods of life, I’m including the end of the second piece here. It seems like a pretty good transition marker.

bursting milkweed pod hanging between rock, birch, and sky

So now… I spend alternately painful and peaceful hours in meditation. I walk in the fresh air whether it’s warm enough or not. I drink another glass of water every time I pass the sink. This will pass. This will pass. I still live, so I must breathe and keep on. This will pass.

It’s now a week … and already the formless future is beginning to gain a bit of shape. It’s nothing like what I’d imagined before. I imagine nothing now. I wait to see what emerges. So far, my family of origin is leaping onto their shining steeds; high school friends are posse-ing up with an offhand, “That’s Buxton; we look out for each other”; and a meditation center that works for me and a glowing kindred spirit have popped out of the fog, pointing out a way before me.

Meanwhile, the milkweed is bursting its pods — a glorious, silken, dizzyingly delicate reminder of the peaceful beauty of letting go…

Outrageous fortune is starting to come from a different direction now. I will feel whole again someday; I feel it in the wind.

Hours before leaving the city after all that horror, my driver’s-side wing mirror got creamed. The rest of that side is fine, hardly a scratch, but… no wing mirror.

As metaphors go, it’s probably good advice:

Stop Looking Back.

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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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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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