When momentum uses inertia

Wizard, with hat and staff, standing next to text of Tolkien quote.That last post, about acknowledging the shimmering sense of mortality I’ve lived with for nearly a year? Well, I kept meaning to post an update, but I’ve been having too much fun making progress elsewhere, and simply dropped the ball. I often think, “oh, I should post that on my blog,” and then – pain diseases being what they are – when I shift context to hop online, I’ve forgotten what it was and quickly get sucked into something else.

At the risk of using terms improperly, I found myself explaining this normality of painee existence as a sort of “acquired ADD.” As it happens, our brains get changed in the same places and pathways that ADD brains live in, so that our scans look amazingly similar. Those ADD-like symptoms are definitely not imaginary. I have found myself using adaptations very much like those I’ve read about in some of the terrific books on ADD. I recommend reading up on it. There’s a ton of helpful material on how to manage with and work around these attention issues.

I miss blogging. So, I hope to automate (or at least simplify) moving information here from social media. There are still interesting questions to answer, and I think that useful info we generate in pain groups should find its way to a more stable, searchable medium.

I have been sinking into this life, having acknowledged that inward message about its likely brevity. I’ve been here a year, and love my little flat more and more each day. I’ve been rearranging, creating more usable space within the same square footage. It’s delightful!

I keep the picture that reminds me of those who made this happen over the decorative fireplace, where it looks wonderful, and send grateful thoughts to its source/s – even when reaching out in real life only creates confusion and misunderstanding. We humans generally, and painees particularly, sometimes realize we don’t control how others receive us, but we can steer our own thoughts. So, I maintain this practice of gratitude, because that’s who I am and always have been, and wait for better times.

More health problems? Certainly! I will write about the gastrointestinal circus another time. I’m currently working on digesting a drink of water, and I’d prefer not to think about it until that’s done. This is the big, hairy, stinking follow-up to the first sign of trouble nearly 2 decades ago, which I wrote about (with disgusting toilet humor, inevitably) over at the post Intestinal Fortitude.

Apart from one misunderstanding and that additional body system, this life is amazing. Bit by bit, I’ve been getting a broader pool of professional and personal help and support. Bit by bit, I’ve been coming up with adaptations that bring more art, craft, and productive time into my weeks, although I have to be careful (of course) about changing tasks and changing position and managing time better than I really want to. For instance: “No,” I had to myself yesterday evening; “you don’t get to finish that row of adaptive crochet! I don’t care how pretty this is, or how soft the yarn. These helpful tools only improve my function, they don’t correct the problem! Put. The yarn. Down. Thank you.  Now go do something else.”

So I did.

And then I treated my right forearm with everything in my toolkit. And then I made myself promise not to pick up those tools for at least two more days, because that’s what it takes to recover when I’m forgetful enough to do crochet on a couple of consecutive days. Change those tasks! Figuring out a crafty solution is not as important as protecting tomorrow’s ability. Or even tonight’s. I can use myself hard, but I’m not allowed to use myself up. I don’t count on a ton of recovery time.

I’m back to using dictation software, in order to make better use of my arm time. The stylistic difference is clear to me, but it probably doesn’t matter. This is a good compromise to make, although it’s not necessarily an easy one. Dictation is a strange, slow way of speaking, and it forces me to think in chunks rather than in thoughts and words. But hey, it works!

Times are changing. Whether or not the current American president behaves any better, whether or not the next American president has the moral courage for fundamental changes, whatever, times are changing. My own possibilities are opening up, and I’m not holding back. I didn’t even know I was, but boy, things have changed since I stopped trying to eke everything out! I’ve got things to do, and I’m not waiting any longer to do them.

If I were more self-conscious, I’d throw in a bumper sticker-appropriate remark here. I’m out of ideas. I’ve got other things to do now. Maybe next time. Maybe. 🙂

Take care of yourselves. When you can’t, take care of each other. When you can’t do that, take care of your world. It helps.

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Focus

There’s a lot going on.

My own health took a hard dive late last year and the damage continues to evolve…

…On top of an increasingly human-hostile political system and increasingly deadly climate.

Fun times.

So, yeah, sitting here on a big pile of crap. But that’s not the problem.

What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”

I used to have a lot of projects running at once…

  • I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
    Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
  • I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
    Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
  • As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
    The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
  • I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
    I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.

Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.

There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.

Narrowing my focus long before I could hear the words this clearly.

For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.

So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)

It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.

I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.

It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.

I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.

But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.

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Living anyway, up at the sharp end

Ladies, gentlemen, and others, we can do this.

The tracks have been laid. All we need to do is acknowledge them, and accept where they can lead us.

The most recent relentless global pandemic was HIV. (Note: We still don’t have a safe & effective vaccine for it.) It changed all our lives forever, in ways that most people no longer notice.

My first nursing job was on a unit that specialized in HIV, in 1991. The treatments were new, the extensive effects of the disease still poorly understood, and everything was still very much in flux. Sound familiar?

We were pretty sure how it was transmitted — hence the dawn of Universal Precautions, where old nurses had to learn new tricks, like putting on latex gloves and a mask while running to a code blue. My class learned it alongside our other skills, so we usually found ourselves promoted to leading operations until the “dinosaurs”, who otherwise knew what they were doing, got kitted up.

What I learned from my patients then was that, in facing such a horrifying illness, basics matter:
– good nutrition,
– good information,
– adequate activity,
– relentless adaptability,
– cheerful determination,
– true friends, and
– emotional integrity — the only ballast burly enough to keep a person upright through wave after wave of bereavement and harrowing loss.

Obviously, those lessons tailored my response to my own ghastly illnesses. The more science discovers, the more sense it all makes.

“Emotional integrity? Huh?”
This is closely related to “radical presence” and “radical acceptance”, useful terms in trauma therapy.

This sense of the world spinning out of control, all bets are off, legitimate fear and uncertainty, not sure how we’ll survive, the horror of realizing that we can never go back to our pre-Covid-19 reality? That’s all traumatic, in the psychological sense. It’s legitimately frightening and disruptive of life.

This pandemic is a profound, global, traumatic event, and not everyone is handling it well — some leaders especially.

When dreadful things happen, we want to fly, fight, or freeze.

Flight:
Pandemics can travel with — or to — you, so, as Europe learned during the Black Death, running tends to make things worse all over.

Fight:
Pandemics don’t have faces. They can’t be punched or shot. Doesn’t work.

Try telling that to the weird extremists screaming for their imaginary right to kill and die without even trying.

Ah, denial. It’s so predictable, and it does not help.

The opposite of denial is emotional integrity.

This is the knife that cut through the fog after my Dad died; the sharp anguish somehow opened up my eyes to the silvered beauty of morning mist on the trees, and the bottomless comfort of being around my brothers — the only people to be similarly wounded by the loss, and whose sense of humor is as quirkily angled as mine.

There was no point pretending he wasn’t dead. Nothing would bring him back.

There’s no point pretending that Covid-19 and all that goes with it isn’t happening. Nothing will undo its intrusion or the consequences of our leadership and our collective actions.

It’s okay, and healthy, to let go of the fact now & then and focus on something equally real but maybe more fun, or at least more pressing. Doesn’t change the new reality that awaits the return of your involvement in dealing with it.

The weird and counterintuitive point is this:

Starting from “This is what’s real, and it truly sucks” opens up the barn door and lets out all the good feelings too.

Suddenly the air smells better, my real friends matter more, priorities simplify, internal muddles settle down… Although I become more keenly aware of the grief and loss and pain, it’s also natural to be more aware of the things that help me bear it. It worked then and it has worked through all the 21 years (, 3 months and 21 days) since then, in which I’ve lost far, far more than I ever imagined was possible. (Long-term spoonies and the much-bereaved, you get it. Like many, I’m both.)

You know how the sun keeps coming out and the world keeps turning even though you’ve just had a loss that leaves you almost prostrate? There’s a reason. Open up and let it in. It’ll wash through and leave you stronger.

Emotional integrity is learning how to stand and face the feelings, look straight at them, acknowledge them, name them, assert what they are. Then release yourself into the wider view that incorporates and surpasses them. Grief is complex anyway, so it makes sense, when you face it, to expand awareness enough to accept feelings that don’t suck, too. It’s weirdly freeing.

Sounds odd, but it works. 5 thousand years of meditative development and ~50 years of neurological and psychological science all show this. Powerful tool; simple, though not always easy, to use.

I write this to remind myself, because I’m struggling.

I’ve lost another friend to suicide (not impulsive; she was truly done with her life), on top of the Covid-19 reality and the slaughter of my homing dreams and the shockingly multifarious personal devastations of 2019. Oh, and worsening disease with spreading & intensifying CRPS and either worsening neurovascular dysfunction or maybe a vascular manifestation of EDS, which recently killed a most excellent friend who was my angel of survivorship.

So yeah, tough times. Absolutely craptastic in so many ways. (But it could certainly be worse. I finally reside somewhere safe & kind, and I’m truly grateful.)

But still, I live. Still, I walk. Still, I love. More than ever. Still… I must find a way to go forward.

I don’t have to feel good. It’s a tiresome fact of my life that I almost never do. (The last time was a little over 2 years ago, in a successfully pain-killing vitamin C and Epsom bath after the right meds, my lover peeking in and giggling, and the songbirds going nuts outside.)

I just have to continue to feel — and remember not to close the door too hard or too long on grief and pain, because then I lose joy and wonder as well.

We can do this. We can all learn to do this. I mean that in pure sincerity.

It’s worth the effort of learning to do so at will, and not wait for the rare gifts of unavoidable joy to bring back a bit of life. I think we have to go out and get it, thorns and all.

Of course it hurts. Is that the point? There’s so much more to life than just all this terrible pain. I know that, even when I don’t feel it.

This is the diamond-hard point of “living anyway.” I never said it was easy. What I have said, often, is: there’s a future worth having — we just have to live long enough to get to it.

L’chaim: here’s to living… long enough.

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Nerdy stuff: menstruation, hormones, pregnancy, and pain

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

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

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

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

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

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

MENSTRUAL CYCLE

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

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

PREGNANCY & BREASTFEEDING

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

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

GOOD TO KNOW

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

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There’s always an afterwards

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

A non-obvious choice

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

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

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

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

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

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

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

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

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

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

This image?

big great dane looking down at a little chihuahua

Not a patch on that moment. It was wonderful.

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

The afterwards

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

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

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

I  finally got it

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

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

waves pouring around a still stack of rocks

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

Barely alive

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

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

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

But wait, this gets even funnier.

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

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

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

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

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

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

Becoming super-human, or maybe more fully human

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

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

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

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

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

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

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

Back to reality

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

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

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

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

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

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

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

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

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

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

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

Catching the wave

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

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

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

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

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

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

I think it also improves my writing 🙂

Beyond the moment

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

And boy, was that a journey worth making!

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Shore Break

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

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

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

With heavy multiple mold exposures.

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

And food poisoning (different story.)

First things first

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

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

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

Attitude adjustment (with cast of characters)

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

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

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

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

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

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

I almost brought the cat…

cat,distorted with closeness while coming at the viewer

But five bodies and 14 feet seemed like quite enough.

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

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

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

photo of everyone but me, on the beach

What I did on my vacation

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

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

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

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

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

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

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

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

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

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

Most of my exits were much more successful.

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

But seriously…

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

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

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

That was odd, but refreshing.

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

What’s the word…

Um…

Oh, how shall I put it…

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

Oh right.

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

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

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

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

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

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

This is huge. So huge.

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

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

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

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

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

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

Coda

30 hours

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

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

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

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

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

Shameless plugs

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

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

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

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What I did with my summer

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

June

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

July

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

August

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

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

Summary

It’s been one hell of a summer.

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

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

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

head shot of blonde woman grinning 3/4 face

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

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

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A fond farewell

J just drove away from here for the last time.

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

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

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

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

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

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

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

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

I carried the cat out to wave goodbye.

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

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

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

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

Send in the clowns!

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

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

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