I’ve removed two posts:
- “Departure & apology” is moot, completely overtaken by events.
- “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.
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.
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.
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.
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.
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.
It was great preparation for living with central (that is, driven by the brain and spine) pain.
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…
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!
In my blogs on getting safe housing, I’ve researched and discussed the following:
- What aspects of ordinary housing do me in
- What alternative building techniques could do for me
- What’s involved in a fresh build, nontox and otherwise
- What “reno” can really mean for me
- All within my picayune means.
The last bullet point makes it all increasingly absurd.
In the most recent housing blog, I started getting my head out of that two-digits-to-the-right-of-the-decimal possibility. The housing market has been creeping up, and this year it’s definitely putting those possibilities out of reach.
It’s time to stop thinking I can go it alone. I clearly can’t — not in any way.
Now, time to start researching in 2 different directions:
- What’s a reasonable range of cost, given the kinds of houses that are on the market, to acquire a fixer and renovate it to my requirements?
- How many other people or units could that accommodate, generally?
And then, given those harder and more realistic numbers, figure out the following:
- How to get that funded
- Who’d be interested in funding it
- A list of good prospective tenants who need safe nontox housing
- What the contract with the funders would look like (several ways that could go)
- What the contract with the tenants should look like
Because, as my Dad would have said and my other relatives still do, better keep everything clear and above-board. That’s what contracts are actually supposed to do.
Of course, this contract will have to have contingencies for my incapacity and death as a real possibility. Plan A, the place goes on the market and all investors (including my heirs) get their money back. Plan B could be more interesting. Depends on who shows up for this.
And all of this assumes I can stage-manage all this.
I’m so scared.
Meanwhile, back to packing and health appointments. One foot in front of the other.
After my head exploded last month, it took awhile to recover. It wasn’t happening while I was up to my eyeballs in what I can’t do and can’t change, even with daily Epsom baths and extra antioxidants. So, I visited Mom for a bit, soaked myself in her hugs and books and art and homey-exotic collections of interior dec from my upbringing and her subsequent travels, had lunch with my cousin (who did an outstanding job of mental chiropracty on my crippled thinking), and came home almost ready to face my current world.
Which looks something like this:
- Approaching the hard deadline for leaving my rented home.
- Lump of expensive metal sitting in my driveway, not driveable.
- Housemate & ex-fiance (who asked me to marry him for 5 years, until I said yes, then refused to set a date) who really truly simply can’t choose a life-ward path but is increasingly obsessed with orchestrating his end… with frustratingly irrational obliviousness that that’s what it is. I could write a book about this — it’d make a fascinating novel — but confidentiality forbids.
- Understanding that, after 7 eventful years together during which we’ve saved each other’s lives more than once, that’s not the choice I make every day I rise up against my own pain etc,, but HIS path is not MY choice to make.
Okay, bluntly, that’s:
- No safe-enough home.
- No working car.
- Newly “divorced.”
- Expecting to be imminently widowed.
- Helpless in the face of most of this.
And this is where I tune into the meditative practices, because there’s a way I’ve learned to breathe that lifts my heart and brings me into life, no matter what. Helps me let go of the need to care FOR someone as much as I care ABOUT them. Releases him and his future to the care of the cosmos, which is a lot bigger than me, and has a different perspective on life.
I have to get back to writing perky posts! I have to live with this heavy stuff, but it doesn’t usually set the tone of my being. I can’t allow despair more than a look-in, so I’ve learned what it takes not to.
It’s probably needless to say that I prefer to stay on the kindest terms possible. Keeping my connections pleasant is hugely important in managing the underlying chaos of my system, so my nerves have less to be jangled by. One of my personal mantras is: Someone else’s bad behavior is not an excuse for mine. Sounds rigid, but it works well in the service of my larger strategy of keeping my system on a more even keel.
Here’s where I huff on my nails and buff them on my nonexistent lapel: I stopped 4 efforts to start an argument in 20 minutes yesterday, and I only pulled one of my old habits of “managing” his tortured thinking 3 times throughout the day. Just letting it all go. He is his, warts and all. Only he (I think) will have to face his consequences.
I also found a couple of possibly-soft-enough-ride cars I should be able to afford, with a bank loan. Just need to arrange the ride to check them out.
Life is short; keep it kind. Be good to each other.
This is the third panel of the triptych. It took awhile to write. You’ll see why soon.
First panel: my pre-CRPS decision mechanism broke, but look! There’s a hack for that! Using remaining fragments, bubble gum & baling-wire, and lots of patience, I can still stagger through even fairly complex decisions.
Second panel: Speaking of complex decisions, I’m looking for a home that meets my physical needs and my financial limitations. Turns out, there is no such thing… Yet. Crossing every available digit and getting really creative.
Now: I’ve been mulling the origin of the act of deciding. When does that happen? It goes by so fast sometimes, I find myself dancing on a spinning log of results before being aware of stepping onto it.
It’s my nature to leap to a decision and be told I’m going off half-cocked, but what I’m doing is processing huge amounts of information very quickly at a largely subconscious or pre-conscious level. I can haul out all the arguments pro and con on no notice, if anyone wants to hear them.
At least, I used to. It’s CRPS’s nature to pour a whole lot of crude-oil over everything between my ears, so things just don’t happen that fast in there any more, and the gears are more likely to slip and chatter. So, I go through a more iterative process and take much more time. If I could adjust my expectations of myself accordingly, I’d be all set…
At the moment, I’m viewing the action of choice with great intensity. I’m convinced that decisions are especially difficult, especially fraught, and especially crucial, for people with CRPS. (Not that this is a competition. If what you read fits, just circle it and write, “me too.”)
Layers of decision-ing:
Conscious vs. Unconscious
So much happens at the unconscious level before we even are aware of having a choice, that it’s impossible to discuss a mental action like choosing without acknowledging some of the most important barriers to thinking clearly in the first place. These are factors that many spoonies (and all CRPSers) have to live with and figure out how to handle, or decide not to handle and just be driven by them instead. (The enormous initiative required to deal with them is overwhelming, so I gently suggest being tolerant of those who don’t, or feel that they can’t, circumvent the circus acts desribed below.)
- PAIN: Acts on the most primitive brain, and the primitive brain can’t think past the moment. Not its job.
- Takes a good set of pain-management tips and tools to nudge the primitive brain to the back of the car, so reason can drive.
- FEAR: Fear hijacks the amygdala and activates the fight-or-flight syndrome. Hijacked amygdalas distort the brain’s function even further, and the fight-or-flight response further destabilizes the already-wobbly central nervous system.
- This is a one-two punch for CRPSers. It takes a lot of training and practice to work around that, but it usually can be done.
- The MONSTER: know thy (current) self. Those of us with horrifying illnesses sometimes feel and seem like we’re taken over by some horrible, biting, unpleasant person who looks and sounds a lot like us, but doesn’t act like we normally intend to. This is tough all around. I find myself being emotionally hijacked — say, by a food allergy response, or a surprise pain flare — and, as I’m sitting there with tears of rage and fear pouring down my face and snarling, inside I’m going, “What the hell is going on? Why can’t I stop this??” It’s The Monster, and it’s off the leash.
- Because I self-monitor so much, I can usually catch The Monster before things go too far, and I sequester myself (that is, I hide) and do distraction/self-care/Epsom baths/whatever until I’m back in charge as (& of) myself.
Bases for decisions: Information — & Certainty
When is the info in hand enough — both in quantity and quality — to base a decision on? (This is where I really miss those old rapid-processing days.) More fundamentally, how can I tell? Because determining and sorting the value of info is yet another, even higher-order level of processing than collecting it!
Having to make choices based on inadequate, unreliable, or unknown-quality info is a far more common task post-CRPS than pre-CRPS. Stumbling around in the dark and guessing, hoping for the best or maybe for the kindness of strangers, is not yet a default, but it sure is more common.
At some level — probably that mile-high view that my “wise self” hangs onto, whether or not it’s talking to me at the moment — it’s funny to see a super-clever type A whizz kid with delusions of promotion, like I used to be, stumbling around in the dark here. There’s a poetic justice to that, um, adjustment that even I can see. My darker side, perhaps, which I usually inflict only on myself.
“There’s always an afterwards”:
Sequelae & Consequences
Reality doesn’t care what drives my decisions; the “afterwards” I face is going to be what it’s going to be, and derive largely from the choices I make — not the ones I wanted to make, or was unable to make, or wished I could have made. They stem directly from the choice I did make, consciously or not, emotionally or not, rationally or not, wisely or not. It takes, again, a lot of practice and some basic training to keep in mind that there will be an afterwards, and force myself to make the decision that results in a better afterwards — even if it’s less satisfying at the time.
The increasing intransigence of reality is really annoying! Can’t it work with me a little more? Sigh.
The older, poorer, and sicker I get, the less flexible the world around me gets. Being young and perky was all kinds of help — I had no idea!everyone over 50
I distinguish sequelae (|suh-quell’-eye|) from consequences like this:
- Sequelae are natural results of something. They may or may not be a problem, may or may not need managing, but they’re just what happens as a result of factors we don’t necessarily control.
- Consequences are results that must be dealt with somehow. Assessing consequences is part of rational decision-making. Who could be hurt? What might it cost? What kind of damage, or benefit, could happen? They’re predictable, if we stop and think things through properly. So, there’s a level of responsibility involved.
We RISK possible sequelae. We FACE possible consequences.
Too much decision-ing:
What About Control Issues?
In the category of bottomless dopamine sinks…
Trying to control too much of my environment is a total waste of effort. It soaks up decision-making chemistry, burns through my attention like a bonfire, and creates a lot more anxiety for absolutely zero net benefit.
People who knew (or dated) me in my 20’s quirk up one corner of the mouth a lot these days. I’m happy to let anyone decide anything for me — as long as it doesn’t do any further harm. My emotional investment in things like where to meet or what to eat, interior decor, stylistic choices, what others should do — pretty much nil.
My emotional investment in being in control is tightly centered on protecting my immune and nervous systems. That’s about it. Anything that meets those (admittedly, enormous & far-reaching) criteria and then looks for something more from me gets a big, airy, sky-bright “whatever!”
I realized that control issues were really a type of anxiety. I have my past traumas, like most, and loads of current problems which are terrifying to contemplate, so it’s reasonable to be anxious. Not helpful, though. Anxiety stalls my brain out completely.
This ratfink disease forces me to choose consciously — and learn to enforce skillfully — what to let myself worry about. It’s one of the great lessons of learning to live with this disease. Speaking as someone who started out being mildly thrilled by emergencies and wound up, at my nadir, being unable to get out of my home and onto a bus because of long-legged terror looming and lunging at me, I’m the first to say that managing anxiety is a journey, a process, any of those things that won’t be completed in my life because it now is part of my life.
This is why I now meditate twice a day. I was mulling, about a month ago, how much harder it was to keep my temper or keep my brain ticking over at a functional rate. The Dalai Lama’s dictum came to mind: “Meditate for half an hour every day. Oh, you don’t have time to meditate for half an hour every day? Meditate for an HOUR every day!”
I’d gotten to the point where an hour before bedtime was not cutting it any more. Figuring the Dalai Lama has never steered me wrong so far, I added another hour (or so) of meditation, after my morning pills go down.
I retest that now and then, but sure enough, if I don’t have time to meditate for the morning hour, everything takes longer and everything gets worse. If I do take that extra hour, I’m a lot clearer and my rate of being able to get things done — and to know, moment by moment, what I’m most able to do as my “glasses” change — surges up to a new normal. I’d like to get used to that — but never take it for granted!
Counter-intuitive, to say the least, but I care more about what works than about what I understand or believe.
Now, back to wrestling with reality to create possibilities that don’t currently exist… No hurry, though — doing the impossible usually takes more effort; might as well do it right the first time.
Admittedly, this might be one of those posts that I think is wonderfully uplifting and informative and positive and yadda yadda, and normal people have to call a therapist after reading. If it weren’t for my fellow painiacs, and the otherwise-normal people who love me and want to know how things are going, I’d probably have abandoned this years ago.
I started out blogging for myself, because I was driven to; I’ve mostly written it as a “non-scientist’s guide to living constructively with this” for the benefit of painiacs who don’t have my medical and communication background; and I’ve wound up writing purely for others, because I’m (very sweetly) obliged to. My high school English teacher quoted that freedom is choosing your chains, and the obligations of love, mutual care, and friendship are wonderful chains — if that’s not too much of an oxymoron. (Personally, I find the image a bit eye-watering, but different strokes for different folks. I’ll try to remember to think before I choose a metaphor.)
However, that’s not what I sat down to write.
Not long ago[LINK], I was in a tailspin about how to manage winter in this body, which is inevitably a bit tiresome (oh look! A flash of humor!), and looked like being more so than ever this year.
I found an old, simple, eliptical trainer by the side of the road that had a stride as short as mine now is. Huzzah! Got it home, and have been using it to work my way gently out of this exercise intolerance. I’ve gone up from 3 minutes 38 seconds, to 4 minutes 40 seconds! And that only took a month. (Look, another funny :))
I have to stop just at the point where my blood gets going and it just starts to feel warm and wonderful. That’s right, I have to stop before it gets really good. If I don’t, I wind up in a slow-motion collapse onto the sofa or bed, and have to really work at it to keep the usual disciplines of getting a shower and food and toilet trips. Since that means that appointments and groceries may not happen, it’s kind of a big deal.
I assure you, many people live like this.
For me, it’s the cardiovascular activity I have to be careful of. The annoying peripatetic noodling-around of errands and driving don’t wear on those mechanisms (though driving wears hard on my attention and I can do, at most, 3 stops for errands before my brain and spinal relays pack it in for the day.)
As I was flailing through the fog of the past month or so, my entire pelvic girdle (hips, low back, tailbone, all the joints involved) decided to lose their cool. Quite literally. I’d be putting my magic goop on the icy skin over my hips, which most women have, and my hand would go over two wide ribbons of fire over my sacroiliac joints, with zapping spicules at each disk, and great squanching bolsters of “eff you, kid, you are NOT sitting on us” right on my sit-down bones. Not cool at all. (See what I did there?)
Much physical therapy and massage therapy happened. It took awhile, but finally, some stability began to re-emerge. I asked my PT how to keep from getting off-kilter again, and she said, “It could be anything: stepping too hard off a curb, carrying heavy things off-balance. That new car of yours could be a problem.”
Ah, the car. There is a story about the car. And what a story it is! So much of a story, in fact, that it’s going to have to wait for its own blog post. It might be right up there with “Intestinal Fortitude”[LINK] for sheer WTH??? But, luckily, I wound up with a good solid vehicle that mitigates everything about driving that a vehicle could possibly mitigate. Unfortunately, it’s easily 4 inches higher off the groudn than the last one.
Talk about stepping off a curb too hard.
I also thought about the eliptical trainer, which I hadn’t been using very mindfully. I lurched from one foot to the other, and I know my hips were taking a wrenching, but I was too daffy to notice. I just, strangely, couldn’t improve my time. I wonder why!
I remember a PT 11 years ago, in my first Multi-Disciplinary Functional Restoration Program, who worked with all of us to “control your descent,” meaning, don’t just plonk your foot dodwn and crsh the rest of your weight onto it; lay your foot down, roll on in a controlled fashion, and whoa, suddenly life gets a lot better — until you forget. Real built-in motivation, there.
As sometimes happens, I stood there for a moment, staring past my current PT’s left shoulder, feeling the idea burst upon me and wash through all my current struggles: loss of partner, loss of help, added responsibilities in the house and for a cat, aging in winter with a rotten set of diseases, new injuries, etc, etc, etc,
Control my descent.
Don’t lurch onto the next step and come crashing down on it.
Stay mindful of each more; it pays off immediately.
Well, that has helped enormously!
It’s elegant and genteel, two words I never cherished but now find strangely redeeming, to pause and collect both legs before exiting a vehicle, and stepping down gently.
Believe it or not, I don’t have to do everything NONOWNOWNOWNOW. That was a tough nut to crack, but I did it with the hammer of “control my descent.”
I’ve gotten cushions I recommended to a friend with a tailbone injury [LINK?] for myself, and everything I sit in is loads better; I can rest.
As for plopping into chairs, that has gone the way of hopping out of my car; still happens once in awhile, but instantly regretted. I control my descent.
The ice and snow are doing interesting things in the driveway, and it will get dealt with, but since my amazing vehicle doesn’t mind, I have the time to prioritize and deal with it when I can do so properly. (I might get a plow attached… that could pay for itself in a couple of years, given my usual fortune/skill at shopping for bargains and finding friendly neighbors who’ll do things cheaply.) I can control the descent of that resolution.
It’s nice not to be crashing from fire drill to inferno. I’m coming back to myself — the practical, quirky-clever, loving little dingbat that still lives on under all the messes I’ve staggered through over the years.
I like the dry, mechanical nature of the image of “controlling my descent.” It gets quite emotional enough in here, I don’t need to rock the boat any more by trying too hard to push the perkiness; it’s healthier for me to just calm the upheaval. I can’t stop life throwing me up in the air sometimes. However, I can usually do something to control my descent.
Time check: must go, in a controlled and pleasantly mindful ashion, to my next appointment. I will try to remember to insert those links and maybe add some pictures afterwards. Feel free to nudge me… because I know I’m forgetful, and I can ask my friends for help 🙂
I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.
Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.
There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?
I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.
So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.
It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.
So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.
I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.
Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)
She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.
I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!
Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.
Those of you who’ve been, been with, or treated addicts won’t be surprised to know that J’s story changed 3 times in a week, but I didn’t fall for it. He has not tried to come back, did not go to the deadly place, and is taking care of himself rather better than might be expected.
The fact that he’s not imminently in danger is a huge relief, actually. I can handle breakups — I just can’t handle mortality.
I looked back at my previous post and got a huge laugh out of the fact that I opened with one sentence regarding a life-shattering event and went straight into the nerdiest possible fugue about meds, care, and therapies that are affected by it. I’m not sure of the distinction between nerd, dork, and geek, but I’m pretty sure I’m all three, and that’s okay with me. The doc I sent that letter to is the brainiest of those, whichever that may be.
The feelings washing through me are as varied as you might expect. There are some ways I feel freed up — I finally got to rearrange the living room furniture, and it’s a vast improvement. Nobody to get all tense and cranky about moving his sofa location. I look back no the ways I’d just stopped making room for myself because it was easier than arguing. The last year and a half was a downward trend, the last year pretty bumpy, the last few months really rough, and the last few weeks we were together were frankly awful.
That, I don’t miss.
What I miss is that where he was, was home. I’m homeless in one sense, because he’s homeless in the literal sense. (He sure enjoys the camping, though.) I rarely had to scold him for anything because he could hear me yelling at him in my head; he’d give me the same pissy look my cat used to give me when he was scolded, and make the adjustment I wished he’d make, with no more than 5 soft words exchanged. He literally read my freaking mind.
I don’t know what he’ll do when the weather changes. Not my circus now. He’s facing the consequences of his own decisions, and one is that he has fewer, and at this point less attractive, options.
I found a person who knows how to get me signed up for things like help with the dishes and laundry and vacuuming, rides to my medical appointments, and other logisstical needs. The shuddering absence of J has left me with arms so overused and attention so wrung out that I had trouble driving safely home today. I actually missed a turn on a road I’ve taken uncountable times. Not reassuring, that. Fortunately, it was easy to correct.
As I explained to my passenger: I can pay attention to the road and obstacles around me, and I can control the vehcile I’m driving, and do both confidently; the rest, like where to turn, is a bit iffy.
The physical consequences crash on, no matter how calm I can keep my mind most of the time. The tearing, strengthless feelings in my hand tendons is pretty scary. My ashtma is acting up, a consstant background pull. I guess I’d better raise my antihistamine dosage, and make an appointment with my rheumatologist to look into that.
The emotions ebb and flow: bouts of anger, so seductive but I refuse to cling to them … I let them roll through and roll away; irritation; lovely memories; wry humor; noticing things he’d like; gaping wounds of loss; grief; the endless wordless cry of a mature heart that’s broken, like a descant that never stops. I let them roll through. I’m an old hand at loss. The trick is not to hide from them, and not to cling to them. Look at them, one by one or five by five as they come, and see them for what they are. Then let them go. Not easy, but so worth it.
Task focused is good. I have things on my schedule and things I have to do. I pay attention to the next task. It really helps. It’s okay to stay out of emotional space, something I didn’t used to know. It’s absolutely okay not to go prodding that open wound. I can work around it.
I was cooking up a frozen Indian dinner on the stove, anything further being beyond me and microwave dinners being disgusting to me (except rice-pasta mac and cheese, for some reason.) I sat there, stirring it gently, and taking a step back to look at the whole picture.
Aspects of my life are better. There’s no arguing, for one thing. I’m seeing my friends more.
Aspects of my life are harder. I have more creative impulses but less ability to do anything with them. The logistics of getting through the week are awful.
On the whole, my life is definitely worse without J in it. His jobs can be done by others, but the whole blooming warmth and joy and peace that he brought with him, until he gave into the “stinkin’ thinkin'” of addictive-mind, is gone, except in memory.
Having said that — having looked squarely at that — I let it go.
I remember the time I decided to give up on repeating my mistakes. It was at my first nursing job, on the HIV unit. I realized, imperfect person in a tough high-stakes job that I was, that I was probably going to make mistakes. I made an agreement with myself not to repeat them, but to pay attention and learn, and when I screwed up, to figure out how to avoid doing that particular thing again.
I waited too long for him to do what he needed to do to get better. He’s not going to do that unless and until he decides, and — here’s the not repeating mistakes part — he has no place here unless and until he has well begun that arduous journey.
Whether he takes it or not is not up to me.
Not my circus any more.
Time to have that dinner and watch a silly movie.
Pain care in the western New England region
Here are the local resources I can (to some degree) recommend. Those of you from other states and regions, please feel free to make recommendations in the comments! 🙂
Baystate Pain Management
The Springfield site is the old home of a doctor I’ve mentioned before and don’t want to mention again. I noticed they don’t list staff on their current web page, but I do intend to follow up and learn a bit more about their current practitioners.
Real Pain Diagnosis
Readings on brain plasticity, with guidance on pushing back
Multiple access-points to get to the same root issues of healing our neurobiology
Resources & info in this blog
Why is sitting in a moving car for hours so rotten?
Here’s a link on how I adapted my car to mitigate these effects, written amidst a cross-country drive! http://livinganyway.com/wp/2012/11/09/re-learning-how-to-drive/
- all this gradual build-up of normal cellular & metabolic toxins,
- PLUS the special added loads from the car itself,
- WITH inadequate activity to move things along,
- AND this forced posture we’re strapped into allowing for even less movement,