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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A 3-point reality check in the armpit of winter

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

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

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

Pale mass of bubbles from underwater

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

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

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

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

Reasons

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

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

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

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

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

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

What chores await

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

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

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

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

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

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

But I’m getting better

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

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

Hubris, meet Reality-check

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

Something about that statement seemed odd. H’mmm…

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

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

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

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

Can’t argue with that.

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

1 hr later…
I did.

Cats are masters of pa:ng 🙂

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

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

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Angel wings & tactical things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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