New set of wheels

I walk everywhere I need to go. I finally tried the bus, and honestly, it could have been worse — but the base of my spine is still not prepared to put up with more than about a mile of that banging.

The problem with walking is that my legs are getting really good at “Burning Bones” — one of those trippy CRPS nerve games where it feels like the bones themselves are covered in & consisting of fire.

I used to wonder what burning bones were like and felt lucky for not having experienced it — and highly inclined to keep hammering massive doses of D3 to keep my blood levels in normal range. (D3 helps keep calcium in the bones & teeth, where it belongs, and prevents excess calcium from causing nerves to misbehave, among other things.)

Well, this clears *that* up! I know exactly what burning bone pain feels like now. But still, I’m well aware it could be so much worse: I just get little yellow flames, not big blue-based barn-burning flames. Those are definitely worse. I don’t know if I could keep walking through big blue flames.

Do I walk through the little yellow ones?

Go on, guess.

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

Carrying the bag I use as a purse adds a few pounds to the load on my legs, hips, and knees, and a bag or two of groceries adds about another 10-12, however carefully chosen they are for weight.

Plus, I’ve been slinging those from my shoulders — better than a backpack, which puts the stress right across the anterior nerve plexus for the shoulders, but — as we say about little yellow flames for bones — is, um, less than ideal.

I have tried every grocery cart conceived of in the last decade. The vibration on my hotwired palms is like hanging onto a working jackhammer covered in razorwire. (I don’t recommend doing that, however much you want to see what this is really like.)

I stared longingly at jogging strollers all year.

I designed my own grocery conveyance, priced the parts, and realized I had just designed a jogging stroller and it would cost about as much.

I haunted Craigslist and Freecycle for weeks, until an add for a Schwinn jogging stroller popped up.

Shows cupholder bracket affixed to handle of stroller

Is that a cushy push or what? 😀

And, guess what, it has pockets! — I mean, cupholders! (Cupholders are definitely the pockets of non-clothing items, say I.)

For once, I kept myself from saying *just how much* this means to me and why, because who wants to hear sob stories, right? I handed over the very reasonable sum, thanked him 4 times but not nearly enough, and sailed away.

Even though my legs are starting up the burning bones awfully quick today, in every other respect I feel like I’m walking on air.

I can pick my own *groceries*! OMG!!! And *get them home* with minimal further damage! WOOHOOO!!

Life is good.

Thank goodness for that sweet family who let this go ❤, and for craigslist.org for linking our complementary needs.

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Planning ahead

I’m getting an allergy panel in a month or so. This means I have to be off my antihistamine for 5 days before.

THAT means I have to start tapering off ~2 weeks ahead of time; 3 weeks would be safer, but I don’t see how to endure over 3.5 weeks total with that level of obnoxious symptomatology and brittle physical fragility. 

That said, I *really* want the data.

You might ask, “Why?” (Or possibly, depending on how familiar you are with the twisted satire that is my health record, “WhyTF?? Are you *crazy*??” As if you didn’t already have a definite opinion about *that*! 😏) 

Well, here goes…

Flash back to 2013

Years ago, under the tutelage of a late & very lamented friend who Knew Mast Cell Stuff like I know the back of my hands, I finally (in 2013) did my empirical testing around whether mast cell & histamine activation-like signs & symptoms I was struggling with, would respond to treatment. 

Step 1: reducing & eliminating competing problems

I had already gotten excellent neurological & biofeedback training, which worked well for many things (Go, Pain Psychologist Dr Faye Weinstein! I got tremendous and lasting benefits from my work with her. Highly recommended. “Stabilize, stabilize, stabilize.”) While I had excellent results from the neuro stabilization, it didn’t make much difference to the allergies, a particular “flavor” of brain fog, food & digestion issues, or the usual allergy circus of itching facial orifices & random urticaria.

The histological issues persisted most obnoxiously. This was 9 years ago when the mast cell activation diagnoses were not as well developed, and at a time that, though I had access to an enormous pool of well trained doctors, I was already up to my hip-waders in the maximum number of appointments I was able to keep. 

What do you think? Pursuing testing and inquiry into a set of issues that were still widely considered to be a matter of hysteria? — For a middle-aged woman with pain diseases and 60 extra pounds of weight, do you think *that* would have been a good use of my limited time? 

Smh!

So, I went empirical on it.

Two methods of science: “empirical” and “scientific” method

Both methods are scientific, in that they require diligent examination & limiting of variables as well as testing, retesting, and recording results accurately. 

(But hey, that nomenclature isn’t confusing, right? <eyeroll>)

It boils down to this: 

Empirical method: what works in this case in particular? 

Scientific method: what’s generally likely to work in many cases?

The empirical method of science is brilliant on a case-by-case basis, there’s nothing better; but avoid making assumptions beyond that case. The scientific method of science depends on hundreds, ultimately thousands, of cases, and from all those together, it generates statistical probabilities about what’s *likely* to work under certain circumstances as a general rule. It’s much more widely applied, but explicitly *not*  individualized.

This is why, as someone dealing with multiple rare issues, I test everything ~3 times on myself before deciding if it’s a good idea for my particular situation.

Now the next section will make more sense.

Right med, right dose, right time

I tried several antihistamines to see which one helped me the most. 

Then I experimented with dosing to see how much it took to get me functional most of the time. 

Then I experimented further with once-daily dosing, or dividing the dose in two and taking it twice daily. It had better results (and no “oog” feeling) if I took it twice a day.

In the end, I wound up on one of the top 3 meds for mast cell/histamine issues. I also wound up at the common dose for those with a solid case of Mast Cell Activation Disorder. (The twice-daily dosing was my own special twist, but I’ve since learned it’s not that uncommon among “masties”, as people with mast cell dysfunctions refer to themselves.)

Without any further ado, my doctors added MCAD to my list of diagnoses.

(As with every med and supplement, I continued testing it every 6 months or so, backing off the dose and looking for the minimum effective dose, but stopped doing this because of … we’ll get to that.)

But, frankly, a differential diagnosis doesn’t yield enough info to change anything causative. If I can nail specific allergens — or culprits — and receive treatments that can actually reverse this ghastly crap, that would be *great*!

So, I really want the data.

Histamines & tendon problems

I stopped trying to cut down on the antihistamines a couple of years ago, because I couldn’t bear any more injuries that threatened my mobility.

“Mobility? Huh??” I hear you ask.

One of the things the antihistamine helped with was tissue-tearing. I didn’t expect that, but was delighted not to be twisting my ankles on uneven ground or sudden jumps away from traffic, then having to crawl or scoot home because hopping on 1 foot when your tendons don’t work is a terrible idea.

As I thought about it, it made sense though…

Histology review:

Q: What happens when your histamines are active?

A: Among other things, inflammation in and around your cells.

Q: What happens when cells get inflamed?

A: Among other things, cell walls get weak and leaky.

Q: What happens when connective tissue cells get weak?

A: They tear more easily. 

Ah hah!

So, yeah, maybe MCAD could weaken my connective tissue after all — especially because, for one thing, I started out hyperflexible, which is a setup for these kinds of problems; and for another thing, the fibrosity of fibromyalgia has made my connective tissue more brittle & easier to tear.

Ducky! Another hat-trick! 🤣🤠

Back to the testing

This is the test where they put a grid on your back and scratch or inject tiny amounts of different stuff into your skin. In about 20 minutes, whatever you’re going to react to should be a nice hot ruddy lump, technically a “wheal”. 

For this to happen, your body has to have nothing interfering with histamine reactions — in other words, no anti-histamines.

Since the antihistamine I wound up on has a long half-life, I have to be off it for 5 full days before testing.

Prepping for the test

Because going from full dose to no dose means I can barely get out of bed safely (see “Histamines & tendon problems” above), I have to taper down. I’ve done this before, usually to eke out my meds when my supply is running late. It’s familiar territory. 

Experience tells me that:

  • I have to taper at a rate of no more than 12.5% of my daily dose at a time.
  • I’m best off (in this terrible sitiation) stopping for 3 days at each new dose before the next step down.

This means that it would take 20 days to taper off to 0 (shorting the last step to 2 days instead of 3) *and then* 5 more days at 0.

Doing this with tissues crying, “Go on — tear me!” And every bite of food, breath of air, bit of furniture, bump in the sidewalk, or tussock of grass all giggling in evil tones (so to speak), eager to hear my muffled yells.

Yeah. Tasteless spoofing aside, that’s not a great situation to spend 3.5 weeks in.

Then, of course, as soon as I can horse down my meds again, it’ll be several days before I qualify as human.

Then, about another 1 to 3 weeks before I get back up to baseline function.

My Halloween costume will require very little makeup for me to pass as a zombie, so that’s one bonus.

What a month-and-a-half to look forward to!

Is all this really necessary?

Well… I really, *really* want the data. If this is at all reversible, wouldn’t that be worth a few weeks of howl-worthy endurance?

Obviously, yes… but I don’t think I could keep at it for over a month. I’m good at enduring, but I’ve got hard limits.

I really, *really* want the data.

Managing towards the best possible outcome 

My doc prescribed me some prednisone to take in order to avoid winding up in the hospital over this. I look at the results of my last round of prednisone — the change in my face and the truly shocking stretch marks (which made my dermatologists blanch and leap back, no kidding) — and I consider this truly last-ditch stuff. Beats nothing, I guess. It might keep me out of our ER.

There are dietary issues to consider. (What follows is a brain-dump from my years of querying doctors and reading, as well as my empirical food testing.)

Food matters: boost the signal

I know that the system being tested (mine) can respond more truthfully if it’s familiar with the molecule being tested. For instance, I haven’t eaten gluten in years, so this test might possibly come up negative to that. 

Doesn’t mean that, the next time I walk past a bakery without my mask on, I won’t get an itchy swollen throat and everything won’t turn white for a bit, it just means my body had enough of a break to stand down, and will need to re-arm.

With that in mind, I might grab a couple of saltines before I go in. If I could calm the gluten circus enough to just be safer walking around, that would be awesome.

Food matters: reduce the noise

I’m getting off the aged and fermented food, because that makes such a dramatic difference in my pain and swelling. This includes seafood and beef and anything packaged (look up what creates histamine in food).

Despite that, I’m making exceptions for things which I want to make sure my body has experienced in the month before testing — nuts, bananas, stone fruit, fish, grains in addition to glutinous ones, even beans — although that’ll be a period of gastroparesis hell, but this system must not be “bean-naïve” for the test.

Because I really, *really*, REALLY want the data. This is the kind of info that could change the course of my life for the better. 

For that, I can get through some serious struggle. 

Ramping down steeper

I’m going to go down 12.5% of my dose every 2 days, instead of 3. This will shorten the ramp-time to 2 weeks. Recovery might be a little longer, but I can maintain attention on what I’m doing this for, for that length of time. 

Until then, I’ve got a lot of cooking to do and a freezer to stuff with things that 

  1. Won’t hurt me more than absolutely necessary, and
  2. Will include exactly what I think I need to be exposed to, to maximize the value of the test. 

If you’re in a similar situation, remember that your mileage may vary. Ask your own docs, and then ask their nurses the same questions.

The differences in the answers tend to reflect the wholism that nurses work with, a nitty-gritty pragmatism that rounds out the more optimistic notional-ness that doctors can succumb to. Both views matter.

For only the second time in my life, I might do actual menu planning. I’m usually more of a “what’s fresh? What’s cheap? What’s safe? What’s appealing? Throw it in the pan” kind of cook, but that takes brain. I’d like to insulate myself from a potentially very brain-free near future and reduce my frustration over the coming month. Having easy-to-grab, safely frozen meals sounds fabulous.

Here’s my plan…

The grocery order just arrived, so if you’ll excuse me…

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The freedom of masking

Two years ago, if I were walking down a sidewalk next to trucks belching diesel, I had to breathe shallowly and mentally plan on the nausea and neuro-huckery that was likely to follow.

When I went shopping at Big Y — well, I couldn’t, because the massive bakery displays at both ends of the store could wipe me out in a heartbeat. 

I was sadly giving up my Goodwill/Salvation Army pillaging habits because the unquenchable stench they saturate the stuff with made me so sick it was harder and harder just to walk in there, and my de-stinking magic stopped working on fabrics. Sad sniffle… I used to get half my furniture from there, and most of my better clothes.… 

I considered getting surgical masks, but I already knew how many leery looks & disparaging comments that public mask-wearing used to provoke. I try to avoid getting leery looks, because people are a lot less likely to be pleasant or helpful towards someone they’re leaning away from.

Then The Modern Pandemic hit, and everything changed.

Nearly two heartbreaking and traumatic years later, the message that this is the new reality is starting to take hold; testing and explanations of what makes a mask effective is available from legitimate labs and reputable sources; and I’ve made myself 2 custom-fitted, Isy-safe, well-made masks that are easy to clean and dry well overnight. 

Colorful though they are, they just don’t stand out any more! Masks are part of the New Normal, and generally provoke smiles and friendliness instead of the opposite.

So, on today’s walk, I wound up surrounded by fuming traffic — and put my mask on. No problem. Then I went shopping at Big Y and went from end to end of the store — with my mask on. No problem. I was too tired to go to Goodwill today, but when I do go there, I put my mask on — and I don’t smell a thing until I get everything well outside and take my mask off. (I can still get the smell off of hard-surfaced things.)

Mind you, it’s not like my own breath is a bucket of roses (!) — but it still smells way, way better than diesel, and it doesn’t make me sick! 

It took awhile to realize it, but masks really set me free and make my *whole* world (not just the pandemic aspect) much, much safer and more comfortable to be in.

 

 

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Wholeness is order

Many people have figured out before me that approaching life coherently, as a complex creature with inward & outward lives, as physical and energetic beings at once, and so on, is probably a really good idea.

I’ve spent years describing myself as a “text-based life form”, and “better in print than in person.” That was useful for a time; most of us need something to cling to, to carry us through, when we feel terribly broken.

This summer was transformative. I started it wholly committed to making my legacy; I’ve come out of it realizing that I’m very much alive, and that, if I’m going to get anything done, it has to be as a whole person — minding my relationships with those who can relate to me, minding my physical care as a loving duty rather than an intransigent puzzle, tending my crafts as sweetly as I need to be tending my recuperation, and so on.

Somehow, I’m absolutely certain that only in this way — and not in the head-first, head-down policy of my old working self — only in this way can I make meaningful progress.

Of course, that means it’ll take longer up front. But, as an old mariner, I’m well aware that prep is between 80 and 90% of the final result — so you take the time and do the prep, if you want good results.

I happily think of star nurseries (thank you, NASA , for this image), which look like glorious messes — but, from these, galaxies are born.

Logical? Well, not in any linear sense. Organically it works, though.

 

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Active presence

I love the term “radical presence” because it feels radical to jump the barrier of overwhelming emotion to land face-to-face with the moment and be able to look straight at it regardless. However, in practical terms it’s the opposite of radical — it’s conservative in the classic sense, because it puts us back into the realm of what’s demonstrably real and solid.

Therefore, conservative presence is the same as radical presence.

What a wonderful object lesson in putting political branding aside.

However, for the sake of clarity, I think I’ll start calling it “active presence”, as it usually takes an act of will.

When I was working as a nurse, an important part of the job was teaching people what they needed to know in order to go on better: dress the wounds, improve activity, improve nutrition, manage impaired systems (immunity, pain, respiratory), take care of relevant organs (heart, liver, pancreas, kidneys, gut, brain) and so on.

I’m sorry to say I was too idealistic at first and found myself being scoldy. The word “should” showed up a lot; worse still, “shouldn’t.” Argh! Words I’d love to take back!

I finally learned the key principle of teaching & training around life skills, especially primal ones like eating/drinking/moving: people have to start from where they are, not from where anyone, including them, thinks they should (ugh) be. The ideal is not relevant, only the real.

The first step, therefore, is to find out what that reality is, no matter how egregious. Their best hope of improvement is almost always in small, manageable steps, starting right from their current reality.

This led me to my first understanding of active presence: change has to start from this eating habit, this activity level, this degree of self management. No others exist yet! Trying to pretend they do only builds castles in the air.

However, I’ve seen patients of mine go, for example, from couch potatoes with snack-stocked shops and triple-bypass heart attacks to organic-grocery-owning half-marathon runners in a couple of years, by starting with tiny stepwise improvements: cardiac rehab class, to slow walks, and on up from there.

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

There are no guarantees (it’s easy to joke about people with great life habits getting hit by a bus) but hydration, nutrition, fresh air, and exercise tend to pay off tremendously– usually after a clunky adjustment period, as body and mind lurch through the initial changes.

Of course, the time that new habits take is going to pass anyway. Would you rather be reaping rewards at the end of it, or find yourself back in the rut that put you into medical care?

I’ve said exactly that to many people, with honest attention. This isn’t a trick question, nor is it an occasion for smarm. It’s a key question we all have to ask ourselves periodically throughout our lives, in one way or another. Everyone has the right to contemplate and answer that question honestly, even if the real reaponse is, “I like my habits/my rut, I see the trajectory, I know where it will take me, and I accept that probable outcome with open eyes.” I’ve had people say that, in tones varying from sweet concern for my feelings to roaring defiance. It’s all okay; it’s their call. I’d ask if they’re interested in cushioning their fall or minimizing damage to others, tailor suggestions accordingly, and then call their physician to adjust expectations and ask about/offer any ideas for mitigation over improvement. (It was never a total surprise to their doctors.)

As a patient, I have made — and continue making — complex changes in order to stay as well and functional as possible. I’m persistent like that. To me, being incapacitated is intolerable. I’d rather have better options.

“When you’re alive, anything is possible. It’s being dead that seriously limits your options.”
– Jodi Taylor

Active presence puts me on ground firm enough to step off from, and actually get somewhere. I’ve been living with a strong inward nudge to simplify, focus, and hurry up, because I don’t have much time left. It may be fallacious (I hope so), my subconscious working to override my “completion anxiety” about larger works. Given the accuracy rate of these deep, strong inward messages up to now, I’d be a complete idiot to ignore it. So, I’m simplifying, focusing, putting my ego (which is where this anxiety resides) off to one side, and buckling down on building the structure of my legacy in my head. I’ll discuss that more when there’s some output.

Dying is horrible. I don’t want to do that, ever. I’ve started to, a couple of times, and I’ve seen far too many loved ones go, especially those with these diseases. No words, no words for it… That said: Being out of this relentless, grinding circus of delicately-balanced tolerability, with horrific and likely further life-limiting consequences for certain mistakes? Really looking forward to being done with it! There will come a time — at some point, for me as for anyone — which will suck, and shortly after that, I’m absolutely certain there’ll be an end to this (extremely well-managed) biological terror and the unimaginably cruel pain that drives it.

I have this stubborn inner nudge that it’s not far off for me personally. That’s definitely NOT my choice, it’s the circumstance I find myself in. Without having wanted or chosen it, I somehow find acknowledging it to be hugely freeing!

That is intensely weird, I know. Also uncomfortable and maybe bitter and sad.

But that’s what is true for me, right here and right now.

From here, and only from this point in my often tortuous reality, can I move on.

I accept that.

Here I am.

Time for the next little step. Who knows where it’ll take me in the long run?

Let’s find out.

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Wizard, with hat and staff, standing next to text of Tolkien quote.

Sizing the Covid-19 problem, for real

Like many, I’ve been watching the extraordinary infinity-ring circus of Covid-19 with rising confusion.

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

I hate being that confused.

So, I thought about how to cut to the chase. I investigated mortality figures, looking for clarity on the competing narratives about the actual danger posed by Covid-19. (This is aside from the epidemiological information, which is hard work for me and possibly beyond a lot of people. Look into attack rate, latency, and lag if you want to know more about the reasons for its spreadability.)

This boils it down to one simple, definitive marker:

How many die? Because that’s the point.
Lead-grey statue of dark angels swooping down from the sky

Comparing mortality numbers

This is all out of a U.S. population (as of 2019) of 328,200,000.

Annual US death rates from various causes in 2019 (or 2018):

36,560 … Highway fatalities (2018.)
 5,250 … Fatal workplace injuries (2018.)
48,236 … Adverse medical events ending in death (including surgical problems, allergic responses, medical devices, prescription errors, and fatal drug overdoses.)☆
61,200 … Seasonal flu, 2018-2019 season.
15,820 … Those with HIV, of all known causes (2018.)
Fatalities due to Covid-19 in the US in 2020, only up to Sept 1:
About 180,000

Expected to exceed 200,000 in 2 more weeks.

🤯😱💔

Questioning the data

If this number were as low as 2X the nearest competitors, I’d have dug into the question of just how bad the Covid-19 reportage is.

(Hint: lots of problems, some pushing the numbers up, others pushing the numbers down.)

It’s nearly FOUR TIMES higher than the nearest causes of death. Even I can’t pick a big enough hole in that number to change the outlook!

Bottom line

This final figure is inescapably bigger — in only 8-9 months! — than any other major/relevant cause of mortality in an entire year in the U.S.

So… death by Covid-19 is a real problem. A huge problem.

It’s a real, huge, problem.

Please protect yourself & others: don’t share air or germs.

Self-protection skills

For my fellow chronics, don’t be too worried. Surviving this is a 3-part skill, and you’ve mastered much worse. You can do this.

1. Dilute your air. 🌀
2. Protect your airway. 😷
3. Wash wash wash. 👐

Here’s what that means:

1. 🌀 Get as much air as possible around you. Avoid recirculated air. Open windows in closed buildings. Dilute, dilute, dilute your air. Even a little! (Work within your constraints.)

2. 😷 Cover all your breathing apparatus with something that meets these practical criteria for masks that protect *you* as well as others:
A. Seals: doesn’t gust air out the edges and passes the “doesn’t fog glasses” test.
B. Protects: has enough material/filtration that you can’t see any light specks peeking through, when you hold it up to the light.
C. Doesn’t vent. (Apart from exposing others, venting can also create weird ripples for super-small viruses to ride back in on. Look up “Venturi effect”.)

After reading mask tests until my eyes bubbled, I agree with these guidelines. Plus, no codes to remember!

3. 👐 Wash, wash, wash your paws & whatever you touch or touch with. Alcohol will do in between times.

Dealing with questionable cleaners

After two painful toxic exposures, I learned that 40 proof in a spritz bottle smells better, is easier & potentially cheaper than the gooey store stuff, and is far safer than methylated or isopropyl.

Alcohol-free folks: look into spritzing 3% hydrogen peroxide, which kills viruses faster than Clorox (watch your clothes, it can bleach too), proven essential oil blends, or even soapy wipes. Read labels for virus killing info.

Summary

THIS IS NOT IMAGINARY.

The death toll from Covid-19 is horrific — no matter how small the comparative R’s are.

It really IS a huge problem, still unfolding.

It’s appropriate to take it very seriously — and intelligently.

You’re not helpless. You really can protect yourself and your loved ones with that simple 3-part skill set:

1. 🌀 Dilute your air.
2. 😷 Protect your airway.
3. 👐 Wash wash wash.

Follow these guidelines for the best chance of staying well.

Reflect: “adequate protection” means masks AND 6 feet (“safer six”.) Both masks and “safer six.” Look around and see where that does or doesn’t happen.

Tip: Most eateries do takeout now, and parks are open for meeting in 🏕🏖🏜🏞.

We all have horrible choices ahead. Hope it helps to have a little coherent, practical, straightforward info. 👩‍⚕️👨‍🔬👩‍💻

Note on, & list of, sources

Sources are all primary data collection organizations within the federal government, which has access to all the original info streams:

– U.S. Census Bureau
– U.S. Bureau of Labor Statistics
– Bureau of Transportation Statistics (a dept. of U.S. DOT)
– The Joint Commission (of AHQS)
– DHHS-NPDB (National Practitioner Data Bank)
– HIV.gov
– CDC.gov
– EPA.gov

☆A statement along the lines of “prescription drug mismanagement results in >2M injuries and 100,000 deaths annually” is cut & pasted into many articles, some going back to 2005, despite the advances in monitoring and treatment in the past 15 years. Therefore, those figures are meaningless.

I wish politicians realized that made-up figures never improve the debate. They’re only bad for everyone’s blood pressure, at the very least.

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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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Angel wings & tactical things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Floating again

I’ve removed two posts:

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

 

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

bursting milkweed pod hanging between rock, birch, and sky

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

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

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

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

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

As metaphors go, it’s probably good advice:

Stop Looking Back.

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