My job as a complex chronic patient

Isy / July 6, 2023July 8, 2023 / activity, adaptation, care team, critical thinking, loved ones, mortality, nutrition, perspective, radical presence/radical acceptance, realpolitik, self-care, story, what works

My first nursing job was on an HIV unit in 1991. We were in the 2nd wave of the med mixes, so there were some treatment options. We knew which precautions were necessary, and when.

Those precautions had been newly dubbed, “universal precautions”. HIV was the last global pandemic that had a powerful effect on ordinary patient care, legislation, daily activities, travel, everything. The lessons we learned were rolled so thoroughly into our lives that we no longer think about it.

Anecdote from the front lines..

At that time, it was all rather new. Old nurses were afraid to go near any patients on our unit. We had about 80% novice nurses, an unheard-of proportion on a specialty ward in a nationally-ranked hospital in a major city! We had to pay attention, and we had to learn fast.

Because we weren’t abandoned enough already…

Our rather young nursing preceptor had bone cancer in her knee. She went in for surgery as soon as the last of us (me + 1 other) got signed off on training.

But wait, there’s more: as soon as she came out of surgery, she wrote a message insisting they pull the plug on the machines and let her die. Husband supported that, in tears.

Considering how close to hysterical she’d gotten 3 days earlier, when I tried to dig in my heels and tell her I was not ready to practice autonomously and might need more training after her op; and how strenuously this woman — who’d done little but put me down for weeks and express frustration at how slow I was — now insisted I was ready, really ready; and considering how improbable that post-op scenario is, in so many ways… I think she had planned it well in advance. Most expensive euthanasia ever.

Her 2nd-to-last words to me were: “Change your socks. They should be white. Bright colors are not professionally appropriate.” And gave me a fierce look. She came back for a nice goodbye, telling us we were all “good nurses” despite our occasional touches of color (a laugh and a nudge for the main transgressors, me & a fabulous fellow), before she turned and left the unit for the last time.

She’d been working on me about the sock thing for weeks. Slouchy cotton socks in gem-bright colors were still fashionable; drove her crazy.

She was the only one who hated them. The patients, the other nurses, and my immediate supervisor thought my gaudy ankles were delightful. I was referred to as “the one with the socks” and everyone knew. (I also introduced the fanny pack to nursing life. Nobody had heard of it before I showed up with a white, wipe-clean, bleachable one. You’re welcome.)

It’s possible that I got a packet of white socks, as a gesture of respect to that tough young woman… which quickly got grubby-looking, as white socks always do on me, and thus were eliminated from my wardrobe as not being professionally appropriate.

… That was largely irrelevant, but I’ve stopped suppressing my storytelling urge. There are just too many; they leak.

Back to the job of being a complex chronic patient.

It’s surprisingly logical — it just takes a long time to figure it out. I hope this will shorten that course for whoever reads this! There are 3 key principles to follow, and 3 sets of jobs, one for each kind of person involved in each case.

Three key principles

My patients on that ward taught me a lot about how to navigate hard, complex, intransigent illness. There are 3 key principles:

“Grandma was right” kinds of things: fresh air, activity, nutrition, sincere friends, learning all you can — they make a huge difference.
Find the light, or life, in the cracks. Doing #1 makes that a lot easier.
Communicate with others in the way they need to be communicated with.

That can be a tricky one, but I’ve got a lot of material on it. Some of it is here on this blog. And one day I’m going to complete and organize that collection of communication tools. (Any day now…)

Three different sets of jobs

It’s important to remember that you can’t do everything. I learned that (and keep re-learning it) the hard way.

There are specific realms of responsibilities which the important people in this situation have:

My job.
Significant other’s job.
Provider’s job.

They’re perfectly straightforward.

My (the patient’s) job

A note on terminology: some object to the word “patient” as dehumanizing. I’ll let you mull over what it means to think of someone who needs care as less than human. I don’t.

I’m sticking with the word “patient” here, because it describes a person who has specific, unavoidable experiences with alterations in their bodies, care providers, and whatever health-care system they have access to.

Complex chronic patients have a depth and breadth of experience with these things that most people simply can’t imagine — and nor should they. We wouldn’t wish this on anyone.

So, as a patient, my job boils down to this…

Take care of myself; take care of my responsibilities; take care of my relationships. All this includes having fun and seizing little joys!

Manage my illness. This includes: meds, nutrition, activity, learning about the disease and how to manage it, self-care (whatever that turns out to include, but it always includes pacing: alternating activity and rest.)
Track important signs, symptoms, and changes, and document them meaningfully.
Share this info with providers and significant others when it makes sense to.
Find useful ways to communicate with significant others & care providers about changing needs and abilities.
Make all my appointments on time, every time.
Contact my Dr for anything I need their support with: changes, meds, treatments, info.
Get through the days one at a time. (Thinking of the whole span of my existence is not my job. One day at a time is plenty.)
Find life in the cracks: notice the little beauties, regularly do something I enjoy, stop and smell the flowers.
Make time for fun and happiness. It makes me so much stronger!
Be good to my loved ones, whatever that means and within my limits.
Know that I’m the subject matter expert on my body, and hold myself responsible for managing it accordingly.

Significant other’s job

These two principles can be used by people at work, at home, on the playground, wherever. Very simply, “believe me” and “avoid making this harder, whenever possible”.

Believe me

Nobody — trust me, nobody — can make this stuff up, and there are far too many expensively-educated people working on this for it to be imaginary.

If you can’t believe it, then try pretending you do for awhile, just to test the concept, and see how that works.
Learn about the disease. There’s good info out there and I, or my doctor, can help you find it.
If you’re really important to me, come to an office visit with me and ask the doctor your own questions.

Avoid making this harder

Communicate with me about changing levels of activity and needs. I hate to keep saying how broken I am, so let’s come up with a code to pinpoint the different levels of broken that I could be.

Then, I don’t have to talk about how close I am to puking or crying or passing out, you can know anyway, and we can get on with things appropriately.

That’s what I really want — to be as productive as possible for all the time that I can; to be as good a partner/employee/friend/family member as I can.

Provider’s job

Another note on terminology: I’m old enough to remember when physicians, who were relieved that good schools for PAs, NPs, and APNs were starting to flourish, advocated for the term “provider” as a collective noun, encompassing themselves and the advanced-practice professionals who potentiated their work and multiplied their efforts.

That worm has turned, and now it’s not so popular with physicians.

Please allow this old nurse to use the term with all the respect it originally included, in memory of the brilliant and capable physicians who taught me to use it as the inclusive term of choice.

The provider’s job (as of course you know) is threefold: keeping the larger view, providing appropriate care (of course), and providing info and guidance.

This is sometimes easier said than done, because every time I see you is a rough day. You hold more than the power of life or death over me — you hold the power of tolerability or pure Hell. Thus, it’s natural for me to be a little fragile, possibly overwhelmed, in our conversations.

I do my best to be prepared and “keep it together”. I want to make the best use of our time.

Due to the additional insults of pain and CNS dysfunction, I can be subtly or even grossly impaired when I most need to be responsive, intelligent, and clear.

Given all this, please know that your kindness makes a great difference in my life.

Here is what I hope for, from my providers:

Consider context. Notice where I fall in the statistical ranges and how might this affect my care; help me distinguish between reasonable vs. unreasonable efforts, as well as watchable vs. reportable signs/symptoms; steer me through that intersection created by my medical & physiological peculiarities in one axis, and the statistical probabilities generated by reams of studies and years of clinical practice on the axis which crosses it.
Prescribe appropriate tests, ancillary care (physical therapy, occupational therapy, speech therapy, and so on), and medications.
Respond sensibly and kindly to concerns about meds, therapies, and changes in my illness. (Fragile egg here.)
Let me know what I really need to know about my condition, meds, or treatment, before I leave the room (virtual or 3-D), so I neither ignore something important nor over-study and confuse myself. My responsibility to learn benefits from yours to inform me. Also, it helps me to know the right keywords.
Be the subject matter expert on the scientific and clinical knowledge-base for the illness I see you for, and be willing to figure out relevant context that my other conditions create.

See this article about just how fabulous an experience it is to have a physician who does all that. It’s such a relief and such a joy. Thank you from the bottom of my vital signs for doing what you do.

All 3 working together = best possible situation

When complex chronic patients can monitor and communicate effectively, prioritizing our care while keeping life in center stage most of the time; when our loved ones can coordinate around our limits, allowing us to be at our best, considering; and when doctors apply their staggering breadth of knowledge to our particular situations with attention; we have a fabulous chance of doing as well as possible.

I like doing as well as possible. I have a lot to give and I want to be able to give it — that said, my care comes first, last, and always; it’s the only way!

Thanks to significant help and support, good friends and loving family, and some real rock-stars on my medical team, I’m well set right now. I’m almost afraid to admit it, because I don’t want to rock the boat…

And here we are

There you have it: the 3 key principles and the 3 main jobs of living/working with complex chronic illness.

I know they are that fundamental, because I’ve had a few providers almost plead with me to come and participate in their patient support groups, specifically so I could talk about it with other patients.

Well, here we are, sharing this information all over the world! Send this article wherever you see fit. I’d love to know what your support groups think about it.

Patients, caregivers, loved ones of complex chronic patients, doctors, P.A.s, A.P.N.s and N.P.s… feel free to comment. This is about all of us, after all.

Why Pride means life

Isy / June 9, 2023June 9, 2023 / critical thinking, imp-possible, injuries & surgeries, loved ones, martial & internal arts, perspective, politics, radical presence/radical acceptance, what works

On my 21st birthday, I went out with a bunch of women friends, including 2 couples. All of us health-care workers. Drunk jerk got thrown out of a car right behind is as we stood on the sidewalk deciding where to go next.

He decided that us being out without a man, and clearly happy in our own company, was a terrible transgression. Then he noticed the couple vibes. Then he called us “a bunch of” d-word. Then he tried to kill one of the women in a couple.

Someone else saw him draw a knife. He went to slash her throat. Someone else pulled her back, by her arms unfortunately.

I saw him raising a fist to a defenseless friend, her eyes huge, staring at the fist.

Somehow I levitated between 2 parked cars and a couple meters of pavement in the time it took his hand to move another foot.

I landed in front of him with my arms raised in a blocking stance my Dad taught me at 9 or 10 years old. He said, “I’m teaching you to block with both arms at once, so you don’t get confused in the heat.” That worked!

The attacker looked stunned. Took a step back. I stepped back. He took another, one more, then turned and ran.

I ran back to the bar we’d come out of, passing a couple of delightful young men, shouting a warning: “There’s a man, with a knife, back there.”

I had no idea my left side was covered in blood pouring out of my face.

Those two precious darlings ran. Found out later they ran *towards* the attack, followed my friends’ pointing fingers, and kept him blocked in at the train station, where he had just missed the last train out. Trust me, it takes balls to be a queen.

When the back door of the bar finally opened, the barkeep peeped out and said, “Sorry, we’re clo — oh, dear — somebody get me a towel with ice in it!” He clamped it to my face and that was the moment I realized my left shoe was squishing with the blood in it and I kinda lost my cool.

I hammered on the brick wall with my bare fists, screaming “Never again! Never again!”

I had already been a female for 21 years, which taught me a lot about uninvited violence; had learned about the Stonewall riots; knew the horrific statistics of how often non-heteronormative women are attacked “to teach them a lesson”; and had started getting involved in “let’s all treat each other like frkn human beings & not torture and kill each other like it’s a sport” types of activism.

So. All that was behind that “Never again”. It was too much in my life already, and I was barely an adult.

When the cops brought the attacker in the bulletproof squad car, so I could identify him, I couldn’t see at first because his hand was over his face. Cop went around to the side to ask him to lower his hand. He turned sideways, and I saw the profile that had gone to sink a knife into the throat of a defenseless woman.

It seemed logical at the time that I didn’t want to fight the cops, one on either side of the car. I decided to go through the windshield instead. It was only bulletproof glass; between fingernails and fury, I saw no reason (in my state at the time) not to get through it.

A minute later, with drunk dude stark white and frozen with terror, one of my friends (an ER nurse) pulled me off the hood by the slack of my best black jeans (this was the late 1980s) now smearing blood on the hood of the car.

She and the cop looked at each other and chorused, “I think that’s a positive ID.” ?

While this makes a great story, the memory of it also makes it very, very hard to speak up against microaggressive b.s. because you never know where it will lead. Name calling can go anywhere. Being in a group is some protection but not as much as you might think. If I’d tripped on my gods-assisted leap across that distance, my friend would be dead, and her partner would not have been even acknowledged as a widow, and all of us would have been stuck with that harrowing memory with no tolerable ending.

I now have long hair and am not nearly as fit, so I have the leverage of obvious straight privilege more than I ever did before. (Not that I’m personally wedded to gender or orientation. Binarism is a bit weird to me, but hey, you do you.) My actual sexuality has been all over the map and is currently parked in Neutral: don’t have it, don’t want it. But hey, you do you — that’s the bottom line.

That language changes all the time. When I was an activist, at first “queer” was an all-embracing term, but then the language started moving to an acronym. In the move to acknowledge all the variety, that acronym has gotten unwieldy. The English language being the adaptable thing that it is, another word-based term will emerge to act as the modern umbrella term; that’s still in process.

You don’t have to like LGBTQAI+. If you’d actually read, as I have, holy books in an intellectually responsible translation, you’d find that the major ones are OK with it. God is OK with it, but you do you: just keep your hands to yourself.

You don’t have to support LGBTQAI+ businesses or like having LGBTQAI+ employees. If you check the stats, you’ll find that businesses with strong LGBTQAI+-positive policies and culture get more and better work out of ALL of their employees. A tolerant environment is very freeing to everyone, not just the nominally unusual! But you do you; just keep your hostility to yourself. It’s not OK to be hateful or spiteful at work.

You don’t have to want a LGBTQAI+ family. If you check the records, you’ll find that kids raised in LGBTQAI+ homes are just as smart & just as competent (and generally somewhat more adaptable) as anyone else’s kids. You do you; just keep specific laws off those bodies, because it’s no more your business than your sex, your private parts, your children, and your home life belong in other voter’s hands.

You do you. Let others do them. That’s basic humanity.

It’s not just LGBTQAI+ people who suffer for it. It really is a disservice to everyone.

Let’s get this crapshow turned around, because we really need to get together on issues beyond the personal, if any of our descendants are going to have a bearable future.

Update: using adaptation tools

Isy / May 29, 2022 / adaptation, brain care, critical thinking, CRPS knock-on effects, imp-possible, loved ones, perspective, radical presence/radical acceptance, self-care, tools and techniques, what works

Yesterday, it came naturally to be warmly present for V during a big event where I stood in for her, even at a distance of 3,000 miles or so. Gotta love technology for that!

Today, I think of D and the anticipatory grief is like a warm finger of current, pulling at me without tearing at my core or dragging my mind away. He’s here now, and everyone who cares about him is working on a graceful last chapter to his intense, vivid, improbably well-groomed life. (Yes, he’s quite a character!)

This recovery is not all perfect: after yesterday’s 8-hour social endurance event (a physical and physiological experience piled on top of a very neurologically demanding week) I woke up this morning with a pure dys-autonomic experience I haven’t had in a very long time.

On the very cusp of waking, as I first became physically aware of the real world, my body’s temperature-regulation mechanism dropped off the rails.

I suddenly got intensely cold, that bone-deep cold that makes the smallest touch of air feel like knives. Imagine full-body Reynaud’s, with added concertina wire. It’s amazing how cold my skin suddenly gets to the touch when this happens, after feeling just right at the moment I started to wake.

So, I did what I learned to do 10 years ago, when the dysautonomia really kicked in with this: I pulled my down duvet completely over me and tucked in every gap, wrapping it right around my head, and constructed a little tunnel just big enough to breathe fresh air through. (Fresh air seems to speed up the recovery period.)

Nothing I can do after that but wait for it to pass, as my regulatory thingies come to terms with being awake instead of asleep (one autonomic function) and being able to be at the right temperature (another autonomic function.) I know that it will pass, while my system creeps toward wakefulness.

Big shrug. The Nasty Cold Snap hasn’t been part of my day in a very long time, which is good!

This just goes to show that the physical/physiological impact of these flows of stress and anguish isn’t negated. Expecting that would be unrealistic.

They are manageable. That’s the point.

Doing those “brain first aid” things makes handling the weighty, current reality bearable. That means I’m still capable of several important tasks:

I can bring my tips and tricks to bear against the physical effects of this illness.
I can think my way through ordinary (to me) problems.
I can remember that things pass: the Nasty Cold Snap will pass, as the mental shock passed, as even terror passes when it’s allowed to.
I return fairly quickly to my normal frame of mind — which beats trauma-brain all hollow!

There’s still a bit more physical recovery involved, mostly giving my systems a chance to finish returning to their normal function and easing up on the extra weakness, reactivity, and pain.

But, basically, I’m OK. I’m able to show up for myself and my friends. That’s what it’s all about.

My point (and I do have one) is…

The skills I learned in psychotherapy really work when I use them, and I’m so relieved.

I want to make the point that psychotherapy is not “just like talking to a friend”, because our friends don’t need a graduate degree to be our friends. Psychotherapy is a professional-level, highly customized form of care, even if it feels relaxed (creating an environment where you can relax is one of the skills of a good shrink.)

Nor is it a passive process; the skills and concepts only work if you work them. It’s good to be heard; that said, it’s also good to remember that real healing involves relevant changes. The fun (??) part is, in medicine, we may influence the changes but there’s a significant random element involved in them; in psychotherapy, the client steers the whole process. While being an active, involved patient can improve outcomes in medicine, being an active, involved client does improve outcomes in psychotherapy.

So, there’s the core message behind this 2-part series, part of the ongoing “what works” toolkit. Psychotherapy works, when done properly and used diligently. Just like any other kind of care. It’s not magic. It’s skills.

Planning ahead

Isy / September 17, 2021September 17, 2021 / adaptation, basics, brain care, critical thinking, food allergies, imp-possible, meds/drugs, radical presence/radical acceptance, self-care

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

Won’t hurt me more than absolutely necessary, and
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…

When momentum uses inertia

Isy / November 28, 2020November 28, 2020 / adaptation, brain care, critical thinking, Dept. of Blith. Obv., loved ones, mortality, neurogastroenterology, perspective, radical presence/radical acceptance, self-care

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

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

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

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

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

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

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

So I did.

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

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

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

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

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

Chaos theory

Isy / September 19, 2020September 19, 2020 / adaptation, critical thinking, CRPS knock-on effects, imp-possible, martial & internal arts, mortality, perspective, radical presence/radical acceptance, tools and techniques

As regular readers know, I’ve had an eventful life. The past 20 years, particularly, have been a circus of bizarre improbabilities, oxymoronic paradoxes, and irreconcilable conundrums. My life reads like a dystopian comedy, if your sense of humor is sufficiently twisted.

This is why I’ve got the category “imp-possible” going in this blog. It looks merely cute, but it has a lot of layers. Imps could be little devils, or little fairies, or little children. They emphasize the power of the small. It feels like the only power left. “Imp” also suggests the power of the unexpected.

As the current American president’s so-called “tax cut” comes home, the US Disability Income management agency, Social Security, has decided to trim costs in anticipation of their lost income: they’re cutting my pay, on the grounds that the Worker’s Compensation element of US health care paid me off for being hurt. Separately, they handed over a bunch of health insurance money so Medicare wouldn’t have to pay for my work-related treatment.

Social Security confused the two, and then added zeros to the left of the decimal, divided it by 12, multiplied that by the square root of Guatemala (I’m making this up, just like they did), slapped a bonus on it, and decided I make OVER $5,000 PER MONTH and they’re going to count 80% of that and dock my pay by ~$160 per month…

I’m allowed to make over $5,000/month? Where? How? Sign me up! But wait… huh?? You think I actually have $5,000/month???

Yeah, I’m confused too. (The payout was good, but not that good: I got a sturdy, 10-yr-old car and a year’s worth of rent in a clean, dry cottage out of it.)

That $160 is what allows me to keep my pain-cream-making gear & off-season clothes in storage *and* pay for my writing course at the 50% discount I negotiated with the teacher (I’m doing that course instead of buying books & music for a few months.) I’m not sure any of that counts as extra these days.

They said this would be (future conditional tense) reflected in my pay as of December 2019 (whaaaaat???)…

Either they’re as confused as the rest of us, they’re in even harder denial about which year this is, or they’re setting up to make the pay cut retroactive in case they decide that that’s in their best interests. Also, Social Security being who they are and the current US administration being who they are, this feels like the first move against our lifeline, not the only move.

… I’m sitting here speechless again. Happens every time I think about it.

This is on top of the brutal horrors of approaching winter (relentless agony, burning brain, incapacitating fog), no bathtub (CRPS’s disruptive surface effects creep up my legs and over my back and make my shoulders, hips, and right arm into bloated purple sausages wrapped in electrified barbed wire, with no way to push back), encroaching mold (which multiplies everything, including mast-cell hyperreactivity/disabling allergies, heart dysrhythmias, gut problems, and it adds respiratory diseases to the mix), and gastroparesis so bad that every other day I have to do a big ol’ — you don’t want to know. Trust me. Even I can’t make it funny.

My psychotherapist is savvy, sweet, and has that merciless faith in her client that the best of them wield like surgeon’s tools (yes, this is relevant, hang on through the curve)… I fell apart completely in our virtual visit and whispered in stricken tones, “I don’t know if I’ll make it this time.”

After acknowledging the depth and legitimacy of my feelings and recognizing my prior successes against staggering odds (she does know her job!) she encouraged me to see the breadth of creative possibility embedded behind, “I don’t know.”

I blinked, because that sounded pretty darned merciless, even for a top-flight psychotherapist. (Keep in mind that surgeon’s tools include, not just scalpels and silk, but electric saws and the sprung barbs known, deceptively, as towel clips.) She wouldn’t give up, though.

I agreed to accept that as a working hypothesis.

On reflection, that thought began to feel more like pre-2019 Isy, before my heart got ripped out and stomped on a little too hard by a few too many, and my system fell apart so badly in the storm of it. It began to feel more like the Isy who, 13 years ago at the start of the Hell Years, looked around at the absolute rubble & blasted mess of everything I thought defined my life, and realized someone was still there doing the looking, so there was still an “I” and I wasn’t done yet. It felt more like the Isy who made the term “imp-possible” a regular category. I didn’t know where that would lead me, but…

I didn’t know how to finish that sentence yet.

This morning, while listening to an audiobook that’s a romantic comedy about overthinky nerds (still relevant; hang on through one more curve), I used the toilet successfully for the first time in months, without having to resort to the apparatus hanging nearby for the thing I’ve had to do that I won’t tell you about. (It involves soap & warm water, nothing too ghastly.)

I use audiobooks to keep my brain from overheating. It gives me just enough to focus on that I don’t drive my thoughts off a cliff, and it’s not so intrusive or demanding that I can’t do ordinary tasks at the same time.

This one had gotten to a part where the author discusses basic chaos theory: chaotic systems (and I defy any biologist to come up with a more chaotic system than a dysautonomic human body with longstanding central pain syndromes) … where was I? Right. Chaotic systems tend to get more and more chaotic until a sort of tipping-point is reached and they reorganize at a higher level of criticality.

What the heck does that actually mean, anyway?? What do they mean by a higher level of criticality?

Partly, it means that a lower level of energy is required to maintain that state of chaos, even though it’s still a higher level of chaos.

And that (I thought, as I looked up at the equipment I was going without at last) meant that I could do more coping with less effort.

Once you’ve prioritized your needs hard enough and developed your adaptations effectively enough, it gets a whole lot harder to throw you off your game.

I can work with that.

The next level of chaos is here. I have no idea how it’ll unfold. That said, I’ve already reorganized at a higher level of criticality.

I’ll meet it somehow. I don’t know how. I’m still here doing the looking, so I’m not done yet.

In honor & memory of Ruth Bader Ginsberg.

Sizing the Covid-19 problem, for real

Isy / September 7, 2020September 7, 2020 / basics, Covid-19, critical thinking, perspective, radical presence/radical acceptance, self-care, translating Medical Jargon into Plain English

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

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.

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.

Protected: Outrageous fortune

Isy / November 17, 2019November 20, 2019 / adaptation, ANS and fight-or-flight, brain care, bugging out, care team, critical thinking, Dept. of Blith. Obv., imp-possible, loved ones, martial & internal arts, money, mortality, perspective, radical presence/radical acceptance, reiki/meditation, self-care, what works

There’s always an afterwards

Isy / October 15, 2019October 15, 2019 / activity, adaptation, basics, brain care, brain plasticity, critical thinking, CRPS knock-on effects, imp-possible, loved ones, mortality, radical presence/radical acceptance, self-care

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.

This image?

Not a patch on that moment. It was wonderful.

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

The afterwards

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

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

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

I finally got it

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

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

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

Barely alive

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

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

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

But wait, this gets even funnier.

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

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

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

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!

Cold Watershed

Isy / June 12, 2019June 12, 2019 / adaptation, critical thinking, CRPS knock-on effects, home-hunt, imp-possible, radical presence/radical acceptance

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.