Category: critical thinking

Quickies: How the doctor-patient situation is supposed to work

Isy / / care team, critical thinking, cultural context, perspective, Quickies, radical presence/radical acceptance, self-care, translating Medical Jargon into Plain English, what works

Chronic specialist care

Once upon a time, I asked my hot-shot pain specialist (I’ve had some real rock-stars) for something heavy-duty and intense (I forget what).

He told me that he wanted to stick with using current meds a little differently and upgrading my self-management skills, because I had a lot of years left and he wanted to keep something in reserve for when things got worse.

This doctor really understood long-term palliative care — palliative care meaning, you’re not expected to recover, so treatment means managing symptoms for as long as possible.

That’s not about dying comfortably, most of the time. It’s about living anyway. Being sick is not the end of life. It’s just a heck of a detour.

He was apologetic and sympathetic, hoping I wasn’t too dismayed and disappointed. I was delighted to realize this physician firmly intended for me to have a long and active life, and was asking me to step up to the plate to help to make it so. I don’t think he realized that, in that moment.

I said to my specialist, “My job is to figure out how to get through my days as gracefully as possible. Your job is to hold the long view for me, and figure out how to manage my care over time so I can get through the years as gracefully as possible.”

He looked at me in perfect stillness for a long moment. For someone who likes talking as much as he does (for good reason; interesting talker), that was weighty.

He asked, “Would you please come to my severe-pain support group and say that?”

Sadly, I really couldn’t drive safely that late and knew I couldn’t get a ride for it. (This was pre-pandemic, so, no remote possibilities.)

It’s possible that he was as frustrated and disappointed that I couldn’t come and say this to his patients as he had expected me to be about the medication. So, Dr. Saberski, this one’s for you!

Emergency visits

The purpose of the Emergency Department (or A&E/Casualty, for the other English-speaking countries) is to figure out if anything is going to kill or disable you in the next 24-48 hours. It’s a very specific remit.

Flare-ups of chronic conditions can creep into that remit, severe pain being very disabling in itself.

However, another condition of mine, gastroparesis, is not a great candidate. The heavy-duty pain meds in the ER are mostly narcotics, which rarely work for intestinal pain and, more importantly, make the intestinal paralysis worse. The anti-vomiting meds may not be better than what your doctor prescribes, although they may be different and worth trying for that reason alone.

ER nurses used to have an effective line in moving stubborn bowels. It seems this is no longer the case. It’s often considered a specialist task, not that specialists do it either. If in doubt, look up “soap-suds enema” and follow the instructions carefully. Stay near a toilet for the next 6 hours as your guts remember their job.

It’s vital to know that dehydration can be deadly or disabling, and the ER is exactly the place to go for treating that. So, if you can’t keep even sips of water down for a day or two, for any reason, and you’ve got the sunken eyes and play-dough skin (pull up a little fold on the back of your hand, and it stays there), the ER is the place to go.

Bodies can’t recover without water. Water really is life.

If your condition requires specialist knowledge to treat, but probably won’t kill you or further disable you in the next 24-48 hours, the ER can be bitterly frustrating, because thats not their brief and it feels unfair to ask them for it when they don’t have the training or funding.

However, it’s perfectly okay to phone them up and ask the triage nurse what to do. I’m an old triage nurse and I loved it when people were “on it” enough to call and ask. If they didn’t need to come in, I could tell them what to do and what to report if things changed. If they needed to come in, I knew they would do as well as possible and I could get them sorted and into appropriate care faster and with a rare smile on my face.

Being deliberately involved in your care is that powerful a message to send to your system. We can’t consciously control our systems, except in nudging things here & there, after specific training. We can deliver primal shoves with our basic approach, with how deliberate and mindful we are about our care.

Urgent care

Urgent Care is where you go if you’re pretty sure you aren’t going to die or be (further) disabled, but you do need same-day care.

Keep in mind that these providers do not have specialist training, but might be able to make a call to your specialist or be willing to discuss what you want from them. I said “might” — it depends on factors beyond your, or even their, control.

In the US, they usually can’t make referrals — except to the ER, if they find that you need further scans or a higher level of care.

It’s not fair to them to expect specialist care. That said, it’s not fair to you to have an inaccessible specialist. Lousy situation.

Primary (general) care

This person is supposed to be the ring-master who holds the ends of all the threads of your care. They’re supposed to take over your prescriptions (unless they’re actively in the “figuring out what works” stage) or you’ve got a specialist who wants to stay absolutely on top of things.

This is the person you usually call for coughs and colds, annual checkups, questions about whether you might need another specialist or different care, and when you want to talk over health care concerns, including confusion with how the system works.

They’ve still only got 5-10 minutes with you, but it’s time well spent if you’re confused or overwhelmed. As ever, note your issues and questions before going in, to make the best use of your time together.

One of the uses of those “talking” visits is for a medication review, one of the best uses of time there can be for us. See the Pharmacist section for more.

Pharmacist

These are the medication bosses. Their depth of knowledge of medications, interactions, side-effects, and alternatives is absolutely daunting. They’re the wizards of meds.

If you’re having symptoms that might be side-effects, this is who you ask about it. If you’re unsure about a new med or dont know what to expect, this is who you ask about it. If you’ve got genetic variants that might affect medication metabolism, this is who you ask about it.

Medication review

If you’re concerned at how many meds you take, talk to your pharmacist first. Then, with the notes from that conversation in hand, talk to your doctors.

This is called a “medication review” and everyone can do it annually, or more often if things are changing for you.

Pharmacists can’t prescribe, because the depth of knowledge about various bodies in sickness and health is the reason why physicians spend even longer in training than anyone else. Most of medical care is beyond medication. It’s why nutrition and self-care matter so much.

The body is its own unique thing and needs its inhabitant to be involved for best results.

In short

Medicine is really, seriously deep and complex. Each of these segments of the health care system is necessary, and none can substitute for the others.

It’s an imperfect system. It should be much better, but, heaven forfend, that might cut into enormous corporate profit margins. Patients, doctors, pharmacists, and every actual helping human has to work within the restraints of enormous corporate profit margins.

Hope this helps clear a few things up!

Today I Learned.. about how cashier’s checks work

Isy / / critical thinking, definitions & descriptions, imp-possible, money, perspective, Today I Learned..

If you’re chronically ill to the point of being disabled, you’re probably the sort of person that things happen to. This is something that insurance companies used to have data for, so nobody can tell me this category doesn’t exist. Besides, I think I am one!

Long story short…

Cashier’s checks can disappear into the void, but — if you know a little terminology — it’s possible to get them out again.

Note: this is based on the US system. The concepts broadly apply, but tend to be implemented differently elsewhere.

Lingo and key points are in bold.

When you get a cashier’s check, the money is taken out of your account and put into the bank’s GL, or General Ledger.

The GL is a kind of “sandbox” that they can use to move money through in a way that protects the cashflow, regardless of what else happens in your account. It’s strictly temporary and has to be zero’d out at the end of each day.

Whatever else you do, check 2 things on that cashier’s check:

  1. Who it’s made out to (get them to read it to you if necessary).
  2. How much it’s for.

If either is wrong, push it back across the counter and make them redo it immediately.

The cashier’s check is drawn on the bank’s own account. This is why the account number on the check is not one of yours. It’s also why they’re considered more usable than personal checks: banks are guaranteed to have that money in hand.

If you take that check to another bank to deposit it, hopefully it’ll be credited directly to your account.

If not, here are some clues to follow.

I’ve spoken to 8 or 10 bankers in the past 2 weeks, 4 of them managers/assistant managers. (I don’t know exactly how many people were in a couple of those rooms.) Only one of them could explain this to me. So, might want to take notes or print this out.

If a cashier’s check is negotiated (in this case, that means “marked up and legally received”) by a bank, and subsequently denied for any reason, it goes into a magical 3rd space that few people even know exists. This is where things get interesting.

If anyone tells you — as people have told me — that a problematic cashier’s check simply vanishes and you lose that money, they’re wrong. Don’t put up with that.

1. If the check was negotiated by the receiving (2nd) bank before being denied (this is rare, and requires at least three people to be asleep at the time!), then call the issuing (1st) bank and ask if it shows up in their system as having been cleared.

But wait! There’s more.

2. If it has been cleared, then next, the bankers need to look for what’s called a Fed adjustment. Naturally, the Feds keep a hand on the tiller of bank transactions. When a balance sheet is not right, they make a Fed adjustment — which does not show up in the usual account information, as seen by the front-line staff! — and gets parked in the 1st bank’s own accounts somewhere else.

PRO TIP: Try to get a trace number, or else (like someone sitting in my seat right now), you might wind up waiting still more days to track that money down definitively.

Information about a Fed adjustment is not available to the usual banking staff. Access to that info is available only to specialists, and it’s often contracted to a specialist 3rd party.

The bank’s Accounting department might have access if they know they’re looking for a Fed adjustment. The Operations department (if they have one) will have access, because they have to handle policies and procedures and stay legal & proper.

The 2nd bank’s 3rd party specialists can access that info and tell you where it is. The 1st bank’s specialists may not see it without a trace number.

It exists and it’s their job to find it.

Once you’ve established whether the check has been cleared by the 1st bank, and you have found the right person who can look up Fed adjustments, then you’ll know where the money exists: either in the 1st bank (most likely) or possibly in the 2nd bank. But now you know.

Remember.. It won’t be in any of your accounts, it’ll be in the bank’s own area. They have to look for it differently.

4. Next step is to notify the bank/branch manager where the money is, and ask them to credit that money back to your account.

If that doesn’t go well, play Duelling Bank Managers: go to the bank that doesn’t have the money and, from the manager’s office, call up the one that does; the manager you’re with can ask them sweetly & precisely how to find it and get the money back to you.

This is one of the things that speakerphone was made for. Wonderful way to clear the path.

5. This is the worst part: the Fed adjustment may not land back in your bank (let alone your account) for 30 days. Then you can do whatever you like with it.

My 1st bank, now that they know where the money is and are sure of receiving it in time, are giving me a free loan on that basis, so the money is in my account now and I can go get it at last.

I’m gasping. Absolutely breathless.

Warning: verbatim quote — “the squeaky wheel gets the grease”… so if you’re working with a bank that isn’t culturally meticulous, be prepared to do a lot of squeaking.

I’m hoping the car dealerships will take cash, because I have jumped through enough hoops in the past 2 weeks, and I do need my own transportation.

It gets weird in here

Isy / / adaptation, brainiac, care team, critical thinking, cultural context, opinion, perspective, radical presence/radical acceptance

I was chatting with a close friend about a week ago. He’s placed to be on top of current events with a depth and nuance that my vomit reflex can’t stand. We had an interesting conversation which was mostly me chirping, “But what about…?” And him giving me a really good update on stuff I’d never be able to stay upright long enough to research.

My brain was twinkling away on the incoming tide, sorting the info and soaking it into the correct metaphorical tide-pools and littorals.

I soon realized that, though I was sorting words coming in, I was having a terrible time getting words out. I didn’t realize, until that moment, just how completely that parsing a thought may feel verbal, but might not be.

I thought I was wording just fine as I thought, “okay… this goes here with news ownership; this goes there with political gamesmanship from Brand X; this relates both to Brand Y and legal process” and so on.

On the outward flow, all I could get going was along the lines of, “so, uh, how’s the… thingy… you know, from… what’s-his-name…” and I realized I sounded immeasurably more mentally inept than I felt.

I wanted to say, “look, I’m still in here and I’m taking in everything you say. I just can’t operate the outgoing current right now and my word capturing is going great, but my word finding seems to be underwater.” I could not fund the words, of course.

It’s been grimly fascinating to me to find the many ways a brain can go off-line in bits & pieces, and how my mental activity and neurological activity have these unthinkably complex ways of associating and dis-associating within themselves and between each other.

Everyone’s brain is linked up in completely unique ways. Just imagine what it would be like to work with people who could relate exactly what is and isn’t working and when. It’d set off such an explosion in the advancement of knowledge that.. wow.

A pointless note of wistful longing

It’s a real pity I can’t handle any schooling, let alone medical school, because this is exactly what neurologists need to know about to make their lives – and, boy howdy, ours! – a lot more useful and interesting.

As it is, patients are considered inherently unreliable in the medical mind, and, although that’s extremely insulting, it’s not crazy within physician context: the precision of thought and accuracy of terminology is rarely there, because so much training goes into commanding the information the way a doctor does.

Conversely, it’s adapting through a traumatizing cascade of brutal experiences that creates a skilful and well- informed patient. Training that’s so high-level it amounts to nosebleed seats for one; autodidacticism that makes Richard Francis Burton look like a playboy (oh, wait..) for the other. (When I can find someone who’s as brilliant an autodidact but not a moral negative, I’ll revise that sentence.)

It really is a different language and these two rather fragile mind-sets have trouble reaching across the cultural gap. (Anyone who thinks doctors aren’t fragile should just try correcting a few. It can get rough.)

I think the ratio of truly secure doctors to the rest is about the same as truly adept patients: they are definitely around, but can be hard to identify even when you’ve got one. It takes hard work and a lot of fearless honesty in both cases.

Buckling on my helmet. I’ll get it from both sides now.

The onus winds up being on the traumatized patient, who usually has more clock-time to prepare for the visit. The doctor has to turn around and deal with someone equally intense in 2-7 minutes, so they have to stay mentally free to do so.

Yes, let’s hear it again for corporate medicine and its unholy offspring. So efficient,  such a great use of limited resources… not.

There isn’t (yet) a cultural context in the field for cross-training as a patient and as any sort of licensed practitioner. That’s the key deficit.

Practioners get culturally demoted when they become patients (which is disgusting, but predictable in such a heirarchy) and patients get shoved into a little cultural pocket for things that fall between weird and interesting without fully qualifying as either.

Fun, eh? It’s one stellar example of the waste in the system.

Fully-qualified human beings

Isy / / critical thinking, Dept. of Blith. Obv., humor, mortality, perspective, realpolitik, satire

When I was working in the software industry, the term “fully-qualified” entered my world in a marvelously exact way.

The specific programmatic terminology here is from the Java programming language. Don’t let it bother you – some things are just details.

Java uses an organizing category called “classes” for unique bundles of code that define all the features, characteristics, and actions that this bundle of code needs in order to do what its name says it will do. (Other programming languages may have other terms.)

Each class has to have all the parts it needs to know when it’s wanted, what it needs to look for, what it has to do, when it has to stop, and what (if anything) should happen next.

If a class is completely and properly defined in all these parameters (and sometimes more), then it’s called a “fully-qualified” class. It can be trusted and can be used across multiple regions.

Not all classes are fully-qualified. They’re okay for quick tasks and have a place in the Java ecosystem, but their usefulness is limited. Those classes, those hunks of code, usually have to be filled out to be fully-qualified or else deleted when the time comes to prepare a program for market.

Any robust program needs an awful lot of classes of many different types. It’s inefficient to have too many similar classes — you’ve got to have different classes to do different tasks. All that they have to have in common (besides logical coherence) is that they must be properly constructed so they can do their task — whatever their particular task is.

This diversity of classes is essential to good programming.

You’re starting to see the metaphor here, aren’t you…

Some people view all others as fully-qualified human beings.

Some people do not. Only a few meet their idea of fully-qualified — that is, complete and correct and fully able to function as they should. This, naturally, means that they have specific and limited ideas of what humans need to do.

When people beat on those who diverge from their idea of truly human (those targets are usually women or gender-bending or people with disabilities or people of color or poor people) they’re acting on the fact that they don’t see these other people as fully-qualified human beings.

The people doing the beating-on are hung up on the feeling that these people are not properly “written”, that they’re missing huge hunks of “code” that limits their function — and makes them fair game for being taken out, sidelined or deleted.

We aren’t all the same, and nor should we be. It’d be a terrible program if we were, and would quickly choke on its own redundancy, crashing itself and possibly blue-screening the whole show.

Maybe we should go back to the old CRT colors and make it orange-screening.

What do you think? Too bold?

Foggy… and formats

Isy / / critical thinking, CRPS knock-on effects, imp-possible, what works

There’s been a lot going on, but I’m not up to discussing it for lots of reasons, but mostly, TBH, because I’m foggy.

I’m thinking about how to put my work together differently. Like, make it easy to focus on overarching topics – traveling with illness and pain; navigating relationships; communicating with loved ones; getting your message through to doctors; handling flares; laughing at the absurdities of this life; being a smart-aleck when appropriate; coping when it’s hard to keep going… these are specific subjects, and it’s not good to hit an unsuspecting system with a surprise ttopic.i don’t think category tags are sufficient warning. We should be able to choose our topics upfront.

So, I’m mulling Patreon or books or some other way of putting out my work so it gets organized into logical groups. You should still be able to find the most recent if you want to, and go in reverse chronological order; it’s just that that should not be forced on the reader the way a normal blog organization does it.

Not sure I’m explaining myself well. Like I said… foggy.

What do you think? Is there a subset or grouping you’d like to see? There are a lot of ways I could organize it – do you have a favorite format?

I’d love to hear what you think! Feel free to comment or whatever.

 

Another chance to get it right

Isy / / activity, adaptation, basics, critical thinking, Dept. of Blith. Obv., humor, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, realpolitik, what works

I’ve been chewing over something for awhile and recently realized that it might be time to apply that much mercy to myself. It’s a more coherent, whole way of thinking about what I discussed in some panic in my previous post.

Complex chronic spoonies tend to drive ourselves hard because we really have no option (the exhausting, but relevant, internal chorus of “adapt or die, figure it out or eff off, push through or give up, fight or fall” is inescapable) but does it need to be so ubiquitous?

A lot of these posts have been oriented on finding light through the cracks, on putting life itself into center stage somehow. I think I’m cooking up a new way of doing that.

The most basic of basics

Many years ago, when I was working as an emergency nurse, I realized that (despite the hype & excitement) our job was fundamentally simple: give people another chance to get “it” right.

Whether “it” was keeping up with their meds, staying off of whatever was poisoning them, choosing better company, finding the healing path that worked for them – whatever. There are fewer “its” than their are people working on them, which is why we are never the only one with our struggles.

That made more sense inside my head. Sorry.

People wind up in the ER because something bad happened, and usually human ignorance, stupidity, or violence was involved.

That’s not about blame. People don’t always get to choose their company or can’t always bear to be alive without some kind of buffer between them and their situations. Even if they did do something colossally daft (like the rich kids who decided to cut out the middlemen and drive 350 miles to buy their drugs from the distributor; 4 came down, 1 eventually went back), it’s not right to require mistakes to be terminal if they don’t have to be. 

Of course people with heart disease should take their meds even when they feel fine, and get periodic blood tests to show that it’s working. Of course people with diabetes should keep an eye on their blood sugar and stay on their meds. Of course primary care when you first get symptoms is better than going to the ER when you start to fall to pieces… but it’s awfully hard to find a primary doctor these days.

Life is complicated and increasingly expensive. ER work really shows that.

Anyway, I saw our job not as holding back the sea with a broom (as some do), but as giving individual people a chance to figure out how to do things better. Lift properly. Drive sensibly. Stay off the hard stuff. Find an appropriate doctor who’ll listen – and then talk with them.

Nobody likes to be told, so reciting these mantras to them doesn’t often make sense. Oddly enough, it can be a lot more meaningful when you’re meeting their worried gaze as you administer the medication or fit their c-collar or go over the x-rays with them. Or tape and dress the wounds in their wrists.

There is so much we don’t control… sometimes we just have to remember what we could control, and how to put that in reach. It’s not easy, but it’s often very simple. When the universe is dropping its big hammer, where do I need to be when it lands? Under it? Or can I get off to one side? What will I have to let go of in order to get out of the way? Is it worth it?

The answers to this aren’t always obvious, and “worth it” to some is not the same “worth it” as for others.

What that looked like in practice

We had a lot of repeat customers. Some of them I wound up zipping into body bags, because what it took to get out from under the universe’s hammer was either too far out of reach or not ultimately worth the effort of letting go of what they were clinging to. They mostly didn’t want to die, but it wound up being too hard to do what it took to live.

I’ve got to respect that. It’s not for me to judge.

Some of them I saw come back just for ordinary bump-and-owie stuff, showing me the healing scars (inward or outward) of their old struggles. There are no words for the sense of sunrise I felt on seeing them. It made the rest worth doing.

It was all their work… but it was up to us to give them another chance to get it right.

My chance

I absolutely love to work. Being useful and productive is the bomb! If it weren’t so important to me… well, I probably would not have come down with CRPS, which stemmed from relentless overuse injuries in my case. I could not take a break to save my life. Whatever it was, I had to jump in with both feet, arms flailing and shouting “incomiiiiing!”

I imagine I could be pretty tiresome that way. Belated apologies to my friends and colleagues along the way!

I’ve been wrestling – for years (how embarrassing) – with recognizing that having fun… recreating… seeking diversion instead of merely a change of work… I’m not even sure how to put it… but that loose, apparently useless, seemingly non-productive use of my time, is really good for me.

It lowers my stress levels. It reduces my pain. It raises my spirits. I don’t know if it gives me back any of my lost abilities, because I find it incredibly hard to do and have never been able to hang onto the easy-going vibe long enough to find out.

What with one thing and another (I’m an American living stateside in January of 2025; IYKYK) I have a powerful inward pull to go somewhere glorious – and affordable, thank you very much – and simply muck about enjoying the diversions. Play tourist for once in my life. Soak up pretty colors and different sounds. Be warm every single day.

And, if I get bored or don’t like it well enough, simply go somewhere else.

At this point, a lot of places are more affordable than the U.S. (more on that later) and, for all the challenges of travel in this body, I do plan on doing nothing but recover and enjoy myself for a good while afterward.

…It’s a weird idea, honestly.

Good thing I’m used to maintaining and cultivating relationships via the internet, after a quarter century of having to do so. It makes love more portable.

It’s still a weird idea. Wherever I go, I still bring myself along, and I know I’ll have to leave my compulsiveness behind with my snowboots. That’s unnatural, but I’ll learn.

Learning to let go of that deep attachment to being productive and useful is not the same as not being productive and useful – but it could give me time and space to heal my much-clobbered systems.

That might be the point.

Rest and play is widely regarded as essential. I think that’s the “it” that I need to work on getting right. Get out from under the falling hammer of overdriving a broken system.

Still a weird idea! LOL!

The times, they are a-changing

Isy / / activity, ANS and fight-or-flight, care team, critical thinking, Dept. of Blith. Obv., humor, imp-possible, marathon, moving/traveling, nature, nutrition, perspective, politics, radical presence/radical acceptance, realpolitik, survival

Without descending into the morass of modern U. S. history and politics, let’s just say that I’d like the first months – up to half a year – of the new regime to happen with me being somewhere bearable, where good produce is a lot cheaper and the medical care both stable and affordable.

None of this is likely here, where my food prices rose about 30% during the harvest season and there is much loose talk and planned chaos around Medicare and the dole (which I depend on to stay alive) – not to mention the cost of everything rising by 15-60%.

The pundits and those who follow them tell me not to worry, because there are rules and procedures “they” have to follow.

Given the Mump track records regarding rules and procedures, all I can do is smile sweetly so as not to worry my loved ones, and let my mental gears turn more quietly.

Hot tip #1: a tariff is a tax. These get passed on to the consumers, not sucked up by the companies from countries exporting to us.

Hot tip #2: as we’ve seen so clearly over the past 5 years, industries don’t just raise costs in line with their own expenses, but jack them up to see just how much the market will bear. Given a captive market, this has gotten really ugly. Remember eggs last year? The sub-prime lending fiasco leading to the 2008-9 crash? Yeah, it’s an established pattern.

So anyway… here I am: if I stay in one place, I’ll be wrestling hard with un-meetable expenses (my dietary needs are simple, but not cheap) and a constantly-cycling urge to run away. That’s neither stable, healthy, nor fun. Been there, did that, threw away the t-shirt.

I didn’t grow up in one place, or even one country. I’m not mentally stuck here, and I don’t believe I have to put up with the scrambling anxiety or insufferable expenses to come as the Mump Regime and its trail of chaos gets itself through the initial reality-checks.

I’ve been toying with the idea that it’s healthful and good to be warm, stable, and happy. That takes adjusting to, because so much of what makes me feel anchored to the world is about work. I love to be productive. It makes me feel superbly grounded to be useful/helpful to others. This is very compelling… but as far as my daily choices go, doesn’t have a lot to do with being warm, stable, and happy.

It does have to do with abusing my eyes and attention with falling down back-lit rabbit-holes and trying to turn the swarms of information floating around in my brain into streams of relevant words, pertinent to the question I’ve just read.

But I’ve got serious limits and, as it turns out, I am much more useful and productive after I’ve been taking really good care of myself and playing and recreating and being happy outdoors – a lot.

This doesn’t sound like computer-gazing, which is how most of my work happens.

This focus on making myself happy is a weird concept, and I’m still working out a lot of the details. I mean, not even details – I haven’t settled on where to start; even my departure date is unfixed. Getting the right people in to keep my place clean & warm while I’m gone is kind of a big deal too. I’m not prepared to move and won’t sacrifice my sweet little home – not until I’ve got a much better offer in hand, anyway!

Anything could happen. I’m trying to keep breathing properly as I say that.

Maybe it’s time to take a sabbatical…

Tough gift, but a good one

Isy / / adaptation, ANS and fight-or-flight, brain care, critical thinking, humor, imp-possible, legislation, moving/traveling, perspective, politics, radical presence/radical acceptance, realpolitik, self-care

American Thanksgiving is the 4th Thursday in November. I had a gift that day – a difficult one, but I’ve been unwrapping it and wondering ever since.

Wide-eyed kitten staring at a roast chicken on table in front of its face

My phone (which has my i.d. and my bank cards in it, and it provides my only internet access) disappeared on Wednesday evening.

While this is momentous for anyone these days, I have a disease-specific reason for being harrowed by it:

  • I listen to audiobooks to drown out my brain’s ongoing response to the ongoing pain, wonky signaling, and that disconcerting imbalance between what I need and what I have or can get to keep my environment safer for my body. To me, it sounds like screaming; I’ve heard others describe it other ways, as crunchiness or a kind of rattling wobble or other experiences entirely. My sensory processing apparatus decided that it’s a constant, ongoing scream from someone too upset to be the least bit self-conscious. Audiobooks and internet rabbit-holes are fantastic ways to manage this, partly by drowning out the internally-generated sound by the external one that I want to hear, and partly with the power of distraction.
  • Pain, reasonable & irreconcilable anxiety about how I’m going to get through anything from this day to the next chapter in my life, and the occasional neurological crumping (when my cognition shuts down and my coordination goes to hell, so I can’t make ideas or hold things) … all of these are best addressed by comfort and distraction. For me, books and memes and contact with absent friends are all good for that.

For Thanksgiving – when everything is shut aaaaaaaall day – I had none of that.

I just need a moment to process this.

It was a sad day. I couldn’t make or receive any of the usual holiday calls with people I love. I couldn’t go out to eat, and the previous evening I’d had to put back all the holiday food I had in my cart and get only what I could pay for in the cash I had on hand.

I had the sweetest visit from 2 friends (I explained why I had nothing to feed them with) who made it their mission to check on me twice daily until I was en-phoned again, and that helped me get through several hours much better.

Apart from that, I had little to do but hear the screaming, and wonder what I would do next year in a country that has voted for unprecedented chaos that, on the showing so far, is liable to shatter a large part of what makes it possible for me to live. The litany starts off like this: “The level of daily chaos to come is unbearable to think about. Every time I read up on the latest plans or appointments, it gets worse.” Not good for dysautonomia, among other things.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

At the end of the day, I began to apply a bit of cognition to this experience (as you do) and realized something important…

The screaming was a whole lot quieter than it used to be; than it was, say, a year ago.

Last year, it was a lot quieter than when I first moved in here, right before the Pandemic. That was a tough time and the screaming was so loud I had to play the audiobooks and dvds at a fairly ridiculous volume to get the benefit. (The neighbor knocked on my wall a couple of times.) That volume might be partly why I now have ongoing tinnitus, a ringing in my ears that’s always at a different pitch and volume from the inward screaming. Clearly, my brain decided not to confuse the two.

Also, I noticed that my mind had actually recovered some ebb and flow!

There were times of day where it was natural to fix things, other times for doing something creative, times to sit and be quiet and times to move around and chat with the cats…

Natural texture and dimension in my mental activity, which the constant audiobooks had smoothed out and neutralized since they came back until that day of enforced quiet.

To the able-bodied and -minded, this is perfectly natural. It didn’t used to be for me. I had 10 or 12 alarms set throughout each day to tell me exactly when to do each kind of activity, because that mental texture had been quite, quite lost.

I got through 2 nights and a day without any alarms. I survived, and I also realized that alarms are jarring.

Who knew??

It turns out that my slowly-healing autonomic system has finally agreed with me that a stable diurnal schedule is a good thing to do, so I wake up within the same half-hour every day, without needing to be kicked awake by a series of 3-4 alarms.

The phone climbed out of its hiding place the next day. (Of course, I had already thoroughly checked there.) I canceled almost all of the alarms, except the one for feeding the cat.

I can make a short list for each day and get through it by riding those mental waves – and being kind if I can’t get them done at the very time that I wish to. It seems that being kind to myself knocks down a number of stress-related barriers.

Horse & woman laughing hysterically

I’m still digesting this new experience of the world. It’ll probably continue evolving over some time to come.

It’s not exactly normal to have such a significant level of recovery when you’re close to pushing 60 and sitting on 25 years of pain-related neurological disruption, including 20 years of dysautonomia.

So yeah, it was a sad day and not an easy one, but what a gift it turned out to contain!

I needed such a gift. My life is about to change drastically, and it’s up to me to work out which path to take through it. None of them are easy, but some could be more rewarding than others.

Can’t wait to see, not only how I’ll screw up, but what I’ll learn from it!

I’m going to try something new, as I navigate this tricky shift in life: asking for input and advice from people outside my head and its rabbit-warrens of associated ideas.

I know, wild idea… and for that reason alone, probably worth trying.

 

What’s your forward path?

Isy / / adaptation, critical thinking, imp-possible, moving/traveling, perspective, politics, radical presence/radical acceptance, survival

I’ve seen more than the usual amount of material about having hope, lately.

I see why, of course. Many people view hope as an incentive to carry on when things are going badly and they can’t change that.

So, hope serves as a forward path or guiding light, a way to keep going when you’re not sure you’re going to wind up anywhere good.

Speaking as a long-term survivor of a pretty rotten condition, I certainly understand the value of that!

The point, I’d say, is the forward path itself, the guiding light that gives us the idea of having something positive to go for, when the usual ideas and activities don’t work or make things worse.

Hope is one way, but not the only way. Sometimes hope is counterproductive, and if you’re convinced that hope is the only way to keep going, that can be a real downer.

To me, hope is like a pretty lie: I’d like to believe it, but there’s no logical support for the hopeful ideas that, for instance, I could attain full remission and be able to work to support myself again, that the Atlantic circulation will strengthen again and stave off total disaster, or that my country could look forward to a survivably rational government in the new year.

And yet, some people cherish those hopes in themselves, and who am I to persuade them otherwise? Their futures are for them to envision. I’ve got to deal with my own, and that’s plenty!

My own sense of a forward path is something I have a hard time articulating…

It depends partly on the deep sense of history I grew up with, 10,000 years of the ebb and flow of human vanity, decency, terror, greed, and stunning insights.

I’ve read notes and letters from people burying their entire families in the Black Plague… between king and lord of warring states… Spanish merchants discussing trading alliances along the Great Lakes in North America in the mid-1300s, very hush-hush… Gilgamesh and his passionate grief for Enkidu… love songs from every age and between every gender… desperate missives from ancient Romans fleeing the fall of their government to families who never answered them, or told them there simply wasn’t enough to go around and still keep everyone else in their accustomed style and comfort.

Whatever we suffer, we are not alone in it. We are one more part of a very long course of events, and every problem has been faced before. It’s up to us to find the best solution for this particular version at this moment in time – and we have this great depth of information about how it has been faced before.

We are never alone in our terror, betrayal, or pain. Somehow, that helps me.

Another part is that – another lesson from history – there is a future worth having, if you can stay alive long enough and do what it takes to increase your odds.

This alone has gotten me through some things that should have been terminal: I had to see what the future worth getting to would be. So far, it’s been a fantastic outcome, relatively speaking. Well worth getting to!

The last thing, which is the hardest to explain although it’s the easiest to notice, is my stubborn idea that it’s my job to hew my best and truest path through this life – do my best while being honest about my capacity, be guided by my humane ethos, keep the long view, and don’t let the misery of my circumstances decide how I’m going to face them. That job belongs to my will. It has had a lot of practice.

Sounds really noble or something. It sure doesn’t feel noble! It feels messy and rebellious and defiant, most of the time. It requires me to disrupt expectations about how women, who are middle-aged women, who are white middle-aged women, who are white middle-aged women who originated from upper-middle social strata and good education… should behave. In short, people who are supposed to have options and protections and resources that I haven’t even been able to dream of for a very long time.

That’s what I felt I should have been. It’s a useless “should”, but a gluey one.

For all that I’m pretty cheerful (especially with the morning sun on my face, like now), I don’t have much truck with “hope”, because it feels like placing too much weight in an imaginary basket. I can bank on my diligence, curiosity, and determination, though. They aren’t imaginary at all; this blog reminds me of that.

I think that every one of us has to find the forward path or guiding thought that works for us individually in our own ways.

We’ve each got to play to our own strengths, and do our best to keep the deep-dyed “should” phrases in their place.

Sometimes hope is just another “should”, and it’s okay to set it aside for other motivators. You’re still whole without it.

Maybe it helps to know that the Darwinian statement, “survival of the fittest,” does not mean those who have the strongest minds or the healthiest bodies – despite the narrow libertarian/right-wingy assumptions and the hunter-gatherer-based ideas of cost/benefit.

It means “those most able to adapt to fit the new environment” and that, dear reader, means us: the disabled and neurodivergent are the OG adapters to strange environments, the fittest to figure out how to handle the increasingly worrying future.

One way or another, this era in history – with its uncertainties, intensity, and rising waves of change – is ours. Like it or not.

Collectively, we can do this. Individually, as ever, it’s an open question – but let’s find out.

I’m curious how this will go…

 

 

New pain doc & big insights

Isy / / adaptation, care team, critical thinking, imp-possible, perspective, radical presence/radical acceptance, self-care

I’m profoundly curious. (Take that however you want, LOL)

When I was an inch from dying, around 12-14 years ago, when there was nothing left of anything I thought made up my life… I found, down there at the bottom of everything that had been, this relentless creature who had to know how the story would go. I could not allow death to overtake me because I’d never know. So I lived – on pure willpower for a while, but then things started to change and get better & better.

This came up in my Pain Psychology appointment today, following on from the “new pain doc” appointment I’d had the day before. I’ve had 4 pain specialists in 9 years, and (thanks to extended litigation) around 19 in the past 20. Since much more than my life depends on my pain docs, and I have no control over the situation, this is harrowing, every single time.

My medical PTSD is a main focus of my pain psychology treatment, which is how this came up for discussion.

My curiosity is clearly more fundamental than my reflexes and primal needs, so, “Let’s figure out how to use it to interrupt some primally-driven anxieties.” Today’s quote from Kylie Steinhilber, PhD, my pain psychologist. From this, we discussed 2 further insights:

  • Being inquisitive is about holding an empty mind/heart in the present: pure now, with an open eye to the unknown future.
  • Trauma responses are about having emotional context and re-experiencing that history, thinking (“knowing”) it will go this way or that way based on what’s happened before.

I’ve never realized that quite so clearly.

If this had been a rough “new pain doc” visit, I could go to the open & curious state of, “so that’s what’s here/now. I wonder where it will go?” – instead of falling into the misery and grim anxiety of “knowing” what it will be like based on prior experience.

Note to self:

BE CURIOUS about where the story will go! That is rational, even though it doesn’t come with a plan.

Prior experience matters, but it’s a lot better for me to stay open and inquisitive and be with what’s going on now. More options, less antipathy between us, and that opens up communication – which improves outcomes, even in a crap situation.

Serendipity was my brain’s home base pre-injury, & it likely still is. It’s OK to go there and hang on when things get uncertain.

I’m in the 20% of humans who thrive through a serendipitous approach, although it drives more linear people (the 80%) up a tree, because it looks crazy to them & sometimes makes them want to reach for a net – or a straight-jacket.

When I use their (the 80%’s) linear approach (which I’m technically good at; mad skillz), the best I can do is mediocrity, if that. It doesn’t work well, no matter how careful the planning and research I put into it. Makes no sense, but that’s how it goes.

Chaos and WTFery are going to find me. I’m one of those people that things happen to. No, that’s not logical, but accepting it is rational. Interesting distinction between logic and reason there.

I see my mental job as learning – over & over – how to ride the metaphorical wild horses, not keep trying to dodge their flinty hooves as they run over my well-plotted garden.

20% of humans are like this. We’re not alone, just unusual.

Note to self:

I CAN TRUST MYSELF to know how to go and when to stop. Truly.

Cf. my “15% overdo recovery time” note in my personal pain rating scale. I really do know what it means to overdo by 15%, and why it’s harder to recover from than 10%. *That’s* evidence of a high level of insight & self-management. I can perceive it accurately when I loosen my grip on “tha Plan” and listen to myself.

I said to myself, “Self…

“LET the inner story that ‘everything will go wrong’ BE WRONG.”

Some moments suck anyway, but they pass a whole lot faster when I stay curious and open and let things go differently than expected.

All that said… I am simply over the moon with delight that this “new pain doc” visit was such a good one and that I feel safe at last in that part of the system! That frees up a ton of energy, now and ongoing. The relief is stupendous.

The resident (training) physician remarked, unprompted and naturally, “After all, you are the expert in your own body.”

Hearing that from a doctor is a show-stopper. As one friend & compatriot said, “I’d be less surprised if a unicorn came to your door and told you you’d won the lottery.”

It feels a bit like that..