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

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.

Pulling the masks off in pieces

Having crashed and burned in a (for me) spectacular manner, I’m being (ahem) encouraged by many of my nearest and dearest to stop pretending I’m so much healthier and stronger and more multi-systemically resilient than I am.

My underlying state of health is not good, and I hate discussing it. It’s tiresome and depressing. That said, ignoring it obviously doesn’t work for long. Need a 3rd way.

I’m pushing 60. Time to stop pretending I’m 34… which was my last year of what I still reflexively consider my normal health & athleticism, and it was also when this pain syndrome was laying down its first tracks. Between multiple bereavements, recurring respiratory infections, and repeated courses of megadeath antibiotics, my nervous system was primed for disruption.

As one friend said, “We habitually present a version of our pre-CRPS selves” and, outside my 4 walls and the privacy within, I don’t seem to have anyone else to be yet. How can I exist without coming off as hardy and buoyant? I don’t know what that could even look like.

I go out and do things in public view, then crawl home (nope still no car, yes it’s been all of 2025, yes I’m struggling more all the time, don’t ask) to recover in private. Those are my 2 gears. I’ve recently developed a half-gear of being in my garden plot, but that now requires a lift because the bus is too brutal – although I love that it’s currently free!

It feels like I’m waiting for the world to allow me to heal. If that sounds self-pitying, you’re probably right. I’m new to un-masking, and it’ll take practice to get the tone right – un-self-pitying, but fully honest for a change.

Showing showering

I’ve been drawing cartoons of lives like mine for years. I was waiting to put them into a book, but they’re doing no good in my folio and some have been there for way too long. I’ve also drawn communication tools. It didn’t seem time to share them before, but it sure does now.

First up…

Taking a shower on a bad day:

When I’m rash enough to shower on a bad day, it feels kinda like this.

This picture isn’t finished, but it’s good enough. You can enlarge it to see the way the (to my senses) appalling changes of temperature wrap around every individual drop’s path all the way into the drain.

I couldn’t find a way to draw the way each drop feels like there’s a hook in its head, physically latching onto and dragging energy out of my body. That doesn’t hurt (unlike the hot/cold nonsense) but boy, is it exhausting!

So, when you can tell (pew!) that I haven’t had a proper shower or even gotten wet recently, you’ll be able to surmise that the pain has been higher than my ability to cope with the intensity of the experience.

For the record – I gritted my teeth and showered & washed my hair yesterday morning! I’m taking a bow, frankly. I had a familiar audiobook to listen to, which sometimes can keep my attention off those hot/cold and dragging sensations.

Keep in mind that everyone’s pain is their own. CRPSers don’t all have the same experience in the shower, because, for some, it’s awful in some other way. Not all days are this bad, even 24 years in. Nuance is key. Also, boundaries.

My pain isn’t yours, and nor should it be.

The idea here is to give you a chance to look on, without looking for anything more than your witness. That right there is a powerful thing: just being seen.

Don’t take it on.  Just adjust your expectations, maybe, as I’m learning to do myself.

If you’re a bio-nerd, read up on how humans go from mad mitosis to having skin and organs. It is absolutely fascinating – and explains a lot about neurological variations!

Communication tool: moods & self-care

I’ve also got a delightful communication tool to share.

As we all now know, my mood may not reflect the outward, apparent situation. There can be stuff burbling away that affects me in ways I might not realize, but others can.

I came up with a rough drawing of a rating scale for my housemates to use (when I had some) and it was a huge help to get that objective feedback – without anyone being defensive! I’d sometimes find the magnet moved to a different number, then go away and take care of myself until I was pretty sure it could move back up. Usually, though, they felt free to call me over and show me where my behavior was, and I loved their honesty. Did me a lot of good.

Click here for the full-sized PDF: Irritability Scale

I particularly like how it indicates when a level of irritation is appropriate. That was a mind- blower for me, as I’d been telling myself that it was always bad to be unpleasant. Nope! Sometimes it’s perfectly appropriate!

I think, and hope, that sharing these images and tools will:

A. Be useful, and

B. Get it right through the concrete (taps own head) that I need to come up with ways to live and engage with the world that are congruent with this reality.

My inner Cleopatra, queen of de Nile, needs to get back to Egypt.

Cheers and virtual hugs are most welcome! I’m daunted by this job. I mean… I value honesty enormously… just not about my weaknesses and disabilities 🤣

With a pet & chronic illness

This is a long one. Grab something to drink and put your feet up, if you want to…

In the wildly unlikely event that, say, a vulnerable American citizen felt moved to respect the anti-immigration feeling and return to the lands that, say, my ancestors left in the 1600s and 1700s… how would that work?

It helps if you already have a passport. This is important. Go here:

https://travel.state.gov/content/travel/en/passports.html

and follow the instructions there – whenever you land on it. Passports are issued by the State Department, and the State Department is currently being defunded and depopulated, so their processes may change.

This hypothetical traveler – let’s call her Max Peregrine – and why not? – is female, disabled, poor, and has very short hair. This puts her in several categories of risk in the US in 2025, and she’d like to know what other options there are for someone like her. Her service animal, a minature goldendoodle, has to go with her.

This is important.

Max has learned that a pet leaving the US has to get a certificate from a vet specifically qualified to issue international pet health certificates. She asked her usual vet, who referred her to the USDA web site to find one.

The USDA has been running increasingly lean for years, and has recently been gutted by the incoming president and his team, so the list of vets qualified to give this pet health certificate is out of date.

Max has been disabled a long time and is used to this kind of disappointment, so, after an Epsom salt bath and a TV break, she called down the list of veterinarians in the area until she found one who can (theoretically) give this certificate.

It took the one vet she found 3 weeks to research whether this is even possible. The USDA (which supervises animal health certificates for travel) is running out of staff, after all, and every country people want to bring their animals to has its own peculiarities over what is required to clear a pet for arrival, so it gets very complicated very quickly.

Sadly, the information that non-vets like Max find about import requirements is less than half the story.

Also, the US export process is complex in itself, and requires a 3-hour minimum turnaround between the vet and the USDA for the form to be submitted, reviewed, inspected, corrected, approved, and printed out. That is, if nothing goes wrong.

This vet certificate has to be issued within 10 days of departure (in some cases, 3 days, depending on the country the traveler is going to) so it’s good to start this process well in advance, and be willing to stay flexible.

If, like Max, your pet had an uncertain history or belongs to someone with limited mobility, it’s possible you’ll hit a snag: if the initial rabies series was not done exactly right, you might have to start the series over, do a blood test in 3 weeks, and be sure to get the next one inside of a year.

If you travel to Europe, you’re in luck: go to a certified vet there and get your pet an EU Pet Passport. It’ll make everything a lot easier as it’s widely accepted.

It’s important to remember that Max belongs to a category of people who can’t afford a package trip, nor a concierge trip. She has to do all the planning and reservations herself, and track all that info if, for instance, her pet’s initial rabies vaccination did not happen exactly as intended, and every leg of her trip has to be adjusted, by herself, one piece at a time.

Every transport company has their own pet policies, so she also has to call every single carrier in the chain of the journey to make sure her pet reservation has followed her.

It’s fortunate for Max that her executive function happens to have extra bandwidth for travel planning. It’s in her DNA. Her ancestors have been traveling for at least 350 years.

Since Max’s mini goldendoodle, a girl named Sam, is a Service Animal, there’s no question of that pet being refused. She has to fly with her person.

However, her paperwork still has to be in order!

So, having rectified the rabies shot situation, changed the entire trip to 2 weeks later to make sure her dog can come, and found half a dozen places to get food that matched her dietary requirements in each place she planned to stay in, Max was smart enough to know she could not possibly relax until she actually had her toes in the sand and her dog in her arms at the same time. The preparation for this trip had only just started.

Max is probably a bit overwhelmed, but can get good advice and good tools. She got Smart Tags for her luggage, found friends willing to be phone buddies to use Find My Phone to watch her progress, set an alarm to remind her to turn on Location and 5G at every transfer to give Find My Phone a signal, and then returns to low-rad mode so she’s not battling cyclical vomiting syndrome (which is what happens when she’s around too much signal too close to her body) while conducting a long trirp.

Cyclical vomiting is never fun, but it’s worse all around when you’re packed into Economy class.

Max, who hates travel surprises and likes to be organized, has also prepared a travel folder with pockets and tabs:

  • Complete itinerary in the inside pocket in front.
  • First tab: Check in information for each stage of the trip. This also proves that she plans to return in less than 90 days, because that’s important in an increasingly immigrant-hostile world.
  • 2nd tab: Visa related info: trip insurance coverage, with the coverages page copied and stapled to the front for easy reference.
  • 3rd tab, more visa related info: Lodging reservations, printed in every language she’ll be travelling through, so each border can conduct its own checks. Arriving with nowhere to stay is a big no-no these days; no more turning up and finding the nearest hostel.
  • Health tab: vaccination info. A lot of places really care about this, so get your shots if you want to travel, and get printouts from your provider. If you can afford it, you can have a travel specialist doctor make a yellow International Certificate of Vaccination, which is accepted everywhere – like the best credit cards.
  • Emergency: this tab is particular because Max has underlying medical conditions. There’s a MOLST form, which providees instructions for when someone is unconscious and can’t tell you if they want CPR or oxygen. It should also have copies of prescriptions, which you can get by calling your pharmacist and asking them to print them out. (Some countries require prescriptions hand-signed from the doctor’s office, but electronics are making their way into this process more over time.)
  • The pet, naturally, has her own tab. Her health certification, rabies documentation, and whatever else is needed, go here. This includes her microchip number, because pets require a chip for travel.

At the back of the folder, Max has left space to keep brochures and flyers for things she most wants – from safe places to get food, to inexpensive trips, free/cheap sights, and bus schedules. Max looks forward to filling that up, but knows she has to be careful with money because she’s still poor … she’s just staying somewhere a lot cheaper than her home at the moment, somewhere the government is not (yet) committing very messy self-merc.

And then there’s packing. Max has to bring her own self-care mechanisms, which involve a lot of pillows and some extra gear. Being disabled is a lot of work and there’s just no getting around that. Everything that’s most necessary for that work has to come with, or be bought there, and she’s on a tight budget.

Happily, sunshine is free!

Max is an expert at enjoying the little beauties and making the most of whatever blessings come her way. She’s going to have a fabulous time, and so is her service animal.

I’m a little envious, but I’ll be sticking around for the foreseeable. I helped Max with some of her research, though, so there’s likely to be more to come…

Foggy… and formats

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.

 

Neuro reset FTW

I’m working on building up stamina because being a blob doesn’t agree with me.

I had one of our rare, hard-won, absolutely stunning neuro physiotherapy sessions yesterday. It usually takes time (days or even weeks) for my body to embrace the resetting, but this one is showing up fast.

Until last week, walking a bit too far would wipe me out.

When I was well, walking lifted my spirits and calmed my mind, and “too far” had more to do with comfort & convenience than anything more pressing.

For most of my illness, walking helped in the aggregate – if I kept it up, I did better over time. It was good, and I was glad to do it, but…

I’d forgotten, until today, just how lovely it was possible to feel after a good walk.

Yes, I’ve overdone a bit, and I’m open to the idea of staying in tomorrow & taking it easy.

I just… I haven’t had a workout high in… dear heavens, I can’t even remember. Decades, possibly.

Must remember to send this link to my physiotherapist. She’ll be:

A. Over the moon for me.

B. Reminding me to drink a lot of water and put my feet up for a bit.

It’s hard to keep it all in perspective – to celebrate this properly, without falling into the old trap of ignoring all the ongoing work it took to get here; to keep it up & stay honest about the jungle of limits I still have to negotiate.

Good day, though, eh? Really, really good. My heart is as light as the feather of Ma’at…

New times; new topics

For audio version (with extra fun stuff), touch this sentence.

I’m not going to mention current events in my country.

This is a series about traveling…

Traveling in interesting ways.

The ADHD is strong in this one:

If a thing is interesting, it is ever so much more bearable.

If I were to travel, I would like to bring my pet.

I hear some of you shouting, “Why, you insufferable loon? Don’t you have enough to deal with??” (Sorry, Mom.)

For one thing, I like her company; for another, she keeps me on schedule and is really good at “body-doubling”, or hanging around to help me focus on a task. She literally holds the yarn while I crochet, and tracks the loose bits of thread when I’m sewing. Cats are supposed to be interfering, but she’s genuinely helpful.

Also… Traveling with a pet definitely makes this more interesting.

Chapter 1: pet passport

I was going to start with the effort to find a vet to make her travel certification happen. I’m not up to that right now.

Chapter 2: Trip planning

I’ve been reading up on alllllllll the aspects of this trip for a long time. Years, really, but most recently for about 3 weeks. It takes some noodling around just to find out if it’s impossible or just kinda weird.

In case it isn’t obvious, I’m okay with weird. Impossible takes a little longer.

Aspects to understand for planning a trip like this:

– The only way to get to my target continent is by air.

– Some airlines are pet-friendly.

– Some airlines that are pet-friendly for domestic flights somehow refuse to carry animals at all on international flights.

– Some airlines that are willing to carry animals on international flights, don’t allow them in the cabin. From my experiences before, I absolutely, flatly refuse to send a cat in the hold, regardless of the airline’s reputation. Never again.

– Am I overthinking/ over-explaining? I think I am.

Point is, there are all these layers and layers of information to dig through. I had to keep on digging through possibilities, then peel back the incompatible options, until everything finally got very simple.

Cats are not supposed to be in a carrier for more than about 7.5 hours. So, all I really had to do was get her from my airport to an airport less than 8 hours away; 3 to choose from. Flights within that other continent are all within that time frame, so the crossing was all that mattered.

Still with me? Good.

Flying into one of these 3 cities puts me at the heart of the high-speed rail line, something I’ve been coveting a ride on since it was first mooted roughly half a century ago.

At the other end of that high-speed rail line is a ferry ride, a 16-hour journey over one of the most adorable seas in the world, to an island that entrances me.

The total cost of the train and ferry (even with the pet) comes out to less than half the cost of another darned multi-leg plane trip *without* the pet, eating bad food, too far up to enjoy the scenery, and breathing other peoples’ air.

In short, if I were to organize such a trip, we’d have 3 modes of transport over 40 hours, lungfuls of fresh air, and moonlight on the Mediterranean to welcome me home.

I might love it. I might hate it and never want to do any of that again. Doesn’t matter from here… because it’s interesting, it’s affordable, and I want to give it a shot.

 

Another chance to get it right

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

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

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?

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…