Category: survival

Word for the day while riding whirlwinds

Isy / / cultural context, radical presence/radical acceptance, realpolitik, survival, word for the day

“Coherent” is a good word.

In one sense, it means making sense; that is, speaking & writing in a way that’s both rational and relevant to our shared reality. It’s not messy, shouty, or rude.

It also means being complete in itself in that moment. It’s when all the pieces that make up an idea, feeling, or statement hold together. It’s the opposite of fractured or flailing.

It can seem like a high bar, especially in a country where the system of education has been under siege for half a century, the economy is teetering, and the leader is sending soldiers into cities to attack people that he thinks disagree with him. (If they agreed with him before, as many did — Southern California used to be deep red, despite Hollywood’s reputation — now, probably not so much.)

The opposite of coherent is incoherent.

So, as I lay here waiting for my body to come online and hope we get to be vertical in the next hour or two… and as I watched my mind flicker and flash among the upheaval, anguish, and uncertainty in my country, my loved ones, and my own future… I realized today’s word had to be “coherent”.

As I mulled it, I felt my mind coalescing into sanity again. I found myself reflexively doing the stretches that keep my legs working. I found my sense of what’s my stuff and what’s others’ stuff re-establishing itself. I found myself feeling fortunate again, which I am, because I’m safe and housed (and safely housed) and I live in a charming place where I can get my needs met.

The whirlwinds keep whirling. It’s their job. I think of being in a bright, bouyant column of air filled with those of us who hold each other up. The energy here holds us together instead of tearing others apart.

In the midst of the storm of chaos, I hold myself to the word “coherent”, and coalesce into myself. The winds may throw me around, but they don’t pull me apart any more.

 

The Beast

Isy / / activity, ANS and fight-or-flight, CRPS knock-on effects, loved ones, perspective, self-care, survival

One of the characteristics of CRPS and some other longstanding brain-driven pain conditions is the occasional personality transplants which, especially combined with memory-holes and perceptual shifts, can really do a number on relationships. This situation is called the Beast. Medically, it’s considered part of the territory.

I’ve been absolutely smug about my aability to stay away from the Beast. Since regular psychotherapy is part of the gold standard of treatment for CRPS, I’ve prioritized psych care — from professionals who have a good understanding of trauma and PTSD, since actual specialists in central pain are so rare, and trauma/PTSD is a good model to start from. That care hasn’t been possible for most of the past 5 months, and I’m taking stock of how much I’ve lost in that time, now that I’m back on the schedule.

I can count on 3 fingers (now 4) the times I’ve been the Beast in ~21 years. (I’m fuzzy on my first ~4 years of illness. It was a blur.) The most recent of those times was due to a neurotoxic exposure. One was when I lived in a mold infestation I hadn’t mitigated yet. One was during a particularly hectic trauma period. The current one was after I decided to make an extended, extravagant physical effort in not-very-safe air. I really thought I could pull it off, and just rest afterwards.

But these are reasons, not excuses. I hurt people who didn’t have it coming at all. I injured relationships I care about deeply and intend to protect. Today’s event cuts particularly deep.

“Why would you do that?” is an unanswerable question. If you don’t have this shit disease, it can’t be explained. All I know is that I felt myself being pulled under, not recognizing fractured memory and wacked perceptions. I grabbed for a rope. Didn’t think what it was attached to, because I thought I was drowning.

Mind you (adds that inveterate shit, Sarcastic Sister), my feelings are such that I’d rather be dead than hurt my loved ones. But this is not the time to say that, because it makes no sense from the outside, in light of what they just experienced from me.

Need a moment to process this.

So… diligent psychoemotional tune-ups, reasonable pacing of activity, and a safe environment are not at all optional. That rubric is my best insurance against the Beast. What I know from seeing my long-term survivor cohort is that there’s no guarantee I’ll be able to avoid the Beast forever. So, I’m wrestling with this reality and not really wanting to be here for my life. (“I’d rather be dead than feel this way” was a state my late BiL and I could bond over.) Many of my fellow CRPSers know the feeling, and it eases my soul ever so slightly to know it’s part of this disease experience, and not because I’ve actually become evil.

I’ve done what I can for now. I’m off home for meditation time, if I can, and a familiar show if I can’t. I have to remember how to rest and how to push myself no harder than is good for me. I have to take recuperation very seriously and basically expect nothing from myself for a week. I have to manage this terrible storm of feelings in the absence of a stable central nervous/ endocrine system. I hope to have the chance to rebuild a couple of relationships. We’ll see if that’s do-able. Fun times.

I’m looking for some more positive message to turn towards or even something to lighten this a little, since the point of this blog is “living anyway” in spite of what this craptastic disease does to people. The only thing I’ve got to offer right now is the passage of time and the hope of some recovery… within the context of this horror-show snowballing around me, around us all.

With a pet & chronic illness

Isy / / CRPS knock-on effects, documentation, food allergies, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, self-care, survival, tips on traveling with pain

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…

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…

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…