Focus

There’s a lot going on.

My own health took a hard dive late last year and the damage continues to evolve…

…On top of an increasingly human-hostile political system and increasingly deadly climate.

Fun times.

So, yeah, sitting here on a big pile of crap. But that’s not the problem.

What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”

I used to have a lot of projects running at once…

  • I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
    Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
  • I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
    Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
  • As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
    The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
  • I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
    I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.

Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.

There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.

Narrowing my focus long before I could hear the words this clearly.

For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.

So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)

It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.

I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.

It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.

I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.

But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.

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Chaos theory

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I agreed to accept that as a working hypothesis.

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

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

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

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

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

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

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

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

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

I can work with that.

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

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

In honor & memory of Ruth Bader Ginsberg.

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

Sizing the Covid-19 problem, for real

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

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

I hate being that confused.

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

This boils it down to one simple, definitive marker:

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

Comparing mortality numbers

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

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

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

Expected to exceed 200,000 in 2 more weeks.

🤯😱💔

Questioning the data

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

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

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

Bottom line

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

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

It’s a real, huge, problem.

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

Self-protection skills

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

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

Here’s what that means:

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

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

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

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

Dealing with questionable cleaners

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

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

Summary

THIS IS NOT IMAGINARY.

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

It really IS a huge problem, still unfolding.

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

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

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

Follow these guidelines for the best chance of staying well.

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

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

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

Note on, & list of, sources

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

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

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

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

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