Shore Break

There I was, trying to steer the 3-headed rhinoceros that is the de-mold-the-mobile-home project (dubbed “DeStroy DeMold.”) Two of my volunteers had gotten sick with things that could conceivably relate to:

  1. Their refusal to wear respirator masks, and
  2. The craptastic nature of the stuff coming out of the walls.

So, no more volunteers, and I was trying to figure out what next.

With heavy multiple mold exposures.

Detail of a Bosch painting. Whiskery demon holding and reaching for a misereable man.
Bosch knew.

And food poisoning (different story.)

First things first

I declared a personal moratorium on entering my place unless I had to. Ditto for my car.

Counting the inescapable mold-factory of the leaky place where I’m staying, that means I had been sucking in three, count ’em, three, substantially different species of mold. …And feeling very sorry for myself that I was strangely unable to compensate with supplements and air filters, think my way through the end of a compound sentence, get through a pain flare without going zombie, or recover from an ordinary bout of hit-the-opposite-wall vomiting.

Sorry, letting my vile sense of humor run away with me there. I actually did get it all in the toilet; I’m just not sure how.

Attitude adjustment (with cast of characters)

Last week, my gracious hostess Laurie and I realized we had not gone to the shore this year, despite our good intentions. 24 hours later, she had us all set up, and invited her excellent friend & traveling companion Dave along for the ride.

Dave & Laurie are wonderful together. A gal so butch her nephews call her Uncle Laurie and a guy so cis he could — and did — show up in white Gucci snaffle loafers and still look straight, they bring out a gleeful zest in each other that’s contagious.

woman and man in nearly identical shirts, thumbs up and laughing

Laurie was our hinge, the one who is so close to us both, and it was impossible for me to be stranger-shy with their buoyancy lightening everything.

Dave has an enormous, unflappable black lab named Bernie as his guide dog, who avoids being lethargic simply through being so good-natured. Laurie has a teeny weeny toy fox terrier named Vinny who is irretrievably in love with Big Black Beautiful Bernie.

Imagine a stately black galleon with a high-powered white tender zipping around alongside, and you’ll have the image perfectly.

I almost brought the cat…

cat,distorted with closeness while coming at the viewer

But five bodies and 14 feet seemed like quite enough.

So: me, a human; Laurie, human, with Vinny, pocket pup; Dave, human, with Bernie, guide dog.

If everyone sucked in their hips, there was just room to pass between the beds in our one room.

The weather was perfect. The waves were influenced by a hurricane out at sea, and were nearly Californian in size and color. The dark sand was almost silky. The water was about as warm as it gets, brisk but not bracing, according to Dave’s well-tested algorithm.

photo of everyone but me, on the beach

What I did on my vacation

It wasn’t an eventful trip on the outside — mostly. At one point, I saw Vinny heading down to the water, mooning hopefully after Bernie; I almost called him back, but if you’ve ever seen a terrier on a mission, you know that only going over and picking him up would change his mind. Something told me to wait.

Bernie ambled into the lap of the waves, checking on his master. Vinny toddled after, absorbed and elated. The wash of the wave splashed up Bernie’s ankles; Vinny’s little legs shot out to the sides as he tried to brace against the movement, and off he went. His human turned with perfect timing and lifted him out of the water as the backwash carried him to her, knee-deep.

I was braced to race and plunge in for some dog-rescuing, but watching that remarkable little ballet unfold was quite a moment.

Vinny isn’t the only one who got a bit more than he bargained for.

I was having a bangup time, playing at the shore break. Diving under, popping over, and frequently getting trashed by the waves is such a blast. I might have some retriever in me — probably more than Bernie, who couldn’t be bothered with boisterous water.

I saw two waves converge at an angle, and jumped on them to ride the double-act into shore. Little did I know that two other waves had approached that intersection from behind me. I got washing-machined like I rarely have — completely bashed and thrashed and flung around under the water. My sinuses got washed along with everything else. I’m really glad there were no solid objects (besides me) in that water.

I came up hooting with glee — then felt something was amiss.

Somehow, over the surf, the words, “It came out!” reached me from our pretty neighbors on the thinly-populated beach. I looked down and, sure enough, one half of my generous allotment of, um, chest flesh was making a determined dive for freedom.

Wrestling it back under cover was considerably hampered, not only by the cantankerous mechanics of a soggy bathing suit, but by the fact that I was laughing so hard I could barely control my limbs.

I’m over 50. I don’t have to care what people think. Laughing is so much healthier than anxiety!

Most of my exits were much more successful.

me climbing out of the surf, with another breaker behind me

But seriously…

Apart from that, we just found the nearest beach on the first day, found the best beach on the second, chatted with the neighbors, walked, ate, told each other stories, and enjoyed the muscular shush of the sounds of the shore. We all got ice cream.

It was transformative on the inside, at least for me.

I found that I kept talking about my childhood and my family of origin — not about life as a spoonie or neuro-nerd or an Isypedia of potentially life-saving information, but about life as something quirky and full of character; if not innocent, then willing to be optimistic in spite of it all.

That was odd, but refreshing.

After a day at the seaside and a good night’s sleep (despite the pillows fighting back against my leaning-tower arrangement), I woke up feeling…

What’s the word…

Um…

Oh, how shall I put it…

What do you call it when you feel like you can tell you’re inside your skin and the mental lights are on and you can tell what’s going on around you? Y’know, zestful and buoyant and present and awake and alive?

Oh right.

I felt more like myself than I had in about as long as I can remember.

woman walking up beach, looking totally at home in her skin.

THAT was the opposite of odd, though it was totally unexpected.

Mold toxicity: CONFIRMED.
Prognosis: EXCELLENT.
Recommendation: GIT THAT SH-T.
Target: ACQUIRED.

My brain unfolded like an origami map and alternative ways to get this mobile home taken care of — AND paid for — emerged from the crumpled mess of blocked avenues and despair.

And all that quiet, worried persistence about getting in at least one short walk most days? Well, the exercise intolerance packed it in, too — I walked a couple of miles the day before we left, the day we arrived, and the day after; definitely no exercise intolerance, without the wicked mold exposures.

This is huge. So huge.

Being able to exercise opens up new worlds of improvement. Nothing is as stabilizing to every body system as exercise. Few things are as stabilizing to the brain. I can’t even find words for the explosion of gasping hope I hardly dare to let myself feel.

My planner is about to explode. I’ve got things to do this week! WOOHOOOO!

A word to my  longtime readers & fellow spoonies (a wise & canny crew)

Remember all the times I’ve said that it’s sometimes just a question of getting through one day, one hour, or one breath at a time, and that there is always an afterwards?

This, my dears, THIS looks like an afterwards worth surviving long enough for. Let’s see what I can make of it.

May we all have the right care, the right meds, the right supplements, the right routine, the right friends — and the right breaks.

Coda

30 hours

Five years of no ocean
ended at last:
the waves curled almost Pacific blue
and crashed most assertively;
soft silky sand
burled them mackerel-patterned
below utterly spotless blue skies.

I ran out all daffy abandon
“Hi water! Here I am!”
and the waves came to greet me,
and beat me, and rub me all over
like a pack of retrievers convinced I held food…

A smug Californian, I dissed the sun’s vigor
But turns out I do burn — quite well! —
on Block Island
in mid-September…
but oh, it was worth every sting.

Rainbow sky melts above while returning.
Sun rivers and I’m stupid happy
One glint, one shimmy, and all I can smile
is eyes locked on water, waiting for more.

woman looking at sunset over water, dog nose poking out of jacket.

Shameless plugs

DJ Fabulous! LaurieB, a local fixture at sober fests and community events, works in Western Massachusetts. She plays all styles, genres, and eras of music, specializing in all-ages events. She gets people smiling and moving and having a good time. 🙂

David Roulston, Esq, is the sort of lawyer every  community should have. He does, or has done: probate & wills, criminal defense, designing implementation of legislation, mental health and community health, poverty & homeless issues, and business law.

Laurie took almost all of the photographs. When I mentioned I’d credit her, she said, “I think they’ll figure it out. Who else is gonna take them? The blind guy??”

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What I did with my summer

I’m aware that I disappeared for awhile. Obsessively focusing on housing and breakup, everything else sorta disappeared.  Here’s what that period looked like, framed around the 3 dimensions of life I always update my doctors on — physical, mental/cognitive, and emotional changes:

June

Physically: holding together with bubble gum and baling wire. Somehow didn’t injure myself with packing, storage, and less and less help with errands.
Mentally: dear gods and little piglets, did I ever get a lot done! Dealing with my own move, identifying resources for nontoxic and used building components, dealing with an identity theft, getting a new provider on board (acupuncture), looking at homes, finally getting an old friend out of a deadly situation and somewhere safe, and still keeping my appointments.
Emotionally: J used his last Saturday here helping a friend. He left late enough on a Monday that we could have a bit of morning together and say a proper goodbye. Best moment we’ve had in a long time. And so, my partner of seven years removed his hugely-wounded self to the other side of the continent, so he couldn’t hurt me anymore.

July

Physically: living in one mold factory, driving in another, and working in a third. Discovered that Borax, vinegar, and hydrogen peroxide are very unkind to auto interiors and soft furnishings. Discovered concromium, and hosed almost everything down with it – twice. Much improvement.
Mentally: bought a house (mobile home in a sweet park, actually – who knew!)
Emotionally: saw a beloved friend from my youth. Woot! After five friends, one by one, sat me down and told me how was going to be, I promised to include my friends in the work of making my home safe for me. Horrifically, one of my dearest and most dependable friends dropped dead. See Taming the Beast for some of her outstanding work on nontoxic self care, mast cell disease (weird allergies), and central-pain management.

August

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

Physically: much stronger than this time last year, but still have exercise intolerance, so have to go carefully. Tried to lower meds to summer pattern, but whoops! Bad idea. Definitely not getting the usual warm weather recovery; so, having a chemically and biologically safe home is more important than ever.
Mentally: flailing, burned out and not willing to admit it. Housemate/hostess pulled my head out of my butt and got me back to pacing, alternating activity and rest. Figured out how to organize the work on my home.
Emotionally: it’s extremely reassuring to be 5 min. from the highways, 10 min. from the store, 15 min. from the hospital, 20 min. from nearly half my regional friends, and have a bunch of sweet-natured busybody neighbors making sure I’m all right. Started opening up my social world, now that I’m here.

Summary

It’s been one hell of a summer.

When I look inside, I see myself as entirely raw, a walking mass of weeping wounds. Naturally, this doesn’t normally show, because I’m a responsible painiac and I’ve had 20 years of experience in choosing what to show, what to focus on in public.

Despite so much wounding, healing is possible. In fact, it’s imperative. It’s what I do.

For better or worse, here I am, still alive and kicking. With staunch old friends, something resembling a plan in place, and one new friend who touches on my past in interesting ways and opens up my sense of an unexplored future, I’m looking ahead again – not as a duty, the job of the living; but because it could be really fun, and how much fun I have is largely up to me.

head shot of blonde woman grinning 3/4 face

I’m outrageously lucky. Yeah, multiple crap-tastic diseases, too little income, too much loss and pain; yada yada, that’s life sometimes. In these harrowing times, kindness, love, and care define my world, and that’s so very wonderful.

Life’s short. Take care of yourselves and each other – and do have fun. It makes you stronger 🙂

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Back to work

The massive physiological destabilization triggered by J’s departure doesn’t change my own deadlines: I still have to get out by next week, stay somewhere in the interim because I’m now too frail to camp alone, work out mitigation strategies that’ll work for both me and my hostess, and maintain forward momentum on my house search.

The physiological damage does make safe housing more critical. My body is borrowing against a future it may not have, to get through this difficult period. Fact of spoonie life.

I have movers lined up to get the furniture out, but I don’t yet have storage to put it in. So that’s today’s job.

I was nibbling at two properties, both of which are now out of reach, but it was a learning experience:

  1. Small cheap homes in the country go like lightning. By the time my realtor and I could both get to the house that looked close to being right, it was already under offer.
  2. Renovating a good shell, even when the demolition is already done, takes serious time, as well as money.

This second point has a lot of bearing on my work here.

From a  builder’s perspective, building a house from scratch is the most expensive thing you can possibly do. Buying a shell and renovating it is the ideal combination of price and control over the result.

From the homeowner’s perspective, where the heck am I going to live while the renovation is done? Rent isn’t cheap, and rental units — for reasons described at much length in previous posts — are too risky for too many reasons to be a rational option.

So, I’m putting “buy a plot, preferably with a driveway, well, and septic, and put up a new cottage” back on the list. It may spend out my money up front, but the housing formats I’m considering are put together very quickly, so I’d be in safe shelter in fairly short order. THAT would save me a LOT!

I’m way beyond frustrated or exasperated. I’m in that still, calm, bitter pool on the other side. One foot in front of the other. Onward.

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A fond farewell

J just drove away from here for the last time.

Friday, he filled up the kindling box and organized the firewood to his satisfaction.  (Yes, it has been cold enough in the mornings to need a fire sometimes. In late June.)

Saturday, he helped my friends change out a very troublesome toilet. It was not a task for the faint of heart.

En route, he let me know he’d decided to leave this weekend, 2 weeks earlier than planned.  I could have handled it worse, but it wasn’t good.

Being part of doing something as fundamentally Freudian as changing a toilet helped, though. We both were a lot better afterwards.

Sunday, he took a “recovery” day but still mowed the whole lawn, did the lion’s share of washing every stitch of clothes and linens for me, cleaned the kitchen, and vacuumed the living room.

I wrote up an illustrated “so long & thanks for all the fish” sort of letter for him, so he could leave easier in his mind. I saw him read it, pause, smile upside-down and let one eyebrow drift up. A shadow lifted.

Neither of us slept much last night, but spent hours hearing the other toss and sigh a floor away. While I was rattling around upstairs at midnight, he came up and asked for alka-seltzer. I gave him half a box for the road. (It’s part of my gluten-exposure first aid kit.)

This morning, unable to lie down past 5:40am (my feet were spasming something awful), I got up and took a shower straight away, giving him time to slip away if he wasn’t up to seeing me. He waited until I was dressed and ready, then gave me a warm hug and a warm kiss and asked for my blessings.

I carried the cat out to wave goodbye.

When I came back, there was, of course, exactly the right amount of water in the kettle for my tea.

So, this is what it looks like to let go with love.

It’s still devastating, absolutely devastating, but a lot less wracking and a lot quieter than the usual alternative.

And now, back to my regularly-scheduled programming of coping with agony, loss, DIY for gimps, too much work with too little time and capacity, appropriate depression/anxiety, and impending homelessness.

Send in the clowns!

Today’s task: get my last box into storage, retrieve my camping stuff, and assess whether I’m safe to use the table-saw I’ll need to rent to do the subflooring downstairs. Probably not a good idea. That might have to wait. At least a week.

Okay, storage it is. And work on prepping the car for camping. Because the future happens whether I’m ready or not.

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Cold Watershed

In my blogs on getting safe housing, I’ve researched and discussed the following:

  • What aspects of ordinary housing do me in
  • What alternative building techniques could do for me
  • What’s involved in a fresh build, nontox and otherwise
  • What “reno” can really mean for me
  • All within my picayune means.

The last bullet point makes it all increasingly absurd.

In the most recent housing blog, I started getting my head out of that two-digits-to-the-right-of-the-decimal possibility. The  housing market has been creeping up, and this year it’s definitely putting those possibilities out of reach.

It’s time to stop thinking I can go it alone. I clearly can’t — not in any way.

Now, time to start researching in 2 different directions:

  • What’s a reasonable range of cost, given the kinds of houses that are on the market, to acquire a fixer and renovate it to my requirements?
  • How many other people or units could that accommodate, generally?

And  then, given those harder and more realistic numbers, figure out the following:

  • How to get that funded
  • Who’d be interested in funding it
  • A list of good prospective tenants who need safe nontox housing
  • What the contract with the funders would look like (several ways that could go)
  • What the contract with the tenants should look like

Because, as my Dad would have said and my other relatives still do, better keep everything clear and above-board. That’s what contracts are actually supposed to do.

Of course, this contract will have to have contingencies for my incapacity and death as a real possibility. Plan A, the place goes on the market and all investors (including my heirs) get their money back. Plan B could be more interesting. Depends on who shows up for this.

And all of this assumes I can stage-manage all this.

I’m so scared.

Meanwhile, back to packing and health appointments. One foot in front of the other.

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3-4 solid tools for tough times

(If you’re looking for my housing-search info, go here for the latest with all the tables, and here for the one before that 🙂 )
I’ve often remarked that one of the really SPECIAL things about CRPS is the way it essentially “re-traumatizes” the brain: in many ways, it duplicates what happens to the brain when horrific things happen — car accidents, war, etc.
That’s so not right.
This is why we tend to be a leeeeeetle intense at times, and why those of us who survive it long-term become Jedi masters about managing how we appear to feel and how we manage how we really feel.
A key component, as many of you are well aware, is helping yourself find and develop the tools that let your brain process the endless hurt, integrate useful lessons, and release the bitterness, day by day by day. 
 
This is where a regular inner practice comes in handy. I’m sure there’s something most of y’all have got going, possibly related to CBT or DBT or mindfulness, for anxiety, grounding and self-calming; these are great tools. To strengthen yourself further and create more resiliency, try taking that to the next level in some way.
Here are some tools from my life and from survivor workshops and so forth. Individually, they’re amazing. Together, they’re mutually reinforcing and geometrically powerful. They are:
  • Free writing
  • Journaling (not the same thing at all)
  • Disciplined movement
  • Some kind of meditation
 

A. Free Writing:

1. Set a timer or page-count. If possible, use paper and pen rather than keyboard.
2. Once you start, just keep the pen moving forward, no crossings out or edits, just keep the pen moving forward. 
3. When the timer/page count is done, stop right there. It’s okay to finish the sentence, but stop.
> This does something important, which we don’t really have language for but which is absolutely primitive-brain-supportive, that helps de-sting one’s thoughts and experiences.
> Start as short or long as you think it would be successful to do, and go from there. Time spent doing free-writing is never wasted, but running around and art are good too.
> Walk away and do something physical or practical afterwards.
>> Take at least 2 hours before coming back for another round. The brain needs the integration-rest-time, for this to work.
> If you leave out any of these points, then you’re journalling, which is also great, but it’s a totally different strategy as far as the brain/mind/emotional landscape is concerned.
This technique is particularly useful after school, after a big incident when the feelings have calmed down but the mind is still recovering, or before starting a big project.
 

B. Journaling:

1. Put it outside the head and onto a physical medium.
That’s it.
> Journaling can be written, drawn, painted, danced (if filmed), sculpted, photographed, montaged, whatever. Out of the head and onto/into a physical medium.
> We journal for ourselves alone. The writing, pictures, even the dance footage, are not for showing. They might be shown later, after the period of life has passed, but that’s not the point. More commonly, they lay the groundwork for exponentially better art that’s made later.
> Keep them close, where they can be consulted by the one who did them. Nobody else is involved.
> Journaling exteriorizes and preserves our thoughts/feelings/subjectivity so they get less “gluey” and less scatty and become easier to handle.
> Looking over a period of life’s journals can be a great way to shine a Klieg Light of God on things, and free you up to make great changes quickly.
> It’s compost. Don’t expect it to be sweet or glorious, just let it compost. It pays off over time.
 

C. Disciplined movement

Of any sort: dance (Traditional, hip hop, jazz, modern, square, anything), t’ai chi, yoga, playing drums, gymnastics, long-distance running, group sports (plenty of opportunities for seeing both useful and silly ways to handle conflict), canoeing, sailing, etc.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu
> This literally helps organize the brain, especially a growing brain, most especially that of an intelligent child.
> It also helps regulate neurotransmitters to a healthier balance.
> The body working under specific direction of the brain is enormously neuro-protective and re-balancing. Nothing else works half as well for the brain, the mind, the feelings, and the immune and digestive systems, as disciplined movement. Its value simply can’t be overstated.

D. Meditation

Of any of several kinds.
It seems most useful to have a couple of different kinds of meditation, so if you’re not up to one, you can do the other, and the benefits are mutually reinforcing.
1. “Still” meditation is mostly based on breathing with attention, and once that gets more natural, there are progressive layers of using attention & breathing to strengthen, stabilize, and regulate inner life and responses to outer events in life.
2. “Standing” and “Moving” meditations are often easier than still meditation when it’s harder to focus. The posture and/or movement provides a way into the meditative state.  Also, it qualifies as “disciplined movement.” Two-fer!
> Different methods of “still” meditation only become interesting once you’re generally pretty comfortable with sitting and breathing, and being able to put your attention on some place in your breathing path and just rest it there. (Feeling the air come in at the tip of your nose. Feel it come down to 2″ above your navel. Or rest your attention on any place in between. I love the feeling of it moving in my lungs, so that’s where I focus. My mom focuses on the tip of her nose. Just pick one and learn to rest your attention there — with a naturally-upwelling calm delight, yum! — while breathing.)
> Set a timer, and respect it — just like with Free Writing. For that period of time, all you have to do is the meditation, of whatever kind. It’s okay if it’s boring. It’s okay if it’s frightening — you’re actually safe and okay, and it’s okay to breathe through the feelings and let the time pass. The timer is your safety net. Remember that it takes about 5 minutes before and after meditating to transition, and that’s okay too.
> “Standing” and “Moving” meditations come in millions of styles and schools. These include yoga (hot, cold, slow, fast, many schools!), t’ai chi, qi gong (thousands of schools), judo (those who engage in judo are referred to as “playing” rather than “fighting” judo — it was my first martial art; surprised?), aikido, Shaolin — in fact, any martial art with a great teacher… and of course these come in styles relevant to the countries in which each particular school originated — Japan, Okinawa (my Dad’s karate style), China, Tibet, India, even France (savate) and Brazil (capoeira)… lots to choose from.
 
I’ve found that most more-detailed techniques of managing and clarifying thoughts, feelings, and decisions are basically variations or elaborations of these 4 core strategies. Play around and find what works for you.
 
I copied this from a comment I wrote on social media. So many of us need reminding, especially me. I’m so frightened and overwhelmed myself, I want to put this info where I can grab it quick.
Off to set a timer and do some t’ai chi.
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Fixing the old, opening doors…and 2 shameless plugs for highly competent friends

What a couple of weeks it has been!

The local police chief failed to take a police report about an identity theft for 4 weeks. This has brought my mortgage process to a screaming halt. For some reason, it takes the local PD another week to generate the hard copy (some of us can just hit Print… In California, they tore off the relevant layer of NCR paper and handed me that. This town has some weird stuff.) I can get the mortgage app back on the road late this week, maybe Friday. /Eyes roll so hard they fall out and dribble across the desk./

You won’t get that full story, because I couldn’t log in for most of it. (Probably just as well.) The mighty Wizard of Interwebbery who has kindly chosen to support my online presence for years, has triumphed over the poisonous Login Lizards who made it impossible for me to post. Steven Radecki, my hat is off to you! And since I don’t wear hats, I had to put one on specially, just to doff!

Shameless plug: When he’s not defeating Login Lizards or whacking hackers, he publishes books at Paper Angel Press  or constructs interweb-homes for lovely, tasteful, intelligent people like my readers at Practical Content. He’s a joy to work with; highly recommended!

So, finally, I can gather my thoughts here – and share an outstanding set of information I’ve learned about low-income, non-toxic housing in this time, in this country, and in this region. I know darn well I’m not the only one interested in this!

Tabulation

Over the past few weeks, I’ve been researching what goes into making a home I could live in. I had to learn a lot about building materials, ordinary building practices, alternatives, brands, and a surprising level of detail – combined with yawning gaps of ignorance – about all of that.

Here is a more colorful version of the table I sent to my Dr., laying out what it is that I react to an ordinary housing, what the reaction looks like, and how long it lasts. The columns on the right indicate how much control I have over this in different environments:

Table_WhatExposuresHurtMe

Here is my high-level, thumbnail sketch of how much it would cost to put up a building with one to one and a half stories, 600 square-foot foundation:

And, last and biggest, here is a link to the Excel spreadsheet I worked up as I was researching the costs for conventional versus non-toxic building which I could get hold of online.

PLEASE NOTE: this is for my planning purposes, not yours! This is not a responsible price guide, it’s me dumping the crap-tastic information I could find online, into another thumbnail sketch I could work from, as I talk to my builders and funders and so forth. In short, this is the third-grade homework that could one day lead to a thesis, but don’t confuse the third-grader with the graduate, okay?

BuildCosting4myNeeds

Of course it looks impressive! – and of course it makes all kinds of sense. I tend to create informational material that does all of that, whether or not it should. Please be very diligent in costing out your own projects with appropriate professional support – but feel free to make use of the search terms, brands, and concepts I’ve mentioned here.

So, here are the results of much thinking and online research. Now, time to do my due diligence: checking my figures against competent local professional experience, filling in the blanks, and otherwise holding these data to the test of reality.

Filling in the blanks

Following through with my due diligence opened up a big fat wriggling bag of boa constrictors.

Intellectually, lifting the lid and finding a muscular tangle underneath is intriguing; these days, I’m not sure I can take shock and surprise anymore! However, this is why we have friends, and why it’s worth the spoon-tastic effort of taking care of relationships. I got hold of an old friend, who’s a longtime builder, a good listener, and who always, always tells it exactly like he sees it.

I find that level of honesty very reassuring. I don’t need people to have soft squishy manners, I need not to have to guess!

As you can see from the tables above, I haven’t priced out several key elements convincingly. I had no idea how much it costs to get electricity in. From the masthead at the road, to inserting power into the house, is probably around $2000. Once inside the house, as long as I don’t have more than 100 A of electrical need, I could probably get that done for $5-8000. This adds a total of $7-$10,000. And then there’s plumbing: one kitchen and one full bath for a small place, probably $8-10,000.

Well and septic are fascinatingly complex examples of geology at play. I heard about one 3rd-generation well builder who could describe, in such detail it’s as if he could see it, exactly where a ledge dropped off, where a granite seam ran, and if you moved your well 3 feet to the right, you’d have a much shorter drill depth. I also realize how breathtakingly rare that is. I don’t even know if the guy is still alive. I do know that the hard-working people who dig a well, or anything else around here, have to get paid for the digging they do, whether or not it means I get what I want.

The geology of the Connecticut River Valley is so complex and interesting that several of the world-class colleges in this area have classes dedicated to just that.

What this means to me is, putting in a new well and septic tank does have the minimum costs I cited, but the maximum costs can be horrific given the wrong geological morphology.

Checking my assumptions like a hockey star

Building is a complex gig. Although it looks like a bunch of hammerheads slamming nails and flexing their measuring tapes, there’s an astounding quantity of math, knowledge, organization, and subtlety that has to be done before, during, and after the build.

I’ve sometimes wondered if certain aspects of the building code were meant to keep costs up and access for the low-income that much harder. However, as Kris Thomson (of Kris Thomson Carpentry) reminded me, “People die for building codes.”

It relates to my apothegm, “there’s always an afterwards”: clever economies made in the design stage wind up exposing people who can’t afford better alternatives to problems that may not be survivable – from toxic exposures, to overwhelming infections, to house fires. This is where someone with Kris’s depth and breadth of intelligence and experience really stands out, for being able to make sense of something as technical as building codes in the context of their history and the social forces that have shaped them over the years.

Get him talking sometime; he’s a natural storyteller with a voracious mind.

The real, head-slamming moment came when, after an hour of listening carefully to my concerns, explaining fully every question I had, and telling me all sorts of things I never knew, this builder turned my thinking upside down with two hard data points:

    • “Building new is absolutely the most expensive thing you can do.”
    • “If you get an existing building, even if you have to strip it to the frame and make structural fixes, you have:
      1. more leeway in nearly every respect;
      2. less than half the moving parts;
      3. smaller pieces to juggle.”

Kris does make a living restoring and renewing old houses, so that’s his familiar territory. Structural work holds no fears for him. It’s good to note that he’s close to other people with horrific sensitivities, and doesn’t take these things lightly.

Old and antique houses are really common here. Europeans have been building for their heirs for well over 300 years in this region, a slice of history that deserves way more than half a sentence.

The point is, although I’m very reluctant to take on too many unknowns, if Kris says stripping and re-fleshing an old house is ultimately as safe for me as building a new one, I have to stop and consider that seriously. He’s not taking my concerns lightly; I can’t possibly take his suggestions lightly.

Revising, so to speak, an old building means that the following are already done, upgradable if they’re not currently up to code:
• Driveway
• Foundation
• Framing
• Roof
• ? Septic system (with at least one already in, even if it needs revising, subterranean features are less of a mystery)
• Electricity and phone (bringing up to code is much easier than creating new)
• Siding, probably
• Flooring, potentially gorgeous old hardwood
• ? Heating system

Once we started enumerating the advantages, I started feeling the pull… That’s a lot to not have to put in!

Having said all that, it’s still true that it’s hard to find a small house. I have to be able to project-manage a larger building (even if it’s really a smaller project)… and then find people to help me occupy it when it’s done.

That’s not a bad thing… I have discovered, over the past year, that if I don’t have other people to remind me that there is a world beyond my skin, life can get really hard to sustain. I’ve had an awful lot of housemates, despite being fundamentally introverted. Mostly, I’ve been extremely lucky.

Options: Good Properties

There are two kinds of properties that would be good to start with:

1. An abandoned project, with driveway, infrastructure, foundation, septic, etc. already in place. (So far, I find all this puts the build out of reach because the projects that get abandoned aren’t nearly as small as mine.)

2. An old house in the country, but nowhere near a floodplain, with, ideally, a solid foundation and frame, and a roof that isn’t too bad. (I probably need more cash down than I actually have to offer, but I’m thinking about that.)
I would gleefully pounce on either one, given the chance.

Flexibility is the key to turning the impossible into the imp-possible.

Next, the Money

This opening-out of possibilities doesn’t change my financial picture, which was rather bleak to begin with. I’m still a long way from having good options in my price point, and I’d be way better off if I could find someone to pool resources with.

A new possibility begins to open up: an investor.

The main difference between Saturday and today is, I can now talk about a property that could yield income.

For the money I didn’t have for a new build with room to share, I could actually rebuild/renovate a larger house that would be classy, safe, and non-toxic, and rent out half or two thirds of it. We already know there’s a roaringly under-served market for safe, non-toxic housing, so… Is there a downside?

I mean, besides coping with landlord issues. Being a landlord is no walk in the park. I don’t imagine that I have any secret formulas for being better at that than anyone else, but I have to say, I have had many many years of learning to be patient, clear, and effective with some of the most difficult people and intransigent situations outside of the current White House.

I didn’t realize that until I said it, but the more I think about it, the more accurate I see it is!

If the agonizing work and discipline of revising an old house doesn’t scare me, and if 20 years of pain disease and 17 years of growing disability (and all the doctors, insurers, fiscal abuse, and casual cruelty that comes with it) haven’t killed me, is there any reason I should quaver or shrink from managing a multi-unit home?

I don’t take it lightly, but it doesn’t seem like that big a deal to me.

So, if anyone wants to go halvsies with me on the cost of fixing up a charming old house, just let me know! I get a safe home, you get relatively safe income. I know a couple of good real-estate lawyers in the area who could write a nice safe contract for all concerned!

Hey, have I got almost everything dialed in here, or what?

Loan Structures

I hope the two letters from my doctors will open up types of loans that would normally be closed to me; namely, construction loans and renovation loans.

  •  If I found that perfect little lot less than 45 min. from my hospital with all that prep work done and in budget, then a construction loan would be fine!
  •  If I found that perfect “cash buyers only” house less than 45 min. from my hospital and in budget, a renovation loan would be terrific!

I know that I qualify for the USDA rural loan of $90,000. Yes, folks, I’m naming figures. It’s possible that I can access about 33% of that in addition, in cash down. This is what I’ve got to work with.

Chances of success, given my financial and chemical limits, are absolutely miniscule. However, they aren’t exactly zero.

A Bigger Reality Check Than Before

Mom, you’ll definitely want to skip this. If you want something to research, maybe find me a freestanding cabin & a kind maid, somewhere safe & warm, an hour from a good hospital, something culturally interesting in the environment, with rent under $300/month?

Everyone else who’s still with me here … I have to keep trying. Fact is, either I find a safe house, or I put my papers in order and give myself about two years before I wind up drooling in a nursing home or stumbling into traffic. I have no good choices.

I do have a Plan G. Move to a cheaper place. Kansas, San Miguel de Allende, Turkey (where I was born), Portugal, Fiji, Cambodia, Croatia, New Mexico — the possibilities are endless. I’ve moved, and traveled, an awful lot. I know that:

  • It takes a year to figure out where to get what I need as easily and reliably as possible.
  • It takes two years to figure out who to trust in my area: shopkeepers, helpers, neighbors, etc.
  • It takes a minimum of 3 years to make friends, and that’s if they’re already kindred spirits… when I was healthy, and could go out and do things like normal people who want to share experiences and get acquainted. With so little functional time (3 hours daily, and dropping) that’s totally unrealistic.

Am I really up to the job of being that lonely, that vulnerable, and work that hard to meet my needs, for that long? And do I really want to leave the one place on this whole earth that really feels like home?

Of course not. If I’m up against the wall, though, I can’t say my absurdly relentless drive towards life won’t push me to it. At least I’d be warmer… It’s June and in the low 40’s F overnight, which is ridiculous. Climate change is a cuss.

I’m too weak to keep doing this half-assed, “not real safe, but not dead yet” thing for much longer. I’ve lost a lot of ground fast. I feel my resiliency is not gone, though, so I believe I could recover appreciably, given the right home environment.

I’m keenly aware that, in most times, and in most of the world as it is now, I’d have died long ago. I know I’m one of the lucky ones. I’ve mentioned some of my friends who’ve died of this disease, some at home, some in hospice, some on the table, and several because they had no safe place to live. I’m silently terrified. Absolutely terrified. But I don’t have time to dwell on that.

Achieving this goal is not the end, but a change in the game. I have larger things to do, once I’m safely homed.

• I’ve had some ideas, based partly on my journey with this housey biz so far, about how to put together an effective, ultimately self-supporting charity to make affordable housing available to the chem-sensitive, even in emergencies. The realtor, builder, and policy wonks I’ve shared it with all love it, and I think it should happen.

• A dear (and brilliant!) old friend helped me rough out an idea about how to make my health-care guidance available to more spoonies more of the time, without hurting myself further. “Your Guide to the Medical Wilderness” probably should exist.

• There are 2 publishers longing for books I’ve pitched. They’re deliciously informative books and I believe they should be written.

Yes, I’m talking about all the do-goody stuff I want to do. It’s not an act: being able to make a difference for the better in this world is what keeps me going. It’s what I am. It’s why I keep going.

I want to keep going.

I hope that what I need can come together in time. The period it took to pull my fractured brain out of its winter hibernation right as the cops fell asleep at the switch has made this even harder and time more of a problem. Well, here we are, got to work with what I have and not what I wanted or aimed for!

Meanwhile, I’m looking into camping solutions for the summer. I love camping. I need nature like others need wifi; I’ve figured out how to smooth out many of the hardships; and I’m serious like a heart attack about saving the last of my resources for making a home. It’s a terrifying prospect, of course — in fact, homelessness terrifies me speechless, even if it is a great excuse to camp.

Fingers, and tent pegs, crossed.

I keep thinking I should revise this, but my eyes are reloading from cache and my brain is done.

Take care of each other; life is too short to be mean. <3

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Some Kind of Watershed on the Imp-possibility of Safe Housing

Over the past 14 months I’ve gotten a look at every house I found that was:
1. Already built,
2. In my price range & size range (600-900 sq ft),
3. Judging from the ad, might qualify for a first-time homebuyer loan (which I could get, because sailboats don’t count as homes in this context. Considering how much work sailboats are to live on, I think that’s just precious.)

All 4 of them.

In 14 months of sporadic, but persistent, looking… only 4 houses turned up within my parameters.

Well, actually, only 3 were in my parameters. It just looked SO pathetic, I threw in the house I looked at that taught me just how horrific it could be to buy a repo. I don’t know why I felt a need to count that.

So, really, 3 houses. Only 3 even seemed possible, but they weren’t. They turned out to be marginally too fuddup for the loan, too moldy, or too close to too many Isy-toxic things.

Broke my heart.

The Market

In all this time, there were 2 houses I wanted to view that did, in fact, meet all 3 criteria, but they had a buyer and 5 alternates before I even had a chance to reach for the phone. Good, small homes go FAST here! (If anybody’s looking for steady returns on moderate investments, consider building some, eh? I’d be happy to project-manage that business. It’d be a great example of doing well while doing good.)

Double the target size and price point, and I’d have LOADS of options. The market is littered with 1200-2000 sq ft pocket palaces for a quarter to a third of a mil. Those buyers can be as fussy as they please around here.

The Reality Check

Here are some grim financial realities which bring new depth to the yawning chasm of the imp-possibility of me finding a safe home:

1. Frail, reactive body on SSDI.
NOTE: It’s illegal for anyone on SSDI (which normally brings in government-sponsored health care) to have over $2,000 in personal assests (exempting already-owned house and car), ever at all, even for 1 day, or they can stop your health coverage.
You read that right, folks. In the USA, poor and sick/disabled people are brutally barred from saving up, even in the interests of getting a car or home if they don’t already own one. (That was a GOP mandate. How’s that for fiscally responsible? /headdesk/)

2. Only legally-recognized close relatives are allowed to contribute to a mortgage. No matter how well connected the PDSP (Poor Disabled Sick Person; or, if you’re from California, Person who’s Disabled, Sick, and Poor), or how wide and generous their circle of friends, *nobody else* is allowed to contribute, or else the PDSP *gets no loan.*
NOTE: this was nominally an anti-terrorist maneuver, to keep cells from easily acquiring property. Which makes even less sense than most modern American anti-terrorist legislation… ‘cuz somehow the financial data-mining that’s actually been built into your central processing chip since the turn of the millenium, and is now supplemented by every data stream you dip into, is magically unable to track the source of these gifts, in this one realm of financial transactions? Huh?? And somehow it assumes that terrorists can’t find other ways to meet their logistical needs — a counter-factual assumption, at best. I grew up with actual terrorist threats framing our daily lives; this mickey-mouse magical thinking irritates me at the best of times.)

3. First time homebuyers (c.f. the snarkery in the opening paragraphs) get automatically lined up for a loan called FHA, which banks appreciate because the loan is insured by the feds. All houses bought with that kind of loan have to meet certain standards before purchase.
NOTE: this is generally good, as it ensures that first-time homebuyers start out in a code-compliant home. For me, it’s disastrous, because the standards don’t account for occult mold or proximity to fossil fuel output and EM radiation — but they heavily favor fresh paint and conventional insulation, cheap and reasonable ways to meet the code criteria. These amount to life-or-death issues for me.

4. Ordinarily, it’s extremely difficult — in fact, well-nigh impossible — to get a “one mortgage” or build loan, which you can use to buy a lot and have your own home built on it. Too many people have taken the money and run, or gotten overwhelmed by loads of decisions and delays they’re not used to, or lost their way somehow. This leaves unfinished properties dissolving where they stand, and frustrated loan officers doing much the same thing.

Now, when those loans ARE made, payouts are structured to keep the owner one large payout behind. The idea is to make sure the owner has “enough skin in the game”, a metaphor I always hear in this connection, which is peculiarly apt and especially painful for someone with CRPS.

Also, you need a builder on board who is prepared to advocate with the bank. How many builders really want to face a freaking bank just to get a picayune, weird little job like mine?

Also, my builder would have to be someone comfortable enough with low-tox building to help me be rightly understood when I talk about using high-grade materials in what’s otherwise a cheapest-possible design.

The Current Scenario

So, here’s what I bring to the table:

1. Frail, reactive body needing a small home with nonstandard finishes. Have some resources and loads of information.

2. Some relatives are able and willing to contribute, thank heavens and them!

3. Friendly mortgage broker, glad to work with me and guide me in inserting my info into their system in the most fruitful possible way. (Applied Mortgage in Northampton, MA. I recommend them very highly!)

4. Doctors willing to provide letters on letterhead stating that I do, in fact, have demonstrated needs that affect my safest home environment, and it would be good to work with me on that. (If only their fax machines worked.)

5. Info and analysis by the bucketload, which only needs to be extracted from my brain and the web and dumped out into tables, spreadsheets, breakdowns, overviews, digests, summaries, etc., about just what’s needed and just why it matters and what it really does to me when it doesn’t happen right. With references and bibiliographies for key concepts and key resources. In colors and patterns that are meaningfully coded to the info. In as many copies as they like. In origami folds, if that would help. Tied up in a neat little ribbon — green, as a hint. Sound good?

Of course, given 3 functional hours each day, putting that together is so much easier than it sounds… NOT. If I don’t go out and run errands or appointments, or eat anything the least bit wrong, get only a short walk in as exercise, my voice recognition software has no trouble with my allergy-hoarse voice, and I take 20 minute breaks every 30 minutes absolutely faithfully, I can try to eke that out to as much as 5 productive hours per day!

Who knows, it might happen!

Sysiphus was an amateur.

Because, folks, poor though I am, tiny and unprofitable though my mortgage would be, simple as my other needs are.. there is NOBODY ALIVE who could have more skin in this game than me. And I need the chance to prove that to the bank.

More and more lately, I miss my Dad. I don’t know what he would have done or what he would have taught me in the process, but if he were alive, I would be safely housed. “Legitimate need? Doing your best? Got a rational budget? Okay, let’s figure this out.”

He was very staunch about facing hard realities and, working capitalist though he was, had many thoughtful conversations with his daughter about “from each according to his ability, to each according to his need.”

According to him, he loved that idea.

It was his favorite dictum about distributing resources, and he dearly wished it were realistic on larger economic scales. He worked in a world where it wasn’t useful, but he clearly wanted me to know that he honored it as an ethical guide.

He articulated to me how he used it as a parenting tool with his three gifted, demanding, and wildly different children. He said he’d never parent me the way he parented Older Brother, and Younger Brother was yet another proposition; he tried daily to treat each of us according to what he understood of what we each had, and what we each needed. He knew his perceptions weren’t perfect, and so it was a constant process to keep trying to improve his insight, as he kept trying to keep up with our development.

He explained all that nuance, admitted all that depth of thought and his practical limits, to his 11-to-13-year-old girl… in the late 1970’s. In some ways, he was way ahead of his time.

Through all the stormy years we had afterwards, I never forgot that, at root, he had that much faith in my mind and that much trust in my morals.

He’d be so proud of my diligence in all this.

Now, all I need is a reputable builder who’s up for this job, and enough working-brain-time to put all this medical and practical material together — preferably in the next week, due to the timing of the hard credit-check.

Neither is really in reach, but I’m here to keep trying. Wish me success!

Bonus Points

If I can get this done this summer, and recuperate in a safe home for awhile, then I’d like to put together a plan to make small safe homes all over these hills; I know people who can find the funding, and I know customers who’d be banging our doors down. It’s just that I can’t properly or legally use that program for my own benefit, so I must have my own home first.

Tell you what, I bet the whole process could be neatly documented and charmingly presented in an attractive book on the subject. It’d be one blueprint for a win-win way to help stabilize local neighborhoods, reduce blight, mitigate housing crises, generate middle-class jobs, stabilize local economies, reduce medical costs, and make many people more calm and content. All of which is economically positive in so many ways… and morally spotless.

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Interim choices

After my head exploded last month, it took awhile to recover. It wasn’t happening while I was up to my eyeballs in what I can’t do and can’t change, even with daily Epsom baths and extra antioxidants. So, I visited Mom for a bit, soaked myself in her hugs and books and art and homey-exotic collections of interior dec from my upbringing and her subsequent travels, had lunch with my cousin (who did an outstanding job of mental chiropracty on my crippled thinking), and came home almost ready to face my current world.

Which looks something like this:

  • Approaching the hard deadline for leaving my rented home.
  • Lump of expensive metal sitting in my driveway, not driveable.
  • Housemate & ex-fiance (who asked me to marry him for 5 years, until I said yes, then refused to set a date) who really truly simply can’t choose a life-ward path but is increasingly obsessed with orchestrating his end… with frustratingly irrational obliviousness that that’s what it is. I could write a book about this — it’d make a fascinating novel — but confidentiality forbids.
  • Understanding that, after 7 eventful years together during which we’ve saved each other’s lives more than once, that’s not the choice I make every day I rise up against my own pain etc,, but HIS path is not MY choice to make.

Okay, bluntly, that’s:

  • No safe-enough home.
  • No working car.
  • Newly “divorced.”
  • Expecting to be imminently widowed.
  • Helpless in the face of most of this.

And this is where I tune into the meditative practices, because there’s a way I’ve learned to breathe that lifts my heart and brings me into life, no matter what. Helps me let go of the need to care FOR someone as much as I care ABOUT them. Releases him and his future to the care of the cosmos, which is a lot bigger than me, and has a different perspective on life.

I have to get back to writing perky posts! I have to live with this heavy stuff, but it doesn’t usually set the tone of my being. I can’t allow despair more than a look-in, so I’ve learned what it takes not to.

…Breeeeeathe…

It’s probably needless to say that I prefer to stay on the kindest terms possible. Keeping my connections pleasant is hugely important in managing the underlying chaos of my system, so my nerves have less to be jangled by. One of my personal mantras is: Someone else’s bad behavior is not an excuse for mine. Sounds rigid, but it works well in the service of my larger strategy of keeping my system on a more even keel.

Here’s where I huff on my nails and buff them on my nonexistent lapel: I stopped 4 efforts to start an argument in 20 minutes yesterday, and I only pulled one of my old habits of “managing” his tortured thinking 3 times throughout the day. Just letting it all go. He is his, warts and all. Only he (I think) will have to face his consequences.

I also found a couple of possibly-soft-enough-ride cars I should be able to afford, with a bank loan. Just need to arrange the ride to check them out.

Here’s a little cherry on top of the hopefully-expanding sundae of possibilities: the ugly and ill-considered business choices made by the dealership who sold me that expensive hunk of metal, can be addressed by filing online (no car trip! No need to collect and print my documentation & evidence ahead of time! No repeat visits!) with the state’s Consumer Protection department. PHEW! I’m happy to let the authorities tackle this while I deal with my present needs.

Life is short; keep it kind. Be good to each other.

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3rd panel of triptych: The action of deciding

This is the third panel of the triptych. It took awhile to write. You’ll see why soon.

First panel: my pre-CRPS decision mechanism broke, but look! There’s a hack for that! Using remaining fragments, bubble gum & baling-wire, and lots of patience, I can still stagger through even fairly complex decisions.

Second panel: Speaking of complex decisions, I’m looking for a home that meets my physical needs and my financial limitations. Turns out, there is no such thing… Yet. Crossing every available digit and getting really creative.

Now: I’ve been mulling the origin of the act of deciding. When does that happen? It goes by so fast sometimes, I find myself dancing on a spinning log of results before being aware of stepping onto it.

It’s my nature to leap to a decision and be told I’m going off half-cocked, but what I’m doing is processing huge amounts of information very quickly at a largely subconscious or pre-conscious level. I can haul out all the arguments pro and con on no notice, if anyone wants to hear them.

At least, I used to. It’s CRPS’s nature to pour a whole lot of crude-oil over everything between my ears, so things just don’t happen that fast in there any more, and the gears are more likely to slip and chatter. So, I go through a more iterative process and take much more time. If I could adjust my expectations of myself accordingly, I’d be all set…

At the moment, I’m viewing the action of choice with great intensity. I’m convinced that decisions are especially difficult, especially fraught, and especially crucial, for people with CRPS. (Not that this is a competition. If what you read fits, just circle it and write, “me too.”)

Layers of decision-ing:
Conscious vs. Unconscious

So much happens at the unconscious level before we even are aware of having a choice, that it’s impossible to discuss a mental action like choosing without acknowledging some of the most important barriers to thinking clearly in the first place. These are factors that many spoonies (and all CRPSers) have to live with and figure out how to handle, or decide not to handle and just be driven by them instead. (The enormous initiative required to deal with them is overwhelming, so I gently suggest being tolerant of those who don’t, or feel that they can’t, circumvent the circus acts desribed below.)

  • PAIN: Acts on the most primitive brain, and the primitive brain can’t think past the moment. Not its job.
    • Takes a good set of pain-management tips and tools to nudge the primitive brain to the back of the car, so reason can drive.
  • FEAR: Fear hijacks the amygdala and activates the fight-or-flight syndrome. Hijacked amygdalas distort the brain’s function even further, and the fight-or-flight response further destabilizes the already-wobbly central nervous system.
    • This is a one-two punch for CRPSers. It takes a lot of training and practice to work around that, but it usually can be done.
  • The MONSTER: know thy (current) self. Those of us with horrifying illnesses sometimes feel and seem like we’re taken over by some horrible, biting, unpleasant person who looks and sounds a lot like us, but doesn’t act like we normally intend to. This is tough all around. I find myself being emotionally hijacked — say, by a food allergy response, or a surprise pain flare — and, as I’m sitting there with tears of rage and fear pouring down my face and snarling, inside I’m going, “What the hell is going on? Why can’t I stop this??” It’s The Monster, and it’s off the leash.
    • Because I self-monitor so much, I can usually catch The Monster before things go too far, and I sequester myself (that is, I hide) and do distraction/self-care/Epsom baths/whatever until I’m back in charge as (& of) myself.

Bases for decisions: Information — & Certainty

When is the info in hand enough — both in quantity and quality — to base a decision on? (This is where I really miss those old rapid-processing days.) More fundamentally, how can I tell? Because determining and sorting the value of info is yet another, even higher-order level of processing than collecting it!

Having to make choices based on inadequate, unreliable, or unknown-quality info is a far more common task post-CRPS than pre-CRPS. Stumbling around in the dark and guessing, hoping for the best or maybe for the kindness of strangers, is not yet a default, but it sure is more common.

At some level — probably that mile-high view that my “wise self” hangs onto, whether or not it’s talking to me at the moment — it’s funny to see a super-clever type A whizz kid with delusions of promotion, like I used to be, stumbling around in the dark here. There’s a poetic justice to that, um, adjustment that even I can see. My darker side, perhaps, which I usually inflict only on myself.

“There’s always an afterwards”:
Sequelae & Consequences

Reality doesn’t care what drives my decisions; the “afterwards” I face is going to be what it’s going to be, and derive largely from the choices I make — not the ones I wanted to make, or was unable to make, or wished I could have made. They stem directly from the choice I did make, consciously or not, emotionally or not, rationally or not, wisely or not. It takes, again, a lot of practice and some basic training to keep in mind that there will be an afterwards, and force myself to make the decision that results in a better afterwards — even if it’s less satisfying at the time.

The increasing intransigence of reality is really annoying! Can’t it work with me a little more? Sigh.

The older, poorer, and sicker I get, the less flexible the world around me gets. Being young and perky was all kinds of help — I had no idea!

everyone over 50

I distinguish sequelae (|suh-quell’-eye|) from consequences like this:

  • Sequelae are natural results of something. They may or may not be a problem, may or may not need managing, but they’re just what happens as a result of factors we don’t necessarily control.
  • Consequences are results that must be dealt with somehow. Assessing consequences is part of rational decision-making. Who could be hurt? What might it cost? What kind of damage, or benefit, could happen? They’re predictable, if we stop and think things through properly. So, there’s a level of responsibility involved.

We RISK possible sequelae. We FACE possible consequences.

Too much decision-ing:
What About Control Issues?

In the category of bottomless dopamine sinks…

Trying to control too much of my environment is a total waste of effort. It soaks up decision-making chemistry, burns through my attention like a bonfire, and creates a lot more anxiety for absolutely zero net benefit.

People who knew (or dated) me in my 20’s quirk up one corner of the mouth a lot these days. I’m happy to let anyone decide anything for me — as long as it doesn’t do any further harm. My emotional investment in things like where to meet or what to eat, interior decor, stylistic choices, what others should do — pretty much nil.

My emotional investment in being in control is tightly centered on protecting my immune and nervous systems. That’s about it. Anything that meets those (admittedly, enormous & far-reaching) criteria and then looks for something more from me gets a big, airy, sky-bright “whatever!”

I realized that control issues were really a type of anxiety. I have my past traumas, like most, and loads of current problems which are terrifying to contemplate, so it’s reasonable to be anxious. Not helpful, though. Anxiety stalls my brain out completely.

This ratfink disease forces me to choose consciously — and learn to enforce skillfully — what to let myself worry about. It’s one of the great lessons of learning to live with this disease. Speaking as someone who started out being mildly thrilled by emergencies and wound up, at my nadir, being unable to get out of my home and onto a bus because of long-legged terror looming and lunging at me, I’m the first to say that managing anxiety is a journey, a process, any of those things that won’t be completed in my life because it now is part of my life.

This is why I now meditate twice a day. I was mulling, about a month ago, how much harder it was to keep my temper or keep my brain ticking over at a functional rate. The Dalai Lama’s dictum came to mind: “Meditate for half an hour every day. Oh, you don’t have time to meditate for half an hour every day? Meditate for an HOUR every day!”

I’d gotten to the point where an hour before bedtime was not cutting it any more. Figuring the Dalai Lama has never steered me wrong so far, I added another hour (or so) of meditation, after my morning pills go down.

I retest that now and then, but sure enough, if I don’t have time to meditate for the morning hour, everything takes longer and everything gets worse. If I do take that extra hour, I’m a lot clearer and my rate of being able to get things done — and to know, moment by moment, what I’m most able to do as my “glasses” change — surges up to a new normal. I’d like to get used to that — but never take it for granted!

Counter-intuitive, to say the least, but I care more about what works than about what I understand or believe.

Now, back to wrestling with reality to create possibilities that don’t currently exist… No hurry, though — doing the impossible usually takes more effort; might as well do it right the first time.

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