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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Decisions 2 – housing

Making a major decision, for someone with so little margin for error as a ragged, underfunded, spoony crip like me, means being able to answer all of these questions usefully:

  • What are ordinary needs and requirements, in this situation?
  • What are my particular needs and requirements they create?
  • What’s involved in an adequate trade-off?
  • What does success look like?
  • Are there any choices that meet my needs?
    If so…
  • What are the usual pitfalls?
  • What are my particular pitfalls?
  • How do I avoid or mitigate those?
  • How do I make this decision happen?
  • Red light signals and how to respond.
  • Yellow light signals and how to respond.
  • Gotchas and how to handle them.

So here I am, bringing my laborious and slow-motion decision-making process to finding a home I can afford and survive. Definitely a major decision.

This could be fun. Or gruesome. I’ll find out.

Let’s take a look at this through the decision-making stages I discussed in the previous article.

Developing good info about the problem to be solved

Housing is a crucial human need, especially beyond the 35th parallels.

Hang on, I need to come back. Everything went white for a minute there. (PTSD about facing homelessness and surviving criminally unsafe living situations? Who, me? Yup.)

The need has been around as long as we have, so the laws and practices are pretty predictable.

There are two normal fiscal options: renting and buying. There is one additional option available to residents of Vermont: buy the house from the state, which keeps the land but gives you the right to use the part your house is standing on.

There are three normal physical options: freestanding home, adjoined units (apartments, condos, townhomes/row-houses, etc.), or portable housing (mobile homes and travel trailers.)

Nonstandard options include buying an RV (made and insulated entirely with Isy-toxic materials) and living with a level of mobility and uncertainty I can’t even contemplate any more; or buying a boat (a.k.a. a mold factory) and living on that, which I can no longer afford in any way. I have to eschew them both.

Adult co-housing is a nonstandard option that has some appeal. A group of adults get together, develop a set of guidelines that (through a real-estate attorney) turn into a contract, find and buy a place together, and arrange themselves on the property according to their contract.

I’ve seen that go very well and I’ve seen that go very poorly, and quite a lot in the middle. It’s partly a matter of chemistry, but mostly a matter of writing a good, clear, solid contract and everyone agreeing to play by the rules and being able to live and let live.

All I need is a group of adults who are not only willing and wanting to do that, but have no toxic habits (like painting or baking), are willing to live gluten-free (except for cold food brought in from outside) and are willing and able to give up wifi and live off of hard-wired internet access only — no Bluetooth — and, most annoyingly, respect hard limits on how much time the cable box is on. Radiation off that thing gives me unconquerable insomnia in the other room from 30 feet away.

Let’s look at how the remaining options fit into the questions I need to answer.

What are ordinary needs and requirements, in this situation (home-hunting)?

Safe, dry, warm, with working doors/windows/plumbing/electrics; close enough to where the person needs to be.

Also, it has to be affordable.

What are my particular needs, and the requirements they create?

  • Mold free living, in this green land of upland lakes, swamps, and ubiquitous streams.
  • No petroleum-based volatile organic compounds — a category which includes regular paint, all low-cost and most mid-range flooring, and every conceivable kind of carpet.
  • Significant air pollution. For me, this centers around internal combustion engines, chemical processing, and fossil fuels. (For others, it’s woodsmoke that smells like doom.)
  • Loud noises and the vibrations that come with them. (You know how the nearest bully used to sneak up behind you, and then smack their palms over both your ears at once? Remember that feeling that your head just exploded, and hot shards jinked down your spine? Kind of like that, times about 1000. A vacuum cleaner suddenly turning on can knock me down. I used to live near railroad tracks; not an option now.)
  • Radiation of many kinds. This rules out being near power stations, overhead wires, hands-free phone technology (Bluetooth or cordless house phones) and (this is really limiting:) modern wireless signals, which feel like a blunt spear piercing me just below my xyphoid process and spinning barbed tails through my trunk while injecting molten metal up my spine and into my brain.

So much fun.

Believe it or not, after hearing part or all of this list, I’ve had people ask me, “How do you know that you need to avoid all that?” It’s not the words, it’s the tone. The implication is that all of this is somehow the product of a fevered imagination. If only it were!

I notice my responses, which are not subtle from the inside; I work out what particular exposure caused that response; and, intentionally or not, I get multiple exposures to each of these things because they’re everywhere, so I can test out the theory that a particular exposure causes a particular response.

It takes a special kind of person to go to the extraordinary effort to research substances that affect fragile systems and how, and claim to be that ill and be required to make all those compromises and spend all that money to avoid those materials, and give up so much because of it, without actually having their survival depend on it. That particular mental disorder is extremely rare — a lot rarer than invisible illnesses. Anyway, it’s one thing I definitely don’t have.

Examining the options

Rent or buy?

Good question. Let’s look at those from my point of view.

Renting

Rent tends to cost, month per month, about twice what home ownership does around here, even with all the taxes and fees figured in. Boggles my mind, but there it is. (Homeownership has loads of hidden expenses, but rarely do they double the cost month after month.)

Rentals are supposed to get repainted every two years or between each tenant, whichever is longer. That really sucks for me, because even low VOC paint makes me sick, goofy, nauseous, edgy, and unhappy for weeks.

The majority of rental units have carpeting, mostly cheap carpeting consisting mostly of petroleum derivatives, aggressively outgassing toxins all their lives while harboring mold and less savory things beyond the reach of steam cleaners.

Rental units in my price range are in high density housing (meaning there’s normally pollution, Wi-Fi, and noise completely beyond my control), and every single one that I’ve looked at has a mold issue – a solid, interlaminar set of colonies, usually in the kitchen and bathroom, often in the bedrooms, and if they’re in the bedrooms, they’re in the living rooms as well.

So much wrong.

In any case, unless I can find low income, high density living with non-toxic interior furnishings, nontoxic finishes, hardwood floors, no mold, good air, no pollution and no street noise (which would be fantastic for all concerned!), where all my neighbors have no power tools, dulcet voices, and no interest in using their cell phones every hour of every day (yeah, right), then… I probably have to think in terms of a freestanding house.

From the practical standpoint of having people to say hi to and help shoveling the stairs and the like, I would love to have close neighbors! It’s just that I need not to put myself in a position to be poisoned and tortured by regular people simply living their lives.

Buying

What with one thing and another, I realized a year and a half ago that I would have to focus on a freestanding house – despite all the upfront cost and work involved in that. It’s kind of like jumping off the deep end, an especially apt metaphor for a lifelong skin-diver, deep-water sailor, and former live-aboard “grotty yachtie” like me.

I’ve always had a pretty good instinct for real estate, which annoyed my father more than once – he kept ignoring my advice. The prices here only bobbled, they didn’t bubble; the overall trend has been gradually, consistently, steadily upward for a century or more.

This IS a region where it’s a good investment.

Buying requires good credit, but after LINK some work and time, that’s not a problem.

First-time homebuyers and low-income home buyers have special government programs that make it possible for them to get loans from banks by insuring those loans with the feds. Of course, the federal government has to be working for that to happen. (That could happen any month now. Maybe within a year?)

All I want is a clean, dry, safe-for-me 600-800 square-foot house on a couple acres of buffer zone for ~$135k inclusive, somewhere in the area of Easthampton to Heath to Montague to North Hadley, on a paved quiet road.

This is a reasonable price for a reasonable proposition. However, in two years of looking, it hasn’t turned up.

But I’ll show you what has turned up:

Century floodplain houses

How do you spell “moldfest”? It’s actually called “Sick Building Syndrome”, but either way, there’s a reason these places are cheap and still on the market.
[The century floodplain houses]

Foreclosures
First-time homebuyer loans will not cover these, nor should they. Foreclosures are the ultimate black-box proposition — you have no idea what’s in there, but a few observations and questions have taught me to interpret clues. I won’t bother you with photos, because these have since gone off the market and I’m not researching foreclosures any further:

  • Great little house in a gorgeous spot… with a cracked foundation — I mean a busted-right-open-and-let-the-critters-in foundation.
  • Current tenant dropped not one, but two trees across the driveway. Is that a hint? I was curiously disinclined to investigate.
  • The house has stood empty for over a year, and because of that, any characteristics that weren’t up to modern code are no longer grandfathered, but have to be corrected before moving in. This seems to add 30-120% to the effective price, and in one case I looked at, would have cost 3 times the purchase price just to turn it into a code-compliant property.
  • Extensive plumbing work is often required: in one case, the well went bad; in another, the septic system was toast; in many foreclosures, the sinks and toilets are smashed apart to discourage squatters — and add enormously to the repairs required of pipes, flooring, and walls affected, not to mention the porcelain.

[Several examples of what’s in my price range, with wry commentary]

[The total reno, with the great bones] I love this. I would LOVE to get my hands on this. Sadly, I’m now a formerly handy person. Holding the tools required, let alone breathing the dust and fumes involved, are sot even to be thought of. Breaks my heart, darn it! This would have been so much fun!

My needs and wants are very reasonable, but apparently, a place that embodies them doesn’t already exist.

It’s horrifying to contemplate, but I have to think about building my own. There are so many issues, both physical and fiscal, that it simply boggles the mind. Just to start with, how is a first time, low income home buyer going to qualify for a building loan, even where there is so much documentation regarding these special needs?

I’ve spoken at length with builders specializing in non-toxic homes, one company’s owners giving me what amounted to a three-hour workshop in materials, gotchas, and things to know and watch out for in regard to renovation and building. It doesn’t have to be much costlier, but it requires an enormous amount of project management on my part to keep costs down by researching and sourcing used or overstock fixtures and fittings, hardwood flooring, non-toxic and natural finishes (some of which I worked out how to use on my boat), and so forth.

I’ve come up with a couple of novel ways to simplify plumbing and electrics, which are in compliance with the current building codes. (The electrician and builders I’ve mentioned it to are intrigued and plan to keep my ideas in mind for the future. I find that encouraging.) That’s one way I’ve brought down some projected costs, although it depends on my being able to do certain physical work.

I’ve also researched the toxins, materials, labor, permitting, and costs involved in prefab vs. stick built (traditional) vs. log building here.

What I’ve learned about heating methods (toxicity, mold, fuels, weaknesses, etc.) would bore you to tears. I just have two words: steam heat.

While I have always imagined/dreamed of living in a hexagonal stick built house with lots of windows and two small wings, it turns out my family have always imagined I’d wind up in a little log cabin. It looks like they might be right.

What’s involved in an adequate trade-off?

I have to know where I can be flexible. This wiggle-room could make the difference between having a rational home and spinning off the face of the earth. (Two people who couldn’t find a home in time were found frozen to death yesterday. I’m trying not to think about that.)

There’s a little bit of slack in my needs, but not much.

Radiation (from heavy electrics, heavy electronics, cell phone towers too close, and wi-fi) is a no go.

VOCs that can be washed off, treated with pine and baking soda, or aired out in a few days would be fine.

Treatable mold would be fine, but, unfortunately, by the time it shows, there’s usually a well-established root system inside the wall and mitigation becomes the sort of iterative, messy, relentless, and ultimately unresolved nightmare that usually takes three scream queens and gallons of artificial blood to get across on the silver screen; respiratory struggles, immune failure and mental impairment aren’t nearly as dramatic on the outside as they are on the inside.

What does success look like?

I could be really flippant and say that success looks like an added hundred thousand dollars free and clear in my mortgage account. That would definitely put me in a price bracket that would allow me to have my log cabin, with the right fittings and finishes, in a safe clean area, with everything I need and nothing I don’t. Plus…

I used to dream of having a big enough property to put additional cabins on, and provide safe non-toxic living for friends who like small spaces, and maybe some glamping spots for the summer. I’ve already got 2 friends who’d love to sign that lease as of yesterday, and 3 more who’d love to think about it, and that all turned up in 2 conversations. There is clearly a market for safe, small, inexpensive housing, and it would be a good, benevolent, and sound investment. However, the start-up costs (more buildings, more slabs, more plumbing, more septic, etc.) are unthinkable for me. I just don’t have that.

This is where being poor is super frustrating. (Yes, I really do think this way … I’m more frustrated that I can’t help others than I am that finding a place for my own self is so hard.) I could so easily provide safe and sane housing for people who, like me, are fighting their environments all the time, and who would, if they could, much rather be using their energy to contribute to the world. And helping pay my mortgage. There is no downside.

There is no money for it, either.

Okay, onward.

What does success look like?

It looks manageably small, manageably affordable (or self-supporting — hello, cabins!), safe, clean, healthy, nontoxic, and warm.

I have a lot to do, and a lifespan truncated by probably 25-30 years. I’m genetically wired for my 90s, if I don’t smoke, which I don’t. So I’d better hustle!

In order to do my work (write my books, produce my pain-mitigating products, do live trainings on handling chronic pain and disability at home and at work, etc.) I need a home that doesn’t make things worse; Time alone will do that. It doesn’t need any more help from my living environment.

My success path is very, very narrow. I’m still not sure how to get there, but I have a few more interviews with specialist professionals ahead of me.

Are there any choices that meet my needs?

According to two years of market research, there is nothing already built that meets my needs in my price range.

I might have to make it myself, whether I like it or not, whether it’s easy (which it was never going to be) or not, whether there is any standard path to get me there, or whether I have to forge ahead and work the steps out one by one, going purely by what works for me – as I did with CRPS for so long, before clinical practice caught up with what I was doing.

I’m a very reasonable person. I’m just in a very unreasonable situation.

…Again.

I’m almost used to it. Sigh.

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Fifty One

Guess what? Everything’s up in the air, except me. But don’t worry, it’ll work out.

And that, folks, is how you know I’m back in the saddle. I’m not naturally a nervous person, but the years of system and systematic abuse on top of the fried central nervous system left me very nervous indeed. Every uncertainty was like a set of razor-wire boleadoras, ready to spin out and knock me over and tear me up.

line print of gaucho from the 1800s riding a horse after ostriches, swinging 3 stones tied together, a set of boleadores, to tangle the ostrich in.

Ghastly image, but very apt, as some of you know from your own experiences!

Of course, this slice of recovery is just well begun, not done. I’m simply able to reflect on possible futures without melting down reflexively. I’ll still have bad moments, bad days… and they will pass.

After all, there’s always an afterwards.

So, I’m 51 today, and I can honestly say I didn’t expect to see this day. You’d think my 50th would have been more reflective, but no, this one is.

I realized I’ve been blogging for 8 years, maybe 9. The first year and a half were justly lost in a Google flail, in the early part of the Pit Years. They were online journals, not blogs; the point of blogging is not to rip my skin off for reader amusement or “inspiration porn”, but to trace one path through the thickets we all have to travel, and trade ideas that help others find their own paths, or at least make them more bearable. (Tip of the hat to the friend of my youth who had the integrity to tell me she didn’t want to read my diary.) I’m more grateful for my readers, in all your kindness and struggles and brilliance and care, than words can ever say.

51 is starting with a bang, or rather continuing the same bangishness that has characterized this year so far.

I’ve found out I don’t currently have gall bladder disease, detectable spleen or pancreatic disease, or any form of cancer growing in my gut, just some “mild” gastritis. This leaves the question of what’s causing the rather extensive GI issues open for further inquiry. I’m going to see if I have mycotoxicity, which is looking very probable indeed, going on reactions and the fact that even the weirdest symptoms on that list are mine; going to find out if my body is able to respond well to a massage intensive (twice weekly for some months) or not; going to finish the final house repairs (as soon as the weather warms up long enough to let us not only recover from the cold but then get past the setting-up); and going to find out where we’ll go next, when the lovely house we’re living in sells. (My credit will age out of the worst black mark next year, so getting a house loan is simply a matter of time, with ongoing diligence. Not to mention knowing where to land.)

I’ve been reflecting on J’s unique mix of gentleness, brusqueness, flexibility, and intransigence, and realized how much he helps me in nearly every phase of his personality. (To misquote a capable yenta I knew, the holes in his head fit the bumps in mine, and vice versa.) I wondered how much further I could have come if he’d been there when I first got sick, or before I got sick. What great work I could have done.

Then I remembered, oh yeah, my ego was very much in the way — as that egotistical sentence pretty well indicates (what about your partner’s work, eh, Isy?) We would have loathed each other on sight, as both of us were cocky little jerks back then. It took losing everything that I thought defined “me” and “my life” to realize what really matters in a person — and in life.

I learned that love isn’t my driving force, it’s the anodyne that makes living bearable; curiosity is the characteristic that drove me out of the grave. I never would have guessed at the pure slingshot force of it.

So, though I don’t think I’ll see another 51 years, I can see that I might be wrong about that too. I’ll start heading that way now. I’ve got good company, outstanding friends (some of whom I’m related to), and interesting things to do. Onward.

May the future be worth the trouble of getting to it!

Panoramic view of Road Town harbor in the tropics
H’mm… that looks good!

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The third toughest job

While I’ve been absent from the blogosphere, I’ve been pushing the rock of life further uphill. I’m cautiously optimisitc about getting it to the top and watching at least this particular tedious weight roll off in a new direction, eventually.

Being safe, having survival assured, and being surrounded by loving and trustworthy people was the biggest part of it. For the tools that I can control, it was just what your grandma probably advocated: eating good food, drinking good water, and getting fresh air with a bit more exercise than I really wanted to go for.

Food:
With neuro disease, our bodies need more nutrition than our diets can possibly provide (especially when our guts don’t want any), but our supplements go down a lot better and get absorbed much more usefully if we eat well. I used lots of wild blueberries (dense little packets of brain-repairing anthocyanin antioxidants, yum!), a variety of hard cheeses (2-year-old cheddar, 15 month manchego, and 1 yr English goat cheddar, in my case) for the brain-boosting natural phenylalanine, and fresh leafy veg as close to every single day as the two of us could manage, because they are so good for everything.

Water:
We have artesian well water. It. Is. Outstanding.

Air & Activity:
I asked J to nudge me into getting some exercise every day, if I didn’t get onto it myself. That’s easy for him, because he too likes to get out and get into the open air. On bad days, I hold his arm and go anyway. On really bad days, I go slowly. But I get out, walk on the burning coals under my feet, and keep walking out until my feet stop spasming, then walk back. Sometimes that’s over a mile, but the thing is, I find that if I walk long enough, with enough breaks and the right footwear, I can knock back the pain and spasms — not to mention the frame of mind that tends to go with them — well enough to brighten up the whole day.

So.. I can think! Amazingly often!

I wrote a BUDGET last week!!!

It wasn’t entirely in the right direction, but I figured out how to stay (just barely) in the black. BRAINWORK FTW!

So, with that incredibly awkward seque, here’s the hot issue.

It’s a topic that is all too pressing a reality for people who’ve had their butts handed to them by a disability that affected their ability to work, and then destroyed their means of making a living:

Credit repair.

That’s right, ladies and gentlebeings, I am tackling the third toughest issue (right after 1. survival and 2. getting responsible doctors): 3. working through the PTSD, ADD, anxiety, brain fog, and intermittent dyscalculia which this brain disease and its financial consequences have caused, in order to get my credit rating back in the black.

I have barely been able to look at a spreadsheet for years, due to the numbers dancing around like a hallucination. Dada via Josephine Baker. Just unmanageable. But I can look at one almost every day now, and it’s amazing how easy it can be to push those numbers around intentionally!

I’m glad to be able to take this up. More on it later, with numbers to call and strategies to take for rational results.

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Your normal is my catatonic

On top of my careful eating and constant self-policing… I’ve cut my online time to the bone, to conserve neurotransmitters and wear and tear on my telomeres.
 
I’m moving to a sunnier flat, to improve vitamin D uptake and exposure to beneficial UV bands.
 
I’ve gotten a cat, to lower my bp and help stabilize my diurnal cycle. (They get stirred up and worried when you stay up past your bedtime. It’s the cutest form of nagging ever.)
 
I’m doing my autogenic exercises as often as I can bear to, to bring my baseline level of overdrive down and begin to approach “normal”.
 
For better or worse, I’m getting more closely in touch with what a “normal” state of relaxation really feels like — and realizing how far from “normal” it is for me.
 
If I am as close to “normally” relaxed (or “normally” tense — its the same thing) as I can get, I’m nonfunctional.
 
All I can do is lie there, bathed in the peaceful antitoxins of adequate tissue perfusion and a still mind. Getting up requires dropping that calm, because there just isn’t enough energy there.
 
I’m far, far too tired to function as a normal person. My very cells are tired — I can feel it when I let down this chemical structure of overdrive and tension. Their very organelles are tired. The vacuoles, I bet, are tired.
 
Why? I mean, weariness is all very well,  but isn’t this a little ridiculous?
 
Ridiculous it may be, but not irrational or inappropriate. Here’s why, as far as I’ve thought it through.
 
– For one thing, pain is exhausting. An hour of pain is as wearying as an hour of running, but without the cardiovascular benefit or endorphins. Quite the opposite. And it never really stops.
 
– Moving the body with degraded muscles is hard work.
 
– Making decisions and doing the business of life (rent, bills, laundry, shopping) with a brain that flickers on and off… requires a lot of repeated trips and extra effort — also tiring.
 
– Remember that list of JCAHO-rated crises I mentioned on my last post? That was a sample from the latest in a series of years, each of which was about as harrowingly difficult, in different ways. Truly, I had no idea that so many ghastly things, most far too protracted for Hollywood to use in even their most grueling work, could grind through one measly life.
 
So maybe I should give my weariness some credit. Maybe I should stop bitching about how I just can’t get things done. Now that I’m trying to ratchet my ANS responses down from the stratosphere, maybe I shouldn’t wonder that it’s becoming hellishly difficult to get off the couch most of the time.
Maybe I should stop obsessing on my characteristic need to be productive.
 
Maybe it’s finally time to stop ignoring the fact that I’m really damn TIRED, and put my attention on getting more rest.
 
That might be the most productive thing I could do.
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Changing the glass, resetting limits

I have to resurrect a set of rules I thought I’d gotten past:
 
– No internet before noon.
– No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs.
– This includes surfing on the phone.
 
I will be moving upstairs to a brighter apartment that’s arranged better for two. J still plans to move in come September, so I’m grabbing the opportunity while it’s there.
 
For the past several months I’ve been learning to notice and deal constructively with signals from body and brain. Part of the reality of this is, there’s a ton of backlog to sort out.
 
This is significant, partly due to CRPS and partly to the nature of last year, which was an ongoing festival of upheaval:
 
– Got SSDI.
– Had to save life of same friend twice in three months.
– Sold my boat/home.
– Moved 3 times.
– Travelled for 6 months at a stretch.
– Started an important romantic relationship.
– Had 2 serious threats hanging over my own life.
 
It’s not good for the ANS, all this excitement.  I’m not personally opposed to eventfulness, it’s just really hard on my regulatory systems. Given similar situations, I’d probably have to do similar things, but it’s time to chill the h#11 out now.
 
I’m moving and it makes my lizard brain howl — if lizards can howl.
 
I’m moving upstairs,  not far at all. And it’ll be safer — you can’t even find it from the road. It’ll be brighter and quieter. The paint scheme is far more cheery and pleasant.
 
But I’m moving, and at some level, that’s an absolute… That is, an absolute brain-fogging mess of suppressed fight-or-flight response and irrational despair. It’s seriously altering how well and how long I can think… changing the water level in my current glass, so to speak.
 
Packing my few things is not a physically imposing task,  but moving at all is a brain-crippling one, apparently.
 
I still have to maintain my care schedule, keep appointments and stay caught up (-ish) on laundry and groceries, none of which is optional.
 
When my adrenals are under stress, my brain gets quickly exhausted, especially in the morning. According to my old acupuncturist, that’s a classic diagnostic indicator. Cognition is linked to adrenal function, he says.
 
The thing to do is go with it, and not make decisions or try to parse communications until the whole system has had a chance to wake up and get moving. Thoroughly.
 
So, out of respect for my brain’s needs, I’ll be spending my mornings playing with the kitten and catching up on my bookshelves, instead of being online.
 
Oh gee, isn’t that tough 🙂
 
And when I’ve moved in and gotten the new place under control, with no intention of moving again until I’ve got a “forever home” to go to, I’ll find out just how resilient this brain really is and see what parameters make sense then.
 
Until then, the online world will go on with, at most, 2 hours a day of attention from me — for research, social networking, web page managing,  and posting & illustrating blogs.
 
We’ll manage just fine.
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Moving is hard anyway

Intermittently, this page is getting redirected (the Back button usually takes you back to this blog) and Google is becoming more and more problematic. It’s like their old adage of “Don’t be evil” is fading into the mists of time, along with Borland C++ and proper punctuation.

I’ll be switching my active blogs to new URLs, but don’t worry, I intend to redirect this link myself (take that, hackers!) to the new link.

It’ll be good.

In the meantime, I’m in geek hell. If I could remember more from my software-career days, I’d be in much better shape, but I have to relearn a bunch of basic stuff with a CRPS-riddled brain.

Yeah. It’s a ball.

So there’s some blood, sweat, tears, and probably no further posts until this is sorted out, but then (I hope) things will be even better and easier and cleaner than before. 

Those of you much-cherished people who’ve subscribed via email, I’d love to be able to port your subscriptions myself, but we might have to do that the old-fashioned way. There will definitely be a way to sign up again on the new page.

Wish me luck, patience, insight, and adequate brains…

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Bringing chocolate

I have to be back up North by noon on Thursday, to collect my mail, get the paperwork, meet one of J’s many brothers, and catch up.

A friend is going to come up and visit me when I’m up North.  I actually have a friend in SF who likes me enough to make the drive. Pretty cool 🙂

J has been making friends with the neighbors, and there is nothing like friendly neighbors.

I didn’t find a place to land in LA for my upcoming doctor stuff, but I did cultivate one real, very charming possibility for the future. Not open now, but maybe in a month or two. Which would be better for me anyway.

I’ve been meditating and doing a lot of spiritual work, and am bent on making as little room as possible for mean-spiritedness and ill-will in my life. This is a wonderful exercise because let’s face it, it’s a challenge to have no ill-will in these (apparently) increasingly mean-spirited times.

But I have a very welcome houseguest to see, a bf who’s a bit challenging but extraordinarily loving, and the sweetest dog alive to get back to.

My bf’s brother is going to be hanging around for a few more days. I find that comforting. I’m bringing chocolate.

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A bit of flow

All in all, a successful day, by rational markers…

  • Two huge problems taken care of at long distance (the combination of phone and internet is a wonderful thing). 
  •  J has a brother with him now, a good-hearted dude who totally has his back. Just the kind of person I want him to be seen with around town! 
  • I saw properties in, and did a reasonable checkout of, the nearest town covered by Craig’s List and within any version of my budget. 

It didn’t result in housing, but it did result in info and a certain amount of clarity…

Benefits: more than one color among its inhabitants, both middle-class and poor people, all the usual stores, houses reasonably recent and reasonably well-constructed (by California standards.)

Drawbacks: the classes are strictly segregated, and the gates and walls shut the poorer people IN. That’s just a bad sign… All the stores are big box; I think I saw one non-chain store in my whole tour. A town with shallow roots.

Fun bit: A scam claiming that a house worth $1400/mo is posted on craigslist as being rented at $550/mo; my email query got a fulsome reply from a “pediatrician” (who can’t even spell the word) who just moved to Florida, and might possibly go to Texas next, don’t worry, just fill out all this personal, identifying info and send the money and he’ll FedEx the key…

And if you believe that….

I  checked out the house, called the number on the sign, had a lovely chat with the receptionist for the real-life management company, and forwarded the email after informing her that a thoroughgoing scam like that really is a police matter. (It was at least the third call.)

Unfortunately, the bogus price was the only one I could really afford…

Given the way my credit got trashed by my descent into destitution a few years ago, and the problem with sublets (and therefore getting a roommate), I think this will take a lot of footwork.

I’ve always, always paid my rent. My bills go,

  1. Rent
  2. Warmth
  3. Phone
  4. Food
  5. Everything else

But try proving that, in an economy that means houses and harbors get bought and sold every time you turn around, and housing managers and harbormasters get moved and downsized even more often than retail clerks.

Which brings us to the next thing. I spoke of being out of the flow, nothing feeling right. Well, that seems to be shifting — all things being subject to change without notice, and not assuming I’m right or anything. But there is a blossoming of hope and possibility, and whatever brings it, I am truly grateful.

I have the thundering inward message to spend at least the next 18 hours on self-care. No running around until I have done so. No house-hunting until further notice.

This is painfully hard because I’m spending a lot per night (for me) and I want every day to be worth what I spend on it. That’s a bogus, above-the-neck, able-ist thing to say, though. I have to damn well take care of myself. Otherwise there is no worth, no day, no useful activity.

I got enough food for a couple days, detergent for dishes and laundry, and need nothing more that I can’t get within a short walk in this reasonable neighborhood from my safe, upper-story room.

Time to take care. There are far worse things!

with a tip of the hat to Zorba the Greek 😉
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