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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A “bag of tricks” post: Care in Western NE, loads of info sources, and why long car trips hurt so much

felix-the-cat_n-bag-o-tricks
I’m now attending a weekly meeting of fellow pain patients in the area. It’s very good. A few things came up which I felt confident to share with the group and am now sharing with you, because the body of info is so useful… even if it’s only connected “under the hood.”
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Pain care in the western New England region

Here are the local resources I can (to some degree) recommend. Those of you from other states and regions, please feel free to make recommendations in the comments! 🙂

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Baystate Pain Management

There’s a Pain Management Center in Greenfield, MA, which I never knew about. It describes itself as “interventional”, meaning their focus is on procedures and injections and the like. (This means they aren’t currently doing much with the material mentioned in the Readings heading, but that may change in time.) They also provide PT and acupuncture, the latter only at the Springfield site. https://www.baystatehealth.org/services/pain-management-center

The Springfield site is the old home of a doctor I’ve mentioned before and don’t want to mention again. I noticed they don’t list staff on their current web page, but I do intend to follow up and learn a bit more about their current practitioners.

 

Real Pain Diagnosis

A New England pain practice focused tightly on accurate, validatable, useful diagnostic practice: http://www.ihurt.com/our-approach/
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My doc, Lloyd Saberski, is intellectually conservative, and will do nothing that has a fair chance of hurting the patient. (Since I tend to be more gung-ho, I consider his approach a necessary complement to mine.)
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There are a couple of other specialties (stem cell treatment and a weight-loss thingy) attached to the clinic, which is probably how they stay in business despite putting something as rare, time-intensive, & low-paying as advanced pain diagnosis at the center of the practice. I have never had the least hint of being nudged towards either of those; rather, Dr. Saberski specifically mentioned once that stem-cell treatment was still an immature modality with only a few conditions it was proven for, and that it would be totally unsuitable for me. Despite my poundage, he has never mentioned weight-loss, not even with a glance.
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Readings on brain plasticity, with guidance on pushing back

I consider this the best lowdown on trauma gets put in place into the brain & body (and why this shows that Worker’s Comp and the insurance industry are specifically trying to destroy us, so don’t buy their evil story about you): “The Body Keeps the Score” by Bessel van der Kolk
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It’s pretty science-y, so feel free to start with other authors like Pat Ogden or those listed below.
 felix-n-sciencenerd
Other authors I can recommend are…
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Norman Doidge

He’s a doc who developed central pain in himself, realized the current medicine on it was, um, let’s call it ill-informed, and eventually turned his extensive study on the subject into accessible material for the rest of us. He’s a good story-teller with an eye for the compelling detail that makes his point. He has two books out, both of them excellent, informative, and inspiring, avoiding all the usual pitfalls of physicians who like to write. He stays on topic, refers to the science, defers to the patient’s experience, and each side-trip turns out to be relevant and interesting.
I now mentally push my pain back up my spine and squish down on the pain regions in my brain every time I think of it 🙂 Week 2 — 4 more to go! Read more from him to understand what that’s about.
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Francine Shapiro

[Video list] [Book list] [CEUs and workshops — see links across top for more training]
Credited with developing one of the most-recognized techniques (called EMDR) for accessing the neurobiology of distress and reprogramming the mind/body response to it. Some of her work is very clinical, and some of it is designed for anyone to pick up and use for themselves. Be aware that EMDR techniques tend to be multi-stage processes, and the “at home” techniques involve a little advance work to set up your mental safety-net. (I did that during my designated meditation time, which I use for any solitary mental healing work.) With that done, you have a lot of options later for catching yourself and quickly restoring your ability to cope.
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Babette Rothschild

[Video list, most under 10 mins; 8 Keys series] [Book list] [Free articles]
[Check out Dr. Rothschild’s brilliant chart on the autonomic nervous system’s activity levels!]
An outstandingly practical person with tremendous insight and depth, she is one of the founders & leaders in the field of understanding how ghastly experiences interact with the brain, and how the individual can get consciously involved and get back in control of these systems.
Note: These last two skillful practitioners produce, not only video clips and their defining books, but also accessible articles, textbooks, narratives, and workbooks for both professionals and patients. This provides many ways to get into their information, whatever your sensory learning mode and attention span, so you can see what works for you.
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Stephen Porges

[Books] [Articles] [Videos & podcasts, curated list] [YouTube]
A lucid speaker and explainer with many videos and a couple of books, especially (but not exclusively) for brain-science nerds. He co-authored several additional books that turn his theory into practical tools and techniques to use in real life. He focuses on hot issues for painiacs and those who love us: re-training our brains to identify and embrace the feeling of safety, developing healthy relationships in spite of twitchy brain responses, and re-developing our neurological coordination so we can get back in charge of ourselves.
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Multiple access-points to get to the same root issues of healing our neurobiology

felix-the-cat_magichat
These brilliant practitioners have come up with different ways to access and engage with our natural neurobiological wiring, in order to manage our own brain and body responses better. Many of them focus on trauma recovery rather than the ongoing disruption of central pain etc, but, where that’s the case, I mentally edit for ongoing “trauma” (which ongoing pain is, strictly speaking), and I find considerable insight and useful techniques there. Great stuff. Also, if you’ve had awful things happen in your life, you may find a useful healing approach in one or more of their works.
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Resources & info in this blog

I’ve been keeping a blog for ~9 years, though the earlier years got lost in a move. (Just as well; I was flailing.)  Questions I could probably bore you to tears answering in person…
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Some of my blog posts on neurotransmitters & depression: http://livinganyway.com/wp/category/neurotransmitters/ 
There are 2 pages of links. The first in the series is a quick primer called “Dopamine, poverty, and pain: the lighter side
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Patient-generated documentation & record keeping: http://livinganyway.com/wp/category/documentation/ 
As I say elsewhere in this blog, it’s a bit of work to generate the first set of documents, but maintaining them is easy, and the payoff in personal poise and doctor response is tremendous.
  ..

Why is sitting in a moving car for hours so rotten?

Oh, boy, let me tell you what I’ve found about this! I think of it as 4 main issues, each of which I’ve developed ways to mitigate for my own case:
  • Skin
  • Surfaces
  • Stasis
  • Vibration

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Skin

Our skin (where all those peripheral nerve sensors hang out) is hardly moving and half of it is pretty much unable to breathe, due to the mechanical pressure of our limbs against our bodies and the seat against our backs & thighs.

This means:

Hungry skin, with cellular & intestinal metabolic waste building up, no way to flush itself, with unhappy sensors, makes for serious discomfort.

Mitigation:

I find a good song and dance & gently gyrate in my seat :))
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Surfaces

Believe it or not, cars (especially American cars, sadly) are made of plastics that release molecules, which is called outgasing. Most plastics (including fabrics) outgas, meaning that molecules evaporate off the surface and escape into the atmosphere. These aren’t body-friendly molecules. Variously, they may interfere with  endocrine (hormones) and aprocrine (sweating) activity. Many are neurotoxic, capable (depending on individual factors) of reducing impulse control, spiking irritation, and triggering emotional and physical pain. (Many of the studies around this have disappeared from the web, which somehow doesn’t surprise me. Sigh.) This lessens as cars age, but doesn’t go away as long as there is plastic, car fabric, foam, treated leather, varnish, etc, in the car.

This means:

The vehicle itself compounds all the skin stuff, and adds a constant low-dose exposure to neurotoxins.

Mitigation:

Even in cold weather, I roll down all the windows every hour or so and purge the air in the car.
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Stasis

Our joints are not able to move much. The position, with the hips rotated slightly back, the shoulders reflexively rolled slightly forward to compensate, and not much room to do otherwise, is an unnatural position to be strapped into. It reduces ordinary motion, CSF/lymphatic flow, and nerve transmission, especially through the hips and spine. Our joints carry a lot of sensors, including those for blood pressure and balance; having them stuck in one position (while we’re breathing outgas, of course) makes the sensors unhappy, contributing to that general sense of yucky unpleasantness.

This means:

Unhealthy stasis in the joints, spine, and circulating body fluids, including CSF, lymph, and blood. This contributes to a central (brain & spine based) body-unhappiness.

Mitigation:

When I’m driving alone, I stop every hour and, at least, stretch and move until I feel okay, or do t’ai chi/qi gong/yoga if I feel safe enough. When I’m being driven, we stop every 1-1/2 to 1-3/4 of an hour. We usually stop for 20-30 minutes, unless we’re in a real hurry, in which case it’s 15. I don’t tolerate less.
Mitigation bonus: stopping this often means I can get potty breaks, making it easier to stay hydrated and up on my electrolytes — which makes everything more bearable and significantly reduces recovery time.
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Vibration

For many of us, vibration is a problem. It certainly stimulates the nervous system, especially in the spine and feet, and wherever you’re touching the structure of the car.
Whether vibration itself is obnoxious or not, car vibration is irregularly irregular, having no consistent pattern whatsoever. This means my brain/body has no chance of anticipating or compensating for the rhythm of it, putting my body in a constant state of jolt. I find it exhausting, and it pushes up my dysautonomia as well as my pain.

This means:

Central stimulation in a relentlessly irregular vibrating pattern can be really harsh.

Mitigation:

I adapted the inside of my car to reduce my exposure to seat outgas, improve airflow to my skin, and cut steering wheel and seat vibration to manageable levels. I also chose my car carefully to get maximum smoothness & good shocks in the first place.

Here’s a link on how I adapted my car to mitigate these effects, written amidst a cross-country drive! http://livinganyway.com/wp/2012/11/09/re-learning-how-to-drive/

The category about how I finesse my objects is called “Adaptation”.
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Summary

Nothing, but nothing, stabilizes and improves brain chemistry like activity and good air. Having…
  • all this gradual build-up of normal cellular & metabolic toxins,
  • PLUS the special added loads from the car itself,
  • WITH inadequate activity to move things along,
  • AND this forced posture we’re strapped into allowing for even less movement,
…adds up to most of the reasons why long hours in the car are SO hard on those of us with over-challenged systems already.
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Getting held up by New York

I’m working on a novelette about the meningitis madness of last month. Until I get it done, let me entertain you with another tale of traveling with pain.

About five years ago, I fled an intolerable situation in California and, being pretty sure I was in my last few months of life, went back to the Northeast to visit with my nearest and dearest and stay until I mended or died, whichever it turned out to be. In short, I was not at my precarious best. I’d thinned my belongings down to what would fit in a suitcase small enough for me to handle, plus a spare set of “smallclothes” and meds in my laptop bag.

I flew into JFK airport and made my way (eventually) to a New York suburb down the street — and downmarket — from Scarsdale. I thought flying across country was hard work. Leave it to New York City (and environs) to adjust that perception. Anything worth doing is worth doing BIG!

It started with getting my luggage — the carousel changed 3 times. It had my supplements and laptop power cord in it, so there was no leaving it behind, as there was no knowing where it would wind up if I abandoned it and tried to get it tomorrow — it could land in Athens stuffed with either explosives or maple candy, or in the garbage scow on the Hudson stuffed with random bits of unsuccessful mobster; the contents would be more oddly distributed still. I’ve been flying into and out of JFK since the early 1970s, and I never leave my luggage uncollected there.

Each time a new carousel number was posted next to our flight number, herds of wilde travelbeests lumbered across the linoleum plains, flowing around eyots of irrelevant carousels and travelers from other flights, who huddled against treelike pillars and carousel islands in order not to be trampled underhoof.

I limped gamely after, unwilling to leave my luggage to the mercies of the feral crowd. We ultimately wound up back at the first one, which somehow didn’t surprise me.

I managed to get my bag unhooked from the carousel lip, but no further. It was just about to throw us both into the guy next to me, when he kindly popped it out and dropped it neatly next to me, with a brisk nod. Then went back to field the hefty steamer trunk of the twitchy Givenchy skeleton behind him.

I debated taking the bus to Penn Station ($3.50) vs train-shuttle (unstated) to the shuttle-bus($1.50); figured train-shuttle would be free, as my training in UI & signage, and casual acquaintance with the law regarding same, made it absolutely clear that prices must be stated up front. No price stated, ride is free. Sweet!

Of course, every other international airport I’d been to in the past 20 years provided free transport within the airport complex. This was New York, where you’re charged even for the gum on your shoe, so I was a little wary, but I was also exhausted and poor.

Got off at the end of the train-shuttle, pulled my wheeled suitcase to the exit door, and there found a sign stating it cost $5 to exit the train-shuttle station.

Stared at sign for 2 solid minutes, flies drifting in and out of my open mouth. SO. BLEEPING. WRONG.

Briefly considered going back, but too tired. I gave up my prospect of a little “real” food in the city to get out of the shuttle track area (why did I think $5 would buy anything in NYC?), and got to the shuttle bus.

The leaderboard read, “Penn Station.”

I asked the driver when the bus came that would take me to Grand Central. He said, “This bus goes to Penn Station.”

I asked again when the bus came for Grand Central Station, and the bus driver again said, “This bus goes to Penn Station.”

I said, “I understand that. I’m wondering when the bus is that goes to Grand Central.”

“This bus goes to Penn Station, lady.”

It finally dawned on me, as he was about to close the door in my face, to ask if there WAS a bus to Grand Central from the airport.

“Nope. This is the only shuttle into the city.”

“You’re kidding.”

“Nope. You have to get from Penn to Grand Central yourself.[I interjected, in shocked squawk, “STILL?” He nodded.] You can take a bus or the subway, but with your luggage, you’ll want to take a cab.”

I hitched up my jaw and hauled self and luggage in. He almost waited until I was seated to take off.

A teenager tripped over my suitcase on the wide, spacious, brightly-lit shuttle-bus. My suitcase came up to mid-thigh and was HOT PINK. Somehow, he walked right into it and went down with it — wrenching my wrist and elbow of course. After looking around blearily, initially wanting to blame someone other than his own clumsy butt, he very sweetly picked up all 38 pounds that encompassed every object I owned other than the clothes I had on, which was more than I could do, and put the handle back in my hand. I re-wrapped it with the scarf I used to cut the vibration and, with an added loop around my forearm, provide some stability against my weak grip. But, in case of other spaced-out passengers, the loop didn’t go back on until I was off the bus… at Penn Station.

Because it’s NYC, where a good conflict should never be resolved but should be handed down for posterity, they have NEVER IN THE PAST CENTURY figured out how to link up the northbound train station with the southbound train station, despite the fact that the trains are the lifeblood of the city and, on top of that, millions of customers travel from south of NYC (Baltimore, Washington DC, and points south) to north of NYC (from White Plains to Buffalo, all of New England, and Canada) every. freaking. year.

The JFK shuttle comes into the southbound train station, Penn. I needed to leave from the northbound train station, Grand Central. It was up to me, as it has been up to every single individual traveler in the past 100 years, to figure out how to get from provincial-sounding Penn to the arrogantly misnamed Grand Central. Let’s review my choices:

  •  A cab was out of reach, especially as I’d just blown $5 on a ride that should have been free.
  • The subway meant more confusion, bumping, and stairs (the elevators and escalators are always out of order or being fought or pee’d on, sometimes both at once) than I could even think about without screaming.
  • The bus required finding secret, unmarked bus stops where they WILL ignore you if you’re off by a few feet and, I’m not kidding, either one or two transfers for one of the most essential routes in the city. There was no direct bus between the two major terminals of this train-dependent conurbation.

I can’t make this stuff up!

I decided to haul myself and my hot-pink suitcase the X blocks of crappy city sidewalks to Grand Central. “It’s not that far” — famous last words. “I’ve done it before” — 20-odd years ago, pre-injury.

I checked the map, got a sighting on the sun, went one block to read the street sign and check my direction, turned left, and marched off — for about 5 steps.

There were many adjustments to work out: soft tethering scarf, arm used (eventually, both), length of stride, and what to focus on — the directions, the pedestrians who mostly swerved nicely, the truly awful surfaces I had to traverse. The surfaces won in the end, out of sheer necessity. The occasional bozos, who thought I could steer better than their unladen selves, bounced off of either me or my sharp-edged case, spitting vile things without drawing breath. I kept on, pushing through the yawing wobbles the collisions caused as I pitched and heaved steadily onward.

Dear heavens, it was arduous.

Halfway there, dripping soot-laden sweat and hauling my grimy, now ashy-rose suitcase which had accumulated about 15 pounds of pollution by then, I found myself heading towards a cluster of burly cops standing between a parked cruiser half in the road with its butt half blocking the driveway, and the loading dock behind.

They gave me that dry, supercilious stare that city cops learn in the Academy. It says, “For our comfort and convenience, we’re deciding whether or not to kill you right now. Don’t try to make our day.”

I thought about that for a moment, trudging along with my case baulking at the bad paving, yanking my swollen wrists around like a fighting tarpon. I glanced at the path around the cruiser, involving 2 curbs, bad patching, and a pothole; quite apart from the random, fast, and dangerous traffic in the street. Definitely worse than the sidewalk.

I realized what I looked like: a grubby, chubby, oversocialized, White middle-aged female, evidently too poor for a cab. Very low on the food chain.

I realized I didn’t care.

I flashed back to the Jaguar my friends used to call me.

It was a youthfully arrogant and vigorous period of my life, when an off-duty cop in a bar in Manhattan wanted me to tie him up and beat him black and blue, because he’d really enjoy that. (I refused ever so courteously — which went curiously with the well-worn motorcycle jacket and wash-and-wear lack-of-hairstyle — and walked away, eyebrows twisting at the sheer novelty of the experience.)

I refused to walk around into the street. It was insane and vile to expect it, when I could clearly hardly put one foot in front of the other and was towing my life with battered arms.

No. Not playing that game.

One tactic of successful women:
If the game is rigged against you, change the rules.

This clot of cops got the twin-engined, diamond-drill stare from under my beetling brows, the burning power of pure womanly disgust and exasperation doing the work of 5 bodyguards and a million dollars.

Great shot by Bernard Dupont of France, via Wikimedia.

New York’s Finest peeled back from my path like an amateur drill team, stumbling slightly and eyes wide.

Yeah. That was more like it.

Same photographer, same cat, relaxing after she made her point.

I heard their startled and admiring voices behind me. I almost smiled. I wondered what they’d say if I turned around and demanded a lift. It was almost worth the effort, but turning back was unbearable, even for that entertainment — so I kept on.

NYC cops weren’t so racist then; it might have worked even if I weren’t White. The good old days.

Stumbled into Grand Central, at last.

Just what it’s like. Image by diego_cue

After dropping my sweat-sodden self onto a bench until my breathing evened out, I got up on pure willpower (my legs certainly didn’t have much to do with it) and wobbled up to the ticket window (One of those funny alcoves on the right.)

Despite the unmitigated chaos and relentless interference of my cross-City odyssey until now, I had the pleasure of getting good instructions, delivered clearly; the right ticket to my destination; explicit directions to exactly the right track and the right train; and which cars to avoid — “The drunks use that one, and it’s never clean.”

I fell into the seat nearest the door, then slid to another when someone dumped a heavy bag which fell over onto me, edge first of course. I let the bag lie and he eventually picked it up.

A lovely young woman, the quintessence of perfectly-formed and perfectly-presented modern American beauty, got on in one of the suburbs, sat down across from me, and gave my weary, grubby, chubby, middle-aged self the sweetest and most open smile. I did my best to repay such sweetness from out of the blue with the best smile I could dredge up in return, and a nice word.

I got off at the Scarsdale stop and there was a slight pause in my progress as I resisted the boisterous flow of commuters scenting their stables. Clutching the rail that had kept me from being swept under, I saw a car door open. In a few steps, I fell off of the train station and into the arms of my old friend.

I asked her later why such a beautiful, clean, discreetly made-up, perfectly turned out young woman would greet such a gargoyle’s appearance with such sweetness. My friend replied, “I’m not sure how to tell you this, but it’s envy. You can afford to let yourself go [finger-quotes.] She can’t. She wishes she could be like you.”

It finally penetrated what a trap the relentless and expensive looks-slavery of upscale New York is for women. My lifelong sarcastic envy of “Barbie dolls”, not to mention “Givenchy skeletons”, died on the spot and I was glad I’d added the nice word. Anyone who could envy me at that point was in really bad shape.

The cross-country flight was originally going to be the funny story I told to amuse my hostess — delay, changed gate, dashing around in a wheelchair, turbulence, sick babies, nervous lady with long arms and huge rings taking up the aisle and risking the eyesight of those nearby — but it really paled next to the story of the last few miles. She laughed and applauded and then, once I was fed and pilled and washed, tucked me into a soft bed with endless pillows. I slept better than I had in months, safe and still and comfortable at last.

I haven’t tried to cross New York City since, except when I can afford a cab all the way from the airport to Grand Central. Life is too short for that much work and physical battery… and the NYC cops have changed.

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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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Managing with one foot

CRPS tends to demineralize the bones, creating a sort of Swiss-cheese-looking osteoporosis. I’ve held that at bay so far, and I believe it relates to jumping on the vitamin D bandwagon long before I saw it in the news — I followed a tip from a friend without CRPS, who found that it kept her teeth from chipping. Well, I know why teeth chip — demineralization. So I started on the D3 at the first sign of soft teeth, years ago.

The other main thing to hold back osteoporosis is weight-bearing exercise.

I am absolutely certain that the old nursing/physiotherapy trope, “Use it or lose it,” is nearly always true.

Mind you, there are no guarantees.

Another trope: absolutist statements are always flawed.

Preferring to stack the oddds in my favor, I’ve stayed active and weightbearing despite considerable slumps, occasional backslides, and the occasional wish to throw myself off a bridge rather than mobilize.

So here I am with a broken foot, bone pain for the very first time since I got CRPS, and camping in our trailer as a diversion and a coping measure for being in between homes right now. (And that’s another looooong story.)

The second week post-fracture was interesting, as I figured out how to stay mobile. In this third week, I’ve learned that I should probably spend more time sitting down with my leg up.

Lay-people keep asking where my cast is. Casting slows healing. I have CRPS, which means my healing is already slowed considerably. Do I really need to slow it further? Hard to see an upside to that.

The point of casting is immobilization, and there are other, safer, saner ways to do that. Jamming a hard surface against a soft and variably swelling one doesn’t strike me as the best way to stabilize a small but essential bone. There’s nothing quite as rational as just leaving the darn thing COMPLETELY ALONE. Especially when even the touch of the sheet is unbearable … because, oh yeah, I’ve got CRPS.

The single biggest cause of nonhealing bones is overuse. Even I, type A-ish as I might sometimes be, can’t think of anything stupider and more wooly-headed than putting any weight or stress on a broken foot. Those are small bones with the most fundamental job in the whole skeleton. When they go wrong, it’s not good!

At first, I didn’t even put a sock on it — just a light lady’s scarf at times (a gift from a healer friend), gently wrapped around to keep the breeze off — or, as I thought of it, the burning blast from hell.
mismatched_sox
Recently, I graduated to a loose, bright red fleece sleeve with the end stapled shut (breeze…) Now that the swelling is down enough, I can wear the “walking” (no, that’s not a sensible suggestion) shoe…
Red fleece sleeve slid over foot and lower leg. Walking shoe on.
… to minimize the effects of the occasional little bumps and jostles the foot gets as I dart around on my stunning little knee-walker.
scooterfreesme
I can’t use the knee-walker in the trailer, too close to the car, on rough terrain, or when the bruising on my shin gets too bad. So the moves I developed in my first week are getting more refined.

Major problem… Despite an eating pattern averaging 1,450 kcal a day of steamed greens, lean protein, and highest-quality fats, I weigh 200 pounds (90 kg.) So,

  • every time I lever myself up from the floor on one foot .. that’s 200 pounds going through one knee bent double, on a frame designed for less than 150.
  • Every time I hop, even in my scoop-bottomed sneakers, that’s 200# — plus velocity — landing on that leg each time.
  • I do my best to control my velocity and distribute the load through the whole spring-structure of the leg, but … 200 pounds. I thought my Achilles tendon was going to pop off my heel yesterday.
  • Every time I brace myself with my hands on a rail or counter as I swing or scoot along, that’s 3 digits of poundage on my CRPS’d carpal tunnels.
  • And then there’s getting in or out of the trailer I’m living in, with its two and a half foot rise… makes me feel faint to think of it.

It’s kind of unreal that my body has held it together for so long. But hey, like I’ve said, a lot of us find that we are capable of far more than the science might think.

The t’ai chi is invaluable. It’s all about the curves. Everything, in the end, is embodied in the swooping lines of the taiji symbol.
Yin_yang-sm
I can get a lot more leverage than should be humanly possible out of a curving or looping wave of my hand — a Roll-sideways rather than Roll-back, for my fellow t’ai chi-kans.

I propel myself from the ground up onto my foot by sending energy down from my back in a spiral into the floor, and letting that “imaginary” spring push me up. Go Dragon!

I settle onto the toilet while keeping one foot aloft by using a really cool sort of 3-D scissor-swoop with my two arms — Part Wild Horse’s Mane, but with less tilting and more curve.

The pain is, well, beyond words, so let’s pass on. The level of dependency is, for me, even worse. The hardest part of all, though, was giving up chocolate. It interferes with calcium absorption. I did say about not slowing healing, right?
choco-giving-it-up
I’m grateful beyond words for the t’ai chi moves. They save me, in a very physical, literal sense.

While we may find, in impossible situations, that we are a little superhuman, it isn’t good that we have to do these things. It isn’t healthy. In fact, it’s all rather ghastly from the first-person standpoint, however much it seems to inspire outsiders. In short, it sucks. And we suck it up. Then move on.

Swoopingly, if we know how.
I think I’m halfway to Bagua Zhang by now.

But it’s all related.

I wish I were an animator. I have these ideas in mind of a cartoon character who wiggles where I do, and not only could I make the character bounce and thud and stagger and scoot like I do, but I could animate wa-wa-ing waves and oscillating ropes of pain in morphing colors for each move. It’s really rather elegant, as well as side-splittingly funny in a greusome way. At the same time, extremely informative. Extremely.

Hmmm.. I guess I’ll download and learn some suitable animation software. In between the fractures, fallouts, fall-throughs, snafus, and the dribbling detritus of a slightly ridiculous life.

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Autobiographita

I heard from a lovely friend of my youth, who wanted to know what I’ve been doing since Egypt. I tried to tell her. I realized that, embedded in my nutshell autobiography, were a lot of clues about why I blog and why I approach CRPS and its ghastly little friends with this sort of incisive determination seasoned with a laugh, a sort of functional contempt — an attitude of, “not going to let such a nasty little mindless rat-fink take any more of my life than required.” It goes way back. So here’s a little background…

I was born in Ankara, Turkey, though I nearly wasn’t born at all. My mother started bleeding well into her pregnancy. The protocol at the time was to get care from the Army base near Ankara. The Army doctor told her, “The baby’s dead. Come back on Monday and we’ll have it out.” Which, if it were true, would have killed my mother… but she didn’t think the baby was dead.

She asked around and found a Turkish doctor (her Turkish was pretty good) and he said, “The baby’s not dead, but you’re going to bed and will stay there until it’s born.” (She spent her time reading, smoking, and knitting, so I have something to blame for the asthma. I think it was all that knitting. The sweater made its way all the way down three children intact, so it was some very good knitting, but still… )

block image of a toddler's read sweater
A few months later, the wonderful Turkish doctor strolled into my mother’s hospital room, threw open the blinds, and said in Turkish, “A new day, a new baby!”
children-Versailles_petit_appartement_de_la_reine_web
As we left Turkey 3 years later, me toddling along with my little stuffie in one hand and my mother’s hand in the other, my older brother charging ahead of my Dad who was carrying the bags, and my younger brother a babe in arms, my mom was stopped on our way to the gate. It was the nurse from the Army hospital. She said, ever so kindly, “Oh Mrs. Aweigh, I remembered that you’d lost a baby. I’ve thought of you often, and I just wanted to know that you’re all right, now.”

My mother was very touched, but she had a plane to catch. She looked at me, looked at the nurse, looked at me, looked at the nurse, and said, as nicely as she could manage, “I’m fine, thank you,” then caught up with the rest of her family.

We survived 7 years Stateside, and left for Egypt in January of 1976. I consider that to be my humanization, as I never felt at home in New Jersey. That could come off as a cheap shot, but it’s the simple truth. I was all wrong there.

Cairo was a dream come true, only I never could have imagined being somewhere so rich — rich in history, rich in culture, rich in the textures of language, rich in feeling. I had finally come home.

I also discovered healing, taking in whatever sick or injured animals came my way and figuring out how to help them — kittens, pups, birds both wild and tame… I’d have gotten a donkey, if the neighbors would have let me.

Very young white donkey grazing cutely under palm trees.
This little colt is nearly as cute as the one I had my heart set on.

I was a dependent, however, and we weren’t allowed to stay in one place for more than two “tours”, totaling four and a half years. My folks went to Bangladesh, and my older brother and I went to high school in Massachusetts.

I was in rural Western Massachusetts, a slice of heaven on earth, especially if you grew up in a desert.

I wound up starting at a Seven Sisters college there. Left the ivory tower when school was interfering with my education (thus neatly acquiring the black sheepskin from my disreputable older brother, who had meanwhile cleaned up his act and gone to law school.)

I became a registered nurse after surviving a sailing trip from Cape Cod to the US Virgin Islands, taking the deep-water route outside Bermuda. The captain was a drug-addicted control freak and sexually inappropriate — none of which became apparent until we were signed on and nearly underweigh. (Now, I’d run anyway, and let her lawyers try and find me. I was younger then.)

She had been an ivory tower classmate of mine, an older student who had been locked up for most of her youth for being gay. She probably was perfectly sane to start with, but after being thrown off by parents and socialized in a nut house, nobody stands a chance. However, she was in her 30’s and living as an adult, so it was not ok.

Side note: queer people are somehow expected to be better than straight people, but that’s just unfair. People are people. Some straight people are really decent. Some queer people are really awful. And vice versa! Just let everyone be human, okay? Rant over.

Due to the intolerable hostility and tension aboard the boat, the nicest member of the crew developed a stomach ulcer, which hemmorhaged… so I started my first IV on the high seas and we had a day-long wait for the helicopter to air lift her. Why? Because the drug-addicted captain had plotted us as being about 80 miles landward of our actual position.

That bleeding ulcer saved us all!

We got safely to anchor in Tortola a few days later.
Panoramic view of Road Town harbor in the tropics
After a screaming row with the captain at 1 am over something irrelevant and stupid (not danger, not losing the dinghy, not being hit on, not being verbally abused day in and day out, but something totally stupid and irrelevant), I was kicked off the boat in a foreign country, with $5 and a tube of toothpaste in my pocket — which exploded as I lay sleeping on a picnic table at Pusser’s Landing, halving my resources and adding a mess.

My dad was posted to Jamaica at the time. I was allowed back on the boat to get my things and call him and arrange for my extrication. Nothing happened on weekends on the Islands in the late 1980’s, so I wound up being the house-guest of a truly kind and decent Island couple, who took in penniless waifs and strays simply in order to make the world a better place. I’m everlastingly grateful to Marina and Samuel. May all good things come to them.

After that, nursing school was a stroll.

I supported myself by tutoring in the school and splitting and hauling cordwood in the forest. However, between the time I started and the time I graduated, the economy in Massachusetts crashed, so I headed to Washington DC, where my State Department-associated family members and friends roosted.

My first nursing job was on an HIV unit, until it closed when visitors realized that most people there had, my goodness, HIV. (Sigh…) My second job was at DC General Emergency Dept, the only public hospital in one of the roughest cities in the country at the time. I learned a LOT.

I found my way back to rural Massachusetts, once I had the resume to get a good job in a lean market. I had first learned about herbs and energy healing there, and treated my illnesses and injuries with no health insurance from the time I left college through nearly all of my nursing career. (How ironic is it that it was so hard to get health insurance when I was a nurse?) I also took care of a couple of “incurable” things that patients of mine had, and cured them. I became a good empiricist. Home care nurses HAVE to get results, because there’s no backup.

Scientific-method science is very sound when it’s properly applied, but money and access distorts it too easily. Empirical-method science is the only kind that can actually tell you what works in the case of the individual.
While I prefer to understand how things work, I really only care WHETHER they work in a given case. I’m also well aware that, in medicine, at every point in history, we always think we know a lot — but, 10 or 20 or 100 years later, we look like idiots.

My favorite Star Trek clip of all time sums it up well:

A few years later, as the economy softened again and all but the worst jobs dried up, I allowed myself to be drawn to California by a nice face — which ditched me once we arrived. Not so nice.

I worked as a nurse and made my home in Central California until my immune system gave out, for no discernible reason. Shortly after the immune system pooped, my dad died, preventably (CPR would have clearly saved him, but he was in Egypt and swimming alone) and that was the final straw. Well, the penultimate straw…. Afterwards, my lungs shut down and my doctor was out of ideas. I’m pretty sure that acupuncture saved my life, because nothing else worked.
Acupuncture_chart_300px
Once I was well enough to do some career research and put together a portfolio, I was hired to document programming software, starting with an internship on the basis of the raw talent my supervisor saw in my work. I was quickly hired out of the internship. They had an onsite gym, and one of the loveliest running trails through the redwoods was right on my way to work, so I got into outstanding shape …

…And then the repetitive stress injuries hit.

A couple of surgeries later, with odd complications, I developed a horrific central AND peripheral nervous system disorder called Complex Regional Pain Syndrome, or CRPS. It took from 2001 to 2005 to get diagnosed, then fighting until 2012 to get disability dole (SSDI) and get worker’s compensation insurance off my back. (Call it another 3 near-death experiences. They so badly wanted me to just die, it was stunning to see what they’d do to try to effect that, short of hiring a hit man.) This gave me a lot of insight into the approaching-3rd-world status of US health care and its social administration.

The U.S. spends twice as much on care as other "civilized" countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that's not what the data show.
The U.S. spends twice as much on care as other “civilized” countries, and turns out the worst outcomes of all. Tell me how an insurance-driven, corporate-owned system is efficient and economical, again? Because that’s not what the data show. This link takes you to the full story.

The nursing background and the information-architecture and explanatory experience have formed my current career, the (currently unpaid, but highly useful) job of explicating CRPS, its mechanisms and management, and how I adapt my world to function, in spite one of the most invisibly crippling diseases known to science.

I’ve been trying to think how to turn the plot arc of this life into a nice, suitable-for-polite-company little anecdote, but I broke my foot in my one non-affected limb last Friday (I am laughing with heartfelt irony as I write this) and am hugely motivated to simplify. For me, simplicity is most congruent with honesty and straightforwardness — less to remember. So I just spat it out.

This might explain a few things, among them my fascination with health and medical science, my very wide view of healing (belief is irrelevant; what matters is if it works for you), and why I have zero to negative patience for the arrogantly overeducated — they’ve nearly killed me a few too many times. Right from the start!

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"

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TV, inappropriate sensory stimulation, and when enough is enough

TV flickers at a rate guaranteed to put the higher cognitive functions to sleep. LINK It is literally, and specifically, hypnotic. Anyone surprised?

Some people like that, although I don’t. Some people need that, at least in some measure.

Every waking hour when you’re at home? There’s a problem there, even when you don’t share a house with someone with longstanding CRPS.

I learned to hear the words behind the words when I was an ER nurse. I had to be able to know the truth from the lies to the self, the lies to others, and the lies to the universe. I had to know when people didn’t care if they were lying or not.

Our brains can split the channels of verbal communication, so that the literal meaning of the words goes into our brains via one logical branch, the subtext and connotations of those words go into another, the emotional load the person is trying to convey goes into a branch that analyzes conscious manipulation, and the emotional load the speaker feels about what they’re saying — or if they’re even paying attention to it — goes in via a subtler branch. I learned to parse it quite specifically.

Some people thought I was reading their minds. I was just hearing their speech.

Now you know why, much as I loathe and despise the modern Democratic party, my outraged contempt for the modern GOP (and all its wacky little offshoots) is even greater. The sound of all those relentless, delusional lies is unbearable to me.

My mostly lovely partner, J, has TV again for the first time in a couple of years. Like the Scot that he isn’t, he wants to get the most out of his monthly investment — or that’s his excuse. In any case, he has perfected the most effortless way to get me out of the house: keep the TV on.

Every.
Waking.
Hour.

There are only so many times you can argue about the same thing before you realize you’re utterly screwed, and the most important person in your life is just going to torture you until something breaks.

No wonder I can’t get any work done. It’s too darn cold to be outside for long, so I have no choice but to have my brain beaten into a pulp day after day.

I can’t get the message through to him about what it does to me. He thinks I’m being dramatic or controlling, “because that’s how women are.” (Yeah. I know. Living with someone with CRPS is hard, and he uses the “woman” excuse to think about something besides the fact that this is such a hellacious disease. Moving right along…)

It’s not how *I* am. I’m a weird woman, I readily admit it, but I am not interested in interfering in someone else’s self-medication, as long as it does no harm to others.

That’s a major freaking caveat.

My ears have been ringing for days now. Early hearing loss runs in my father’s family, and the absolutely relentless natter of evasions, irresponsibility, bad acting and recreational conflict are doing significant damage to my hearing mechanisms, not to mention what’s left of my capacity for reason.

And J wonders why I’m getting more unhappy and short-tempered.

Dad protected his hearing and commented on his symptoms and how he treated them. He swore off music and TV for days when his ears started ringing. Moreover, as heads of the family, he and my mother limited TV time to two hours a day.

Lucky cuss.

When J and I leave this area, he thinks we’re going to live in a trailer or something as we wander around the country. While 90% of that is a fine idea (as long as I’m strong enough), we are definitely going to have to solve the TV problem. Personally, I’m preparing to “accidentally” drop something heavy on all the TVs in the vicinity, and apologetically give him a small laptop set that doesn’t even have speakers, just a headphone jack.

I think I could just about live with that.

P.S. It’s worth noting that, every time I write a post about J, I read it to him before posting. I don’t sneak around behind his back at all.

His comment halfway through: “Okay, I’m prepared to split this 50:50.”
His comment at the end: “Okay, I’m just off to go kill myself.”

I think it might have finally penetrated.

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Home

Too big a subject for one blog post, but I’ll try. If this gets poetical, there’s a reason.

The home of my youth, Egypt in the mid-to-late ’70s, (alternate link: http://jldtifft.com/, click Galleries, click Search, enter “Egypt”) no longer exists. The generous and opening society, the cobwebby clutter of the Cairo Museum, the beautiful horses that were cheap to ride, the empty vastness of the Red Sea shores with the impossibly deep nighttime sky,

astrono_galaxies_hubble
Image from NASA/Hubble

even the occasional cockroach in the sodas… Shot down, cleaned up, built over. So it goes. One day, I might adjust to its absence.

I consider New England my home — one very special part, roughly between Mount Greylock and the Quabbin. When I had to move away, the first time, I remember feeling lightheaded as I drove across the border into New York, and spending the next hour counting and re-counting my limbs. I was sure one of them was missing. The feeling of dislocation, in its most essential sense, was that powerful.

When I moved back, coming the southern route, I remember my cat (originally a native of Egypt) waking from her long slumber as we drove through the last few miles of Connecticut and into southern Massachusetts. She had a lot to say about it, which amused the other drivers. When we got onto the Mohawk Trail and headed uphill into the Berkshires, her white fur glowed (I never found out how she did that) and she climbed up to the dash, where she could smell the air coming in through the vents. She inhaled it with complete attention, entranced, ecstatic.

I completely agreed.

To me, the endless green, the snuggling hills, the way the trees mingle with everything around them, the way the water bends and bounces over the sparkling stones, in that particular region, is the most beautiful on earth.

The airy, daffy grace of the black tailed deer, the sweetly sardonic canniness of the foxes, the fluffy explosiveness of the rabbits – not quite like anywhere else.

The white granite begot my bones. The ubiquitous brooks are the flow in my veins.

water_swimminghole-1
Image mine. Share-alike attribution license from Creative Commons.

The turning of the seasons could ignite poetry in the driest of souls: from the full-throated glorious summer, with birds shrieking their fool heads off and the hayfields looking like fat emerald velvet scattered with amethyst heads of clover; to the outrageous glorying riot of autumn; to those rare days in winter when the first light sets every tree, covered in a skin of ice, to blazing like fountains of diamonds; to that astonishing time when the air touches your mouth differently, you notice the first puddles of dirt showing through the snow, the very hint of a crocus nose pokes through, and winter isn’t over yet but the rise of spring pulls you up by the heartstrings.

A friend of mine sent me maple syrup she’d collected and boiled from her own trees.

maple_syrup_tap

Every now and then, I take one taste, and that’s all I need: I can smell it, hear it, feel it — if I close my eyes, I can see it too.

I love the un-fussiness of the people. Outsiders consider New Englanders reserved, but it’s more that they’re judicious. If it were obvious how utterly decent they are, nobody would ever leave them alone.

A visitor made this plain to me. A crusty old fart, whose family name was on half the landmarks in the area, had just plowed my driveway with heavy equipment. Knowing from my winter of splitting and hauling cordwood what it takes to do winter work, I invited him in for fresh-ground coffee. He hesitated until I said it was fresh-ground (I never drank much coffee, and it either had to be good coffee or a bitter day for me to enjoy it, so I made sure mine was good.) He came in, stamped the snow off his boots outside and inside, and shut the door as he unzipped his enormous down jacket, which was itself stiff with cold.

Underneath the crusty outer layer of jacket, the down was puffy and warm, opening out in billows behind the zipper. As the coat opened, so did his face. His voice warmed up and he reached gratefully for the coffee, alight with delight and fellow-feeling.

That’s New Englanders all over. Super crusty and maybe chilly on the outside; underneath, all soft, gentle, slightly fluffy, and ever so warm. Once a New Englander accepts you into the inner circle, you’re there for life.

It’s not bad. Not bad at all.

Years ago, the aggressively shortening days of winter made half the year pure hell for me. No amount of expensive lighting could compensate. With CRPS on top of that, the cold is unbearable and the extra work of winter is beyond me – and I used to love splitting wood, and even shoveling snow. It was the second-best way to get warm.

Snow_shovel
Image from Wikimedia Commons

I’m more or less trapped on the other side of the continent. I’ve given up on long trips until I’m strong enough to recover quickly; the current recovery time is 10 days, which doesn’t leave much time for visiting.

Nevertheless, and despite the fact that October’s shortening days are impossible there for me, there are times when I miss being home.

I’m thinking ahead to finding a place to settle. Where I am now is temporary, and for a very specific purpose (more on that later.) I’ve had a decade of transience, with much travel and frequent moves. I have other things to do, and I want a home to do them from.

I’ve had two excellent, intriguing, beautiful and fulfilling homes in my life. That makes me very lucky. Nevertheless, before too long, I’ll be looking for one more.

Johann_Georg_Grimm_1886,_Fazenda_em_Paraíba_do_Sul

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Happy Everything!

Now that the December holidays are within a couple days of being totally over, I hope it’s safe and amusing (rather than triggering and insensitive) to talk about them from my idiosyncratic point of view 🙂

We left the U.S. in January of 1976 for tropical countries, shortly before my 10th birthday, and didn’t move back for about 7 years. (This is relevant. Hang on.)
airplane_Abu_Dhabi_Boeing_747jpg
This means my entire pubescence and adolescence was spent in countries where, at the time, Christianity was an amiably tolerated oddity, and Western-style Christmas was weird almost beyond belief… but the pragmatism of shopkeepers is the same the world over: It’s all money!

And, of course, the legendary sweetness of Egyptians (outside of politics) made it all a sort of good-natured sport:
“Tell me what is ‘Christmas tree’ and I’ll get it — for you, special price, my friend! You my friend! Special price!” (The last part is indispensible.)

For you, my friend, special price!
For you, my friend, special price!

Then it was a matter of watching them try to keep a straight face, as you:

  • Try to obtain a cold-weather evergreen … in a hot desert country;
  • Subsequently drape that evergreen in colors of snow and blood … in order to celebrate a god of peace;
  • Who came to earth in — yup — the desert … where it snows less than once a century;
  • Which is all somehow tied up with celebrating a Northern solar event, which doesn’t matter near the equator

… And then there’s the obligatory gift-giving. This was even a bigger trip to explain.

The Cultural Gap on Gift-Giving

“Everyone?” I remember one man asking Mom, in deep confusion. In his life, the only people who got gifts were those who deserved it, and little children on their birthdays.

“Well, not everyone,” she temporized.

“Who do you have to give things to?” he asked, really wanting to understand.

She did her best to explain, as a good cultural ambassador should. “Your husband or wife and children, of course.”

ALL the children?” he asked, in shock.

“Well, yes.”

“Even if they’ve been bad, or broke the car, or spoiled the crops? Cost you a lot of money? You still buy them presents?”

Mom had to stop a minute. This is where practice bears no relation to theory. “You can try not giving evenly to the children, but they’ll let you know. Mine let me know, as a group, if they think it wasn’t perfectly even.” We did, too. She went on, “And I send presents back to my brother and his wife and family –”

He interrupted, “Where are they?”

She said, “In America.” Where he knew we hadn’t been in a few years.

He tipped his chin to one side, in that “as you wish” gesture of the Middle East, which was a polite way of indicating, “yeah, this doesn’t seem silly. Much.”

She went on, “We also send gifts to my husband’s brother and sister and her children — she’s divorced, so we don’t have to buy for her husband any more.”

His eyebrows popped, but he held his tongue. Why would you buy gifts for nieces and nephews thousands of miles away? What have they ever done to deserve that much effort? — And divorced?? A woman, divorced, still embraced by her famiily? And these foreigners push off the guy instead — odd, but probably praiseworthy. Okay. Nice. Weird, but nice. Moving right along.

But he didn’t say any of that aloud.

Mom went on, “And my mother, of course. My husband’s parents and my father are no longer living, so we don’t have to buy for them.”

I thought he murmured, “I’m surprised.” Maybe it was just his limpid expression.

She went on, “Oh, and we get something for the servants, plus a bonus of money. [Eyebrows up: nice deal, a bonus for your boss’s religion]. And Tom gives his boss a gift, small but nice, and the office pitches in and gets something for each of the secretaries, but Tom still gets something extra for the ones he works with [visibly wondering about those secretaries]… And then of course our friends.”

He was beginning to sound weary, or possibly just relieved that it wasn’t him. “All your friends?”

Mom said, “You get nice things for those you’re close to, less valuable things for friends further out.”

He nodded. At least that made sense. He asked, like the socially sensitive person he clearly was, “What happens if they’re not equal — if you get a nicer present than you give, or the other way around?”

“Well,” said my mother frankly, “That can be a little embarrassing. It happens sometimes, but we try to be polite about it. I’ve gone back and gotten someone something more, to even up the balance.”

Another gracious tip of the chin, this time probably meaning, “Smart move in a crazy system.”

Mom added, “And, if someone invites you to a party, it’s considered good manners to bring them a small gift, or at least a bottle of wine.” How suitable — in a traditionally non-drinking country.

He shook his head slowly and said, “And that’s not everybody?”

Mom finally laughed. “Well, not quite.”

It really makes you wonder, when you look at it from the outside.

"Oh no, I couldn't take another thing!"
“Oh no, I couldn’t take another thing!”

Blowing scads of money every single year on a bunch of ill-thought-out purchases, mostly for people you hardly know, who are getting inundated with them anyway, to celebrate the birth of someone who told you that love matters more than money … or possibly because it was the armpit of winter, so let’s all go indoors and eat ourselves sick until the sun shows up again … in the desert.

I never sneer when someone uses the terms “religion” and “mythology” interchangeably, even when they’re talking about mine. I know for a fact that it’s simply a matter of perspective.

Back to the tree question.

Our first year in Egypt, we did try buying a spruce and, well, sprucing it up. The result was pathetic even beyond my father’s generous taste for “trees with personality”. It was the quintessential Charlie Brown tree, but slightly taller. The poor straggly little thing was quite overwhelmed by even the few decorations we dared hang on it, and was almost crushed by a single strand of lights.

That was that for traditional trees (and none of us cared for the plastic ones.)
ChristmasTree_NOT
So we had to come up with non-traditional trees.

Each year, my feverishly creative mother outdid herself in coming up with some fabulous representation of a Christmas “tree”, appropriately gaudy and festive, festooned with merry decorations and strung with whatever we felt like stringing it with. (I remember learning just how tedious crafts could be, the year we decided to string popcorn.)

She was especially fond of the stacked poinsettias, perched on benches and boxes at several levels, but I liked every single year’s distinctive creation as much as the others.

I only wish I could remember them in any detail; it was a pleasant part of the backdrop of life, as far as I was concerned at the time. We take so much for granted at that age!

She finally called it quits on our first Christmas in Bangladesh. She was fed to the back teeth with coming up with something every year and decided to “rest on her laurels” — a nice way of saying that she was plumb out of ideas.

I was home from boarding school in the US (there were no accredited high schools in Dhaka at the time) and was still blossoming under the influence of tropical warmth, so notably absent from Massachusetts in December.
woman-with-sitar
I found a red-and-white canvas plant hanger (this was back when plant hangers were made of fabric rather than plastic) and fastened it to the wooden screen between the living room and sun room. A few bent wire coat-hangers later, we had a Christmas tree to decorate.

I even whittled a couple of reindeer out of Ivory soap and fashioned a little sleigh for them to pull out of unlined 3×5 card and toothpicks. Our little elfin Santa perched in it quite happily.

I have no idea how I pulled it off, but it was easy to do at the time.

So, as you can see, my notion of the holidays involved a lot of flexibility from very early on. This probably explains a lot. I celebrate Yule, Solstice, Christmas, and if I’m invited to any other spiritual observance, I do my best to participate with my best manners and heartfelt good will.

Normally. This disease does change things; most obviously, one’s social activities.

All last year, I sent off presents whenever I found them, things I really thought the recipient would absolutely love. Nothing thoughtless and nothing I couldn’t afford, and no waiting and storing and wrapping to deal with. It was a nice change! Not everyone I love got something, but everything I sent was right, and everyone else knows I love them just the same — I simply didn’t find the right gift yet. Next year, it’ll be a different mix.

At home, there was no noticeable festivity, but there was a cozy little trailer filled with love and care. That was all we were up to, and it was fine.

Next year, J and I think, there will be lights and color and a bit of show. In our own little way, we will celebrate anything we have a mind to, and it will probably involve lights and candles and sweet smudge. Whatever we do, it will still be in a little home full of love and care.

Because love is more important than money.

Postscript
Informal International Network of CRPS Bloggers:

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Getting the important things settled

It took roughly three weeks to recover from the move. For much of that time, everything was bathed in a whitish sheen, and getting more than one coherent sentence out at a time was a crap shoot. I’m learning to relax through these times, knowing they’ll pass, especially since I had someone to keep the place cleanish and make sure food landed on the table once in awhile. You’d be amazed how much energy it frees up, having help with the demands of daily living.

It took about three and a half weeks to get internet going at all, and even then, it’s slow. My original workstation was so astoundingly awkward I had to sit sideways on the settee in order to type while hooked up to the modem. Short surf sessions, needless to say, with frequent breaks. Awful.

Yesterday, I pulled apart all of the — wow — truly excessively complicated hookups laid in by the prior owner. I reran wires, relocated cord-keepers, moved the faceplate from its hidden location in the cupboard to the wall where it can conceal horribly ratty holes including the one that the cable goes through, moved the huge coil of excess cable (15 feet, at a guess, of which 3 were being used) off the TV and strung it along the wall… to where I can now sit up comfortably in my bed, power and modem hooked up to my laptop, and noodle away in perfect peace. I put the remaining cabling — 2 pieces of extra CAT5 cable, triple-wire connector cable, ethernet cable, and a random small piece of 2-wire connector cable — zipped up in a plastic bag and shoved out of sight.

I’d take a picture, but there’s nothing to see. Just a cupboard, with a splitter at one end and a single white cable secured to the underside of the shelf, until it plunges out of sight to head off to its final destination.

There’s a bit of extra cable looped and secured neatly against the back wall. In electronics and electrics alike, if the wire is just the right length, then it’s too short. Give it a foot (not twelve feet) of slack, neatly stowed.

The key to routing wiring of any kind is: it should be as simple as it can be, and no simpler. I kept chanting that in my mind as I pulled things apart.

With that thought, I didn’t have to keep the whole puzzle in my head. There was an intake end and two output ends, and the shape of everything in the middle would be derived from necessary functions and the available space. Not, for crying out loud, from the needlessly complicated cat’s cradle I’d inherited.

When I got started, J stood by quizzically as I pulled out the hefty coil of cable, pointed out the rat’s nest around the splitter, and displayed other bits of insulated-wire macrame, each time snorting in gleeful derision and saying, “Amateurs!”

Finally, after he dodged the shrapnel from my 3rd dive into the tool drawer, he got that look that says, “time to get out of the danger zone,” and took off to run errands.

I’m not as fast as I used to be, so it took from noon until sunset to get it all done and neatly stowed. J wandered back as I was finishing up, and was more flatteringly impressed than I’d dared to hope — really wowed. He wasn’t sure why I’d gone to all that trouble to clear cupboard space (which was one nice side-effect, in this limited space), but when he saw the cable over by my new workstation, which is about the most comfortable place there is to sit, it made more sense.

He should be able to watch TV at the same time that I’m working online. To us, this is sybaritic paradise. Bring it on.

Tech note: My internet has to be hardwired, because the radiation from being near wifi consistently makes me sick. The nausea, weakness and racing heartbeat are unmistakeable.

I keep the wires off my arms with pillows, so that, even though the wires originate behind me, they don’t come within a foot of me until they’re almost at the laptop. This is about as good as it can be here. After sitting here for most of an hour, I’m fine. Just fine.

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