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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2013 retrospective

I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
boat-mancallingastern
It’s gratifying to see how I’ve matured as a writer. Most of my posts this year have been solid, practical, and reasonably well-put. I don’t say that as a matter of ego (much), but as a matter of professionalism: if I’m going to be doing this, I should be doing a good job! I’m constantly trying to improve. There is always room for improvement, a fact which I find intriguing more than frustrating.
George_Goodwin_Kilburne_Writing_a_letter_home_1875
The arc of 2013 was interesting: started off very rough, so rough I had to completely revamp my pain rating scale to ignore the question of pain, and go straight to the question of function. And even that was pretty iffy. In retrospect, it was actually pathetic.

I got reacquainted with my body and, of course, my mind, with considerable help from a capable team at the University of Southern California. I felt like I missed a lot of the “coursework”, so to speak, because my cognitive function was so horribly screwy. (In fact, I had recurring nightmares about finding myself in school partway through the term, with no idea what my schedule was and not even knowing what classes I was taking, certain only that I was doomed to failure.)
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Identifying my screwy cognitive function (or rather, dysfunction) as, basically, “acquired ADD” and treating it accordingly allowed me to play some catch-up after the fact.

I moved out of the LA area and in with my beloved – at last! – and rediscovered fresh air and sunshine, which is a great help with the body and mind, I find.
girl on a flat beach kicking a ball high
I worked on what I had learned at USC, (here’s one and here’s another example of using those mental tricks) and, in parallel, I worked with my lawyer on closing and settling my work injury case. (I wasn’t able to discuss that at the time, as it was an open legal issue. Now, it’s not. That’s what we call foreshadowing 🙂 )

To my consummate relief and delight, we succeeded in crafting an offer that was acceptable to all parties, and we finally closed the legal aspect of this case – after almost exactly 14 years since my first injury, 12/1999.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu

Last week, for the first time, I was able to get my medication without needing anyone’s approval. That was a great day.

We have another move coming up in a couple of months, and the idea is to go where I can get all the massage, acupuncture, and chiropracty I need. It’s a much shorter commute to LA, which, I hope, will mean shorter recovery times from those trips.

Moreover, now that I don’t have to argue about my care, I plan to go back to “class” and try to recapture some of what I missed in 2013.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
Halleluiah!

2013 was a lot of hard work, but a lot less brutal than many of its predecessors.

From where I stand, 2014 looks like it’s going to be a lot of work too, but I sincerely hope – I almost expect – to be considerably stronger at the end of it. We shall see.

Happy and painless 2014, with hopes for full remission and possibly total healing for us all! Hey, I dream big 🙂
me-fingers-peace
Postscript:
My partner is becoming better acquainted with what this disease does to me. He wants backup.

I know of two of my compatriots who’ve died of CRPS this week, people I was acquainted with online. The world is poorer without them.
Earth seen from the moon. Earth is gibbous.
So, what with one thing and another, and despite the absurd snafus involved so far, it’s time to finish up my will and legally establish a durable power of attorney for healthcare. Unless I achieve complete remission, I expect my death (hopefully long since) to be attributed to this disease. My executrix knows, and I trust her to see to it. CRPS is deadly, and it doesn’t get nearly enough credit for that.

If you haven’t already done so, I encourage you to take care of these things, too. It’s very freeing, and the conversations you have around it can be useful beyond themselves.

Being better prepared for these brutal and terminal issues frees up a lot of energy for living and enjoying it. Really 🙂
Detail from the Crab Nebula,

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Expletives can be good

I’ve always been a wee bit daffy, so the additional daffiness of pain-brain, combined with the clumsiness of my brain’s shoddy un-mapping, re-mapping, or possibly dis-mapping of my body and physical environment, leaves my daily life simply packed with faux pas and prat-falls of one kind or another.

Mr. Keaton, clearly making a decision in a moment of pain-brain.

These used to upset me considerably, and I’d try to re-normalize the situation as fast as possible out of the combined distress of embarrassment and fear about the brain-invading nature of this disease.

This morning, I turned away from the counter too fast and knocked over the oil-filled heater. Instead of dissolving in humiliation and anxiety, I pursed my lips, finished what I was doing, and pulled up the heater when I had a hand free.

My sweetie J, as usual, said (without the asterisks), “You f***ed up,” with a unique combination of resignation and relish. (Nobody says, “You f***ed up,” like he does. It’s a gift.)

The more trivial the faux pas or prat-fall, the more pronounced those syllables are. “You f***ed up” becomes more emphatic, the more meaningless the mistake.

It never fails to put things in perspective.

Something I’m going to write about, once I figure out how, is The Flinch — the way that years of isolation, vulnerability, and abuse left me twitching in fear with the least expression of displeasure or annoyance in those around me.

Last summer, my excellent hostess L, who has a magical combination of boundless compassion and ‘no b.s. thank you’, was the first to let me know that I’d become a nervous nellie extraordinaire, and helped me start to retrain myself.

When I moved in with J in October, he let me know, after a couple of weeks of me jumping and flinching and asking permission to use my own damn home, that The Flinch was back and needed to take a lo-o-o-ong vacation.

“You f****ed up” is part of his droll approach to that inescapable fact of life, frustration. It’s part of his gift for surviving with his golden personality intact. He says things like that to defuse feelings before they even start to pile up.

I grew up in New England. Do I need to say more? We don’t defuse … what, feelings? We are very intellectual in the way we admit that we even have any. The first few times he told me, “You f****ed up,” I stared at him in shock.
me, looking absurdly shocked
I’m used to it now. I laugh, or agree “I f****ed up,” or turn it around and say, “Yeah, you sure did.”

I can’t do any of that and flinch.

Long ago, I observed that a good partner was one who handed you the way back to yourself when you got lost in the confusion of life. Simply telling me it’s no big deal is not that helpful — I know in my head that it’s no big deal, but the feelings in this over-torqued, dis-mapped brain all charge ahead nevertheless.

J’s way of showing me, by making the bigness of the deal ridiculous, stops that routine in its tracks.

I f***ed up. So what? I’ve got a fresh pot of tea waiting on the other side of that radiator. And that’s what matters! 🙂
teapot-eaglehaslanded

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International group post: Love is portable

The point is this: love is portable. Real, solid love can handle time and distance.

I’ve been saying that for a very long time. I didn’t know, however, that even the formation of love can cover distance. It can cross the globe.

I grew up overseas. Since there wasn’t always a credible, accredited school where we lived, this meant we kids were sometimes away from the family for months at a time. I learned to handle it in a curious way …

I realized, in a deeply personal way, that the same sky covered us all, and the same world held us. If I could see the stars, I felt very strongly that my brothers and parents could see those same stars — if not today because of clouds, then perhaps tomorrow or yesterday — and knowing that we could look at the same stars was a powerful comfort to me.

Beautiful colored view of a star-forming region
Star-forming region in the Magellanic Cloud. Photo from NASA’s Hubble project.

It doesn’t have to make sense, if it works.

As an adult, I got a dreadful disease that requires more research to manage and understand than one person can do in a lifetime. It took me weeks in the Stanford medical library to realize I had something truly rare. Once I was finally diagnosed, it took me months to begin to understand the complexities of what I have.

I also got the internet and a membership in an online pain group … and eventually a blog and social media accounts.

And suddenly, I wasn’t alone.

That first group’s administrator got me through the second major test of survival. (This disease has caused quite a few.) She’s on the other side of the country.

As I’d reached out to her in desperate need, I found someone else reaching out to me in a similar fashion, and she’s a nearly equivalent distance North, in another country.

Then I met the Swede, the Briton, the Belgian, the Icelandic… then Australians, New Zealanders, Chinese, Japanese, more Britons, French, French-Canadian, Dutch, Danish, Mexican, Argentine, and on and on and on. Any country with a health system sophisticated enough to think of, and look for, rare diseases, seems to have people with CRPS.

Let’s think about that for a moment.

OK, that’s long enough. It’s depressing.

The truly international distribution of the disease is almost as penetrating as the international distribution of the internet.
The Earth's winds. Not a bad metaphor. By NASA's Goddard center.
I could go on about the obvious benefits — having someone to chat with at almost any hour is a good one; having such a wealth of perspectives on health, medical delivery, and self-care is another; being able to discuss findings in one country that aren’t yet known in another is a hottie; and, of course, there’s always someone worse off to make me feel humbly grateful for my little all; but these are pretty obvious and probably stated better elsewhere. I’m not doing too well above the neck this week and I have to keep it simple.

This disease has stripped me of many of my friends, my careers (both of them: nursing and software), almost all of my hobbies, most of my strength and stamina, and pretty much every illusion about life and humans that I ever had.

Life can be bleak when it’s this lean. There has to be more to live for than usual, not less, when every day is another stab at the same tedious, repetitious, miserable slog that would make me say to Sysiphus, “Quit your whining, kiddo. Trust me, you’ve got it easy.”
Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
But every connection that I make with my CRPS cohorts makes me stronger. And — how do I say this without sounding mushy or daft — these aren’t superficial connections. I would gladly stop a bullet for my friends, not that that’s likely to happen … but then, it’s easy to find something worth dying for. The trick is finding what, or who, is worth living for.

Any hour of day or night, I can log on and find a soul-sibling somewhere in this world, beyond first-languages and politics, beyond gender and race, beyond anything that might have mattered once.

I don’t have time to ask permission to use names before posting, so my own ethics force me to skip personalization, but the fact is, ladies and gentlemen, you light up my world.
Earth seen from the moon. Earth is gibbous.

When I get discouraged or disgruntled about this tedious, repetitious, miserable slog, and I can’t remember the self-care routines that can help me with it, instead I remember my friends: this one’s Celtic ferocity; that one’s wry wit; the painful eloquence of one; the utter gentle kindness of another; the ghastly spelling over the radiant sweetness of yet another; the shining fragile beauty and boundless courage of, well, all of them …

Every piece I write has to meet multiple tests of integrity before it gets posted: factually accurate, logically defensible, ethically sound, emotionally true (but as the rambling nature of this one indicates, brilliance is NOT a criterion, or I’d be posting a whole lot less.)

That list of criteria has a lot to do with who I think of when I write. It’s this absolutely global, polyglot, brilliant, loving, well and widely informed set of people. Each one of us has our strengths and our weak points, but collectively, we are astounding. Utterly astounding.

I have to live up to that, and be translatable … and it’s an honor and a challenge, every time.

CRPS has taken much, but the internet, mother wit, and a quorum of luck has given me infinitely more. I’m a better being and a better writer because I share the world with people like this … and I’m aware enough to know it.

I have plenty to live for. Screw the slog. Sysiphus, move over and I’ll show you how it’s done.
girl on a flat beach kicking a ball high

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Painting my limbic system blue

I’m not used to having TV. I grew up in Egypt, at a time when you only needed to take off one shoe to count all the TV channels in New Jersey. Didn’t even have to put down your real-sugar-sweetened soda to count the channels in Cairo — none of which were in English.

arabic-tv
This delightfully expressive image is from wn.com

J is a more normal American, so between his restoration of normality, and my sense of novelty, we’re delighted to have TV again. His ear for BS is too keen to make sitcoms bearable, so we default to true crime, amateur survivalist, and judge shows, where people really are that idiotic and don’t have to pretend.

A couple of days ago, we stumbled across a show about felons on the lam. I think that was on one channel or another from noon to bedtime, except for the news. It was strangely entertaining, seeing how people fool themselves into believing the false lives they create.

For the past two nights, I’ve woken up in the wee hours from dreams of having done something I knew wasn’t quite right, then it turned out the feds really didn’t like, learning that they were displeased, then discovering they were after me (a mortal issue, since I wouldn’t survive a week in prison), then finding myself hiding and running and trying terribly hard to be clever enough to survive in my decidedly impaired mental state.

This morning, I woke up feeling, quite vividly, as if my limbic system — that set of tiny, nervous parts clustered deep in the primitive brain — was huge, red, and pulsing with overstimulation.
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I’m no fool. I know how to deal with imaginary brain inflation.

I wrapped a band around it, colored the whole thing a pleasing blue, and gently and persistently cooled and prodded it down to a more reasonable size.
brain_limbicsystem-deflated
I also massaged the point between my eyebrows that my old acupuncturist used to needle when I was too jumpy to let her stick sharp objects into me.
acupuncture-yintang-institutyinyang
When I was calm enough to do my brain exercise that stabilizes my ANS somewhat, I worked it like a plowhorse.

Once I had done that, I was actually capable of noticing how tense my system feels, and could mentally reach the lever that makes that inner spring gently unwind.

Then J brought me a nice fresh cup of hot tea in bed.

mug-drwho-steam
…Oh, heaven!

Then I read this out to him, and he laughed out loud.

Now, it’s a good day.

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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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Half-glassed — a metaphor for flexibility

We all know the old trope: half full, or half empty?

I worked at Borland, which means, I worked with highly capable engineers who were accustomed to doing things right. I once got a very friendly, but very earnest, lecture about the half-glass phenomenon: the point is not whether the glass is half-full or half-empty.

The problem is, the glass was not designed for that amount of water. You either have to fill the glass,

… or use a vessel that’s designed to hold that quantity.

The whole half-glass thing drives them crazy. It’s not a matter of attitude, it’s just bad design!

I love engineers. There’s something adorable about the way they storm the gates of Accuracy, convinced it’s the same as Truth.

At first glance, that attitude looks silly at times. On deeper thought, they’re usually right.

I was thinking about the engineering approach to the half-glass issue, while my subconscious was still bathed in reflections on Rosalie.

I realized that the engineering approach is exactly what those of us with crippling disease have to do: our glasses, our outward lives, were designed to hold a lot more than we’ve got right now.

We either have to build up what we have to put into it, or we need to use a smaller glass. A significant disparity between what our lives can hold, and what they do hold, is depressing. They need to match up better.

Rosalie alternated, and I think all of us with chronic disease (and determination) do that as well. Sometimes we can build ourselves up, and expand what we can put into that glass; sometimes we adjust our expectations and commitments, making the glass smaller so that the contents fit.

I like this image, because it reminds me that I can do either thing. When pushing against my limits doesn’t work, when I really can’t get another drop of water into that glass, I can pull back my expectations and switch to a smaller glass.

By now, I have mental cupboards full of wildly mismatched drinkware – a glass for every occasion, for every level of function so far.

The one on the right is for when my hands don’t work.

“My cup runneth over” takes on a new meaning now, doesn’t it? When it does, I’ll reach for a bigger glass.

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Rosalie’s gold

I met Rosalie about 15 years ago, when she put me up for my dad’s second wedding. I fell in love with her on sight, when she threw open the door and bathed me and my brothers in such warmth and delight that even awkward, dorky I felt completely welcome in her life.

I stayed in the little den next to her bedroom, overlooking the pool. Her house was built in the 50s, when her neighborhood was inexpensive and remote. It has an endless view across the whole valley of Los Angeles.

She was a spring chicken, only 83 years old. She had already had two back surgeries to fuse vertebrae, and scooted around – with characteristic energy – in the distinctive crow-backed shuffle of post-fixation chronic back pain.

About five years later, my CRPS journey started. Rosalie was my first model of how to handle increasing pain and disability with a degree of grace and poise. Whenever I came to visit my stepmom or her mother, I’d see if Rosalie’s and my schedules would allow a visit. In all those years, I don’t think she failed to raise a smile more than once or twice, despite some brutal trials.

She had several more surgeries, implanted devices, physical therapy, and she swam laps in her pool whenever she could possibly manage it, inviting whoever came over to swim with her to have a glass of wine and tonic water (or gin instead of wine, for my stepmom) afterwards.

She kept love in focus: for her offspring and her dear friends, she had a seemingly bottomless well of love and regard, regardless of the vicissitudes of life and relationships.

She was always herself: whatever her opinion, and whether or not you agreed with it, she would let you know. No energy and no words were wasted on making things seem nicer than they were. You never had to wonder what her agenda was. And she managed that without ever being pissy or the least bit mean. Conservation of energy, including emotional energy, is a big issue for pain conditions, because pain is so exhausting; she didn’t waste a drop.

Yet she was famous for the radiancy of her outlook, not to mention of her smile. As soon as she had answered the question, “How are you?” with customary honesty, she visibly put that aside, turned her bright eyes on her visitors, and got them talking about more interesting things. She kept her focus where it belonged: on the rest of life.

As I said at her memorial service yesterday, she always looked for the nuggets of gold, whatever else was going on. She always looked for a way forward, whatever held her back.

If you’ve read this blog for any length of time, you know that I hardly ever write about anything until I’ve found the nugget of gold. You know that I always look for a way forward, whatever holds me back.

I can find this in myself, in large part because Rosalie gave me a living, breathing, occasionally querulous but never unfair, always loving, always real example of how to do it. I need those living models. I can learn only so much in theory.

This is real life. And sooner or later, it ends. I’m slightly bowled over by this intensely personal realization that the true radiance of a life can outlast the grave. Rosalie’s radiance is with me still, reflected off these nuggets of gold.

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Unexpected adventures with the rent

Yesterday I did 10 minutes on the treadmill. Today, I walked almost a full mile of this hill in 18 minutes and 16 seconds — no shuffling, no stopping, lots of striding, not much slowing down. Woo hoo!

I’d better start scouting trails and footpaths around here. I’m going to need more options soon.

As I calm my breathing in preparation for my autogenic exercise (more on that later), I have to admit that I had some angst to work off, and that probably had something to do with the pace I kept up.

Last night, I realized I’d lost my ATM card. I have one bank, one card, and one checkbook. … Er… had…

The card was gone.

The checkbook was empty.
I’m fresh out of cash.
And rent is due.
Suuuuuuuuuucks.

Welcome to My Brain on CRPS!

To be completely apt, these should be thoroughly scrambled.

I went to the landlady’s bank to see if we could do a wire transfer.
Turns out they’re closed on Wednesday.

I called a different branch and asked if they could.
No, not without an account of my own.

I asked if I could open an account with a wire transfer.
After 20 minutes on hold, it turned out that I could only open an account with cash or a check.

Rather than repeating myself, I said, “You realize that does me no good.”

I called my bank (a local savings bank) in Massachusetts. They were pleased to tell me that someone had called in my missing card and it had been cancelled promptly. 2 weeks to get another one.

They couldn’t do a wire transfer because they’re rather old-school, and I hadn’t gone into a branch and filed the appropriate form in person.

But — and this is why I stay with them — they didn’t end the conversation there.

After exploring several possibilities, which turned up as dead ends, I thought of Cougar, one of my angels (a word with specific meaning.) He bears a passing resemblance to a slimmer and semi-shaven Jerry Garcia..

A recent photo by yours truly.

But, more importantly, he takes my mail. Why?

In case you hadn’t noticed, I move around a lot. (I’m looking for a place that has an affordable cost of living, good soil, first-rate medical care, and no extra pollution or radiation, and one day I’ll find it.) I’m here in California for awhile for medical care, BUT, no matter where the rest of me goes, my mailing address remains the same.

The benefits are tremendous:

  • Not only is my steel-sieve brain spared the affliction of changing my address every time I move,
  • Not only are my ridiculous paws spared the trouble of wrestling with envelopes and handling papercuts (a task which cougar claws are apparently well-adapted for),
  • But my memory and cognition issues get a real break from having to deal with pieces of effing paper. I have developed a mental block around dealing with pieces of effing paper, so I get them into softcopy as soon as possible.

Or, rather, most of the time, Cougar does… Because he doesn’t just take in my mail, he scans it in and sends me softcopy of anything I ask him to open. This means I have COMPLETE RECORDS of everything I need to keep track of.

He’s the Magnificent Mail Mage, and I’m grateful. Take that, Pain-Brain!

He’s my current Cash Carrier, now. The management staff at my lovely little bank have agreed to work with him as my designated agent, and will provide him with the cash I request — which he will then send to me via Western Union, so I can take care of business here. And with it, I’ll pay rent, open a bank account locally, and try not to let this happen ever, ever again.

Meanwhile, it’s time to get my heart rate down from the clouds and that strangely full feeling out of my tissues. Easier said…

While the excitement is over for the moment, I have a vivid memory of the stress-tracking line on the biofeedback machine, and how bloody hard and bloody long it takes to get the level to drop after it goes up over something as small as one giggle.

This was no giggle. In fact, it was several hours of no giggle. None. A totally giggle-free period.

I found it stressful.

The walk helped. And I hope — when I find some good forest trails to explore — to spot some wildlife.

Meanwhile, I’m off the hook for laundry and shopping. It all has to wait until tomorrow. Bonus!

Everyone should have a little cougarosity in their lives…

 

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Marathon — second thoughts

I’ve gotten some interesting responses to my marathon proposal, some of them very worried, bless their excellent, loving hearts. I feel I owe some explanation.

My tiny handful of fellow “imps of the possible” are all for it, completely understanding the uncertainties and sidetracks and possible (even probable) different endings in store – and knowing that it’s the reach that’s important, that spreading