Not much scenery after dark

Usually, or at least so far, I’ve ended each day with some coherent sense of things. Not today!

Perhaps that’s because I spent several hours in the middle of it, struggling with a terrible wireless signal and time sensitive need to book a flight. My sweetie is flying out to meet me and help with the rest of the drive. How cool is that?

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The last-minute logistics have been horrible, but so far, with much persistence and lateral thinking, things are shaking out. Finding a safe place for his dog for a week was probably the most worrisome, but an online search turned up Canine Energetics.

I spoke with the owner, Sean, who struck me as extremely decent, sensible and accommodating. The facilities sounds like dog heaven. I have every faith in her ability to play well with others, and she’ll probably have as good a time as she can away from her human.

I pushed on for an hour past dark, and realized that somehow I’m almost (not quite) a whole day ahead of myself. This means I have time to pull the car apart, make it easier to manage getting what I need, and clear the entire front seat (including the foot well) for another person. Not a trivial task!

I also have a ton of paperwork to catch up on: finding a suitable ISP, nailing down the design for the website, and filing the paperwork for registering “CRPS: Art & Spirit” as a tax-exempt nonprofit. I’ve gotten much-needed logistical help, so at this point, the next tasks are approachable. I’m grateful for all the help I get, and the help I get for this project is more important still. We’re going to have a “gratitude” page, where we can publicly thank those who will let us, for the help they give 🙂

Now, all I need is a web geek who’s reasonably up-to-date on the technology and knows how to design an accessible page. Suggestions…?

Southern Illinois was exquisite. It’s so pretty and so shapely that I can’t wait until Hollywood discovers it as a shooting spot. I knew I couldn’t do justice to the shape of the land, so I cheated:

Somehow, at least along Interstate 70, Missouri isn’t quite as nice, and neither was Indiana. There’s definitely a difference.

Y’know, I feel a lot safer, noodling around by myself, than I did in the coastal Northeast or pretty much anywhere in California. I still keep my word to my sweetie, though: locking all the locks, no hitch-hikers, and — it still cracks me up, but I do it — be careful who I talk to. There’s so much more to human nature than what’s on the surface.

Off for Epsom bath. Incidentally, these are not a “Calgon, take me away!” kind of bath. But I think I’ll talk about that another time.

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Re-learning how to drive

I’m either half a day ahead of schedule or half a day behind, and I’m honestly not sure which. It’s roughly another 5 days to Denver, and with my sweetie’s troubles slowly and expensively resolving, it’s probably best not to try to rush, but to let things unfold.

Mind you, an hour’s reiki this morning might be helping me think that way.

Badly as I want to be there already, snuggled up to him and brainstorming, here I am …

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Between Richmond and Centerville, Indiana.

My room has a fog of mildew which stopped me on entering, but I paid before asking to see the room, so I’m stuck. I can’t remember where the AC power cord is for the car’s air filter, though I may have tossed it in a burst of mindless efficiency before leaving.

The window is wide open while I do laundry on the other side of town, so we’ll see if that makes enough difference. If I wake up brain-dead, I’m sure you’ll hear about it.

Despite good energy and good progress, I decided to reef it in and stop early tonight — largely because I’m out of long-sleeved shirts, and needed to save arm-time for dealing with that.

I stopped here, precisely, because I had mail forwarded here to me at General Delivery — a system that actually seems to work. It included my permanent Massachusetts driver’s  license (which might be handy after the temporary one expires) and a really lovely card from one of the really lovely people I’ve met on this trip. A wonderful cherry on top of a rather good day.

It occurred to me that I haven’t discussed  my accommodative strategies much. Here are a few things I’ve done, redone, and learned on the way:

Grabbing the wheel

Those of you who know CRPS well know that vibration is absolute hell, and a steering wheel is a big vibrating thing that’s made to press against the weakest, most pain-frazzled tendons in my entire body. So that had to be dealt with.

I’ve learned, from all my adventures with tools when I lived on the boat, that no amount of padding will make up for harsh hardware.  So buying a vehicle with the lowest possible level of wheel-vibration in the first place was a major consideration.

My car, Henrietta, is a Toyota truck:


… but it’s built on a Camry base:

This means it has a much more forgiving frame than trucks and truck-mounted SUVs (though it can still tow 5,000 pounds!) and it handles the road very gracefully.

I’ve learned through many years of athletics that gel provides the cushioning my body likes best. So that was the next thing to go on:

That’s extra-thick gel-padded bicycle wrap on the steering wheel.

(And, incidentally, that’s the driving grip I use half the time. Holding the cover, rather than the wheel, nearly eliminates vibration altogether, and it’s very easy to grab the wheel if I need to dodge.)

Years of nursing and my own experiences with increasingly, um… responsive skin have made me a HUGE fan of good wool. It breathes even when wet, pads even when squashed, and if you keep your eyes open, you can find wholesale prices on new sheepskin (– and get sturdy sweaters of cashmere, merino, or alpaca for $5-10 at the right Goodwill stores, but that’s another post.)

In Massachussetts, I live near the Sheepskin Outpost on the Mohawk Trail, and I lucked into a sale there. That got me:

– The steering wheel cover, to provide more padding and keep my hands off hot rubber;

– The seatbelt cover, to keep the edge of the belt off me and keep the skin on my shoulder and chest aired;

– The seat covers, which I wound up getting for half of wholesale, because they’d just bought the stock of a company that went out of business and had more inventory than they could afford to store.


Boy, did that ever work out for me!

Covering my can

This is about traveling with disability, so here’s some physical reality.

I started megadeath antibiotics a few days ago, and the first symptoms are making themselves felt. Kefir just isn’t enough to save my skin.

My very favorite brand. I’m getting nothing for saying so, but I’d like that to change 🙂

Also, I’ve really been having trouble getting the circulation in my left leg to behave.

Today, in the middle of my day, I had a brainstorm that would minimize the reduction of circulation to my legs and maximize airflow to my antibiotic-ravaged sit-down.

I swapped my underpants for my white silk long-john bottoms instead, and decided I could just wash out the silk each evening and hang-dry it overnight. Besides, the extra layer kept the chill from cutting into my leg every time I opened the door.

Tonight at 6:22 pm, my left leg is feeling better than it did at 2:22 pm, when I made the switch — despite a couple of hours in the car and far too little activity. Who knew such a little bit of material could make such a difference?

And I’m happy and relieved to say that the parts my undies have to cover are doing better, too. I had no idea that white silk was so healthful.

No more elastic around these legs. It’s too bad, because I’d just stocked up on undies. But of course, I got them on sale. It could have been worse.

Gratuitous toilet humor…

I stopped in a gas station that had the kind of bathroom I grew up thinking of as a gas station bathroom. It’s not chair-accessible (in fact, there’s hardly room for a standing person to turn around in) and the tile might be original with the building.

However, in a totally novel approach to graffiti, this gas station found a new use for the wrongest possible shade of brown paint:

There’s really nothing to add, is there?
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"Plan" is a 4-letter word

Last night, in an effort to give my autonomic nervous system a chance to calm down, I turned off my lovely hostess’s wifi while I slept. Eventually, I did sleep, after several hours of meditation.

Why the insomnia?

People change with time. My sweetie is discovering that in the harshest way. A friend of 20 years is sinking into the pit of addiction and her transformation has put him at considerable risk, due to the company she now keeps and what they think of him.

I hadn’t heard from him since midday yesterday, and since we had agreed to call twice more that day for different logistical reasons, not being able to get hold of him was deeply worrying.

I followed my inner prompting to head away from the coast (where another storm is heading in, this one bitterly cold) and get to Cleveland, with the option of flying out from there to get to California to do whatever was needed for my sweetie.

I took off at 9:30 (woefully early for me) after plugging the router back in and forgetting my jacket — which my lovely hostess chased me down to my parking spot to return.

Worth a thousand words

Dr. Goyal and White Plains Urgent Care were a small parking lot and two buildings over from where my nav device had placed them yesterday. /sigh/

She was saddened and intrigued by CRPS, making notes in the margins of my sheet.  She was initially somewhat dismissive of my description of the bite, because this morning it was being coy, hardly red at all.

I said, “I knew I should have taken pictures. Let me draw you a picture.”

Despite my having explained its vacilating nature clearly, I know from long experience that they need to see it to believe it.

So, using the big white paper sheet they have you sit on, I sketched the bite when I first noticed it, half a day later, a day after that, and so on. I wound up drawing a series of concentric circle patterns, growing, then shrinking, then growing, then shrinking.

I finished by drawing an arrow from top to bottom and saying, “Would you trust that pattern? Because I wouldn’t.”

I walked out with a prescription for 3 weeks of doxycycline and having promised to follow up with my CRPS specialist.

I know it’ll take 3-6 months just to get my insides back into any kind of order. Could take up to a year. I had a bad feeling about this bite, so I’ll consider it time well spent.

 When people talk about Mercury Retrograde, this is what they mean

 While I was in there, my lovely hostess texted me: “Internet still not working – what to do?” An hour (and a lot of non-Mac behavior from her Mac) later, my best answer was, “Call the cable company; it’s a hardware problem.”

Doing unsuccessful telephone tech support for one dear friend behind you, for a problem you might have caused, while driving at highway speeds on strange roads, when you’re sick with worry over another dear friend ahead of you, is not something I would recommend. In fact, now that I can check it off my bucket list, I think I’ll try not to do it ever again.

Her life depends on the internet even more than mine. It’s not optional. I wanted to whip around and ride back to save the day … but for the lashing in my brain to go on, and the fact that her hands work better than mine and I know the interfaces by heart, so there was nothing — in practical terms — that my presence would have added.

I had a fierce feeling that, if I could get far enough away from the tangled vibes behind me, both of these problems would resolve themselves.

So, with solid logic on one side of me, and crystal-clear intuition on the other, I charged ahead.

I crossed the New Jersey/New York state line. Then my lovely hostess texted me to say that she had found a second loose connection — and that the internet was now working fine.

How to search for someone who’s gone missing

I crossed into Pennsylvania. I’d been stopping every hour to stretch and breathe, but I couldn’t stop mulling my sweetie’s situation, so I pulled over to start the legwork of searching.

Here’s the drill. The order varies depending on what you think the situation is, but, when someone has gone missing and you fear the worst, I find it’s very soothing to rule out the worst as soon as you can bear to:

– Contact the police in the area you last knew them to be in. (Use the non-emergency number; the goodwill is worth the effort.) Have they had any dealings with that person? Car accident, fight, anything? One of the first things cops do is ask for ID, whether it’s appropriate or not, so they’re likely to have records of even minor events.
– The police can connect you to the morgue. Rule out the worst, breathe a sigh of relief, and move on.
– Call the hospitals.
– If they aren’t admitted to the hospital, ask for the Emergency Room admissions, which may be a different number.

If all of those turn up negative, count your blessings and wait for them to get back into signal range or to realize they let their phone’s battery die.

First, I surfed the police logs to see if anything was reported. If there was any violence, then it’s a small enough town to turn up on the online blotter. Nothing matched.

I mulled whether it was worth calling the non-emergency number to see if they’d had any other dealings, and I decided to go straight on to calling the hospitals, on the grounds that any police involvement in the situation would be blotter-worthy.

Then the phone rang.

And it was him.

I really think there were gouts of steam poufing out of my ears. My eyes closed and I dropped against the door, so I’m guessing, but it felt like it.

He was slightly shaken, but intact, and maybe beginning to really “get it” about how some people change.

He told me emphatically to be careful who I trust, not to pick up hitch-hikers, and be careful who I talked to.

Naturally, I promised him that I would.

Just for the record, I have really great friends who always have my back to the best of their ability. I am one lucky human, and I know it.

Kylertown, PA (don’t blink… No, really,  don’t blink, or you’ll totally miss it)

After sorting out some logistics and stopping for a quarter of hot roasted chicken (definitely a local bird — tasty!) I came to the sinking realization that Motel 6 doesn’t go along I-80, and I can’t afford the ones that do.

Garmin is no help, because they just list the upper scale lodgings. Lots of B&Bs, but no cheap little roadside doss-houses.

I don’t need much, and can afford slightly less. It can be a problem.

I stabbed “Kwik-Fill Motel” on my phone’s map. What the heck, truckers know a thing or two about cheap dossing.

I spoke to a woman, which was reassuring; when I blew past the exit (# 133, if you’re curious, and it’s right after a wooded curve) she did a swell sales-job that convinced me to drive the 10 miles to the next exit and come back… and it turned out to be a good decision. 

This place has been in business since the 1970’s and has only raised its prices $10 since then. It skips the kitsch, thank goodness. My decent-sized room has the tasteful modicum of furniture with classy Colonial lines, with just the occasional bit of ’70’s carpentry or carpeting peeking around the edges. Decoration and color schemes are quite tasteful, for a motel, and — most importantly — the heater works.

A total find.

Next time you want to come to the wilds of Western Pennsylvania, you might as well plan an overnight at the Kwik-Fill; you can’t do any better, but you could do a great deal worse.

The only downside is, I wasn’t prepared for Pennsylvania water. I’d intended to bring a case of bottled for PA, but it was just like I didn’t have time this morning.

I’m going to run the bath and the fan, and give the whole thing time to clear the copious chlorine. If it doesn’t smell bad after that, I’ll have a nice bath at the end of this roller-coaster day. If it does, well, I’ll let it go and be grateful for the rest.

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Peripatetic Stealth Gimp

Last week, I was in California, doing good and necessary things.

This week, I’m in Massachusetts, doing different necessary things.

I have to find a doctor in LA (long story) and soon will have to be there.

Meanwhile, I’m tired of being this sick and am determined to interview some patients and practitioners, make the time to put together what I’ve learned, and see what progress I can make against an impossible illness; this will probably, though not certainly, put me back in northern California for a bit.

I have a cat waiting for me in LA, a friend waiting for me in San Antonio, a family waiting for me in Vancouver, and the home of my bones in the Berkshires.

It’s very quantum: I can be sure of where I am or where I’m going, but not both.

CRPS, though, I intend to sort out.

My lovely Henrietta is going to get a double coat of wax this week. It’s nearly the last thing to do before I can — carefully, slowly, gently, mindfully, in short bursts, with at least an hour each of meditation and exercise every day — begin the long drive.

I just hope the gas prices go down. I’m going to be traveling for awhile.

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"Invisible disability" gets an upgrade

I was in a van with two friends of mine, a man and a woman, both of them using wheelchairs. We were looking for parking.

She said, “I hope I have my parking pass.”

He said, “Well, mine’s in my car, so if you don’t, we’re out of luck.”

I said, “What do you mean? I have one in my purse.”

She said, “Oh, yeah. You’re our Stealth Gimp.”

Best synonym for invisible disability EV-er.

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After the burn

JC said, “Let’s take a ride.” This always precedes eye candy, long silences punctuated by little “wow” sounds from me and gentle wafts of quiet satisfaction from him. So I said, “Sure, babe, wherever you want to go.”

We went up towards a ranger station I’ll redub Indian Richard, and the vulgar among you can go wild. (My very Ute friend says the correct name with a certain wry satisfaction.) The road goes through a national forest that had extensive fires. I’ve seen quite a few of those on TV in my California years, and I’ve seen smaller ones up close — the forest fires in the Santa Cruz mountains always get controlled pretty quickly, as these things go.

But with miles and miles, and none of it belonging to anyone, and access so hard — these huge forests are sometimes left to burn.

Caveat emptor: I might have to wax lyrical. There was no way a photograph could do any of this justice, especially from my elderly little iPhone, so I’m left with words alone to draw these pictures with.

Here’s what the California coastal ranges look like normally (except the redwoods; those are temperate rain forests. The inland highlands are much drier, almost arid.) Tawny pelts of grass stretch over the flanks of hills that roll, or sometimes tumble, over knuckles of exposed rock — mottled grey, often fractured in angular planes, puzzle pieces of multicolored lichen covering them, incredibly decorative in the wild and apparently pretty useless for anything commercial, so they’re left to mark turns in rivers and roads.

Those wide tawny pelts are speckled with live-oaks, dark acrobatic limbs twisted in double-jointed abandon, leathery little leaves shaped more like holly, so dark a green they look nearly black against the lion-colored hills.

Occasional stands of cottonwood soak their feet in little streams between the hills, such a bright lively green that they look fey and fresh, too tender for this terrain — but there they are, just the same.

Manzanita twists long dancer’s limbs in dark red tights against its own rich green foliage. It clutches clusters of indigo berries like little nosegays. I can’t get enough of the manzanita. It grows everywhere: in the chapparal, in the woodland, on the edge of the dry lands.

Up on the wooded slopes, jack-pine and maple grow side by side, the jack-pine in big fat perfect shapes, long swooping arms holding long swooping needles. The maples are petite by comparison, appearing to shrink shyly in the shadow of the large-gestured pine.

The woods are never as dense as the Eastern forests, so undergrowth is rife. Poison oak (my personal favorite, hah! ;-p) and scrubby whatnots are simply everywhere. You get breaks of sweeping grasses or areas buried in pine needles hiding roots and vines underfoot, but there’s always something to stumble over.

And that is what first penetrated the overall stunned feeling of seeing such huge forest fire remains up close. The ground was utterly clear. It was covered in a perfect layer of… nothing. There was nothing underfoot. Nature didn’t even bother with a broom. There was nothing but neutral surface, a sort of grey to greyish beige, a noncolor in a monochrome land. Oddly, there were huge astrocytes of white among the grey, straggling stars splashing the grimness with a weird dash of style.

Everything was shades of grey and beige. The trees that had burned the hardest, had been burned to their purest form: no decoration, no hiding, just pure form. More beautiful than the hardest freeze of winter for absolute pared-down revealment. Their trunks had the color and sheen of raw graphite. The stark black of their flayed branches against the cooling sky was absolute.

The jack-pines’ branches and surviving needles told a harrowing story of scorching wind and searing holocaust, limbs twisted against themselves and needles curled into cupped hands as they tried to escape. The live-oaks that still had leaves clenched them into little fists at the ends of thier branches.

But already there were signs of the future creeping up on the recent past. Deer paths and rabbit trails shot through the bleak perfection, loud fawn-colored ribbons laid across the grey velvet. Where maples and the occasional sumac had survived the first blast of heat, the leaves withered afterwards and dropped, golden, on the clean ground, a touch of warmth and — though I saw that they were really just dead — looking exactly like the promise of life.

And then there were the anomalies, those random moments of wildfire charm: a perfect green-and-red-and-indigo manzanita surrounded by total monochromatic devastation, radiant and queenly though no more than 5 feet high; a green maple gracing a stand of tortured jack-pines with unshattered elegance.

The maples consistently kept their heads; somehow, surrounded by much taller jack-pines totally scorched, it seemed they had lifted thier heads and one or two limbs out of the way, and somehow were likely to have kept a bit of green there.

At the last moment, just as we crossed from the last great burn into untouched woodland, a flash of silver — not grey, but sparkling, living silver — danced into view. A fat and sassy squirrel pirouetted on a twig too small to hold it, flirting and twitching in lively activity, a visual shout of life on the edge of the stillness.

I’m still digesting. Both my friend and I have been quite harrowed recently, and he might have chosen that road for a number of reasons. It’s an interesting lot to think about, and the images are burned, as it were,  into my mind. I only wish I could do it more justice. Nature at her most natural is far beyond this language, though.

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Regen at Black Butte

I came to CA for a leisurely camping trip with my sweetie. (One can have enough of the “long-distance” in a “relationship” until you have to cut some slack on one or the other. I chose the former.)

I landed in the fiery heart of an explosive crisis in his life, but one thing that nursing and 10 years of serious illness have taught me is, other people’s crises are not mine. It frees me up to have all the empathy in the world, without losing my own balance. (Much… :-))

Our idyllic excursion into nature with nothing much to do has turned into … an idyllic excursion into nature with nothing much to do, but a lot more to talk about.

We wound up at Black Butte Country Store and Camping, …

The store as you approach through the intersection.

…run by his old pals Tom and Margie, a charming and hospitable couple who came up from the East Bay – so they know damn well they’re onto a really good thing here. Margie’s smile just won’t quit, and that kind of says it all.

We’re at the juncture of Black Butte and the Middle Fork of the Eel River, a far corner of a protected and remote swathe of the simple life called Round Valley.

This phone is getting old, but it still shows how blue the sky is.

We’re in the shadow of the Mendocino National Forest, recently the site of a huge wildfire. You can see where the charring and scarring stop at the top of the hill right across the street. A huge sign in front of the store thanks the firefighters in letters over a foot high.

Everyone here is REALLY fond of the fire service now.

 There’s very little cell signal (neither JC nor I get phone-joy), only a few radio stations come through at all, and the only wifi is at the store run by the campground owners, a 5 minute walk from the site. This is a huge bonus: the low levels of EM radiation are letting me cope with the stress and the dietary compromises perfectly well. 

Good for neurons and what they control.

I even drank half a soda yesterday, and hardly felt a thing… In other times and other places, I’d have paid for that for 3 days. At least.

The grill (closed on Wednesdays) serves fresh local natural beef and incredible salads. Really good greens with just enough dressing and the lovely smokey meat of your choice. The convenience store is pretty small, but the coolers are packed with everything from coconut water through Naked juice to conventional sodas all the way to the rankest beer you’d hate to find.

They’re perfectly happy to make me a gluten-free sandwich wrapped in that lovely lettuce.

You can’t see the sandwich, which covered the whole plate, cuz I ate it.

On our first night, the full moon rose directly over our feet, waking us both out of our first doze to stare at the radiant spot on the tent wall in bleary wonder for at least a minute, wondering who turned on such a damn great light at that hour.  JC finally stuck his head out and told me what it was, and we both had to laugh.

The air is absolutely pure. Each evening, the spotless sunset gets punctuated by exactly one contrail, a screaming streak of orange across a melting sky of peach, green and sixteen shades of blue.

Since the moon rises later and smaller every day (and as we get caught up on our rest, able to stay up past dark!), last night we got a full hour of gazing at the Milky Way and the million million stars I never get to see.

Photo collage: TwTunes at www.digitalsky.com

Casseiopea and the Big Dipper wheeled overhead with a-a-all their lovely autumn cohorts, as familiar and ever-present as old friends.

At the time of our visit, there was a breathtaking piece on show from local artist (and Santa  Cruz transplant) Lynn Zachreson. The link goes to her web page but, of course, online photos can’t do justice to her brush control, delicate textural discrimination, or authoritative use of color. Look her up; it’s worth it.

There’s a gorgeous swimming hole a few minutes’ walk up the pike, sinking deep around great boulders of white chalcedony. Healthy-sized fish nibble your legs if you hold still long enough, and the water is perfect on one of these bakingly hot afternoons.

The water is a lot bluer once you’re in.

JC says the weather can change in a minute here (this old New Englander reserves judgement) but we’ve had a glorious run of unseasonably hot, clear weather with deliciously cool, clear nights.

This illness is hugely responsive to nutrition, air quality, and man-made radiation. In most far-flung places, the produce is dodgy and tends to look (and taste) second-hand; you can’t get good food and good air waves without a lot of advance planning and a huge cooler.

This place was a total find, and for those of you who really care about things like air, food and EM smog, it doesn’t get much better than this. Especially at these prices.

It’s absolutely outstanding.

And you can bring your horses! There’s a black and a bay here who’ve kept us endlessly amused.

Being around JC has always knocked back my pain and increased my strength since we first met, before we ever thought of getting together. He’s obviously got his own electrical field or something. Between his company and the clear and deliciously benevolent environment here, I’m stronger after a few days than I’ve been in some weeks.

I’d thought of this as a side-trip to squeeze in, before I got on with my serious healing junket… but it’s looking like an ideal start, instead. I wound up landing on my feet, and I am grateful.

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The Hot Cocoa of Peace


I’m thoroughly enjoying a cup of cocoa made by an excellent friend, warmly mulling another cocoa and another excellent friend.

C and I met at the American school in Cairo, Egypt, in the mid-1970’s, and I share this story with her kind permission. I had just moved there and she had just come over from the German school, where she had spent her first five years of school. Her mother was English, a working artist, and her father was American — although his English accent seemed slightly stronger than his wife’s – teaching drama and English at the University.

C told me something which, in this era of rising intolerance and martial rage, gets more interesting all the time…

At the German school, they had cocoa with their morning break. At that time, at least, German children took their cocoa without sugar – more like coffee, really, but milkier and easier on the adrenals. But, every day at 10:30, one of the staff would bring out, on a little silver salver, a sugar bowl and a small spoon, just for the one child who was used to having her cocoa sweet.

It’s a simple story with a lot behind it.

This was less than 30 years after Germany had succumbed to two bitter defeats — an internal one, when they collectively gave in to a meme of hatred and intolerance; and an external one, where they were eventually crushed — despite superior technology and better training — in an epic war.

We lived in a country that had been one of the pivotal battle-grounds of that war. Think of Rommel, the Desert Fox, or google El Alamein.

This one child was the product of their two most bitter recent enemies.  And they were both nuns and teachers, second only to nurses in their capacity for passive-aggressiveness, suppressed rage and murder with a smile.

The way they handled it was this: they taught her the same, scolded her the same, cared for her the same, made accommodations as she learned the language but expected her to finish her homework — and, every day, brought sugar on a little silver salver just for her, so she could mix exactly the right amount of sweetness into her cocoa.

It could have been seen as coddling, and there’s no question that C enjoyed the little feeling of specialness. It could have been seen to spoil her. Instead, it was a demonstration of — well — not just tolerance, not just accommodation, but of real graciousness and decency, a touch of comfort in a foreign environment, and a tiny gift of autonomy inside the regimented life of a strict school.

As it turns out, it was a lesson well learned, because C has always been one of the most gracious and utterly decent people I’ve ever met, while being wholly individual.

She’s also the most adept amateur historian I’ve ever even heard of, one who shows the real sensitivity and love in the word “amateur.” Hard not to be, growing up in such a place, with parents grabbing at life with both hands, as hers did.

But it’s hard for me not to think of an intelligent, middle-aged Teuton with an excellent memory, bringing a little Anglo girl sugar on a salver, without any fuss… and wonder what that added to the mix.

I sit here, wreathed in gentle steam, and wonder what it would take to share my cocoa with all this anguished world. It would be a better place indeed.

And I’d be happy to bring sugar on a salver to anyone who likes it.

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Trapeze act

I’m preparing to start off on a cross-country odyssey to interview certain people who have CRPS and manage it particularly well, and incidentally hit some hot springs and massage methods along the way, since that (besides nutrition) seems to have the biggest effect on me.

Let me restate that. I’m about to move my simple little life (the whole suitcase) and complex little body (11 bottles of twice-daily pills &  supplements, dietary requirements that would make an allergist blench, and let’s not think about the wildly variable pain, confusion or autonomia) into a rather pretty vehicle and make my way across the entire continent (probably in increments of one hour at a time), to meet a bunch of strangers (my inner introvert is screaming), some of whom I’ll try to draw out about some very personal issues (my inner Miss Manners has the fantods), all by myself (at a time of epic mysogyny and rising crime.)

And I still intend to have my Brain Food Shakes and a cup of hot tea, first thing, every morning.

After I had a meltdown on the table today, my craniosacral therapist remarked that it’s like I’m reaching for a trapeze: I’m leaping off of the highest platform and, if I get the trajectory just right, I’ll be fine… but there’s an awful lot of the world that isn’t the trapeze bar, and it’s hard not to be hypnotized by the massive potential for disaster.

But how can I not go?

I won’t get many side trips, but I get to wrap my arms around people I’ve known online for years. We get to talk about what matters most in life: living off the steel core of the spirit, finding integrity in Hell, what it means to love and be loved.

The staggering physical beauty of Turtle Island is mine to explore, only this time on a reasonable schedule and without any cranky, arrogant pyschopaths (other than myself, of course) for company.

If I’m very lucky and very very good, I might stumble into the shape of a cure for this awful disease.

How can I not go? Whatever the outcome — really, whatever the outcome, even if it lands me in a nailed box — there is no way I can hold myself back with so much hope and love on the horizon. I’m a sucker for a challenge anyway, but this… turning my back on it would be unbearable.

Of course it’ll be unimaginably hard. Guess what, I have CRPS and I get up every morning. Everything else is decoration. This can be done.

My toes are leaving the platform and I’m reaching as hard as I can. Somehow, I don’t know how, I will make that bar — and swing it like hell. Because there’s something beyond that, too, and I aim to get there.

It’s impossible to be like this and not realize that I may die falling. But what a way to go, eh? I have every intention of surviving (Mom, take note) but the thing to do with what scares me most is to stare it down.

Keep your eyes on this space… The packing is almost done.

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