Not what I expected today

I got bitten by a deer tick right before leaving Massachusetts.

Lyme disease is, of course, something CRPSers are susceptible to, so I took it seriously, especially when the head popped off when we tried to remove it.

A two-tone rash quickly rose and fell with much hot salt water, but it rose again last night and I woke up this morning feeling glandular.

I found an urgent care clinic, called to make sure they take Medicare, and put it on my list of errands on my way out of Scarsdale. I returned one thing, picked up another, stopped at Trader Joe’s to pick up lots of kefir to help with the antibiotic impact, and pulled over at an AT&T shop because my newly-activated Galaxy S3 phone wasn’t behaving well — and wasn’t surfing at all.

(Mine is white.)

Two hours and a great deal of work later, I walked out with a phone I now know is not as unlocked as Negri Electronics said it was (it will soon be available on eBay, once I know what carrier it can use) and a brand new Galaxy S3.

The very capable and helpful young lady who got me sorted out gave me a tip that is probably worth what I’ve lost on the phone: Never buy anything that matters from a company that doesn’t have a customer service phone number on their web site.

What a simple, brilliant filter. No customer service phone number = no interest in staffing for customer service. Do you want any problems dealt with in a rational manner, or not?

The good news is, these phones are so hot I probably won’t lose all that much on my original purchase price.

Then I went to the address of the clinic, according to Google Maps, and there was no clinic there. In fact, nobody at the Family Center had any idea about it. I  should have taken the secretary up on her offer to give me directions, if only to check the address…

I wanted to cross the Tappan Zee Bridge (yes, those of you from anywhere else, that’s the right name) before the construction started tonight. So I did a search for hotels and motels on the other side.

They’re all full, probably with hurricane refugees, and the least expensive room I could find was double what I have budgeted for a single night’s lodging. Most of them were quadruple that.

It was getting below 40 degrees Fahrenheit and very dark. I called my hostess and turned back to Scarsdale.

Safe, warm and fed, this is beginning to look less awful.

It really brings home to me the pointlessness of taking plans too seriously. The linear approach has only ever yielded average results for me, at best; I can only excel in a more seat-of-the-pants kind of way.

It’s hard to accept, because it’s — wow — really, really difficult to start something when you have absolutely no idea what the finish might be, and are necessarily vague about even the next step.

The blind leap is exceptionally challenging, especially with a hotwired fight-or-flight response thanks to dysautonomia.

Try it blindfolded, with live wires stuck in your brain…

But I did get down that birth canal all those years ago, and that was the quintessential one-way leap into the void.

After that, any other trip oughta be a piece of cake. Right? Even if you have to start it twice.

Oliphaunt, the Thule Frog

Those of you on the central coast of California know that tule fog is what comes in when it’s hot inland and cool on the ocean. If you live there long enough, you can’t keep saying “fog” so — especially if your housemate is whimsical — you wind up using “frog” as a euphemism when it’s froggy out.

I couldn’t possibly get all my clothing, tech, and kitchenry into Henrietta and still leave room for a sleeping Isy, and a rooftop carrier would kill the mileage and my arms, so I had to come up with an alternative…

I stopped at ProLine in Wallingford, CT since they sell this, which is a cargo carrier with 3 features I really need: an accessible height, plenty of space, and a swing-arm so I don’t have to fight with the box to get to the back of the car.

It turns out that Stowaway ships direct from their warehouse on the other coast, but they had a slightly smaller Thule carrier. I asked to look at it to see if it would suffice. I thought it would, after measuring and peering and playing with the lid a bit…

Then it turned out they didn’t have the swing-arm version… but as he said so, I saw wheels starting to turn. Rather than dashing off, I explained a bit about why I needed it (“my hands don’t work so well; I can’t handle the Transporter’s drop-down hinge”) and stated rather baldly that, without the swingarm, I was screwed.

He said he might have the swingarm itself from a Thule Terrapin (which they discontinued for some silly reason.) He thought there was a spare one lying around somewhere, for some reason, and if the holes lined up…

There was.

And the holes lined up.

And it wound up costing less than my Plan A.

And, bless his heart, he got out a drill, put the whole thing together for me, and popped the monster into place.

Its gaping mouth… its long leggy swing… its sheer enormity…

Meet Oliphaunt, the Thule Frog:

The answer to my prayers.

Different souls, one world

I’m intrigued by how different the characteristic of integrity looks on different people.

My car’s detailing is being supervised by a very Catholic chaplain who really doesn’t lie, really does respect others, really does care about his world, and really does put his time, life and energy into working for the greater good. He’s pleasant and charming in a comfortable way, and his whole demeanor is slightly aglow. He’s a man on a mission, and it’s one that coheres with his best innermost self.

Obviously, what comes next is about the general perception of certain groups — not individual or local impressions, but the wider impression that history, actions/consequences, and the publicity about them, have left in the public mind…

The Catholic church isn’t known these days for turning out coherent, stable, disciplined characters, so it’s really good to meet one.

Lutheranism isn’t known for sweetness, and one of my uncles is both a devout Lutheran and one of the most kindly, gentle, nonjudgmental people I’ve ever met. It really works for him.

Atheism isn’t known for consideration, yet this culture of argument which so often defines itself in terms of opposition has turned out some of the most resolutely practical, inspiring and embracing activist-philosophers of any creed in this age.

It’s possible to go on for some time, but let’s take a moment to realize that all belief systems look a little odd from the outside, despite the fact that living a belief system is a seriously powerful thing to do. It’s one of the great ironies of humanity.

I suspect it’s a clue: it matters on the inside, but shouldn’t matter on the outside. Being responsible to our own internal structure (respecting our own uniqueness) makes sense, but trying to push our framework onto others (disrespecting the uniqueness of others) does not.

Decency and moral stature don’t belong to any one belief, but they do belong to the human race. Each of us is at least as different in our inmost selves as we are in our outward lives. When you think about it, it would be impossible — bizarre and irrational — for us all to believe the same way.

Anyone who finds a path — whether well-defined or idiosyncratic — that gives them, in their uniqueness, real strength and purpose holds a great gift and a powerful tool.

I no longer fear the differences of belief and it’s been a long time since I held any in contempt, but I’ve taken a step back to simply admire and appreciate them, filled with joy tinged with awe.

We are an astoundingly diverse species, inside and out. Such an abundance of different ways to be should make us fitter than ever to handle anything. When we enjoy and admire our variety, rather than fretting over it, I’ve noticed that that’s exactly what happens: together, we can handle anything.

After we had done the paperwork, this chaplain and I continued our conversation and I wound up telling him about the purpose of this trip, the reason I was dropping scarce money on prepping my car.

As I did so, I felt my own coherence of integrity coming into focus, the energetic union of innermost self and outer reality.

And I realized: I’m on a mission. Regardless of my own outcome, I’m certain now of leaving the world better for my feeble but determined efforts.

This radiant chaplain is going to pray for me and my work. The science shows that prayer and meditation correlate to better outcomes, regardless of the forms used. To bring the science back to life and into specifics, I know that the prayers of someone so coherently devout are powerful help.

I’m a handicapped woman on a mission which is technically impossible. But now, I do have a prayer 🙂

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.

Active learning

I’ve always been fidgety. When I get MRIs, I really annoy the techs because I think I’m holding perfectly still, but my body goes twitch-twitch-twitch. They think I’m doing it on purpose. I can’t even tell. Feels like stillness to me.

Aristotle was famous for walking with his students while having his teasing, maddening conversations with them. The old Greek word for walking back and forth (yes, they have a word for it) is peripatētikos. Strolling back and forth while learning and teaching has come to be known as peripatesis, the adjective being peripatetic.

I learn best with intervals of activity. When I can control my obsessive focus, I do best when I take a break every hour or two and … take a walk.

"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.

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.

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.

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.

Into hot water.. then cold water.. then hot..

This is a bit odd and I haven’t heard anyone else with CRPS trying it, so I’m just tossing it out to show how weird things can be…

I’m cold intolerant. Absolutely can’t handle it. My body locks up and the pain goes all-body and through the roof.

Can’t take too much heat either; makes me weak and foggy, and can trigger POTS symptoms (in my case, that’s mostly nausea, bloating, dizziness, weakness, lethargy.)

My body temp drops so much when I sleep that I’m cold to the touch. A housemate woke me once when she touched me affectionately as I slept, then found I was so cold that she shook me awake — she wanted to be sure I wasn’t dying. That’s how cold I was.

My first massage therapist, a good friend of mine, insisted I try the hot/cold plunges at Harbin Hot Springs, which happen to be 47 F and 118 F.


I told him that was completely insane and did I need to explain dysautonomia again?

He kept at it, and I finally went there for a few days. I was in bad shape, one of those times when I think I’m not going to live for long because there’s so much that’s so wrong and there’s so little energy left. So there wasn’t much to lose, as far as I was concerned…

At least it’s not an ugly place.

Took two and a half days to work up to it, starting with cool bath/dry sauna, working up to going between intermediate baths, dipping in the really hot for moments, splashing arms then trunk with cold. Eventually I could go for the full plunge. I did 2 full exchanges, and was all right. In fact, I was pretty good. Felt crisp, not chewed.

I went back later and did at least 5 or 6 more (I lost count, truthfully.) By then, I could FEEL my hands and feet as I couldn’t remember having felt them before: exactly where and what and how they were — which was, keenly alive.

I had no pain, no pain anywhere at all, everything was the right color — only a much better shade than I’d seen in years, and my head felt as sparkly as a diamond.

I don’t like to sound over the top, but it was such a feeling of absolute, perfect, poised and healthy ecstasy that words simply fail in the face of that experience.

Being totally pain-free makes us CRPSers high, but this was more than that. Everything worked, from the tiniest microvessel to the least drop of chemical messenger. My cells sang with the bouyant joy of it.

I copyrighted this image… kinda cool. Think I’ll use it as a logo.

I went out to the main pool, actually enjoying the cold roughness of the path on my unharmed feet, and drifted into the “quiet zone”, that is, the temperate pool. Although it’s not etiquette to contact strangers there, an awful lot of people turned to look at me and smile the sweetest smiles. I can only imagine how radiantly happy I looked. I felt that I was glowing brightly enough to light the whole space.

According to my online research, there aren’t many hot springs that have contrast baths at all, let alone to that extreme degree. If they do, they’re awfully coy about it…

I have hopes of a particular roadside hot spring at Yellowstone National Park that runs into a chilly stream. In winter, which it nearly is, that could be worth trying, though it would take a bit of effort.

I’m not sure how slippery it is, what the currents are like, or what sort of work is involved to get from hot to cold. I do have to be mindful of physical damage, until I can really find that cure I’m convinced is just around some corner on my winding path.

We shall see what comes up. I know this is something to add to the repertoire, one of the ingredients to combine into a cure, or something like it.

One more piece of the puzzle… a twitchy, morphing, complex, incredibly irritating puzzle, but one I’m rather stuck with until further notice.