"Angel" in my mouth

I use endearments because I’m an affectionate person. “Sweetie” and “honey” and (my personal favorite) “sweet pea” are terms I use whenever the urge strikes.


One word I never used, because it was just too hokey, was “angel.”

Yes, I used “sweet pea” with perfect ease, but couldn’t bring myself to call anyone “angel” with a straight face.

What can I say? We all have our limits, however idiosyncratic.

I thought, What an overused, overfluffy, overly silly word to use about someone who is decidedly human — as everyone I’ve met so far is.

Then I went through the Years from Hell, a period of about 3 years I try not to even think about because it was so bloody harrowing it’s unbearable to remember, and there’s nothing to be done now to change that.

One set of surprises were some of the people who I was sure would come through, but fell from view when their actions were supposed to match their words.

Many people who seem awfully nice are more socially adept than genuinely good. It’s an important distinction.

Starting late 2011, I found myself using the word “angel” as an endearment for a very particular set of people. It came naturally to my mouth as a substitute for “sweetie” or “sweet pea” when speaking to those who showed up when the going became almost impossible,

who never gave up on me despite good reason to do so,

and who showed up for me through thick and thicker.

The handful of people who made the key difference between my living and dying, are the ones I call “angel” — and find it easy to do so.

It’s not over- anything. It barely does them justice. And, I have to say, some of them were a real surprise: people who aren’t apparently nice can be genuinely decent and deeply good.

Like every ER nurse ever, I used to preen myself on how good a judge of character I was. This disease, and the many versions of Hell that it comes with, teaches us a thing or two about human nature.

It’s fair to say that, even at my most brain-frozen, my judgement about people’s core attributes is better than it used to be.

I know where to find the real angels on this earth.

Among my besties, that’s where.

The point of mythology — and there is one

I’m working on a series of 3 novellas, a triptych:

1. Kronos in season: The growing-up of a primal god.
2. Hell — the bright side: The original story of Persephone, the original career woman.
3. Pain, a comedy: the intimate family drama that came down to us as the story of Chiron, the wounded healer — and possibly the first recorded case of CRPS.
(Warning: slapstick and hangman’s humor, sometimes simultaneously.)

I’ve been bogged down on number 2 for the best part of a year. In other words, I’ve been stuck in Hell… heheh.

“That Heironymous Bosch. What a weirdo.” – Good Omens

When asked what I write, I usually talk about CRPS and turning medical science into plain English. When asked what my favorite thing to write about is, I have to say, it’s mythology.

“Wait — mythology? … Why??”

Because myths are about the greater parts in ourselves. Those of us in unbearable situations (like the Newtown teachers or Mother Theresa or, indeed, anyone with a terrible illness) have to be superhuman at times. Sometimes most of the time.

Myths remind us of our innate capacity to reach beyond our limits and own the moment, hideousness and all, so that we can lift ourselves beyond all reason and find a way to make things better.

We have modern myths, like James Bond, Star Trek, the X-Men and Harry Potter.  While they have their limits as myths, they still meet the inward need to see that part of ourselves that can bear the unbearable, survive the murderous, and emerge victorious from a no-win situation.

I should have died at least 5 times in the past 10 years. But here I am, very much against the odds, still thinking (sort of) and writing. Rediscovering mythology played a part in that.

And, more than ever, I find it incredibly easy to tell those enormous stories as if I were talking about real people in real time — because, in my own mind at least, I am. When I write about gods and demons, I’m writing of things I know, although under different names.

You should meet my friends with CRPS — and some of their parents. These people embody powers of creativity, diligence, determination, resourcefulness, strength and brilliance that make the great gods of prehistory look like punks, and leave modern adjectives beggared. Telling myths is easy-pie after talking to them!

If we should stick to writing what we know, then I’ve been to Hell and back so often they’ve installed a revolving door for me. I’ve wept on the knees of Hera. Sedna is my sister. I’ve heard Taliesin’s lament. Coyote has my home address, and comes over (too often) for tea… I have my suspicions about what he puts in his cup — and mine.

I won’t discuss the demons, except to say that they, too, can usually be healed. But it’s always by the thing you wouldn’t think of.

“O..kay.” Checks my head for tinfoil hat. “But what does mythology have to do with CRPS?”

It gives us back the unstoppable inner part of ourselves that can defeat it in the end.

And that’s good medicine.

 

A great flight

The first leg of this flight was the best I’ve had in years. I chit-chatted at the gate with another invisibly disabled person for half an hour and the three of us (including his wife) kept each other very amused, then wound up with not just one, but two, delightful neighbors.

No sooner had I noticed, and enjoyed, the fact that I could converse for an hour and a half without saying “CRPS”, than one of my lovely neighbors turned to me and said, “And what do you do?”

“I’m a writer.” A surefire conversation-starter, that.

Inevitably, “What do you write?”

I talked, not so much about the disease, but about my core group of CRPS friends, most of us in different countries. I described our ongoing efforts to publicize the disease by surfacing the art and creative work of people with CRPS, of pooling our own information about what works both within and outside the standard medical model, and our hope, one day, to be funding research to quantify what works in fields that have been completely overlooked (I’m being tactful) for so long.

I got what could be THE critical referral to a lawyer who has relevant experience in nonprofit structure. That alone might have been worth the price of the ticket.

Then the entire plane sang “Happy Birthday” to my other lovely neighbor.

It really was a great flight.

Bringing chocolate

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

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

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

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

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

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

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

Any such thing as "just another day"?

At the end of last year, I had the pleasure of writing exactly the kind of end-of-year post I’d always wanted to: Pleasant without being dull, reflective without being melancholy, whimsical without being trivial, and, of course, linking back to blog posts marking turning points in the year.

I took that week to reflect, which was appropriate. It had been, for me, a year of great inward shifts, starting from the inevitable, flattening despair of the massive practical and intangible losses this disease brings, to a new awareness of possibilities that I had discovered, fought for, or created out of whole cloth. It was probably the year that this blogging voice really took shape.

This year is quite a bit different. I’ve been technically homeless for most of it, catching up with friends I hadn’t seen in far too long, and looking for a rational way and reasonable place to set up my post-poverty life. (Oh well.)

 Despite my plans, I haven’t had much time for reflection these past few weeks. Physical survival in the form of an income and affordable home were taken care of… but then the survival issue became much more personal, and at the same time, even further beyond my control as my nervous system took off without me.

Despite all that work, all that expense, all that hope of 2012… Nothing is assured. There is more to manage, but less I feel I can hang onto.

Admittedly, this isn’t my cheeriest post ever. Be assured that my determination remains unmoved.

With it, that F-U imp still holds the back of two fingers up to anything – or anyone – that thinks to squash me.

This date is an accident of history. The end of the year has even less reason to land on this day, of all days, than the last cycle of the Mayan calendar had to land a few days ago.

Our calendar is only loosely tied to anything but mental habit — and centuries of political pressure.

But it does us humans good to have a chance to pause and reflect, think about how we define ourselves, how we adapt, how we react, how we think, notice what we’re grateful for, what we cherish and want to keep.

As for me, that’s now too obvious to bear speaking of.

I will not die.  
I have work to do
I love, and am loved, more than my pitiful mind can encompass.

It’s more than enough to keep me going!

Whatever we call this day, it’s one more in the middle of an adventure beyond imagining...

 Adventures tend to be damned uncomfortable things, as Bilbo Baggins was not the first to assert; but they make good material. As a writer, I get something out of that. If it’s a form of insanity, at least it’s an adaptive one.

Come with me on the journey. I always appreciate the company.

Links to blog entries:

An upside down day

Today was a day when everything seemed to turn at least one somersault, including my mind. In fact, I just took off the headset and turned one myself, to complete the set.

Extreme stress makes me a little whimsical…

Food & housing

I woke up this morning in a motel that was as creepy as it was the night before, when the desk clerk had looked up and down at sweet, white, worried me, and said in her most reassuring tones, “I’ll give you the room on the second floor, on the corner, right where I can see you.”

On the one hand, I was glad there was someone to look out for me. On the other, it was horrifying that it was so baldly necessary. A bit like my relationship lately.

Today was the last day of intestinal meltdown before heading into real wasting syndrome: relentless nausea, episodes of dizziness, and nearly volcanic indigestion. The next step is relentless diarrhea. I’ve had wasting syndrome once this year already, and that was enough.

The automatic drive is about to go in reverse…

Time to put more money into staving off physical self-destruction: I called a good hotel with monthly rates, and made a 30 day reservation.

The indigestion is considerably better, and at least I can eat past the nausea. Success! I WILL save this system!

I finally had a good, real conversation with boyfriend J this evening. For all our mutual problems, there’s a lot of love there. This separation is agony for both of us.

I finally got to say what I have been tripping over all day: nothing feels right. I usually have a strong sense of flow, of what should happen next and how to get there. But it’s as if I got washed up on the riverbank weeks ago, and however hard I try, I can’t catch up with the current. I’m more lost than I have ever been.

Being away from my sweetie, and pouring so much money I really need elsewhere into the painful boondoggle of a separate life, is lonely and brutal.
So I have some thinking to do…

Whiplash…but the good kind

We now have a cute li’l trailer, sufficient to our simple needs:

 

I lived on a sailboat for years, and J is a camper from way back, so we think it’s about right. I can hear some of you gasping and a few saying, in slightly strained tones, “Well, if you’re sure…”

It’ll do for now.

We paid too much for its years, but about enough for its general condition. It’s clean and tight and, with a few electrical personality issues not surprising in something 30 years old, is in very good shape inside. That is, the cushions, cupboards, furnace and water-heater are excellent!

The trick is finding a place to put it.

We look weird on housing apps.

This is new territory for us.

My nursing and writing/software resumes were irresistible, or so I assume, since I hardly had to look for jobs; they’d just as often come looking for me. J’s carpentry work is second to none, as his rate of re-hire attests. Too bad so much of it was in Mendo, where people change their phones like normal people change their underwear.

Work aside, I’m highly mobile (always have been, except when disease really slaps me down) and J is moving out of a region of the country which, in my view, is a total pit. Among other things, anybody who looks Native American (as J does) looks like a punching bag to the local thugs, uniformed and otherwise.

And, since we’re both now a little daffy, it’s not like we have the routines nailed down. As J says, “We put our two screwy brains together, and we’ve got one pretty good one.”

Still, I’ve always paid my rent on time, even in the worst of times; and J has survived 62 years as a neatly made, brown, feisty dude of less than average height. Persistence is key, in housing as in chronic disease. He is certain something will come soon. Meanwhile, we keep doing the rounds.

***

No sooner had I entered and saved the above then, on J’s advice, I called the manager of the mobile home park we wanted to buy a home in, just to ask if he might have anything…

He had one RV spot left.

It’s huge, has already been dug over and gardened in, backs onto a creek, has good neighbors and a manager who likes us, and it’s in budget (just). He took to us so much, he’s trusting us to move in Wednesday and do paperwork when I’m back the following Monday.

On our previous visit, I gave him a jug of real old-fashioned maple syrup from his old home and mine in rural New England. That might have made us more memorable.

Img from this intriguing article: http://www.ishs.org/news/?p=1588

My well-honed reflex is to wait for the other shoe to come flying out of the dark and whack me upside the head.

My determination is to be profoundly grateful, a good citizen, and maybe re-learn how to relax…

Meanwhile, I’m  off to see my new doctor in LA

I’m leaving tomorrow on a 2-day trek down. I’ll stop for a visit with relatives, giving J free rein on getting us plugged in, set up and organized. He’s going to enjoy that!

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.

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 🙂

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.