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.

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.

One for the money, two for the show…

I suddenly got tired of waiting.

I do this: churn up a great idea, spin possibilities, lay in lots of groundwork, get cold feet, get reinspired, hammer down some details, fall apart completely, then say “oh the heck with it, who needs drama, let’s stop dithering and get this done” — and off we go. (Editorial “we” there.)

I’ve gotten nearly all the stuff that I need — vehicle, bedding, cooler, and a power inverter to charge the laptop with.

I’m making a custom map on Google Maps with airports from the halfway point on (in case I need to fly out to make my next doctor’s appointment), campgrounds and national parks along the way, and increments of no more than four hours of driving per day — aiming for one hour at a time, with lots of long breaks.

There is flex built into this that lets me stop for a couple of days when necessary, to rest and reboot. Some days I might drive only two hours, or one. I got my ticket on Southwest so I can change it for free. It’s all progress.

I’m driving across the temperate zone during harvest season, so getting my produce is less of an issue than it would be at any other time.

I’m fed up with the mess in my car so that’s great motivation to thin out and repack.

I found a wonderful site called http://www.reserveamerica.com/ which includes national parks, state parks, and KOA, among others. And there’s always Motel 6 for backup, if I really need walls and a door.

And I’m wondering why I’d delay getting better. I’m off to combine the healing factors I’ve looked into and spend enough time on them to make a lasting difference.

Or not.

In any case, it’s time to try. At least it will leave me in better shape for the winter — always the worst, hardest, bleakest time. Maybe this one will be better..

Let’s find out.

Remembering and re-membering

I’ve been doing intensive massage and craniosacral therapy for the past few weeks. I’m reminded, of course, that the neurological system extends throughout: bodies have memories. (There is some confusion about how those memories are stored. We’ll figure it out eventually.)

This, in turn, reminds me that the brain is malleable. CRPS changed it,

and if I’m thorough enough, persistent enough, and clever enough, I might be able to change it again.

Persuading the brain to remap itself is a remarkable process, because the brain uses the language of vision and metaphor and it responds most strongly to longing and fear. (This is one reason why mythology is so helpful, given the right story: myths tend to have powerful visual metaphors and visceral emotional force.)

The brain is also a monument to inertia: once it has started going down a certain path, it’s very hard indeed to persuade it to change course. I find I have to be firm, focused, and relentless, and since I also have CRPS-related ADD and periods of unbelievable vacuousness, that’s tricky… (I’m working on how to construct a webpage that has all my tricks and routines easily accessible, so I don’t have to remember what to do when my memory is at its worst. It’s a heck of a design problem.)

One good way to access the central nervous system (CNS) in a way that specifically rebalances some of the most critical areas of the autonomic nervous system (ANS) is through bodywork, like therapeutic massage and craniosacral therapy (these link to my providers — both warmly recommended.) Here are a few of the reasons why.

  • Humans, and other mammals, are hardwired to respond deeply to touch. The “safe touch” of good bodywork is profoundly soothing to the ANS, and since the ANS drives the multi-system dysregulation of chronic CRPS, this is a powerful thing.
  • The rocking motions of massage stimulate the parasympathetic nervous system, which has a lasting calming effect.
  • It releases endorphins, which reduces pain and brightens mood.
  • The tissue stimulation improves and stabilizes blood pressure and circulation, major factors with CRPS and dysautonomia.
  • Swelling goes down, as circulation is mobilized.
  • Hyperesthesia (pain to light touch) and allodynia (blunted sense of touch) improve because of something that clinicians call “desensitization”, a hostile sounding word which really means, “developing appropriate sensation.”
  • Hormones stabilize, perhaps due to the improved circulation and more stable ANS.
  • More stable hormones improve mood, reduce pain, and stabilize immune and inflammatory responses.

Therapeutic bodywork does all that. There is no pill or surgery in the world that can come close. Once I get my links sorted out, I’ll rewrite that for the medical blog. The value of good bodywork simply can’t be overstated.

A couple of weeks ago, during several treatments in a row, I had the curious sensation that my right arm and shoulder were being knitted back into my body. I hadn’t realized until then just how completely I had succeeded in shutting them out.

The still, quiet voice inside me indicated that dissociation should be intentional, purposeful, and temporary; if I wanted to be well, it could not be habitual. My inward guidance wasn’t telling me to stop dissociating (that is, mentally and emotionally separating myself from that part of my body), but to do so only when I needed to, to separate from too much pain.

Remaining dissociated is like disowning that part of my body, and I can’t persuade it to do anything when I’ve essentially cut it off. I need to persuade it to heal, and that’s a tall order.

During today’s craniosacral treatment (from the delightful and competent Sonja Sweeney), I remembered standing on the wall of my French-bed corner garden a few years ago, right before I fell off it and smashed my tailbone on the edge of a ramp. Pathetic lavender and dying weeds filled most of the bed, since I hadn’t gotten far with digging it up. Behind the glorious, fragrant, massive rosemary against the back edge, a 20-year-old growth of climbing roses spilled green and pink everywhere.

I had just completed a course of treatment that put my insides in the best shape they’d been in years. My stomach no longer bothered me, I was healthier and stronger, my stamina was better, and I was still inside the five-year mark with RSD.

What’s interesting is that, during this treatment, I was remembering the moment right before I got injured, not right after. My eyes were filled with roses and my nose with rosemary, and I was sketching out great plans for my bit of garden.

As I walked away after my treatment, that quiet inward voice said, “Remember pre-injury, not post injury. Remember that.”

It had to start with the rosy garden, because before the CRPS injury, I was working at Borland and was so involved with my work (which I loved) that I really had no idea how magnificently fit my body was, by the time I got injured. I simply didn’t notice it.

I enjoyed the activities of riding to work and running miles through the redwoods, but when I thought of my body, it was to criticize function, appearance, or both. (Except occasionally when I noticed those legs… :-))

In the rosy garden, I was aware of being better. And that was the point.

My brain needs something to reach for that has inward meaning and emotional oomph, so vague dissatisfaction is not a helpful point of reference. A sturdy inward “YES” is the goal: re-remembering this body, with all attached limbs fully integrated, blood coursing warmly throughout, everything moving and working, and that radiant feeling of blooming health and returning vigor.

I’m 46. I don’t expect feel the way I did when I was 34. But I know 60-year-olds who could kick the ass of me at 34. Being well is not an unreasonable idea, keeping in mind that I’m going forward, not back.

I’m inventing a frame of mind that doesn’t exist yet. Both remembering and re-membering give me important clues as to what it should be. I’m delighted to have figured that out.

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.