Frozen

I was mulling a post called, “The Pulse,” about how my life tends to go in surges, and when I work with that, things go better, but when I try too hard to flatten life out to a steady level, everything goes badly.

Some people try to flatten the ocean. That's above my paygrade. I just try to ride the waves. Photo Brocken Inaglory/Wikipedia.
Some people try to flatten the ocean. That’s above my paygrade. I just try to ride the waves. Photo Brocken Inaglory/Wikipedia.

It’s about the pulse — push when I have the momentum to push, pause when the momentum fades, sink when even standing still feels like a sucking drain; push, pause, sink, push, pause, sink, and so forth.

If you’ve ever held a stethoscope to the sound of a beating heart, you have an idea what that sounds like.

It’s like pacing, a familiar concept to the chronically ill, but on a larger timescale.

Winter always involves some withdrawal, some sinking. This makes lots of sense to my acupuncturists and martial arts teachers. The traditional Chinese medical model assumes that we’re embedded in a larger reality, with weather and climate and timely changes, a key idea which conventional medicine doesn’t acknowledge very well.

I used to be able to push enough, even in winter, that the annual sinking wasn’t that obvious, given that most of those around me were in winter too. However, since my mid-30’s, a lot of people I’ve loved, liked, and depended on have died in the chilly armpit of the year. Deathiversaries, as I’ve noted, tend to have an effect on me, especially when they pile up like… well… bodies.

Perhaps I should move south of the equator. Then it’ll be warm at this time of year, at least for me, if not for my lovely ghosts.

Photo in the public domain, with thanks to the photographer Nello Rolleri
Photo in the public domain, with thanks to the photographer Nello Rolleri

Late last year, two honorary brothers, one of my dear CRPS friends and a young friend whose life I actually saved at one time, both died. Now, at least two of my honorary sisters are at the end of their lives, one of CRPS and the other who’s working on her 6th cancer.

I’m not whining. It’s not about me, it’s definitely about them. I’m not dying.

It’s just that it’s hard to remember that, sometimes.
Angels_lossy_notsonice
Helpless as I am to hold back the grim reaper’s scythe, there are sometimes things I can do to soften the end of others’ lives. My first nursing job was on an HIV/AIDS unit in 1991, so this is a well-established idea for me.

This year, though, 24 years on, some invisible line has been crossed, or some invisible straw has landed on this camel’s back. I cannot move. (It’s kind of wild that I can write, finally.)

I am paralyzed, generally anesthetized, frozen. There is no pulse, no pause, no sinking, not a microgram of push.

My mind currently looks something like this.  Photo  Chris Stubbs/Wikimedia.
My mind currently looks something like this. Photo Chris Stubbs/Wikimedia.

Four days of work, pushing so hard it sucks my breath away, and I now have a psychotherapy appointment with a 30-year veteran of helping the chronically ill and deeply traumatized. Plus one blog post.

I can’t do a thing for anyone else until I can move and breathe again. This thought alone is like a blanket of razors, since the condition of my friends isn’t going to wait for me to get my act together, but still — it doesn’t break the ice.

There are some things that are too much to expect a reasonable person to bear, and anyone with a hellacious disease already has one of those things on their plate. Those who are in the last stage of life have another. Those who are bereaved … you get the idea.

I’m posting this, not to write my diary in public, but because I know I’m not alone. Those of you who can barely move enough to shift the cursor, be assured that I know you’re not alone, either. Somehow, we will get through this. We will melt the ice, with help if we can get it. There is always an afterwards.

There’s one thing that offers this frozen veteran of grief the kind of scathing consolation that’s all I can expect these days: when my time comes to shuffle off this mortal coil, then, if there’s anything left of me to notice or care (as I strongly suspect the more subtle yet intransigent laws of physics require), I will be in the very best company.

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Moving is hard anyway

Intermittently, this page is getting redirected (the Back button usually takes you back to this blog) and Google is becoming more and more problematic. It’s like their old adage of “Don’t be evil” is fading into the mists of time, along with Borland C++ and proper punctuation.

I’ll be switching my active blogs to new URLs, but don’t worry, I intend to redirect this link myself (take that, hackers!) to the new link.

It’ll be good.

In the meantime, I’m in geek hell. If I could remember more from my software-career days, I’d be in much better shape, but I have to relearn a bunch of basic stuff with a CRPS-riddled brain.

Yeah. It’s a ball.

So there’s some blood, sweat, tears, and probably no further posts until this is sorted out, but then (I hope) things will be even better and easier and cleaner than before. 

Those of you much-cherished people who’ve subscribed via email, I’d love to be able to port your subscriptions myself, but we might have to do that the old-fashioned way. There will definitely be a way to sign up again on the new page.

Wish me luck, patience, insight, and adequate brains…

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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.

 

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Think zebra

This title has two meanings:

  • Medical students are often told, “When you hear hooves, think horse, not zebra.” This means that a set of symptoms is probably due to a common cause, not an uncommon one. Zebras are rare.
  • There was a popular book about chronic stress and fear that pointed out that, when prey animals like antelope or zebras are attacked, they get really upset; as soon as the attack is over and the predator is gone, they chill right out again. It suggested reacting like the zebra; respond fast, then relax when the threat is gone.
Zebra face
I have a rare disease — a real zebra.

One of its many effects is to hair-trigger my fear, because of the disruption of the autonomic nervous system that regulates the fight-or-flight response and everything that comes with it.

My bf and I are dealing with a crazy ex. It’s an unpleasant experience for anyone, but truly trippy for a former ER nurse (talk about comfortable under stress) who now has a CNS hotwired for the fight-or-flight response. I keep blinking to check whose life this is, anyway.

In between the bouts of crisis management, I’m doing my very best to “think zebra”, do a logical assessment, and chill right out again. One must function, after all.

The daffiness of CRPS-brain (especially one that has been overtaxed with a long trip and multiple moves) means that things I need to do occur to me bit by bit, not in a tidy list. However, I do make lists, and have the backup of good friends with relevant experience: I follow their advice promptly and to the letter.

All that’s left to do is keep on with my mental disciplines: meditation, contemplation, qi gong, and prayer. Studies show it works, though they’re vague as to why. Doesn’t matter what format or religion you meditate or pray in, as long as it’s sincere.

Makes perfect sense in quantum physics — but medicine is stuck in the 1600’s, with the radiant Sir Isaac and classical physics. Maybe it’ll catch up one day.

Meanwhile, here’s a zebra. Time to meditate and pray, then stop and chew grass.

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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!

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Quantum physics and the divine plan

Post on one of my CRPS groups: “Everything that happens to me is part of the plan for my good.”

The responses to this seemed to come through a blissed-out narcotic haze. I’m afraid I administered the verbal Narcan. Surprised? 🙂

I’ve counseled too many rape victims and abuse survivors, and treated far too many accident victims, to hold the belief that bad things happen to us as part of a greater plan — let alone that it’s for our own good.

Bad things happen, full stop. As living humans, we take our chances in the world; sometimes it works out for us, sometimes it doesn’t.

If we grow and learn and become stronger, then it’s because of how we chose to deal with it and what we could bring to bear — not because some faceless force thought it would be interesting and valuable to cause us so much agony, because — of all counter-logical reasons — it loves us.

I aim to find a way to become free of CRPS. Nevertheless, I perceive that the skills, the inward peace, the strength, the poise I’ve developed in coping with these unimaginable challenges over so many years, have certainly made me something I never would’ve reached without it.

I thoroughly honor the brilliance, creativity and strength that my comrades with CRPS bring to their lives. It’s breathtaking to belong to such a select group — although the cost of membership is a little high.

It’s a special disease: agonizing, rare, destructive, poorly researched, underfunded, extremely long-lasting, and — most special of all — widely believed to be hysterical in nature. The challenges it poses are distinctive and seemingly endless.

After eight years with it, I’m proud of myself and I even care about myself, even though I can accomplish so much less than before. 8 1/2 years ago, I felt that I had to earn my right to even breathe.

The credit for all that growth goes to innate qualities, my excellent friends (some of whom I’m related to), and a handful of gifted clinicians.

The causal lines are very clear: hard work, relentless study, determination, safe places to stay, loving words, wise ideas, needed gifts, perfect loans, valid diagnoses, key treatments — these are what gave me strength and let me grow and learn.

It’s been painstakingly pointed out to me that I have the friends I’ve earned. I’m not sure any mortal deserves such friends as mine, but I’m glad of them all the same.

Cold chronic CRPS and all that goes with it… Part of a plan? What plan? Whose bloody plan? I want the bastard’s address! And so does my army.

Plan is a four letter word.

I will never forget the days and nights and years of desperate prayer, with nothing but silence coming back. The goodness, the help, the peace, these all came from other people and my own work. The natural results of many extraordinary efforts.

Inflicting this kind of agony and loss “for your own good” would be absolutely unthinkable for a conscious, caring being of any kind. Moreover, to have the power of withholding destruction and pain, and to fail to do so, is quintessentially evil.

I’m a theist, but I don’t see deity as a psychopathic abuser — as something that would clobber me for the fun of it, or be persuaded to stop the beating if I figured out the right things to say.

Moreover, I can really see why people would be atheists. Without quantum physics to make sense of things, deity is an indefensible concept. With quantum physics, I’m certain of three things:

We ARE a permanent part of something greater. It IS aware, omniscient, and ubiquitous.

Its job is not to screw things up, but to notice, communicate, and keep flowing. That’s it.

Nothing else agrees with the evidence.

It’s not intrusive, manipulative or evil. It can’t be, because it doesn’t possess the mechanisms.

Not to kill the buzz or anything 🙂

Whatever belief system works for you, use it!  Just remember, there’s more than one path to personal salvation — or whatever your metaphor is — but very few of them get discussed, because of the ancient hegemony that a few groups have held over religious and spiritual expression. Let’s open the world up a bit.

All too often, the power of human connection is mentioned only as an afterthought. In practice, I’ve found nothing more important when the chips are down.

I no longer pray for help. I ask.

Because beliefs vary, it’s important to give a voice to those who find the traditional idea of our helpless subjection to a greater will to be the opposite of comforting. We don’t get much airtime, but we still find peace, strength and grace.

Just not in that particular idea. Thank God.

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