Category: mortality

The point of mythology — and there is one

Isy / / critical thinking, imp-possible, loved ones, mortality, mythology, perspective, quantum realities, quest for a cure, radical presence/radical acceptance, spirituality, what works

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.

 

Any such thing as "just another day"?

Isy / / adaptation, imp-possible, loved ones, mortality, moving/traveling, perspective, radical presence/radical acceptance
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:

Something like rest

Isy / / bugging out, loved ones, mortality, useful links, what works
I thought I would get laundry done today, but I’m still too shaky. I got a good walk in, and finally set up voicemail on my “dummy” phone.

I’m trying to think outside the box with the shattered remnants of my brain. My next doctor appointment is in February, and I expect to be in an intensive 2-month program for March and April. I do need a reasonable place to land, although there’s no knowing if I’ll get a permanent home here.

A package arrived for me up north, forwarded from my mailing address in Massachusetts: a present, several cards, and one or two letters. J, with controlled pain, asked where he should send it all. At this affirmation of distance, I broke down in tears. Once I could speak, I asked him to hold it until I got back. He said, “I like that.”

This forced separation is for the birds, but I’m certain he is fine without me, and that I can’t go back yet.

We went to a great deal of trouble to find a nice place to be, and it was far better than we dared to hope for. My feelings at being driven from it are beyond words.

All right, so it’s a little idealized here…

His brother made it into town last night… but then J’s car broke down at the airport, and he was improperly ticketed… Fortunately, he has AAA Plus and got towed most of the way home for free, and could afford the rest of the trip to the shop. The kindly, dog-loving, competent woman tow truck driver got the car safely stashed and took them all safely home afterwards. How cool is that?

Tow truck drivers can be really cool.

He’s enjoying the visit, though it’s bittersweet. He says it might be for the last time; this brother does not take care of himself, and his next trip will be to go stay with his daughter in another state, where he can get checked out by a whole stable of medicos.

Mortality sucks.

I’ve noticed, though, that J’s voice is stronger and brighter and deeper (a delicious combination!) so I think it’s doing him a ton of good to have someone around who reminds him of being the capable older brother. He was in the upper third of a brood of 9, and it seems he had a real gift for getting things done and making everyone like it… As long as there was an element of mischief involved.

Surprised? 🙂 I’m certainly not. He has the gift of getting others to play. He thinks he’s a lone wolf, but wolves choose their leaders according to who can get everyone to play well together…

There are so many layers of person there, that, even at this distance, and under this strain, he continues to unfold in my eyes. I don’t know what the future holds, but I believe he’s in it somehow.

An upside down day

Isy / / bugging out, critical thinking, CRPS knock-on effects, loved ones, mortality, perspective
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…

Think zebra

Isy / / adaptation, CRPS knock-on effects, loved ones, mortality, quantum realities, reiki/meditation, self-care
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.

Poem: From the silence

Isy / / imp-possible, mortality, nature, poetry, radical presence/radical acceptance
Chaos of terror and battering storms of emotion
Bashing the hull and ripping at the rigging —
Can’t tell: is water pouring over outside
Or pouring in inside?
So much it’s hard to say.
Will something come loose?
What sail could hold against this?
What rudder keep on?
Doesn’t matter…. It doesn’t matter. These are the ones I have.

The soul breathes regardless.
I remember that the answers come in the silence.
Step outside the storm, though it goes on without me
Feeling it, but outside, on the hull, not inside, not in me.
This vessel holds.

So I pause, heart whole or heart breaking,
and hold the silence
until I need to speak; and
if I speak from the silence,
then can answers come.

Tern to the present

Isy / / adaptation, loved ones, mortality, nature, perspective, reiki/meditation, what works
This is the third major purge of my possessions in 7 years. 

The first time, I decided that anything that I was keeping for sentimental value had to trigger only good feelings; I’d keep nothing that made me unhappy.

The second time, I moved onto the boat, so everything had to have at least two uses.

Now, I’m eliminating everything that isn’t easy to handle, as well as being useful and pleasing.

That meme is extending into the realm of perception. Images and events that used to trigger emotional cascades, because of memories and associations, are finally losing their sickening zap. Associations fall away, and images and events stand out  in simple splendor as just what they are: unlayered, transient, colorful, done.

For instance, I used to hate terns, because their cry sounds exactly like a drowning cat. I blame their awful caw for my not being aware that my cat was in jeopardy when he died. For a couple years now, I’ve gotten snarly at tern-time, when they come here to breed. But, with this shift in my perspective, a tern is just a tern. My excellent companion was still an excellent companion — and, obviously, a kindred spirit.

A tern is not about the past or the future. It’s here now. It’s just that, at this moment, one is floating past with its strange sharp wings twinkling; then it hovers and wiggles for a moment; twists, plunges, spears the water; bobs up again, looking smug, with a little fish in its mouth; takes off and disappears.

Usually, there is no fish. But right now, there goes a pleased tern, enjoying the moment.

It’s just a tern, and it’s doing tern things in a ternish kind of way. Tomorrow it will do tern stuff in a slightly different, but still ternish way. Doesn’t matter. It’s just a tern — nothing more nor less.

There is no furry friend dying alone.

There is just a bird.

Gorgeous photo: Geert Wilders at http://www.freerepublic.com/focus/f-chat/2426290/posts

And I want credit for resisting the obvious urge to make a crack about taking a tern for the worse.

Oops…

Anyway.

I stumbled across a quote that seemed shiningly appropriate:

“To live here and now, you must train yourself: in the seen there will be just the seen, in the heard just the heard, in the sensed just the sensed, in the thought just the thought. That is the end of  sorrow.” – Gautama Buddha

I don’t know about the end of sorrow, but it’s true that it is far easier to manage my moods, notice my body’s signals, and do what I need to do, when I keep things in this charmingly simple, deceptively rigorous perspective.

It’s rigorous because it goes against all my socialization about the importance of hair-trigger reactions and emotional responses: Am I an ice-queen? Don’t I care about things? Aren’t I human? What’s wrong with me?

I’ve gotten all of those remarks in my time, when I strove for calm in former years — especially from mere acquaintances and random strangers, which always shocked me. How I, and those around me, survived my 13th-23rd years is unimaginable at this distance of time and self-certainty, but falling into the reactivity trap was one good way not to get verbally assaulted.

One advantage of being plumply middle-aged is that, for one thing, people watch you less; for another, a degree of equanimity seems to be less … annoying.


Exqueeze me?!?

I’ve had it up to here with emotional reactions. CRPS is a roller coaster par excellence, for emotional reactions. I’m quite done, thank you, and I’d like to get off now.

Actually, I think I just did.

And now, a tern is just a tern. For better … or worse.

Reality check bounce

Isy / / adaptation, critical thinking, CRPS knock-on effects, insur-dance, mortality, perspective, what works
I got a settlement last year of $40,000. In 8 months, it’s nearly gone. I ran through my numbers and realized that all that money went into taking care of myself (clothes, for the first time in years; chiropracty, not covered by insurance; acupuncture, which should be covered but is sometimes improperly denied; $300/month in supplements which aren’t covered, but do let me function; $500/month for fresh whole food that keeps me from getting worse, more important now that I’m allergic to inexpensive foods like wheat, corn and rice; massage prepayments, for my masseur who was stuck abroad but is finally back & starting to work on me.) There were a couple of large one-offs, but they total the equivalent of the other 3-4 months of the year.
Although I’m certainly far better than I’d have been without it, I’m considerably sicker, weaker, sorer and more mentally impaired overall.
Meanwhile, insurance has — most improperly — denied any of the care that they are supposed to pay for and have covered in the past.
This disease is a bit like cancer in that, if treatment is delayed, you’re liable to lose ground, and there’s no realistic hope of regaining the ground you lose.
I’ve been pegging my hopes on federal disability (the dole, but a relatively generous dole) but even that will provide only one-third of what I need to live on. If I weren’t tending this illness — and could eat grains — it would be enough; that gives scale to these expenses. It takes 40k to support me for a year and the best I’ll get is 14.4k.
If I move ashore, which I’m trying to do (finishing up the boats and selling them being this winter/spring’s project), then it will be considerably less, because rent ashore is so high. However, it’s becoming impossible to function without hot running water, a bath and a laundry machine. Catch-22, or at least a choice of impossible situations.
If I could get a year’s funding for the intensive health work I’d hoped to do this year, I’d stand a chance of regaining enough ground to work and earn. I don’t see how to make that happen. I may be lacking in imagination.
Anyway, I’m beginning to wonder if it makes sense to keep working on figuring out how to mend. I’ve contemplated the babbling fool I’ll become on the present trajectory without supplements and so forth: pride and dignity aside, there’s no realistic way to bear it — the waking with a muddle in my mind, the increasing helplessness and isolation as my friends get more and more frustrated with dealing with me, the waxing helplessness in the face of the most basic tasks like budgets and shopping, the inability to make decisions on the basis of imperfect understanding, the constant wounding of my amour propre as the patronizing tones and “there, there” remarks continue to mount. The startling shafts of clarity when I see just how stupid I’ve been, and knowing I’ll soon fall into the fog again. It’s simply unbearable.
Had I grown up unintelligent, I’d have the skills to manage life with fuzzy brains, but I really don’t. It’s desperately confusing and the constant humiliation doesn’t help.
When I can just sit down and write, focusing on the one thing for a stretch of time, I do fine. (I hope that’s obvious.) The hopping about from topic to topic, without having time to sink into one and pull up the mental flash cards, is becoming impossible. And that’s what life requires.
My mind is thixotrophic: quick moves bounce right off; it takes time and gentle pressure for me to get in.
Though without the rigorously pure food and costly supplements, that focused writing-mind doesn’t work either. It can’t even start.
I read up on Woolf and Hemingway some years ago. I felt the usual poignant poetic feelings about their deaths, gilding over a sneaking suspicion that they’d copped out. But, as my own mental life becomes ever more fraught, I become ever more awed at the strength, grace and nerve each brought to their final stages. The words that sounded just a little bit like whining or wounded vainglory, were really a symptom of the inadequacy of language in the face of an assault on one’s core that defies meaning itself, let alone language’s ability to convey meaning.
I need more options. I need real care. I’m out of ideas.
I liked being happy & relieved last summer. I could do with more of that!

Quantum physics and the divine plan

Isy / / loved ones, mortality, mythology, perspective, quantum realities, sheeple
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.

I intend

Isy / / mortality, nature, poetry
I intend to die a hale and hearty old bitch,
rounding Cape Hatteras on a blowy day
in a boat far too light for the waters
but light enough for me;
or flying over fences on my blooded
or bloody-minded Arab mare,
a feisty brat after my own heart,
one fence too far.

Sudden and fierce it should be.
Nobody I’ve never met should profit
from my slow and tortured death,
acceding in misery
to what the doctor thinks is best.

Their training is not that good.

Pharma doesn’t train my best healers.
Only wind and waves and good rich earth
can give what I need, or take it at the end.