Poem: From the silence

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.

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Tern to the present

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.



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.

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Reality check bounce

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!
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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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I intend

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.

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