"Invisible disability" gets an upgrade

I was in a van with two friends of mine, a man and a woman, both of them using wheelchairs. We were looking for parking.

She said, “I hope I have my parking pass.”

He said, “Well, mine’s in my car, so if you don’t, we’re out of luck.”

I said, “What do you mean? I have one in my purse.”

She said, “Oh, yeah. You’re our Stealth Gimp.”

Best synonym for invisible disability EV-er.

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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.

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Regen at Black Butte

I came to CA for a leisurely camping trip with my sweetie. (One can have enough of the “long-distance” in a “relationship” until you have to cut some slack on one or the other. I chose the former.)

I landed in the fiery heart of an explosive crisis in his life, but one thing that nursing and 10 years of serious illness have taught me is, other people’s crises are not mine. It frees me up to have all the empathy in the world, without losing my own balance. (Much… :-))

Our idyllic excursion into nature with nothing much to do has turned into … an idyllic excursion into nature with nothing much to do, but a lot more to talk about.

We wound up at Black Butte Country Store and Camping, …

The store as you approach through the intersection.

…run by his old pals Tom and Margie, a charming and hospitable couple who came up from the East Bay – so they know damn well they’re onto a really good thing here. Margie’s smile just won’t quit, and that kind of says it all.

We’re at the juncture of Black Butte and the Middle Fork of the Eel River, a far corner of a protected and remote swathe of the simple life called Round Valley.

This phone is getting old, but it still shows how blue the sky is.

We’re in the shadow of the Mendocino National Forest, recently the site of a huge wildfire. You can see where the charring and scarring stop at the top of the hill right across the street. A huge sign in front of the store thanks the firefighters in letters over a foot high.

Everyone here is REALLY fond of the fire service now.

 There’s very little cell signal (neither JC nor I get phone-joy), only a few radio stations come through at all, and the only wifi is at the store run by the campground owners, a 5 minute walk from the site. This is a huge bonus: the low levels of EM radiation are letting me cope with the stress and the dietary compromises perfectly well. 

Good for neurons and what they control.

I even drank half a soda yesterday, and hardly felt a thing… In other times and other places, I’d have paid for that for 3 days. At least.

The grill (closed on Wednesdays) serves fresh local natural beef and incredible salads. Really good greens with just enough dressing and the lovely smokey meat of your choice. The convenience store is pretty small, but the coolers are packed with everything from coconut water through Naked juice to conventional sodas all the way to the rankest beer you’d hate to find.

They’re perfectly happy to make me a gluten-free sandwich wrapped in that lovely lettuce.

You can’t see the sandwich, which covered the whole plate, cuz I ate it.

On our first night, the full moon rose directly over our feet, waking us both out of our first doze to stare at the radiant spot on the tent wall in bleary wonder for at least a minute, wondering who turned on such a damn great light at that hour.  JC finally stuck his head out and told me what it was, and we both had to laugh.

The air is absolutely pure. Each evening, the spotless sunset gets punctuated by exactly one contrail, a screaming streak of orange across a melting sky of peach, green and sixteen shades of blue.

Since the moon rises later and smaller every day (and as we get caught up on our rest, able to stay up past dark!), last night we got a full hour of gazing at the Milky Way and the million million stars I never get to see.

Photo collage: TwTunes at www.digitalsky.com

Casseiopea and the Big Dipper wheeled overhead with a-a-all their lovely autumn cohorts, as familiar and ever-present as old friends.

At the time of our visit, there was a breathtaking piece on show from local artist (and Santa  Cruz transplant) Lynn Zachreson. The link goes to her web page but, of course, online photos can’t do justice to her brush control, delicate textural discrimination, or authoritative use of color. Look her up; it’s worth it.

There’s a gorgeous swimming hole a few minutes’ walk up the pike, sinking deep around great boulders of white chalcedony. Healthy-sized fish nibble your legs if you hold still long enough, and the water is perfect on one of these bakingly hot afternoons.

The water is a lot bluer once you’re in.

JC says the weather can change in a minute here (this old New Englander reserves judgement) but we’ve had a glorious run of unseasonably hot, clear weather with deliciously cool, clear nights.

This illness is hugely responsive to nutrition, air quality, and man-made radiation. In most far-flung places, the produce is dodgy and tends to look (and taste) second-hand; you can’t get good food and good air waves without a lot of advance planning and a huge cooler.

This place was a total find, and for those of you who really care about things like air, food and EM smog, it doesn’t get much better than this. Especially at these prices.

It’s absolutely outstanding.

And you can bring your horses! There’s a black and a bay here who’ve kept us endlessly amused.

Being around JC has always knocked back my pain and increased my strength since we first met, before we ever thought of getting together. He’s obviously got his own electrical field or something. Between his company and the clear and deliciously benevolent environment here, I’m stronger after a few days than I’ve been in some weeks.

I’d thought of this as a side-trip to squeeze in, before I got on with my serious healing junket… but it’s looking like an ideal start, instead. I wound up landing on my feet, and I am grateful.

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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.

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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.

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Moderation… in moderation

I’m usually vigilant about what goes into me because it makes such a difference in what I can put out.

Today, I went up to Heath Fair, the kind of country fair that has pulling contests for everything from bullocks to tractors, first through third prizes for identical piles of potatoes, rare critters no factory farm would make room for (like this 4-horned goat),

… and also henna tattoos, a massage booth, Chinese food options, and extraordinary handicrafts with century-old handtools being used by gnarly-handed, smiling neighbors.

I started the day with a good solid Brain-Food shake, but once we hit the Fair, that was it.

French fries made from fresh local potatoes, fudge made from fresh local milk, coffee with maple syrup from fresh local farmers.

Then we got home and had ice cream and cheese.

I haven’t touched a single bit of produce (that didn’t have a ribbon on it) since breakfast.

I’m doing okay. Daffy, but okay. A little sore through the elbows, but okay. Not able to soak up any science, but okay. Very glad I didn’t have to drive home, but that’s okay, too.

We stopped on the way home to catch the closing of the Pow-Wow on the Mohawk Trail, a lovely arty cozy time with friends and their friends. And that was more than okay.

Whipped cream on top: learning that moose have moved down to this area…

As long as I do this wild irrational feasting on weird stuff about once or twice a year (no more), I should be … okay.

For one thing, it’s good to keep your body guessing. (That’s why dieters need to have one good belly-filling meal every 2-3 days, so the body doesn’t go into famine mode.)

For another, I suspect it does me good to remind myself why I don’t eat this stuff normally. Even though my body is handling it like a champion, that’s because my usual diligence has created a certain amount of metabolic slack; I can absorb a bit of crap without disaster.

Still no wheat, though. I’m adventurous, but not self-destructive. My lovely hostess, Laurie, indulged me by getting some of the homemade wild blueberry pie and assuring me it was every bit as good as it should be.

While tomorrow brings another day of quantities of greens that could make even Dr. Terry Wahls raise an eyebrow, I’m kind of digging the memory of one day with so much creamy, mouth-melting sweetness. I’m smart enough (finally) to know what’ll happen if I keep it up any longer, but I’m old enough to really, truly enjoy my memories just as they are — without regret, without longing, just with simple pleasure. This is a nice one.

Mmmm…

And tomorrow’s shake will be just as good as ever. Possibly even better.

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What comes first, comes first

Hard lesson I keep re-learning: My very first priority is taking care of this bodymind complex. My very second priority is taking care of my relationships. Studying and writing about this disease and everything that relates to it … no better than third.

No matter how fascinating a line of inquiry is… no matter how badly I want to make that conference call… no matter how scintillatingly brilliant that blog post that’s unrolling in my head will be…

Something else has to come first.

If I haven’t had my brain-food shake, or it’s time for a massage, or the phone is ringing and it’s someone I haven’t connected with in awhile, then shake or massage or phone comes first, in that order.

And then, CRPS doing what it does to attention and memory, whatever I had on my mind beforehand is gone. Taking notes, unfortunately, doesn’t work — I’ve tried it. Notes work for those whose brains maintain networks of ideas, who can trigger a cascade of memories from the brief mnemonics. I’m working to get it back… which brings us back to the first priority.

And, I’ve found over the years, the second priority is inextricably linked to the first — directly and indirectly. But I think that’s a whole ‘nother post, all by itself.

I’ve been a Type A worker for about 24 years. Relaxing does not come naturally, but I’ve learned to manage it in reasonable doses. Losing work is bad enough, but losing it before I’ve even had a crack at doing it is, well, what those with pithier vocabularies call a mindf!ck.

Knowing that I’ll probably lose the work, and making the choice to go ahead anyway, takes more discipline than I always have. But — despite the learning difficulties — I’m getting better. Even I can learn to keep my priorities in order.

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Just enough

The feds owe me backpay. It should come to quite a chunk of money. Naturally, some of my friends are spending it for me according to their own wishes and tastes. Bless their hearts.

It’s not here yet, and I have to manage with what I have. I’m grateful for my monthly disability income. It would be nice to have more, but it’s enough for me to live on. Just enough. My  income is more than many have, and I have really simple tastes… but most people can live a whole lot cheaper than I can, because my “basics” are different.

I want to ask my blithe friends to point to something in their cupboards — something to eat. Anything.

  • Pasta? For me, that’s 3 days of poor vision, no memory, no thought, of being so disoriented I’m unable to drive, let alone get to the end of a sentence. Corn and rice aren’t quite as bad, but they still cost my body too much.
  • Beans? Depends on the bean, but it usually means sluggish bowels, insulin resistance, worse nerve pain (because the endocrine misbehavior triggers inflammatory responses), and disproportionate weight gain. Every extra pound I weigh is a tax on my feet and legs, where the pain and swelling are already about all I can cope with. 
  • Cannned goods?  Neurotoxic preservatives that set my thoughts rattling, interfere with sleep, make me feel like someone took a baseball bat to my head. 
  • Soda? Oh boy, let’s talk about soda. The phosphoric acid alone will send my peripheral and central nervous systems into spasms, and the caffeine throws my fight-or-flight response a curve-ball. Don’t even get me started on the corn syrup. Corn fractions are bad, but high fructose corn syrup is a straight descent into neurogenic Hell.

I have to put expensive berries and piles of organic greens in my cart.

  • If I don’t eat them several times absolutely every day, my brain starts to shut down. 
  • If I eat too much of the herbicides and pesticides used in conventional produce, it’s a quick descent into autonomic Hell, with weeks of constant PMS, radiant gin blossoms, and blood pressure that won’t settle down. 
  • I choose the high-end cheddar over the store brand. Want to know what they use to keep the store brand “fresh”? I need to let my bowels continue working, thank you… But aged cheeses provide precursors for the neurotransmitters used in memory and decision-making; when I’m having trouble thinking, sometimes all I need is a bit of good cheese and a couple of hours to absorb it.

I spend hundreds of dollars each month on supplements, herbs and homeopathic preparations, carefully tuned at every purchase to make sure I’m getting the best possible effect for my money. Collectively, they let

  • my mitochondria cope, 
  • my nerves fire, 
  • my brain work, 
  • my body repair itself — reasonably successfully, most of the time. 

I constantly double-check and experiment to make sure I’m not wasting my money, that every one of them makes a real difference. They are not optional, and there is no slack in the system.

I can’t live like a normal person. If I try, I’m dead. It’s not drama, it’s just a fact.

I don’t choose to live like this because I can afford it. I live this way, and do without other things. I think of those who live in houses or flats with multiple rooms, petting the companion animals they can afford to feed, with their feet on a coffee table or rug, drinking out of their own mugs. And the poor things don’t realize how good they’ve got it, but eye my windfall askance and look for something more to be dissatisfied with. It’s human nature. I’ve done the same, back when I could afford to.

Everything I own right now fits into a messenger bag and a carryon; that’s it. There are three boxes and a dive bag stored with a friend somewhere. I know I’ll see the friend again (to the extent one can be sure of anything), but heaven only knows whether I’ll see the stuff, because stuff tends to leave me by freaks of chance. In the end, if it’s not important enough to keep with me, how badly do I really need it?

I’ve learned to be relaxed about possessions. Having the US Postal Service lose thousands of dollars of art, books and paraphernalia at a formative moment in life, can have that effect. All I need is enough to wear, plus the laptop and e-reader. Other things (pots, knives, movies) are useful, but I find them hard to hold onto; they keep slipping away, one way or another.

I know exactly what I’m going to do with that backpay. Every penny will be used. Not spent, not frittered, not idly indulged with. Nothing will be wasted. It should be just enough.

There is still no excess or slack in the system. But as long as there is just enough, I can make it work.

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Vocation and purpose (illustrated)

I’ve spoken of myself as a writer for ages, and made a decent living writing professionally (about software) for several years — until I got disabled as a consequence of the long hours.

Look a little more closely…

My inward life (narrative, spirit, meaning) and outward life (events, tasks, purpose) have been approaching each other at an increasing rate, and the transparency this creates causes some re-evaluation of publicly-held assumptions like what I am. For instance, is being a writer my core occupation — my “real” job, where “real” means “true, valid, essential”?

It dawned on me that writing, for all its wry, playful and muscular delight, 

is, for me, a means to an end. Here’s why.

I’ve considered myself a writer since I was 10 years old. My mother gave me a blank book to write my poems and stories in, when I was 11 years old — a step up from my plethora of scoliotoc spiral-bound notebooks — so at that point I was clearly committed.

But my earliest coherent memories are of comforting her, of trying to rescue baby birds, of helping to wash and change my baby brother.

So there’s something I’ve been doing longer than writing.

As an adolescent, I probably spent more time rescuing cats, dogs and (more successfully this time) birds than I did putting words down on paper.

Writing is a joy, and it’s a tool. I know I wrote the right thing when someone says, “That really cleared things up for me,” or more transcendently, “This helped me so much.”

I write to heal. First, I wrote to heal myself, but now, it’s a way of doing a bit of good in the world outside my own head.

As I remarked to a friend of mine, some people go into the healing professions because they like the feeling of power it gives them to help others.

(Many of them are very good at their challenging jobs, so I’m not inclined to dis their motivations.)

Some of us go into it because we like to help people find their strength and set themselves free.

I used to enjoy some of that power, though I believe I did a good job of maintaining perspective in the face of the quite extraordinary impact an emergency nurse can have. 

Of course, what I really loved about that job was the scope and depth of challenge, and the instant feedback. Never a dull moment, and I learned a lot.

Now I have lost what taste I had for power over others, even benevolent power. But I have always loved helping people find their strength and watching them set themselves free.

These days, when I think of anything worth doing (after taking care of myself), that’s what it comes back to: helping people find their own strength, and watching them set themselves free.

Writing lets me do that in absentia, while I’m unconscious, perhaps even long after I’m gone. If I do my job well, others will be reminded of their own strength, or find the clue they need to set themselves free.

So, I’m a healer… who writes.

At least I have better dress sense and less disturbing kibitzers than this guy.

I hope it helps.

(revised 12 March 2013, to add images and improve clarity)
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