CRPS, or Complex Regional Pain Syndrome (Type 1), is a change in the nervous system that's usually triggered by a very painful episode. The bad kinds affect the brain, nerves, muscles, skin, metabolism, circulation, and fight-or-flight response. Lucky me; that's what I've got. ... But life is still inherently good (or I don't know when to quit; either way) and, good or not, life still goes on.

Saturday, October 29, 2011

Releasing the gods within

Modern mythology (á la comic-book heroes & Harry Potter) make extraordinary powers something odd, often imposed on those who never asked for it or are forced into concealing it in order to survive.

I don't have a lot of time for the victim mentality, however charmingly restated. (I love Harry Potter and X-Men but still take them in small doses.) And the idea that it's abnormal to be super-anything is not congruent with my experience. I don't know anyone who isn't super-something.

Embracing the deep weirdness of reality and going from there seems much more effective -- and realistic. Notions of normalcy are hopelessly entwined in history and place, sealed with the invisible glue of social fear.

In other words, normalcy is unstable and profoundly irrational, even as we're desperate to hang onto and justify it.

Not very helpful for dealing with bodily meltdown, lasting pain, deep disruptions and the massive issues of powerlessness, poverty and loss that are shaking so many. It's too easy to feel like a victim and a freak.

I've been delving into the mythology of the Titans, creator gods (like Gaia, Rhea, Ouranos, Kronus) who gave rise to the later -- and nastier -- Olympians (like Jupiter, Mars, Hera, and all that crowd.) They deal with devastating changes, massive loss, pain, betrayal, mutilation, everything we face -- but not for one minute do they imagine that they are ordinary, held to small standards, ineffective or meaningless.

They move and think and act and feel as if it mattered, because it does; they are born to their extraordinariness and they own it, warts and all.

I want to reframe the stories we tell ourselves so that we start out being extraordinary -- not by accident or as oddities, but by right. Then the overwhelming tasks we face become merely heinously difficult, not completely beyond us.

We need not waste energy trying to conceal how much we can really bring to bear. We have better things to do.

Friday, October 21, 2011

Define stability

I live on a boat. Not a houseboat, a sailboat. It's 29 feet long, 9'4" at the widest point (outside measurement), and has overhead clearance of just barely 6' in the main cabin.

Since I'm less than 9' wide and 6' tall, this works for me.


A small boat is an unstable surface, shifting with every step and wiggle. You keep your balance by toning your abdominal muscles – as soon as you tighten your midsection, the wobbly feeling disappears, and even if the boat's surface is 30 degrees from horizontal, you can still keep your feet under you.

I have the strongest core of anyone I know who doesn't either live on a small boat or teach Iyengar yoga, because that's just how it works.

A friend of mine moved away and couldn't get rid of his even smaller boat (25' with rather less overhead clearance), so he sold it to me cheap. The main difference between his and mine is that the smaller boat has a larger engine and a thicker hull. It was designed to sail across the Pacific.

Now I have two boats. (That's COMMODORE Idiot, thank you very much.)

For various reasons, it's time to leave the Bay Area. I'll be returning part-time to rural Massachusetts, but I can't hack the cold season. It would be far cheaper and less painful to gnaw bits off me with a blunt and rusty saw. So I have to come up with some way to live and somewhere to be during the off-season.

Did I mention that I have a boat? ... In fact, two?

I'm discussing a boat-partnership with a friend of mine who is capable of the work, but hasn't found out if he really likes it yet. We're going to work on the boats this winter, getting them ready to sell; in the fullness of time, we'll know if we're cashing them in for an upgrade to sail towards the Equator in, or flogging them and splitting the money then going our separate ways.

The second option is easy, sensible, and well within my expectations and experience of life. Our friendship could easily continue intact.

The first is not necessarily any of those things. But the long-term benefit of it is that it would probably give me a second home to go to, somewhere warmer, with the comfort of a friendly face to greet me.

Some think that coming away with a sack of cash is more like stability. Having money reassures me in a way known only to those who've done without. It feels solid.

But what's the value of solidity? I'm used to ground that moves under my feet. Snug up your core, and it's easy to handle. And there's nothing like casting off and taking off, nothing over you but open sky, and your own home flying through the water with such poise that it makes even the cormorants faint with envy.

[IMG cormorant superflock on my birthday sail]

Stability might mean solidity. Or it could mean being able to balance different forces well. Which of these sounds more interesting? Even – or perhaps especially – when you aim to make each day as sparkly and intriguing as a handful of jewels?

[Just wait till I get the pictures up :)]

Thursday, October 6, 2011

On being human, or bearing the unbearable

Mythology helps me put my mind outside my ideas of what's impossible, and thereby live constructively despite CRPS. More on that later, probably, but here's an hour's private lesson with the greatest practical mythologist of all time.

Good for playing over & over while you do other things, and let different bits surprise you on each replay.

C.G. Jung In His Own Words - The World Within [FULL DOCUMENTARY]:

http://www.youtube.com/watch?v=75766BLgqeA&feature=youtube_gdata_player

(With grateful thanks to the L. A. Institute for Carl Jung, for providing this whole film on YouTube.)

It's always too easy to sneer at a superficial glance at the work of those who've gone before. There was a time when I thought Jung was pretty wacked, with his giving mythological caricatures such a powerful place in the mind. How simplistic!

Like all superlative work, it only looks simple from a distance. The closer you get to it, the more mind-glowingly complex, subtle and profound it becomes.

I meant to write "mind-blowingly" there, but, for once, autocorrect may have gotten it right.

Sunday, September 25, 2011

Pain Manifesto

This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation -- destroying the body's ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

"Standard" treatments don't work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I'm either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It's going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all 'round.
I'd cure them if I could (heh!)
But I'm too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I'll spend each one
Like it's stuffed with jewels
Pouring through my hands like a miser's dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

Wednesday, September 14, 2011

Considering the end: a new beginning

Mortality is tricky. We're all going to go sometime, but we are hardwired to avoid the very thought of death. And so we should be.

However, when my loved ones die, my life (so far) continues – though significantly changed. Death has ripple effects on the living. This is why we have wills, wakes, and difficult conversations with the elderly and infirm.

My dad was a financial planner when he died. Here I am, 45, with a horrible condition and a little bit of property... As a financial planner's daughter, I know perfectly well that the responsible thing to do is sit down and make a will, living will, and any other terminal documents I need. So I've started that process.

The old man would be proud!


Naturally, the first thing people ask is, in sweetly worried tones, "Are you okay?"

Having begun this process, I'm much better. It reassures me to know that certain important things will be said, certain horrible things will be avoided, and -- though there's no getting around the fact that bereavement sucks -- there will be more love and comfort in those ripples than there would be otherwise.


It also makes me think in terms beyond myself. Legislation around CRPS is almost nonexistent, because people don't think of it as terminal. However, as I remarked in my bio-blog, the diseases it causes most certainly are.

Sound familiar? Anyone here remember the health care terminology changes in the '90s? (Read the bio-blog for more hints.)

I can do something very important with my death (hopefully many years off) -– I can make sure it's properly attributed. No disease without a body count is ever taken seriously, and it's time to start counting bodies with this horrible disease.

Personally, I have been struggling with a panicky fear of mortality because of this disease: each time I have a flareup, my body is never quite the same again; each time I have a lasting attack of the stupids, I have no idea if I will get my brain back; my heart is becoming more irregular. Barring a miracle or an accident, I'm facing a rotten time. With this disease, I look at the end, and all I can do is scream. I hope I have hidden it well!

However, the thought of this final gift -- proper attribution, a ripple of awareness, the hope of better care for my compatriots -- this tiny thing, this little spark, has had a tremendous effect: I feel the force of my life again.


It's true: when you're skirting paradox, you're close to the naked truth.

Contemplating the end with wide-open eyes, returns my thoughts to getting more juice out of life. There's a lot of it left, all things considered. My end will not be in vain, and with that in mind, the time until then seems much more promising.


Links:
Bioblog about myelin & attribution
"Nothing you do is in vain"

Friday, September 9, 2011

A gift to share

I had the pleasure and privilege of speaking with Dr. Adams, who (among other things) teaches clinical at UCSF Medical School. He provided me with a brilliant overview of the recent history of public health.

"Remember [the federally mandated public health targets called] Healthy People 2000 and Healthy People 2010? We missed those goals by miles. We don't even _have_ a target program now. The next one could just be: Breathe. And I'm not too sure we could even hit that!"

He kept me spellbound for half an hour. I don't think I got a word in edgeways, but he must have liked the quality of my listening, because he gave me this book off his shelf as a gift:

He said, "Be calm when you read it. Sit down, breathe, and take it easy." Caveat emptor.

This doctor uses the (numerous!) expensive letters after his name for something besides paying the mortgage ... He and his posse sent a copy of this book to President Obama, with a cover letter explaining the devastating consequences of a profit-driven health care system. 

They heard back from a medical advisor: the President put the book in his Presidential Library, but the advisor had to state that the for-profit industries had their influence so well laid in that, if the President breathed a word about single-payor care, it had been made clear to the White House that he would be abandoned by both sides of the aisle.

Abandoned. Completely. For standing up for the American people. The same American people who let those pikers into Capitol Hill in the first place.

You've been bought & sold. We all have.  Weren't you looking? I'm not sure I was. 

The industries speak for us because we haven't spoken up enough for ourselves. Politicians are nervous, ego-driven creatures desperate for a good image, and we've let the moonshiners polish their images -- and their apples -- while we bitch about the rent. 

The rent matters. Lots. Sadly, signing Internet petitions does not. 

Is it too late?

Well, you're still breathing, aren't you? So am I. Emigrated yet? Me neither. Guess it's not too late, then. 

Be heard, unfiltered. Call. Fax. Write. Put a stamp on it. Letters matter. Phone calls matter. These represent a big hurdle in people's minds, and politicians know it. They weight them accordingly. 
(http://www.usa.gov/usa/Contact/Elected)

Paper, three sentences, stamp and envelope are not really that hard to do ... just slightly strange to think about. Try it & you'll see what I mean. 
(http://www.usa.gov/usa/Contact/Elected)

If you have expensive letters after your name, this is an excellent way to get more mileage out of them. Your words are weighted more heavily still. 
(http://www.usa.gov/usa/Contact/Elected)

Let your politicians feel insecure about their policies, where they don't serve you or those you care about. Let them feel watched.  Let them get nervous and worry about their hair; it means they're procrastinating about changing their minds, even as their minds are changing. 
(http://www.usa.gov/usa/Contact/Elected)

Call. Write. Use stamps. Fax. Be seen. Be heard. Vote. And monitor voting. 

It's surprisingly little trouble after all. 
... http://www.usa.gov/usa/Contact/Elected

To find your reps and congress-critters, choose the category and plug in your zip code here: 
http://www.usa.gov/usa/Contact/Elected

Monday, August 29, 2011

Humanity, in spite of ourselves

Needed to change my flight in order to recover from Irene before coping with a transcontinental dose of high-altitude radiation, cramping & low-grade hypoxia. On the advice of my lovely travel agent at Pacific Harbor Travel, I called JetBlue directly: hi, I'm disabled, I have to change my flight due to Irene.

Unfortunately I missed their Irene fee waiver by one day. Okay, distasteful but I can respect their limit.

Seating was a problem. The staffer was very sweet and very insistent about having no window seats ... but on a later flight, there is one on the aisle.

After being straight-faced and literal about my limitations, then hearing her say "aisle seat" with a straight face, I sorta gave up. I confessed, "I would rather be BEATEN with a CATTLE PROD than sit in an aisle seat."

I didn't shout, I really didn't. But I know there was a certain amount of top-spin on the words, because the person in front of me on the bus flinched.

Things changed. I won't use her words because they were ignorant and would sound too harsh without the audible melting that happened, but she found me exactly the seat I'd have ordered if I had the whole cattlecar to choose from.

I hate bitching about this condition and I don't like to be so explicit about what it does to me, but sometimes that's what it takes. So this evening I'll raise a glass (or mug) to, "Humanity -- in spite of ourselves."

Friday, August 19, 2011

L.O.B.E.: Lung-Opening Buoyancy Exercise

I floated in the hot springs, like a wallowing marshmallow: inhale to come up, exhale to go down and sink beneath the surface. Lift chin, inhaling through fish lips to lift myself up, wobbling; exhale, slowly descend... to one side.

It had been a few years since I had done this, but something wasn't right. I was rocking like a drunk.

Inhale, slopping over to the left; inhale further, watch my middle rise, then my belly. Exhale, and sink piecemeal, in chunks.

This was just weird.

I got up, reached for the brains I had left by the side of the pool, and dumped them back into my head.

Now lie back... breathe... whoa, definitely off-balance. Flopping over onto my left side, I grabbed the side of the pool as realization struck.

I was only using my lungs one lobe at a time.

Yeah, weird. I didn't know it was possible.

Some of you know that the right bronchus is supposed to be more accessible, but it was the left lower lobe that inflated first. The right side inflated second, middle then bottom. Before the left upper lobe. My right upper lobe had simply forgotten how to expand, and took some prodding.

Inhale, slop, wobble; exhale, stagger, bump. The water let me know exactly how well -- or not -- I was doing.

It was a busy morning, relearning how to use my lungs, rocking like a sea serpent surfing for prey. I spent as little time as possible reflecting on how a once-athletic health nut who liked to meditate, could forget how to breathe.

In a hectic and pun-lathered conversation this afternoon, we decided that "lobing" was a good word to describe working on those skills you really should've mastered long ago, preferably with a built-in indicator that not even the terminally clueless could miss.

I'll spare you the wordplay, except that I'm a little worried about the Loberlords.

Next, I'll try to go for a walk... but that's far more complicated.

Maybe I'll just sit here and breathe.

Thursday, August 11, 2011

Fair Share Challenge: what taxes do for me

This budget horror-show has given us a lot to think about. The role of taxes in our country is probably the biggest, sorest issue of them all right now.

"Why should we pay taxes? That money is ours – we earned it!"I heard this from a member of the armed services who's quite intelligent.   

Out of respect and consideration for my impassioned, but perhaps distracted, old friend, I wanted to find a non-partisan, preferably non-political way to discuss the point of taxation. So let's simply see how that money gets used in real life.

Everything in bold-face type is heavily subsidized or completely funded by government money – local or federal, for better or worse. Do any of these tax-funded things affect you?

I take pain medicine which was funded by government grants to develop. My treatment was developed by government grantees. It keeps me alive and functional, so I can write things like this. Is that a good use of taxpayer dollars (printed at the Mint and monitored at the Federal Reserve)?

Read on and let's all decide.

My nephews go to school by bus, when their mother can't take them. She has just received her teaching credentials, so she will soon be working as a teacher. Their father, my brother, is a Marine. He runs a base where he supervises the training of National Reservists of the Army, Marines, and Air Force.  He recently visited a friend in the VA hospital.  All of his children were born in military hospitals.

Since they all run on a tight schedule, they use their car a lot. It uses gasoline; they used to have one that ran on diesel; the next one may be an electric hybrid. To cover short distances, they use local roads. To cover long distances, they use highways. They're careful of road crews, and drive sensibly over bridges and through tunnels (I hope.) Me, I mostly use the bus and train.

My brother and his wife pull over to make room for fire trucks, police cars and ambulances. (Many ambulance systems have been privatized; however, they still work on the basis of city or county contracts that are funded by taxes.)

They eat on the healthy side of a normal American diet. With three growing boys in the house, they eat plenty of wheat and corn-based products, such as bread for sandwiches, cereal, pasta, and so on. They're allowed occasional treats, including candy and soda sweetened with corn or cane sugar.  I bet they get their beef from the grocery store, so you know it was raised on soy and corn, and was probably fed antibiotics.  Those boys are pure dynamite anyway.

My dear old friend David used to work at the library. He still volunteers there. His pension keeps him in a simple but comfortable style of life. He likes to attend church, though most of his real friends are out and about on the city sidewalks.  He keeps in touch with a friend who has been in the mental hospital, and their conversations help her stay on track.

When my Dad died suddenly, I attended support groups at the local Hospice.  I used to be a nurse, working in hospitals and home care.  In the ER we took care of prison inmates when they got hurt. 

I ran out of work at one point and wound up on food stamps and welfare.  I will never forget that they kept me alive until I could find work again.  Since then, I haven't really minded paying my fair share of taxes.  

During the last election cycle, I saw an angry woman on TV waving a sign that read, "Get your government hands off my Medicare!"  I hope she understands things better now. 

This has given me a lot to think about.  

And, fellow bloggers, here's an invitation/challenge: how much better can you write on this theme?  How much do you really know about government support for the things you use every single day that make your life do-able?  How does this pertain to your work, paycheck, interests, family – whatever really matters?

I'd love it if you'd share links here and let me know.

Wednesday, July 13, 2011

Beyond courage & compassion

Here is a link to an article I once would have found moving and relevant to my nursing practice:

Courage and Compassion

The central idea is that the writer is dealing with an Ivy Leaguer with early dementia, who does the usual things of declaring that it's "not that bad" even as her mind shatters piecemeal. The writer is trying to figure out how to be a good therapist while trying not to panic at the thought that it could happen to her. She looks for her answer in Buddhism, which is not a bad start.


I wrote a response which seemed too long to go through the web page's comment function. I thought it over, and decided to post these ideas here, since this is the quintessence of learning how to live with the unbearable.

For several reasons -- including being wildly overmedicated on antidepressants -- I've gone back and forth across this line of intellectual capacity and incoherence. Since my central nervous system is still compromised, I will inevitably go back across that line again, if I live long enough. (Sadly, science focuses on the pain of my condition rather than the impaired function. As far as I can tell, the scientific subculture in psychiatric medicine has absolutely no regard for intellectual capacity in its patients, considering intelligence disposable -- when it's mentioned at all.)


There is another reason why this writer's patients tell themselves it's not that bad. Like most of those with an acquired disability, they find that there is more to life than they imagined, and that functioning with an impairment in an aspect of life they once considered essential, has opened up their minds -- and their hearts -- to aspects of life they never realized they valued so much.

This newly-demented woman is still loved. Her survival is still assured -- to the extent one can say that in this world. Even though she lived all those years depending so heavily on her intellectual capacity, there comes a time, when everything is swept away and every characteristic you thought defined your "self" is gone, when you realize that something is still standing there, asking the question, "Who -- or what -- am I?"



Our ideas of who we are, are, I suspect, an essential part of samsara, or the world of illusion. I know that, whatever happens to me, the answer to the question of identity is both eternally answered and perfectly unanswerable.

In the end, it may be that we find we don't need those illusions. If I didn't have to struggle to survive, if I had a spouse and children and insurance, functioning without my intellect would have been immeasurably easier. When I lose it again, I have no idea what I'm going to do. However, I have a pretty good idea which of my friends will be able to stay with me on that journey. The past few years have been enlightening in that respect.

Suffering is, by definition, a willful engagement in the anguish of life. I find that it soon loses its charm. Is it more useful to struggle with the engagement of my ego, or to turn my attention to what works -- the love in my life, the warmth of the sun, the value of the moment, the puzzle of doing the very next task?


Losing my mind was a stunning lesson in the fact that it's not about my limited and ego-driven ideas of myself. It was a door to perceiving what really fills my world, what lies beyond my expectations and beyond my uniquely limited understanding. Through her work with these people, this writer may have the privilege of discovering that, without having to pay the savage price that most of us have to pay for that understanding.

She writes with desperate fear of facing this herself, but this opportunity could be the gift that insulates her from the very devastation she fears, even if it does happen.

We humans are driven to comfort as the sparks fly upward, but there are times when it makes sense to turn your back on present comfort to ensure your future safety. Her fear won't ease until it's dealt with, as this issue is part of her work.

As for me, it's time to go meditate. I intend to weather my future well, regardless of how little intelligence I can bring to bear at any given moment.