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.

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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.
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"Nothing you do is in vain"

My older brother’s sister-in-law has been doing international relief work for almost as long as I’ve known her. She was so helpful and wise, at the time that I was considering it myself, that I didn’t go into the field, though the thought of being so useful to those in such need was overwhelmingly seductive.

I know I don’t have the mental scale that lets you balance what you can’t accomplish with what you can, and decide whether the tradeoff is acceptable. The conditions are so harsh and the scale of work so grim that it imposes limits on care that are unimaginable to those of us who take soap and clean towels for granted; let’s not even think about bandages or IVs. I’d have come off very badly indeed, and that means I couldn’t have done much good.

In our intercontinental conversation on the subject (she’s British), she pulled off a balancing act I have strived to acheive ever since: clearly convinced of my capacities, without any assumption that she knew what they were. When you think about it, that’s very sensible — everybody’s good at something, often several somethings, and there’s nothing that says they have to wear their talents on their sleeves.

I was desperately intrigued by international aid work, but not sure I should pursue it and not even sure how to start; I wanted to know what to do to improve my chances.

She told me, “It doesn’t really matter what you do.” Shifting up from her lovely gentle, understated, soft British manners, I was riveted to my chair as her voice became more resonant, more intense, and I could hear the words marching from the depths of her soul, as she said something like this: “Do what you do; follow your instincts; do the work that comes to you. If [disaster relief] is the right work, the opportunities will open for you when you put yourself in their way, and whatever you’ve done until then will help you get there. If something else is right for you, then whatever you’ve done will help you get there instead.” And then, with a certainty that still makes my bones ring, “Nothing you do is wasted effort. Nothing you do is in vain.”

That was a third of my lifetime ago. Even now, when I have to pull myself through these non-international, unaided situations that are unimaginably grim in a totally different way, I remember her words and how she said them: “Nothing you do is in vain.”

Knowing that no effort is wasted effort, everything becomes much less difficult. Even in such a tiny life as mine has become, this matters hugely. In fact, it totally changes the game.

She was awarded an MBE in this year’s Queen’s Birthday Honors list. Clearly someone agrees that her own work is far from in vain.

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Reverse culture shock, transcontinental style

Dear Reader … I’m a Yank. It’s true. I may have sparkly blonde hair, find it easy to talk to strangers, and not assume that anyone who smiles at me has an agenda, but that’s because I’ve been living in Central Coast California for 1/3 of my life.

Here in California, when you tell an acquaintance that they’re particularly clever or sweet, they grin pinkly and do a little riff on, “aw shucks, stop it again, quit it some more,” and like you the better for it. In New England, they’re liable to lift their chins — apparently avoiding a slobbery little dog — and take it as their due … while wondering what your agenda is, and bracing to resist it.

I know this because, after living in each place for a few years and watching the expressions and asking why, I found myself doing these exact same things. (I’m not immune, but I try to be aware.)

I’m also planning to go between the mid-Atlantic seaboard and the Northeast, which I’ve done before, and that has a charming set of subtle cultural potholes of its own.

For instance, if you call a stranger “ma’am” or “sir” in Alexandria, they figure you have nice manners and relax a little.

If you do that in New York, they raise their chins (ever so slightly) and figure you’ve taken a lower peg than themselves in the pecking order; then they’re either magnanimous or obstructive, but usually magnanimous.

If you do that in Massachusetts, they look around in a flustered manner and can’t quite figure out if you’re making fun of them or are putting them on a pedestal they aren’t sure they should occupy. … Which is in interesting contrast to the reaction to compliments.

Mind you, those who know me well have it figured out: compliments are taken pleasantly and “ma’am/sir” lightens the mood. So I’m not worried.

But I am glad that California has the cultural weight that it does, because — as I learned long ago — saying in an explanatory tone, “I’m from California,” smooths out any number of cultural faux pas. And there are sooo many pas to faux up.

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A gift that keeps on giving

My 37th birthday happened at a fraught time (no, really?) but I planned ahead: 4 friends and I, tiny Brazilian restaurant, pitcher of mojitos.

No crowds. No fuss. No presents, please.

That was important. I was preparing to move but didn’t know where yet.

So Joyce and Graham, the techies, got me an early iPod Mini. Laura, an artist, got me an extraordinary shawl. Vince, a true gentleman, did exactly as I had asked and felt terrible about it.

My 37th year had been full of character-building surprises. I had decided not to reprise turning 36 because the subsequent year had been so rotten, but I wasn’t happy about getting older. Even before the drinks were poured, I was bitching about my age.

Joyce and Graham, who were just peeking over the shelf of 30, said, “There there, it’s good to be seasoned, age brings wisdom,” and so on.

Laura, a couple months older than I and the most sensible artist I’ve ever met, said, “Yeah. It sucks.”

Vince, who was barely old enough to rent a car in his own name (although he was bright enough to write the certification tests for Borland C++), with a self-deprecating shrug and a charming little pinkness, said, “I don’t know, you always seem to me like you have a mental age of 17.”

I remembered being 17 — happy, busy, fit, secure in my slice of the world, delighted with most things and amused by the rest, my adult mind just blooming, and absolutely no idea how cute I was.

Once I could reef in my grin enough to use my mouth for speaking, I said, “You just gave me the best present of all.”

Sadly, he didn’t exactly believe me.

The iPod Mini was superseded, then stolen. The beautiful shawl disappeared, along with everything else, when the US Mail failed to deliver what I mailed in my move.

But every year, when yet another birthday looms, I remember Vince twitching his shoulders and saying sweetly, “I don’t know…”

And, really, the count of years doesn’t seem quite so bad.

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B. C. E. takes on new meaning

Les was a chef before he was born. He helped with a BAADS Thanksgiving some years ago as a gesture of kindness, and found that — as he remarked to a friend helping out yesterday — “boy, these disabled people sure can cook!”

I laughed out loud, losing several points for coolness — but I regained them later with my Drunken Sweet Potatoes.

A weighty label like “disabled” sweeps everything before it. Literally, everything… before it. Most of us had full lives before we got a crippling illness or injury; we all have full lives now, even when much of that fullness has to do with how much harder simple things are.

But everything we did, or were, _before_ or _besides_ being [whatever] is still with us. Abled-bodied people rarely seem to think of that themselves: the term “disabled” makes our able-ness seem surprising.

Back in the late 1980’s, the socially-preferred term was moving from “disabled” to “handicapped”. This explanation from a kindly woman explained why: “It’s not correct to say I’m dis-abled, because I’m _able_ to do many different things. But I have to deal with added burdens to get the same things done that a normal person does, so I’m _handicapped_.”

Horses carry extra weight in a race, golfers get extra points on their score, and racers get penalties added to their times to handicap them. Though life isn’t a sport I entered with any thought of competition (and that’s where the analogy falls down), it’s true that I do carry a burden which makes it harder to complete the same tasks that anyone does.

But I can still cook one heck of a pan of Drunken Sweet Potatoes. Not everyone is, ahem, able to do that.

I’m definitely handicapped. I’m not sure I’m disabled. I can still write, and often remain coherent through a whole paragraph. That’s an ability!

B. C. E. — in my case, that means Before Crippling Event — I could play the flute pretty well, too. I can’t even hold the darn thing for more than a few seconds, now; the handicap there is too great to overcome.

Sadly, it’s still true that — whatever we call it — this is a nasty, harsh reality which everyone handles poorly sooner or later; the terms will continue to revolve as we try to keep from getting too stuck in our collective thinking.

As the next decade turns, I expect the terminology to change again. And then again a decade after that. And again and again, as people age and grow and try to loosen up their thinking. Rock on, I say! — We could all use a little more change.

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On weighing the evidence

My friend J’s husband called her from work today with the immortal words, “I’ve met someone else.” If he had been able to pick a worse time in life to tell her — say, when she was hooked up to chemotherapy or had just been knocked over and broken her spine — I suspect he would have. (I’d like to think I’m joking.)

I recently had another opportunity of my own to mull over the impact of emotional deceit and betrayal, but after the initial surprise I found those reflections boring.

Instead, I turned to thinking about getting so attached to my hopes and errors that it becomes almost impossible to look at the evidence and admit I was wrong. I _was_ misled, but also, for a year, I remained more attached to my erroneous assumptions than to the weight of the evidence.

So I’m reminded of the importance of being ready to notice, and own up, when I’m likely to be wrong. What someone tells you isn’t evidence, but what they do — or fail to do — certainly is. Sooner or later, you have to go with the evidence.

J and her husband had years of shared struggles, victories, and all the usual pushme-pullyou dramas and traumas that go with two different people sharing their lives.

There were times when, on the basis of the evidence, I told her she should leave. Maybe she should have, for the sake of her own soul. But she didn’t, and her husband would almost always call when we were talking, because whether they were getting along or not, he’d still call her every hour throughout the day and then ring off with a real, “I love you.”

So what do you do when the evidence itself is so confused?

Very few people wind up in solid marriages. Both my brothers did, so I sometimes think that I should, too. But I’m beginning to believe, down to my soul, that nobody will have my back that devotedly — and maybe they shouldn’t. Maybe I shouldn’t come first to anyone, nor put anyone first, myself. Becoming that attached to something that’s so very rare in reality does seem to hinder one’s ability to see the evidence, and destroys the ability to admit that one is wrong.

I have congenital trouble with admitting that my perceptions are wrong in the first place. Perhaps I should just work on that.

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