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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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”

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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

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