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.

Tuesday, April 23, 2013

The wall, redux -- with demons on the side

Sooner or later, deep and chronic illness (like, oh, let's take an example at random, CRPS) will bring you face-to-face with your worst demons. It's only a question of when, and precisely how.

When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You'd think I'd be a cringing slave with that underlying attitude, but I wasn't. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn't deserve to live.
Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn't make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.

Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.

There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.
I think this healer outranks me, but you can see
how focused he is on his patient. It's like that.
I found that it's impossible for me to work hard for someone's survival, and not come to care about them – no matter who or what they are.

Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.
I won't go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven't been through it, you wouldn't believe me. That bad. Worse, even.

I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I'd been fighting so hard, for so long, for my own survival, that I had become important to myself.

I no longer felt I needed to earn the right to live.
Ever since that time, I've never had a serious case of any kind of block – writer's block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related.

Then, with this move to a strange area, with no connections, near a city I almost loathe... To get real care, for the first time in years, from seven highly skilled and capable professionals…

I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.

Since writing "Frustration at the wall", I've been faking it in the hope of making it. That's a lot of weeks to keep running up against the same damn wall!

I finally started talking about it – I'm a writer; I'm a woman; I process by words; let's move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein. 

I can't help thinking that the following is going to strike a few chords with some of my lovely readers...

I am, as she said with characteristic precision, "a helpful, compulsively self-reliant minimizer." Really, why should I trust these people, who wield the power of Gods over what happens to me?

There's a deep part of me that says "blow that, let's go hide instead" and off I go, hiding behind advising on Facebook and diving into books and catching up on others' crises; my condition is not that bad, so my care is not really that important, and it's not like these people care more for me than their own crap anyway, so I'm on my own really.
My distraction activity is all very worthy, so I needn't justify it. But, well, so much for the many new things I need to do to put together my own health...

Unconscious reactivity could be the death of me yet.

I said this illness would raise all your demons, even the ones you've hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I "don't deserve to live" are still there, farting wetly and hawking loogies.
With apologies to Heironymous Bosch.
The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.

(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)

To add to that, with years of excruciating work behind me and more ahead, my old motto of "change or die" doesn't carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.

But change is more interesting. A lot more interesting. And I only get to do this life once.

Conscious curiosity could be the birth of me yet. With luck.

With a better sense of what I'm doing, I'm preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.
I might as well. I'm going to be here awhile.

Speaking of which…

Marathon training update

After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that's a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.

On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.


  1. Hiya hon, first of all may I award you with the virtual trophy for Best Line Ever..."It turns out that the squat and fetid cranks who propped up my old conviction that I "don't deserve to live" are still there, farting wetly and hawking loogies." I can hear them squelching as I read that! :-D

    Secondly, in your darkest moments know that there's some of us out here who would take a call at any time of the day or night if you ever need us or fancy a chat. Coz we love you. And we don't want you to feel alone, coz we know what it feels like and we love you. I love you. Did I mention that I love you? ;-) Seriously girl, anytime, I'll send you my number so's you can text me or summat and then I'll be on Skype at the right time :-)
    You are super duper, of course, I don't have much to offer other than my listenin ears and oodles of love, but they're here for ya, xx
    Kudos for kicking the arses of the persistent demons. It's a bugger the way the turn up out of the blue like that!
    Great post Super Isy, xoxox

    1. I was nervous that this post might come across as whining. I'm still a bit afraid it might, but the fact is, this is something we hardly ever talk about -- but it may be the most crucial element in how well we do.

      Not having faced these inner demons for some years (though I've faced plenty of outer ones), I had forgotten just how tricky they could be. My slowly-growing intolerance to those who can't just buckle down and make the changes has been knocked right out of me.

      There's a lot of work to be done in finding constructive ways to address these issues. I've seen so many people suffer needlessly and die horribly because doing so was beyond them; they couldn't make the seemingly simple changes that were required. That's a real problem.

      I'm hoping that this will get a few conversations going...
      and that in turn will get a few questions asked in the right place...
      and that will create funding for large-scale studies about how this can better be managed in people generally (not just elite athletes and CEOs and the like)...
      and that will create a cultural shift where we can talk about our inner saboteurs with more ease and grace -- and less of a feeling, as I have, that I've just taken off all my clothes and peeled an inch of skin to increase the exposure! :)

  2. Ah, Isy, you speak honestly and transparently.

    I'm here for ya too; you've already helped me a lot through your blog and comments on FB, and I'm grateful to you.

    Though my friends say I'm fighting harder and stronger than ever, and on a spiritual level I'd agree...unfortunately I feel the weight of YEARS of fighting is catching up with me as well.

    I'm probably still quite intolerant of others who don't make drastic changes to preserve life, limb, etc. But it too is getting knocked out of me as I find a few knocks of hypocrisy in my intolerance because occasionally I've tolerated less than 100% from myself as well. Hard for us type A+ folks.

    Thanks for being transparent, dear. It benefits those of us fighting the same battle at very least. My favorite author who is painfully transparent about life with a disability is Joni Eareckson Tada - that lady is amazing. If it wasn't for her, I don't know how I would have made it through the last few years and come out ALIVE.

    Hugs and thanks to you! I promise to write honestly on my blog too. Elle also rocks in her honest assessment on living with CRPS/RSD.

    Love you both.

    1. Sarah, I thought I'd posted this comment already, and the second comment you sent has fallen out of the ether. Have I said electronics have been acting very weirdly?

      Thank you so much for your lovely remarks. I love being useful, obviously.

  3. I'm with Elle... on pretty much everything most of the time, but especially on "The Best Line Ever". You are so brilliant, Love. I know those demons well, and I don't think you need to apologize to ol' Heironymous; he obviously knew them well, too... Oh, us seasoned demon fighters have to stick together, gal. I'm so lucky to have come across not only your brilliant work, but your brilliant heart as well. You are a great gift to the world around you, and especially to those blessed to become your friends. Thinking of you every day...

    1. And you put me completely to the blush once again :#)

      I fiddled Hi's picture, so I could get the juiciest demons in one shot. I figured he'd understand.

      Thank you for your sweet words, Lili! xo


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