Pride of pwnership

I transferred my prescription to a new pharmacy today. When I was asked about existing conditions, I said, “CRPS – Complex Regional Pain Syndrome – and fibromyalgia.” My tone, I realized, was firm and proud.
At first, that freaked me out. Proud? To have CRPS? Just how far have I come to identify myself with this disease? 
It bothered me, but not as much as it should have. I put it on a back burner to mull for a bit.
I did some paperwork and watched a movie: Mulan, and I don’t think that’s irrelevant.
I realized that it’s not having CRPS and fibromyalgia that I’m proud of. It’s having CRPS and fibromyalgia, and still being alive – still hugely engaged – still moving to a new place, still sorting out my paperwork, still finding a new adventure, and still organizing that adventure even as it unfolds. 
I identify with whatever it took to develop the nerve, courage, and modicum of grace that got me this far. I identify with what it took to discover those who kept me alive, and made that life worth living. I identify with having gotten to the point where the things that I think about, much of the time, have nothing to do with pain, frailty, and other losses. I have this ridiculously awful disease, but that’s not where my life is. 
I have CRPS, but the verb “to have” has a number of meanings: to possess, to be in relationship to, to be required, to have a duty or need, and so on. If you’ve ever done any translation, you know what a headache the verb “to have” can be. 
In this case, it might just mean that I own the disease, in the way that hackers mean when they spell “own” with a P: pwn. To pwn something (a device, troublesome software, the CIA mainframe) is to figure out how to dominate it, because you know exactly how to make it play ball — whether that’s legal, approved, or otherwise. 
As it happens, that’s pretty much what I intend to do with CRPS.
I’m okay with being proud about that.
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7 Replies to “Pride of pwnership”

  1. I love this post!! As much as I’d rather never have developed CRPS, I am also proud of how far I’ve come in terms of coping. It’s ridiculously hard not to give up with this monster, I think we should all have a bit of pride in continuing to live and grow 🙂

    1. as we say in California, “Rock on!” 🙂

      In another post, I take the view that, in our cores, we really have extraordinary power to draw upon: “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.” It’s partly that I have extraordinary friends – many with strange or horrible conditions – but I’m convinced that most people expect far too little from themselves.

      Here’s that post. It’s a bit less literal, but I hope you enjoy it nonetheless:

  2. Wonderful as usual! Love that pwn concept… yeah, baby, let’s dominate this monster! We’ll show it who’s boss! 🙂

    1. I bet you write in Swedish far better than I do 😉

      It’s not what happens that tells us who we are, it’s what we do about it. Saara, within weeks of diagnosis, you turned CRPS into a gift of love for the greater good. CRPS sucks, but you spin gold from it anyway. That’s about you, not the disease.

      But don’t be glad you got CRPS. Don’t give it that honor. Just be glad of the friends who love you 🙂

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