Yes, I love aliteration! There have been many times in my life where I feel true insanity. Usually after long periods of hermit-itis, and long sleepless nights in Pain where I ponder my very existence and ability to withstand it. Then all of a sudden I crash into the world again (sometimes quite literally!) with a huge drought-ending outpouring of words, images, sketches, paintings; making huge leaps in my skills as I trust in my hands again. It's like an obsessive compulsion, I can barely control it, nor resist it. My head is screaming at me to 'shut the [insert choice word, multiple language] up' while I ramble like a crazy woman. I don't know if it is me trying to redirect people from seeing the rollator or batmobiel; that odd 'maybe talking will cloak it invisible...' idiocy! Or maybe I'm just nuts. I'm the queen of making an arse of myself, so... still the same person, I guess!
I'm working out this wild wild west of social media, where to put some sketches here or somewhere linked. There are particular sketches which I really want to share here from a neuroplasticity standpoint. Because, turns out... there's some freaky shit going on! Stuff I may not ever have noticed, or even learned without 16 years of doing some really hard work reframing my Pain and fighting the instinct of immobilisation. Gentle, flowing, MIRRORING arm movements from dance and discipline; lots of vain staring at myself in a mirror, moving and controlling. I was determined to fool the world into thinking I wasn't in pain or struggling to know where my arm was if I wasn't looking at it. Later, somewhere around 2009, I got my mirror box, so worked on it on and off. Honestly, I was less disciplined with this than dance, but all in all, the aim was the same. No one can see how much pain I am in. I want to be 'normal', not judged or treated any different. It was only the sharpest of eyes that detected anything was amiss, but it was subtle shift of dominant and non-dominant sides, brain connections rewired in strange ways, but working in ways that none of us could have predicted.
This is both of my hands... sketched with both of my hands! Lefty sketched Righty, Righty sketched Lefty. Small differences, but not so different that you can instantly tell what's up!
The past few years, Lefty seemed to be carrying too much weight (rollator is better than crutch, but same imbalance) plus everything else it does. Lefty and Righty shook hands and decided a proper separation of rights and responsibilities, in a calm and orderly fashion. Very EU of me! Lefty would carry the body, through rollator, driving the batmobiel, swimming laps. CRaPSy Righty had to take on writing, sketching, painting, inking (my new love affair with liquidy magic!) fine-motor skilled tasks AND I DON'T WANT ANY COMPLAINING! Righty doesn't play fair, she's a real moaning whiner, but I'm gaining more resistance to it. Especially now. Capturing my joy again, and that intangible quality I felt in dance, is by far the best antidote for someone who lives with continual pain. Pain doesn't ever change too much in volume and intensity, but in those special moments - I am free, flying over ice, dancing within the music. Sketching a moment in time that will never be again. These are moments to collect and keep, because that is living. If I learned anything these past few years, it is that I want to live and not just survive. I want more than existence, but to explore, capture these moments here and now - ici et maintenent. I want this so much that pain loses more battles with me than it wins. Actually, it never wins; merely irritates the living shit out of me. Keeps me awake, gets in the way, makes me unreliable, as we say here: 'aso' (asociaal)! - antisocial, a great sin in this country! But that isn't losing to pain, only that everything has its price. If I want to live the way I choose, I will pay the price of pain in order to achieve it. It's not a big deal to me, pain just doesn't hold so much power over me any more. What can it do? Hurt? Big whoop! I couldn't care less!
This is a self-portrait, where I remember that feeling again! The movements, the freedom...
Even so, a sleepless night or contracture in my arm and foot along with any number of unpleasant pain sensations doesn't cut it for an excuse anymore. It doesn't excuse it from not doing what I ask of my body, because I'm not asking too much. And when it comes to my oldest frenemy Righty, well... Righty will be making whatever implement in my hand create endless lines and repetition, in order to reconnect my painful arm to my brain; making connections that involve a very natural skill I had before the injury. It's something I have done for a very long time, in many different ways. My CRaPSy martial arts. It means that now, I can generally trust my hand sketching at a very quick pace. I've restored so much fine motor control it frightens me. 16 years ago, I couldn't even write with it, now I am creating. My arm is still just as painful as ever, but while it sketches, the nerves are so busy controlling whatever uncontrollable and unpredictable brush i choose to work with, flowing watercolours or ink with a dip pen. There's no rehearsal, pure improv; making it up as I go and trusting my Painful friend to work with me. We are together forever after all. It's a ratty teenager that should be pulling more weight, but now generally does what I ask of it. Progress!
Turns out that pain is relative. I still remember the pain and difficulties I had when it was 3 limbs stuck at 7-8 all the friggin time. I went through all I could find and decided the risks I could live with, and got my SCS: my spinal cord stimulator, or neurostim, for my legs (it was too late for my arm). The relief of 40-50% of the pain in my legs was awesome: 3-4 in the beginning, it's crept up since then, up at 5-6 now, but I hardly care anymore. I turn the volume up! The static of the neurostim affects my whole body to some degree; a white noise machine implanted in my spine that really is neurologically 'loud'. So loud that it takes some attention away from pain, helping me stretch out my dystonia and contractures - the reality of longer term CRPS. Fortunately mine only come in bursts; in my legs I get some tremors, but that could be due to the neurostim being so high. I'm used to it, riding my tremors like a surfer, balancing well with it. Like dancing with the sword on my head: finding the balance point and compensating. I'm more sure-footed than I look. It's been a very long time since my last public falling-over humiliation, I must be doing something right!
I don't want to necessarily pull up every sketch that works on whatever level; there's way too many, I've got literally 100s from the last month or so that I'm not ashamed of, which doesn't say much. I have my emotional connection, to the lessons each and every one taught me. I'm still learning more and more every time I sit with an empty page full of possibilities, then fill it with lines. There is value in slow and careful lines, in the control of such fine-motor-skilled movements. Even more value in the loose and lovely, lively and mysterious lines and marks in quick moments of time! My hands don't hurt any less than they ever have, stuck on volume 8 forevermore. But I couldn't care less. My arm is MINE again, I call the shots now. And it creates these lines I stare at for hours, figuring them out, reading in them a whole new language I never knew I spoke. What room is there for pain when your brain is busy with wonder?
The most exciting discovery I've made in this, is something so extraordinary I never would have imagined it! I participate in a self-portrait group with its weekly challenges. One week was a single line (no pencil or pen lifting off the paper), easy enough. I decided to try something new. Single-line... but what if I had 2 single lines, 2 separate hands together, to make my face! I realised about a month ago that I can write with both hands at the same time. I can even write in mirror, or the same way. These self-portraits are split in the middle; a little too "Australia's Most Wanted" mugshot than I'd like! But I'm not an instagrammer seeking the best selfie - it'll do! What is shows is something pretty out there, as far as brains go. That I have compensated quite well, actually, very well indeed. All that mirror box and L-R flowing mirror movements have worked. There is still quite a lot of pain, but despite that, I am functional to a degree, more functional that I ever would have dreamed I'd become. My superpower, sketching a mirror image both hands at once. This is just the beginning of exploration...
That is a huge effing win in my book! I know what the realities of long term CRPS does to people. If I can change my story somehow; keep grabbing what I can back from disability and CRPS; then I will win every day. I may not walk without help, but I sketch quite well. I am as independent and mobile as ever. I tick all of the healthy boxes when it comes to socialising and mindset. In fact, life hasn't been shit for a long time; even my "blues" over the past year has been more of a normal, northern european vitamin-D-lacking withdrawal, rather than clinical depression. Most of it was resolved with a good night sleep eventually. And a run of deaths, a long hospital stay and an even longer lung rehab stint where I was told how handicapped I was didn't get me close to depressed. Only assertive. Perhaps too assertive, 'dominant' in dutch. A pain in the arse, actually!
But for the first time I realised that I was the one in control, how vital it is for me to keep that - guard that. I have an inner power. I won't give into my own pain, so I sure as hell won't give into other peoples judgments about my abilities. Especially when I am faced with anyone who tells me what I 'should' be doing by someone who doesn't even bother to find out what I 'can' in fact do, which is a hell of a LOT! I survive, I solve what problems I can whenever I encounter them. A bad day is just a day, or a week. Temporary, it's ok to give in sometimes when you are in a safe place. It's taken me a long time to balance the two halves, but I'm closer now than ever. That's worth the price of pain, something that is paid regardless of what I do.
But for the first time I realised that I was the one in control, how vital it is for me to keep that - guard that. I have an inner power. I won't give into my own pain, so I sure as hell won't give into other peoples judgments about my abilities. Especially when I am faced with anyone who tells me what I 'should' be doing by someone who doesn't even bother to find out what I 'can' in fact do, which is a hell of a LOT! I survive, I solve what problems I can whenever I encounter them. A bad day is just a day, or a week. Temporary, it's ok to give in sometimes when you are in a safe place. It's taken me a long time to balance the two halves, but I'm closer now than ever. That's worth the price of pain, something that is paid regardless of what I do.
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