My body is a battlefield...

Musing meditations into the BPS model of Pain...

When you live with chronic pain, but moreso with CRPS; there are going to be times where the pain unfortunately is going to win more battles than you. Because CRPS turns your body into a battlefield. There are times when you can push the enemy back behind its lines, reclaim captured territory. But there is also the times where you are going to have the enemy incursion destroy so much territory that you need to relinquish it forever. It is a war that will be fought by me for the rest of my life. Sure, cures can happen any time, but it is unlikely. After 16 years of unrelenting pain and destruction, I wouldn't know where my limbs are in my sensorimotor cortex if pain and CRPS were to suddenly vanish. I barely know where they are right now. 

It's not that I don't wish for a cure - of course I do! But the chances of it being effective in my case right now are slim to none; an actual cure would always be more effective in the early stages, before the changes become more fixed. A cure may allow someone to not lose so much of their bodies and years of life to the disease. They could live a normal life again. There is no turning back for me, the life I live right now is my "normal life". Even if a cure would work for me, it would take a whole lot of rehabilitation and relearning basic skills before I could even function. Would all that be worth it in my case, just to not have pain? At this stage of the game I cannot, with 100% certainty, agree. 

Reexamination of Pain Perception while getting my Spinal Cord Stimulator, part 2...

Getting my spinal cord stimulator (my neurostim) implanted was possibly one of the most intense experiences of my life. While it was definitely painful, it was a temporary painful experience for a longer-reaching goal. It was an active choice of mine; one that I took complete responsibility in making, enduring, and accepting whatever consequences that arose from it. Come what may - taking responsiblity was a powerful position to be in. Passively undertaking treatments or therapies always made me feel overwhelmed, powerless. I don't care for that at all. Knowing and understanding the risks and life-long consequences gave me the option to decline; but even if the worst did in fact happen (paralysis, damage, infection... the list goes on!), I was prepared to accept it. The gambling risks we take for a greater windfall. 

My original intention was to sit down and write the whole experience in a clear and orderly fashion. I even did a series of paintings to illustrate my journey. I wanted to write down exactly what would have helped me make my decision back then (pros and cons, observations etc). I may some other time, but the painting of these moments gave me more to ponder, to explore beyond the factual sequential steps it took. It gave me more questions, more thought waves to surf and ride. It needed its own post beforehand, because its implications are far wider than I imagined when I sat down to sketch out my memories of moments, my self-portrait snapshots from the cheap seats.

What comes to mind when I say I'm a one-armed swimmer?

It is no secret that swimming is a big part of me. It not only was a good therapy to get me moving again after my legs were taken by CRPS, but it also made me realise how much I could accomplish if I put my mind to it. If I could teach myself to swim well enough over longer distances, using one arm and minimal leg movement, there was no limit to my abilities if I was willing to put in the work.  

I've proven my own strength to myself over the years, but putting myself to the test, pushing myself beyond my limits was the only way I could truly find out what was possible. Dancing did it, backpacking certainly did, swimming even more. I realised that even while becoming more disabled, I was still finding my own superpowers! I couldn't swim when I first got back into the pool 4-5 years ago. I had to figure out how to propel myself with one arm through the water. I watched paralympic swimmers, breaking down their strokes and tried to figure out the best one for me. To narrow down the most efficient stroke for my body, what works for one will not work for another: people with disabilities are even more varied than people without. One CRPS presentation will always be different from another, even if the same regions are affected and similar progression. 

 This is a few videos of me swimming, one from recently - this summer. The other is from a year and a half ago, while I was in the pulmonary rehabilitation hospital, where my stroke was rougher, and they weren't as encouraging of my high intensity efforts! When I tell people I go swimming, I don't think this is what they pictured after seeing how I get around on dry land! That is my rollator there at the end, my wheeled legs to navigate the world on dry land. 

Getting my Spinal Cord Stimulator Implant, part 1...

I have been cybernetically augmented with my neurostimulator implant now 3 years in December. It was fairly difficult, rather painful and unpleasant at times, long waiting and even longer recovery. Nonetheless, it was a success FOR ME in what I had wanted; though others may not grasp my goal not being a complete removal or huge reductions in pain. People may see my unchanging limitations as something to feel bad about, but I most certainly do not. Because I know where it used to be, how hard I had to fight every single day. How hard it was to put a smile on my face to not show how difficult and painful everything was. Before my batmobiel, before my rollator. Before my neurostim. 

You see, today my life cannot be further from that time, when everything was magnitudes more difficult. I fought like a trooper to do as much as I could, and paid the price. One single trip to buy some groceries, or to see my friend, would usually cost a week (often more) of flare. If I wanted to swim, it became so frustratingly difficult that I couldn't maintain it regularly. Shame too, because it was the biggest driver of my life! Swimming was where I found my power back, regained my confidence, asserted myself and found my younger self again. The younger me whose destiny was in my own hands. Those years of swimming, the fish growing up in Australia, surrounded by beaches and bush. 

Oh the humanity! Suffering Images and Projections...

I've been busy lately. Hurt people's feelings, offended others. All in a day's work, I guess. Not that I do it on purpose, but I can be blunt. I am direct, perhaps not very well attuned to the correct social protocols needed in a constant war against truth and what people want to hear. I sometimes lose respect for those who cannot cope with disagreement. I don't attack personally, I may refute statements and provide examples, flaws in their reasoning. It isn't my fault if they cannot defend their position: why say provocative things if it is just agreement you seek? Perhaps tell us in the beginning, so we know in advance. Especially if you are going to spout hate and make groups of people think they are not equal; be able to give reasons for it rather than playing a victim card when someone else finds faults in your logic. If you are being hateful about people you don't know, or about stuff you need not concern yourself because it is none of your business - you can hardly play victim now. I wasn't judging you before, but I certainly am now. Ignorance is one thing, something that can accept new viewpoints even while steadfast in ones own. Willing to understand, perhaps be convinced, or differing viewpoints. Soundbites to think about. But spreading hate for hates sake, well, you deserve my contempt for wasting my time. 

The Persistence of Memory and Coping...

I came across this video on one of my vague youtube wanderings. It came at a perfect time. I'm really intrigued by Professor Luc Bovens' philosophy, as it fits me much better than the whole optimistic delusion. Some time ago, my psychologist recommended the book "The Happiness Trap" and "The Reality Slap", I can't remember the author. However, it was while we were discussing positivity and whether it is always helpful. Sometimes we end up discussing greater philosophical questions - exactly what my mental health needs! My psychologist has been a member of cheer squad these past few years. She is very no nonsense, pragmatic and exactly what I need in a psychologist to keep my head above water. 

Epistemology and the möbius strip of pain

Debating faith and the human condition... 

I have a friend who is very dear to me. I call her my sister, because neither of us had any. To be honest, we argue like sisters too! I'm an experienced bossy older sister already in real life, so I am a natural! We challenge one another. Staunchly defend our points of view. Asking poignant questions or reflective rhetorical reasoning. I love her to death! I learn so much from her, even while I'm vehemently disagreeing and proving my own case. Even if we remain in disagreement, we still both learn a lot from the exchange. She makes me think in so many ways, and challenges me to defend my side. I often come up with more and more realisations and connections to tangental concepts and patterns while I am in full on debate mode! I loved debating in school. I got on that team and i loved it! It gives my life spice, it released a truckload of feel good endorphins. Who needs to take drugs for those sublime moments, when there's plenty in real life for the taking! 

Laying oneself completely bare...

While I hesitate to tell people, and I shudder to think what my extended family would think of me, probably wouldn't surprise the rest! I never hesitate to experience new things, even if I am afraid - terrified - to do so. I love to have my eyes opened up; living in a profound state of peace and that will never happen while being afraid of what others may think of you. I might not share it with everyone; not because I lie, hide or mislead. I need to be sensitive to the wonderful differences we all have, and I understand that other people are more afraid, or will not understand. That's fine, if they all did, how boring is our world? 

Mirroring Music Box and Neuroplastic Neural Networking...

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!  

Regarding work, and the greener grass...

Sometimes, people make thoughtless comments which affect me somewhat unexpectedly. I'm pretty thick-skinned now, so i'm not running off and crying about it. While i know there's no malice in these people's intent, i find myself going over these statements in my head. Pain has been playing havoc with my sleep lately; so going over shit in my head while i'm trying not to give attention to Pain isn't really helping me sleep. 

I've been feeling very strong in who I am. I've found my voice again, reaffirmed my power. I accept my disability more than I ever did before: it's not that I like being disabled, but what's the point of wishing for something that won't ever be possible? I made friends with Pain, Disability is just another member of this odd social group of mine. Pain is the whining, whinging, screeching complainer of the group that never shuts the hell up; Disability is the pain in the arse who always needs accommodating. It is like the one who can't just order something off a menu, but insists on ingredients being omitted, others being added; food prepared in a certain and annoyingly exact way and sent back if it's not. Disability is the Sheldon of my group! I hate being that one, I hate drawing this type of attention. The only attention I want is for that which I worked hard, or for the fun and lighthearted things in life. I wish my disability was my secret: invisible, hidden - my own business, not for others to see. Because it is not, all I can do is shield myself behind brashness and laughs; deflecting my own deep shame and embarrassment, as well as unknowingly offensive comments from well-meaning people.

Anniversaries and celebrating how far you've come!

 I always acknowledge my anniversary of my accident, celebrate it even. I know this is hard for some to understand, but i think everyone should have at least one day a year where they look at where they are: where they came from and where they want to be. New Year also works well, birthdays have their own issues! This is how i keep focussed in what i want out of a life i just happen to share with Pain. I was a little overwhelmed by the response from my friends and family - people who have travelled at least some of the journey with me. Some of those people didn't know, which is a good thing. It means that i am living a life worth living. That i am not just KJane in Pane; disabled KJane; helpless, suffering, tortured KJane in Pain. I am KJane the dancer, the artist, the traveller! LIVING... An annoying Pain patient who exceeds expectations; who is extremely hard on herself, suffers no fools, no matter where, or who, they are! I like who i have become, with all my eccentricities and faults. I trust in my own emotional strength to overcome adversity. Everything has a solution if you work hard and think outside the box. This hard perfectionist has learned to embrace imperfection! 

Pondering Powerlessness: Saving myself again...

Breakthroughs happen when you least expect it. I certainly wasn't. Especially while I have been feeling so low. Pain has been interfering with my sleep for quite a few months now, medications have been ineffective and sleep deprivation sends me insane. Too many long nights without sleep gave me a lot of time to think while listening to my Pain tunes: the playlist of music which gives expression to my pain experience. They are complex enough to focus on, rather than my Pain. There are also pieces in the mix that just give sound to sensation. I had been losing the battle, wondering if this was the natural declining progression of the CRPS. I was feeling powerless again; overwhelmed, anti-social and withdrawn. The virtual world on the interweb was just as scary, if not more so, than real life. The feeling of being judged by the faceless was more frightening than people on the street. All because of a few uneducated, stupid comments from people who should know better. I was becoming the victim again- I was letting the CRPS win. 

Something clicked a few days ago. This wasn't me. I don't give up the fight, why was I letting it win now? Depression didn't win; spreading CRPS hasn't stopped me; how many things have I overcome and won over? Why was I giving into this and losing my will to live? Why was I buying into the dumb things that were said some time ago, by people for whom I have no respect and whose opinion I do not value? Why should I have listened to that? Being told that I pushed myself too hard, that I was too perfectionist. No, I pushed myself enough to get somewhere, to function. I had high goals, but I also had a habit of achieving my goals. But what affected me so much that I nearly fell apart, was being treated as less of a person because I was disabled. "Handicapped" was their word. What is worse, I nearly bought into that bullshit too.