Sunday, 23 July 2017

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? People may have pre-conceived ideas about me being a belly dancer. So, what would those people think if I said I was a life (nude) model for artists many years ago? Was I some sort of exhibitionist craving attention? I'm not at all really; not in the usual sense anyway! I was an extroverted introvert seeking truth through experience. I needed to learn to stand within my own skin in a vulnerable way and still stand proud in who I was - and I value that experience even more now that my body is in pain and my ability to move around has changed. 

I spent so much of my life wishing I were just like everyone else, that "normal" we all see as desirable. But I was always different, not just in racial appearance and culturally. My temperament, my being, my soul. My life experience growing up shaped me in very different ways to my peers. I had seen and knew more about life, death, displacement and pain as a teenager than most. I got to know some of the forgotten souls that society doesn't want to see; let alone know exist. The forgotten, the unheard and voiceless - the ignored. I heard them, I felt their grief. I still remember them, if only by the story of meeting them. A smile. Real living souls. 

The more I wished I was like everyone else, the unhappier I became. I fit in everywhere, and nowhere. It is a wretched place to be when all you crave is acceptance and belonging as a youth. I had incredibly strong and loving people around me, which perhaps made a difference in the end. My self-expression became my voice; my soul and saviour. I learned so much from drawing models from life, not enough from the naked form. But how could I hope to truly capture the essence of that person? That divine force which luminates out of everyone; without clothes being the outward signal of what we want the world to see? How can I tell a story by a sketch of a model? How can I hope to understand how they feel about having every nook and cranny on their bodies stared at; every insecurity about their own image pushed to the forefront? While I saw beauty and elegance in every single model (otherwise, why else would you sketch them?), I also saw a sureity that I wished I had. They were naked, vulnerable, open... but were they really? Or was it my own judgements and insecurities - perhaps a little confirmation bias coming into play...? 

We spend our lives obsessively trying to read the minds of those surrounding us and the general public, constantly putting words into their heads and making assumptions about every subtle emotion or look crossing their face. Our inner narrative: "oh my god, s/he is staring at me, they are thinking I look like I just rolled out of bed, I am such a mess!"; or: "they are looking at me like I am handicapped and thinking I'm some sort of idiot" when someone may have simply been thinking your shirt reminded them of something, or maybe they just thought it was a nice colour. They might not even have been looking at you, but thinking of something else and you happened to cross their line of sight. Any insecurity we have comes out in our made-up narrative we give others to confirm our own fears. I don't know their story, until they choose to share it, or the time is right to ask. We all have our stories. Our actual narrative. 

How would I be able to capture the essence of these models; either clothed or unclothed; without having some understanding of being the model myself. One can be completely naked in front of you, but yet so closed up and locked in that you may as well we looking at an inanimate object for all you read; just as someone can be completely covered, yet pour out their light into your hands. It was the least I could do, giving back for all who taught me over the years. And just to be able to have a greater connection, an understanding of what a gift it is for both model and artist. How it could become a collaboratation, an improvisation of continuous feedback and building upon the last. Jazz improv, dance improv... magic happens when you are put together to create something free. Understanding can fuel creativity and bring so much more to the story. 

I don't think I would be half as satisfied with what I am sketching of people if not from modelling myself. How else could I appreciate the feelings it invokes? Who are you, if you have nothing to hide behind, no clothing, no social barriers. If I know what that feels like, perhaps I can learn to read any model of mine. Everyone has different energies: their presence, rhythms, stance of choice, words and colours. Sometimes seeking them is elusive; slippery, shimmery frequency or pulse widths; their tempos. The  sfeer (environment?), gezelschap (togetherness? Collaboration?), gezellig gevoel (feeling cosy? I'm giving up, I can't put that in english!) I struggle to translate. I suck at translating at the best of times because I don't think in that way. Language is merely descriptive words linked to feelings, experiences and interaction. Some feelings I know in english feel so long ago, it hardly seems real. I feel somewhat more apt to articulate my current feelings in dutch, as my current existence is in dutch. English experiences were quite distant to my current reality, until only recently. No wonder I was so bad at regular blogging! 


Acceptance is not an end destination, but a winding uphill hike through a bushland of thorns... 



Though realisations and positive uphevals in my life happened over the many years on this journey; most of the time I was just trying to find the best, sometimes the only possible way, to get by in a particular moment. This has been the way all my life, but even more so since Pain. I had breakthroughs, sure, but it wasn't anything like the magic of dance or travelling. While in Australia 12 or 13 years ago, I still felt I was going nowhere, even though the biggest fights were behind me. I had placed so much in the idea that once my workers comp case was over, life (and Pain) would suddenly become much easier to deal with. Instead I was left with a directionless grey. I hadn't grasped that zeal for life I had in those 2 years prior to CRPS. I found my patience waning, of playing these ridiculous games which were getting in my way of living and working ever again. I just wanted to get on with life!

I did that by spontaneously taking off and travelling. This is where I took the magical journey (I am a multilingual Harry Potter fan after all!) and took my somewhat crazy ideas and risked putting myself out there. And in that, I lived a life that filled my very being with joy; sharing multilingual and multicultural stories with people who grew up in very different, but yet not so different, ways. I observed, learned, shared and began to realise that the world was whatever I wanted it to be. The vast world was out there for me to be a part of something bigger. Simply being and growing. The rich colours of languages appealed to me more than I ever realised. I was obsessively collecting and nourishing cultural histories and meeting incredibly beautiful and inspiring people. This is living, it was what I was made to do. Not waste away in a system that simply doesn't care.

There are so many people I really wish I could thank. They did so much for me at times where I needed it so badly it brings tears to my eyes to just to remember. Some may have only crossed paths fleetingly; but at that moment, they connected to me and I was so glad. Human connection for a loner is so important. It was so much easier to not speak about Pain, especially with people I didn't know very well. In shaping my own reality; in being more than my physical condition; I also had to shape others perception of me in our interaction. Too much truth before I knew the other person could hear it only made me feel uncomfortable, the other party even more so. If I shared the information too soon; of my Pain or the rarely heard CRPS; the interaction could change. Suddenly, I would be seen differently. People were so kind to me; we were all curious travellers after all. The same tribe. They opened up to me, I opened up to them. We shared our truths in a beautiful and ages-old way. Sharing in whatever languages we had that were the most easily understood by the other. The international melting pot ingredients: gestures, guesswork and smiles. 

Before I left, I felt this endless frustration. I felt boxed in by low expectations, which made me angry. We don't mean to do it, but sometimes we inadvertently change our expectations for people with disabilities: Instead of admiring their achievements for what they are, we admire their abilities to put their shoes on the correct feet as "inspirational". I hate being condescended, belittled. But I hate inspirational porn even more so, and being made the subject of it infuriates me! I was always an artist, always seeking to explore as many possibilities as possible, in as many ways I could. I'm not an artist because I am in pain, or disabled and need a hobby. I am an artist who didn't ever really intend to be one. I just needed to take notes of my memories, moments of time and feelings I cannot trust to stay static in my own brain in the ravages of time and editing. How many of our histories are lost, questions we do not ask in time? I needed to give it a place. I needed to stare into my own eyes in a mirror, and understand the person behind them. The only way to make sense of Pain is by knowing who the person experiencing it actually was.

Those closest to me carried the brunt of it all, but I also had some surprising allies at times. Over 14 years ago, there was a man who approached me in a bistro while we were eating. He gave me his brother's card after seeing me struggling to cut my dinner. I did end up seeing him for treatment. This MT was at a loss after trying to help me and not really being able to make any difference. So, he got me in to see Steve Lockhart, who didn't take many referrals. Or in 2009, Coralie Wales guiding me again when I got lost in the system, and sending me to Prof. Milton Cohen. Or in 2013 in Australia: the chiro who suggested a neuro, who suggested the pain doctor who suggested the spinal cord stimulator that got me back here to Nederland decide between rehabilitation or to seek out the Belgian neurosurgeon in a Dutch hospital right next to the German border to see if this was truly an option for me(see The Blame GamesThe Name Games, The Lame Game and Validity Rules )  And if you think that was a mouthful, the process was even more exhausting and drawn out. But ultimately worth it. 

But it was right, I was on the good path that has led me here today. I proved to myself that I was the one in charge of my own body, its sovereignty. Realising that one option wasn't for me, proved even more significant than the options that were. Where I learned to trust in my own abilities to withstand pain and disability when following my true path in life. Or the doctors in my long hospital stay who listened and respected my wishes (Pondering Powerlessness) and as a result, my experience of being in hosptial went surprisingly emotionally well. These rare jewels in the huge bag of rocks that pain management treatment is. The ones who presented me with reasonable options, or sent me onto the best person they believed could help me at that moment. Answers. I have a lot of respect for those who recognised how important it is for me to make a situation tolerable. Allies, rather than more of the same useless and generic advice that holds no relevance to the life I actually live, offering no solutions aside from trying to make me "normal". These people who helped me nurtured my creativity, respected me for who I am. They gave me a map when I was lost, helping me navigate through the mess to find the oasis where I can just be. On the most part anyway. 

Nonetheless, my early years with Pain dehumanised me more than I realised. My body was out of my control, every attempt I made to reclaim it from the pain wasn't working, but it wasn't for lack of trying. Anyone who has spent time in the medical system knows that feeling. I wasn't giving up, I still trusted medicine and the expertise of those who earned my respect, I still kept those allies. I just needed a fresher approach. I needed to be the architect of my own reality - to do and be whomever I wanted to be. In doing this, I was just doing that which gave me energy. But Pain was changing form. Not the actual pain intensity, that has only varied 1 or 2 points on the higher end of that ridiculous scale. It was my pain experience that shifted, along with my relationship to Pain.

The more I danced in those early years, the more I noticed this shift in reality. I really was throwing myself wholeheartedly into it and obsessing over lines in the mirror: correcting, rebalancing. I listened intently to varied styles of music in order to understand its phrasing, its own lines and language. This constant work on my body; while essentially a creative and scientific exploration for me; was pushing the boundaries of what I could actually do. Testing the water, getting more confidence: learning to swim after being afraid of the ocean. In staring into the eyes of my own  fears; my anger, my constant frustration and feeling insulted and demeaned; Pain even - I understood their essence, their language, their shapes. It was a force to be reckoned with, something I could perhaps channel and utilise. If I couldn't change the facts, then I could change my reality and relationships to those facts, and use their power to my advantage. It was like all those negative emotions were finally useful! I finally had a turbo boost of energy I could call upon when I needed. If I was going to have pain for the rest of my life, well... it needs to pull its own weight, because I wasn't indulging, nor giving into it again. Dancing allowed a whole new identity that was somewhat independent from Pain. When you are balancing a sword of your head and dancing, no bastard is looking at a slightly oddly-held floppy arm! Nor are they pitying me for "suffering". That isn't who I am, nor does it speak of my truth. It gave my power back. 





Yes, these are really me. Not a photorealistic portrait, but my essence. I did them from videos and photos of me dancing back then. I wanted to sketch more than just my movement, but the feelings I had back then. The limitless possibilities that can come from hard work and discipline.


The stifling of discourse and debate is harming us...



These conclusions are mere speculation, based on my observations and experience - my opinion. Theories I may hold today, but change tomorrow if presented with superior evidence. That's a good thing! I was taken aback by a thought-provoking debate on fb, where someone was concerned how I may feel about disagreement with my statement. It was kind, I think. But it never entered my head even to take offense. I was however, observing that type of  behaviour in other debates and feeling saddened by offended feelings hijacking the learning process and exploration of differing viewpoints. I believe that our best work comes from reflecting upon your own standpoint: adapting; refining, if the science, logic or evidence, no longer agrees. I am constantly reassessing my artwork or writing; seeing what works, what doesn't, where I can improve. Critical analysis is essential if you want to improve anything, to break barriers and limits. It drives excellence. 

There's no shame in bad sketches if you learn from its mistakes. I am putting my stuff out there again, my observations, my artworks. Not for bullshit admiration, or even to be 'liked' or necessarily to be agreed with all the time. I want information sharing. I want to know how they see things differently to my viewpoint, and I want to know why. In these discussions, I am the opposing side at times, as I speak from the completely different viewpoint as a patient. A bossy and demanding patient perhaps, but I am not in opposition. 

I need to know that whomever is treating me truly stands by what they say too, that their expertise and experience believes it. I need to know they are humble enough to change their approach if something doesn't work, and able to provide a valid reason or opinion based upon evidence from their training. I don't speak for all patients of course, I certainly wouldn't presume my reality was anyone else's. However I am not afraid to stand up, be heard and yes - disagreed with, when being presented with opposing evidence. I don't have to agree with you, you don't have to agree with me. But maybe some day I will come to understand your viewpoint, or you may come to mine. Or not. Nothing is lost, I defended my side and this debate may have reaffirmed my view, or changed it for the better. This is a very positive thing! Getting offended easily is a position of powerlessness. I am definitely guilty of it in the past. It stifles innovation, because it suddenly becomes about mind-reading intent of another and feeling victimised; rather than actually sharing and learning from all these different viewpoints. Life and truth are not bipartisan!  

While I am looking for answers to my questions, I know I may never get answers anyway. I don't mind. The question is more important than the answer. I am long used to explaining to professionals in both my native english and newly-acquired dutch language about mirror boxes, neurostimulator implants, CRPS, even asthma. I keep up in clinical practices in english, dutch and french innovations in CRPS; not to mention what's happening in Australia and what I get from my old contacts in the field. I take these studies and options to my specialists; if not for my treatment then it is to share innovation from circles they may not be in. I'm doing quite well these days, better than I have in a long time. What serendipity crossed with research and reflection produced, gave me back my joy. 

My actual surname means "bridge", and I enjoy very much being able to bridge many different worlds. I bridge cultures and languages every day batmobieling over bridges in a country I was not born in; living in a completely different world to the one in which I grew up. I did it all with Pain. My life goes well in general, but I have a lot of support too. I try to minimise my medical interventions, but I also need to accept that assistance and help isn't a bad thing. I don't necessarily need a friendly or warm doctor, but it makes the exchange more pleasant! I'm a much tougher patient these days, but also more direct in what I need, why I need it and firmer in establishing my own autonomy. I would earn their respect over time, but they also must earn mine. How else will we become more effective at what we do if not open to new and different things?

I might not be providing clinical information in that setting; not because I don't have it, but because it isn't relevant to the situations I'm discussing. I am merely providing an alternative viewpoint under the greater, more common chronic pain experience. My research is more specifically CRPS-related. In giving a (in my) case study; what I observed, my conclusions; I'm happy for a better explanation, some clarification, or even to be proven incorrect by studies or data I may not have heard before. I welcome it, in fact!

I get a little sick of being told I'm the exception, because I don't accept that at all. I *shouldn't* be the exception, because that means people haven't been taught good pain science or are simply not being heard. It also assumes that I am incapable of being on another level than just a victim to Pain and circumstances. I feel I'm incredibly normal and boring, but I have been very lucky and fortunate over the years. I am the exception because of my background, my achievements, my experiences, or my art; not because of my discipline and unwillingness to accept the alternative - that is simply hard work. You grow and learn much more by defending your stance, only to spot the holes in your own reasoning. Debate is stimulating, dissent even more so - just don't be arseholes, but that goes with anything! Disprove or argue the statement, not the person. I just hope that perhaps one day, what I shared may have relevance for another odd patient who comes to them for help, maybe help them find a creative way back to their voice. Maybe understanding more of the experience will make for more effective pain treatment in general.  


The weary workers compensation warriors...



 I am coming from a very battle-hardened place. CRPS and workers comp made those early years of the "intolerable pain" into infuriatingly powerless years of intolerable pain. I fought very hard, with all I had. I was no victim. If I needed help, I would ask for it. Not that I did very often, but it was an option. Asking for help has only come about more recently. Now I understand that it is far from weakness to need help from others. I would figure out what I needed to know, whom I needed to see. I detest feeling powerless, it truly is intolerable to me. Pain is tolerable, on the most part. Especially now that it's just a physical sensation, not my reality. But powerlessness envelops my being and chokes me of air. Being hospitalised for severe asthma for months  was, on the most part, fine. Shit happens, I was fine with it once I established my own sense of autonomy and wasn't dependent upon asking for things I could easily do myself. On the other hand, being belittled, or treated with condescension when I am treating them with respect is something I will not tolerate in any setting. Under workers comp, I followed the rules, making sure I knew the laws even before I began law school. It certainly seemed a natural progression on the path I was on back in those confusing years. 

It was just so frustrating, I did what was asked and expected, and it wasn't good enough. I didn't just "believe" myself to be right from a moral standpoint, but I knew I was from a legal one. I factually presented my evidence for my case, and evidence for my compliance, documented everything. I also didn't back down unless it was over; but even in a loss, I wasn't defeated.

Sure I cried a lot, failed a lot, felt like I was an utter failure to have not 'fought harder'. Fought harder - with what? They already had blood, sweat, tears and constant attention in my brain that I should have been concentrating into getting better. I was breaking myself and in my own time, studying something that could lead me into being employable longer term than anything else. Instead, by their rules I was being forced to job seek, do work experience or short term paid positions with impractical restrictions. While going to uni at night on my own time and at my own expense, because "it was education at a higher level than the job in which I was injured". I was juggling all that and the Pain. I would have accepted that more if following their rules was on both sides. They were so busy limiting, restricting, delaying or declining my treatment/managment approval; while at the same time shuffling me from case manager to case manager, that they didn't bother to pay me on time. Approval and reimbursement for medications/treatments only really happened after being chasing down by my endless phone calls; and my rigorous attention to detail in noting the names of whom I spoke, the times and dates, and any promised outcomes or solutions showed I meant business - I wouldn't be backing down!

During those years, I began to hate myself. Losing my will to live in so much pain if everything was always going to be so damn difficult. I was sick of fighting, accustomed to being treated with so little respect that I was overwhelmingly grateful to those who showed me respect, gave me dignity and did try to help me. But the will to live, to keep going... it was tough. Still is at times actually, but nothing like that time. But what was worse than that feeling, was the thought of being beaten by a foe who isn't worth my time. That is insulting on so many levels. I wasn't being ridiculous, unreasonable, malingering. I was in so much pain that I couldn't cope with that and being bullied. While that culture of picking off the weak pissed me off, I was even more pissed off they thought I would just take that kind of bullshit quietly. Haha! They had no idea who they were messing with!


Divine inspiration... 



Pain can be channeled, not just to save yourself from drowning. It fuels my creativity. I argue with my Pain, bribe it, negotiate with it so that for a temporary moment it can shut up Pain so I can just get on with it. I'd be in pain later, but for indulging my passions - Pain and I make beautiful artworks together! The price of Pain I am happy to pay in return for something more valuable. I have stared down the barrel of many a foe, but none of them were close to destroying me more than my own brain. I will never be defeated by another ever again. And myself? I've stood bare, naked and unafraid in front of others. I've stood there with nothing to hide behind; nothing to shield my vulnerability, insecurity or fears. Not only in the indignity of being a medical patient, but for artists to learn, create and explore form. And in doing that, I learned a lot too. I learned that my body is my own, and my destiny is in my own hands... even the painful one. 

That grand European adventure of nearly 12 years ago, packed full of so many of these supernatural epiphanies from the cosmos that it is another series of writing I am terrible at completing. It was in the Swedish Arctic winter that I made the biggest breakthroughs and began this new path and direction I'm on today. The experience of sauna was so wildly primal, yet it was so simple too. A mixed-sexes fully nude experience of intense heat and freezing icy cold. Confronting at first, even for me. We are all a little uncomfortable to let go of our coverings; our clothing being our masks; particularly in front of people we had only just met and knew nothing about. Without the detachment and distance you have as a model in front of a class. But even the less daring/more curious may find it strangely liberating. 


We are all exactly the same, infinitely more interesting and tangibly real without anything to hide behind. We use clothing to make statements about how we want the world to see us: telling without actually showing who we are. We end up fooling ourselves, full of preconceived ideas and judgements about others. Fooling ourselves into believing we need to fit in somewhere. We automatically assume others are judging us, because we are busy judging them and ourselves too! Without our wrappings, our shields of clothing and self-delusions, we are left only with who we are. Human, beautiful and unique, but as nature intended. Scars; of both the physical and emotional, only making us more beautiful in their evidence of our living lives worth living. Scars tell the story, the navigation maps we took to be who we are. 

The only real judgement or preconceived ideas you have in this state are whether we have a common language to communicate in. It's a very unsexy experience, and beautifully and wonderfully natural and connected. In shedding our clothing, we opened ourselves in a whole new way. Able to be open with one another, curious and sensitive. Open books. Sharing our stories as we shared this age-old experience. It was up there, standing naked on the snow, with the aurora above; listening to the chatter of the sled dogs where I understood this mystical connecting force in the world, joining us all in an unbreakable way. How can Pain compete when you are living your truth? I realised that anything was possible. This is but one of many, of those magic moments where it all flows together in a huge waves of understanding. Where I feel like I'm dancing to the beat of the earth's drums again, to the colours and lines of our world. Where I feel I can touch the sky, understanding the ultimate truths of existence. A place where fear and insecurity, or even Pain, cannot hope to enter.  



Tuesday, 11 July 2017

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!  



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! 




These 2 are my "training" with dip pen and india ink. I am making the most even, tidy and careful lines I can. Connecting my hand movements with my brain's expectations. If you look closely, you can see the linework even inthe darker areas. 


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? 







Musicians make for beautiful sketches, the music dancing my lines like it danced my body!



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...




Single-line self-portraits with Lefty and Righty hands working together, mirror image sketching. Now, that's cool - neuroplastic brain! 



And just to show what it looks like with one handed. Still not necessarily flattering, but i hardly care!





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. 


Friday, 7 July 2017

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. 

Disability is the one who forces me to hold my bladder and nearly wet myself, simply because i cannot find an accessible toilet. Disability is the one who locks me out of social gatherings upon finding stairs, or realising there isn't enough room for me to get around with my wheels because the doorways aren't wide enough or tables are too close together. Not to mention the inevitable bikes everywhere here in Amsterdam, clogging up footpaths, or parking my batmobiel in so i cannot get out (and i can't move the bike either!). Disability makes me vulnerable, fearful i may not be able to get myself away from danger; trapped with no way out and waiting for a rescuer that may not even come.

I have compensated for the losses in my body fairly well, on the most part. Old hobbies transformed into new hobbies, wheeled mobility and a toolbox of training and adaptability. I certainly have much more today than i've had in the past, both in the practical sense as well as emotionally. I actually feel much less disabled now than i was before. I can leave my house, socialise more, participate in the real world again. I cannot stress the importance of all of those things enough, even for someone like me who is comfortable in their own company. Especially for us loners, who may not recognise their own social isolation as easily as others perhaps could. And it is very easy to slip deeper and deeper into this prison. A prisoner in my own body, held hostage by my Pain, life without parole. Why add solitary confinement to all that? 

In the past few weeks, i've heard variations of a notion that bugs me quite a bit. When it's said to me, i am so taken aback i don't really know what to do with it. I guess i just brush past it; not wanting to draw attention to it, nor make a scene with my social model of disability activism! Maybe it's not the best response, perhaps i should use that moment to gently explain why it isn't really cool to say stuff like that to people who have a disability. There's a time and place for that sort of thing, i'm not going to jump on it every time something a bit thoughtless is said. I've likely said a lot of unintentionally offensive stuff to others myself! And the politically correct police can take too much fun out of life, bugger that! I don't want people to feel they're walking on eggshells around me or anyone else, scared i might take offense at something they say. So it's a tricky balance: when to gently correct assumptions, and when to just let it pass and be forgotten. 

The assumption? Work. How lucky i am to not be able to work, having all my free time and all.... i know it is just a general statement, i get it! But it bugs me because i wish i could work, more than i wish i could walk again. That i miss going to work, going to a place every day that values my contribution and utilises my intellect and skills. A place where i can be someone else, have innane chats about boring stuff, wearing a personality uniform that i can shed when i get home. More importantly, i miss having an income, being financially independent. 

I got my first job at mcdonalds when i was 15, i was so proud! After school and weekends, it was great! Independence, responsibility - i loved it! I worked in bars and pubs, in a printing mailhouse. Honest and physical work. Then, i got injured at work, and it all changed. Suddenly, options were closing and what i had taken pride in was taken away. I ended up in a whole new direction, all the workers comp fighting, then working in a trade union ignited something in me. I went to uni to get my law degree, even though workers comp didn't approve and i still had to jobseek for jobs that didn't exist for me within their restrictions. After some work experience stuff, i ended up getting a part-time position as an advocate, working in a tribunal. Initially i loved it; i was idealistic and wanting to help people find their own power, to represent them or explain to them how to represent themselves. To  educate them in their own rights, for all the times i had to figure it out on my own without guidance. But idealism doesn't always work in the real world, with desperate people whom the odds are stacked against. I got frustrated being blamed when i'd done my best, by people who didn't listen. I got frustrated when I couldn't help someone or when the rules weren't followed. The politics, the games... it's not paranoia when they're really out to get you, and i felt i was fighting too many enemies, not to mention the enemy CRPS. 

That all played into why i left everything to travel. Despite doing all this, i still felt terribly disabled. I was disabled by the workers compensation system, that demanded i jobseek under ridiculous restrictions for jobs that didn't exist, while not even paying me on time when i had done everything by the book. I was disabled by not being able to afford to pay upfront for my non-PBS (pharmaceutical benefits scheme) medications that i waited for months to be reimbursed, and being refused a specialist that may have helped me in the early years. I was disabled by being forced to jobseek and study at the same time, because i was studying for a higher level than the job i was injured on. I could go on and on, but needless to say, that system disables people more than the injury does, then punishes them even when they are following the rules to the letter. 

My travels brought out a whole new me, one who was strong, independent and could find solutions to any problem i encountered. No one really knew i couldn't use my arm properly unless i told them, or if i had one of those days where i couldn't hide Pain any longer. The kindness and care that people, many of whom i had just met, showed me during those terrible moments was that they didn't think any less of me because of my disability. Who sat by me, soothingly reassuring me as i lay in a ball crying in pain. I probably frightened them. They didn't really know me that well, but in witnessing those horrible moments with me, they saw a side of me i fiercely kept hidden. They saw my vulnerability, my deepest secret from the world; they saw my strength in overcoming it. 

When i began my life in Amsterdam, after months of backpacking, i fell i to a job which i loved. I was working with scientific publishing. It was something made for me, my interests and i was good at it. I also got access to publications to do with pain, the proper peer-reviewed research into pain. I started to realise just how privileged i was in my pain rehab with "The Chronic Pain Group" (now "Chronic Pain Australia") and Dr Coralie Wales. All that i had learned many years prior, was only now coming into the forefront. Revolutionary, understanding the neurological mechanisms in chronic pain lessens the fear in pain and enables more detachment. I worked there for 3 years, circumstances changed and i realised that i wanted to get my dutch language diploma and retrain in a completely dutch-speaking job. 

I love languages, so i was glad to finally learn how to properly express myself and work within another language. I ended up retraining as a dental assistant. As a child, i was fascinated by dentistry, thought about studying it too. But now, here i was training as a dutch dental assistant. It was something i felt was made for me. The work with my hands was difficult at times, but yet i was also at an advantage by being left-hand dominant. What made me an even better dental assistant was my understanding of pain. It was incredibly rewarding to be in a job where someone would come to is in pain, and we were able to fix it, to relieve it. For someone like me, to see that pain could be cured gave me hope unlike i had ever felt before. It was truly special. It was also something that was taken away by CRPS, as it was slowly spreading to my legs. A small fall on the ice only accelerated what was already happening. CRPS has its own mind, it is out of my control. All i can control is how i react to it. 

Since that time, i haven't been able to work. Not by my choice, but by circumstance. I am lucky to have a partner who supports me, as i do not receive any welfare or assistance aside from my scootmobiel and stairlift. It doesn't mean i spend my time chilling out, watching soaps and all that. I help with administration of my partner's business. I also swim and do my own sort of physio and mirror box therapy, keeping my body as active as possible with my limitations. I paint and sketch, exploring my creativity while keeping my brain connected to my CRPS-affected arm. And to be honest, staying alive and healthy were top priority over the past 2 difficult years with my asthma! 

I know people mean no offense when they say stuff like that. I know that everyone has days where they dislike their job, and wish they could be free to do their own thing. It's not really offense i feel; it's a little bit of jealousy too, if i'm honest. I feel jealous about people who can work, who aren't judged for being disabled. Who don't have to think of all the fore planning, preparations, alterations. I am a bit jealous of the normality, i wish i were normal too. We all wish for what we don't have, the grass is always greener on the other side. I know it's not personal, and i just let these comments pass. It is interesting that by writing this post, i have come to conclusions about my feelings. In writing these words, i realise what it is about it that bothers me. Much like understanding pain, understanding why i feel these emotions makes it much easier to let it go. I don't need to be a social model activist all the time to feel strong - i am already! By living my truth, i am being my own activist; one that is perhaps more convincing than one who shouts it out loud every time someone carelessly utters a statement. We all have our truths, we all want what others have. But no matter what, i am truly grateful in all that i have, in all that i know. I am one of the fortunate ones who knows who i truly am. 

As Polonius said to Laertes before he set off to Paris "This above all: to thine own self be true." [Hamlet: act 1, scene 3, line 78] Good advice, though don't be a hypocrite like Polonius! 


Thursday, 29 June 2017

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! 


My facebook post:




16 years ago today, my life changed forever. CRPS took my arm.
15 years ago, i couldn't physically write or draw. I was powerless against outside forces. 
14 years ago i was dancing so much it consumed me.
11.5 years ago, i was in the Arctic Circle, travelling on my own with no backup, terrified to let anyone know how difficult it was. No one could know how much pain i was in.
11 years ago, i was in Warsaw, ready to travel on to begin my life in Amsterdam. 
5 years ago, i was skating on frozen canals of my new city, feeling the freedom of flight. I was able to forget i only had one wing left! 
5 years ago, CRPS took my legs too, but i didn't care because i had already lived many of my dreams that needed legs anyway! 
4 years ago i was basically housebound. I had to figure my way out.
3 years ago, i discovered i could swim with one arm for a kilometre no problem!
3 years ago i got my batmobiel, and the city was mine again! 
2.5 years ago, i got my SCS, a neurostimulator implanted into my spine like a cyborg!
2 years ago i nearly died, but didn't! No way was that happening on my watch, after how hard i worked these past few years! 
1.5 years ago, i was in a revalidatie hospital with a great group of people sharing the festive season. 

1 year ago, i was trying to find my way back to my "social model" faith. 



This year i am sketching like a woman possessed, consumed in it like dancing! My lines dance instead of feet, flying across the page like i flew over the ice. Despite the CRPS in 3 limbs, in spite of it. I don't care about being in Pain, listening to its whining and tantrums give me the shits, but i don't back down. And it sure hasn't stopped me! I trust in my own strength and know exactly who i am! Not some bullshit inspirational porn - but a pain-in-the-arse stubborn freak. And let me tell you, it's something i was way before i became disabled!



And there you have it! I really am so grateful and so happy with all I have done over the past 16 years. This is but a very small snapshot into what it has been. Sure, there have been months, years of darkness. I didn't mention that 8 years ago, I was so depressed I lost my will to live. I put it behind me, it is over. Just like fighting workers compensation.  

That was the last time I truly felt clinical depression. I plan for it to remain that way. However, my pain then was no worse than at any other time, what made me so depressed I almost lost my sanity was sleep deprivation. Pain interferes with my sleep all the time, but sometimes it gets in the way more than others. Sometimes I go through periods of months, where the insomnia starts making me a little crazy. I'm not the only one, anyone and everyone who go for long periods of no sleep will eventually go insane. Actually, I am in a period of insomnia right now, only this time I am in a huge creative flurry of activity, which I believe is much more healthy! Eventually something will click, I will sleep again and life will go on. 

Pain hasn't won for a very long time. It knows who's boss. I give it time to feel, but then it is over and I go on living. Pain hasn't ended, I get no breaks, no times where it is gone. But I choose where and when to give it attention. I give Pain love, discipline and rules; I've learned to love that aspect of who I am, not because I am a masochist but because hating it won't change a thing. Wishing it would go away or to be cured is pointless, because by now it never will. Besides, what would I do if it did? I know how to move my limbs with pain, I know how to function with this loud static in my neurosystems. If it is gone, how will my muscles work? How could I stand, walk, write, sketch, brush my teeth or anything else? The brain is a mysterious and wonderful thing; so much it does without us ever being aware of it, but it relies on feedback and constant imput. If you remove a huge source of imput, the other systems can crash and it won't know how to adapt. I have adapted to the new world that I share with Pain. It didn't stop me doing all those things and more, perhaps I never would have reached the stars otherwise! 



Thursday, 1 June 2017

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.