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.  

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