Wednesday, 9 August 2017

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. 

These past few months have been a flurry of inspiration and deep understanding, as I've began to make sense of all that has gone on these past few years. Not just to me bodily, but around me. A string of deaths, of some of the people who helped shape me in my early years. Those whom impressed upon me, taught me and made me laugh. That unspeakable feeling of being utterly torn apart by the grief that they are no longer of this world. Was their story complete to their satisfaction? Is it ever?  

As I looked back to other loved ones who had been gone many years - decades - and I was struck by the realisation that time fades your recollections. That static moment in time has passed. How profoundly sad I felt by the realisation that some of my strongest memories of them was of negative, angry, or regretful moments that leave me with a sense of deep shame. That isn't all I remembered, but what honour was I paying them by only focussing on the guilt, my guilt? 

I pulled out every memory I could, no matter how mundane. Wrote them down. What I realised while doing this consciously, was that it was the funny, the embarrassing, the quirky memories that emerged as the ones that help me ease that emptiness. I was remembering the person themselves, as they really were. Their images in my head had colour, richness and life. I was still remembering the pain of losing them, but for the first time in a long time, I could remember their individuality. Their voice, their manner of standing, sitting; their favourite book, flowers, music. The dish that they cooked better than anyone else. No matter how suddenly or terribly they left this life; the giant hole their loss left in my being; that wasn't what their life was about; who they really were! It wasn't their legacy, why did I only remember the pain? I have enough physical pain.  If I can ease this heartache in a way I can also honour them, perhaps I can keep them alive in my own way. 

I was coping enough before, but this flash of inspiration struck me deeply. I had reframed my grief, but in doing that I gained a completely unexpected result. I let go of so much baggage; was able to take risks of doing new things, outside my comfort zone. Outside the comfort zone was actually a glorious thing! Possibilities are endless when you dive in knowing it could all fail spectacularly! But it also  work in intriguing and incredibly insightful ways: more than just working out well, but completely beyond my expectations. I stopped worrying about what others thought of me because it was keeping me in that safe bubble-wrapped cocoon. I didn't want to live in fear, because it was holding me back. I still fear; most of the time I am terrified of making an arse of myself, making the wrong decision, taking too many risks. But having fear and being controlled by fear are 2 different things. I will always push beyond pain and limitations when something could be of benefit.

Control is important to me, gives me a sense of order when nothing else makes sense. It gives me autonomy, even if it is over something small. That is what I need to cope when shit hits the fans and nothing makes sense. And if nothing is in my control, likely it is a temporary situation that will present me with options eventually. It's not like it's the first time after all. Past experience has proven it.

I know what works for me. Other people perhaps aren't so annoyingly anal about shit 😉, but understanding this crucial aspect of the way I cope, made other things make sense again. What is outside of my control perhaps never will be anyway. I was more comfortable, balanced in that now. A negotiation between the rational and emotional. I'm not a self-deluded optimist, but a painstakingly chosen one. 


My glass is both full and empty, if only at different moments. I drink from it; it evaporates if I leave it alone. When I spilled my glass all over the table and my friend's handbag on Saturday, she filled my glass from hers and we both had half full. Maybe it was the second time my uncoordinated flailing limbs resulted in a spill... But goes to show that when your glass is 3/4 empty, having a mate or two around can help you fill your glass to half. 

Saturday, 5 August 2017

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! 

Our discussions this evening were exciting. It started more generalised, about a friend of ours who has migrated. This got into the political situation in his country of origin; which went into the political situation of the region; which got into religious dogma of said region and continent; which got into cultural/religious practices and their use in subjugation of those deemed "less". This led to my difference in opinion, and a huge moment of inspiration as I reflected on my personal experience and observation from within. My views have changed a lot over the past few years. Why do people believe in what they believe in? Have I cracked even a part of this conundrum? 

This is not the first philosophical discussion of faith and religion we've had over the years. Some of which while sitting on the walls of Stare Miasto, watching Warsaw go by. I have always been fascinated by faith. I was brought up to be a thinker, to question beliefs and assumptions. But I cannot escape the divine influence. There is a certain sense of magic and wonder in the creative process. Is that God? The universe? Faerie spirits? The Greek Muses? Does it even matter really? If I believe it, does it make it any truer than if I don't believe it? I can't imagine any diety is going to be personally offended by being called by an incorrect title. I chat with God and the angels, as well as dead loved ones. Do I need to believe in their supernatural presence right there, for them to actually hear my words? Or if they are all there, waiting with bated breath for my next pearl of wisdom - will my lack of believe in their existence suddenly pouf them away? Surely my rather banal conversations bored them already out of existence, belief or not! That sounds like a really convoluted idea of faith, to be honest. That it only works if you give up all reason. How can I trust anything I cannot question? I don't know if I truly believe in God in any of the conventional ways. I don't think it really matters anyway. I live my life with integrity, trying to do the right things for the right reasons, not out of fear. I believe strongly in morality. I thankful for how lucky I am. I don't ever wonder why God allows me to live in so much pain, get so sick or be unable to walk. If I feel skeptical over God, and we meet in the afterlife, I am hoping I will be able to explain my distinct lack of faith in a logical manner. God has to dig the Greeks now, surely! Zeus has lightning and thunder! 

Regardless of what I believe in or not in a given moment matters very little. What does matter is that faith, as a whole, can make people happy. It can give them order, structure, rules and purpose. I might find it kooky, different.  I might factually point out inconsistencies but if it causes no harm, and no one gets coerced against their will, who am I to judge? Some people need that in their lives, to be told what is expected of them, rather than needing to decide their own morals. You can't turn around to a group in a different faith or culture and tell them they're repressed, or their beliefs are stupid. That may not be their reality how they experience it, who are we to judge their story? Just because we ourselves would feel repressed under those conditions doesn't mean the same for another. Now, I know there are countless stories of human suffering throughout the history books of religion, but religion merely makes it easier to inflict certain damage upon others with a divine right to rule. But religion is certainly not a prerequisite for that. And religion is no science. It is much easier to manipulate religious text to say whatever you need in a given moment to justify cruelty. You don't even need to try, that's what makes it dangerous in the wrong hands. But enough devastation was wrought outside religion too.  

Now, I don't even need to name religions here, because really, the facts can sit within any dogma-filled religion that professes to being the highest authority. More concerned with superficial showing of faith than substance; no reasoning - no epistemological thirst. Religion, to me, is distinct from faith. I have no religion, but I do have faith. Not in a magical wish maker, capricious, fickle and ready to punish; but in true knowledge. Truth is my God. 

However I am still always fascinated with observing the effects of faith in others. There is a sacred magic in the rituals of faith; in a person's private moment with their gods. Over the years, I have read quite a bit about how different religions view sickness and disability, for better and worse. It was important for me to find out, because in the religions where disability was some form of divine punishment I needed to know why so I could argue correctly and irrefutably! I'm not owning that religious guilt! I don't agree with outdated, hateful and misogynistic rules and views, but even people of faith discount what they deem outdated or irrelevant for these times. We are all hypocrites, it is human nature. I've spent time living amongst different faiths. The same general rules apply in all the religions I've looked at so far: don't kill, don't harm another; care for your family, especially the frail ones; don't be an arsehole; help where you can and think of those in need. If religions spent less time concerned with what goes on in underpants and bedrooms, and more time actually helping the needy and suffering on a wider scale, the world would be a much better place. 

There are many practices and beliefs that are utterly incongruent and repugnant. But if I go around telling people their beliefs that they hold to be fundamentally true are misogynistic lies (even if that is something I myself hold as true), then all I am doing is making them uncomfortable,  defensive, on guard and feel even more alienated. I'm not helping them see the truth by forcing my version of truth upon them. Truth is something you need to want to know. Some don't want truths. They want to be comfortable; happy to know what is expected of them. Truth is a personal journey with many uncomfortable realisations about yourself, the twists and turns of self-examination. 

While she is too polite to hurt someone's feelings, I still felt compelled to explain my thoughts about faith and religion to her. I learn the most by defending my stance! And she needed to understand what she couldn't, what she was wanting to understand. I wanted to share what I had observed during my time within other cultures. She needed to appreciate that just because we both have this yearning for the non-traditional path; both migrating to different countries. To do that takes daring and fearlessness, not that it ever felt that way for us. Both of us value freedom so highly that we struggle to understand that not everyone wants that for themselves. We are both questioners, thinkers. We are happy to be wrong if convinced by a superior argument. 



The suffering... 




We went onto the concept of suffering, a years long debate we've had. She is a sensitive soul, highly empathetic and attuned. Perhaps too attuned, as she can have quite a lot of anxiety. Her biggest fear is pain. She gets anxious with just the idea of pain. I got very upset with her one day years ago when she told me she would rather die, than suffer in pain. I was upset and angry thinking she meant my life wasn't worth living. I had been upset on other occasions about her view of my 'suffering'. She was obstinate: pain was the worst state to be in, and she got more distressed about my pain than I was. I got quite angry this particular day, but was I really angry with her? She only has her own experience with pain, and it was so distressing for her - it is suffering in her view. She feared it so much that it is a real phobia, which would follow that her perception of pain would be higher if something did cause her pain. This is very real for her, that fear. My anger was that familiar type, the sibling/family type. If she meant nothing to me, I would have just let her go. I need strong friends around me. I felt it essential to make her understand why I was incredibly disturbed that she saw me that way. Considering I had told her everything over our 11 year friendship; most people just get snippets of information I think they can handle. What's more, she met me while I was travelling, so she saw what I've managed to do while in pain. If she still saw me as suffering, after everything, then she didn't know me at all. She has seen me during times I had no choice but to give into the pain, but she has also seen the other good, lighthearted and fun times. Those outweighed the bad, which is generally what I aim for! Why couldn't she see the value in my life even with pain? Why was she so focussed on what I regard as an annoyance in my way, a small sliver of my whole experience, rather than the overcoming of such?  

In my impassioned argument, I realised I was so emotional because I had pledged my life to proving that I could have the life I choose regardless of pain and disability. I thought I was doing it well, but if my best friend saw me as someone suffering - was I doing a such a terrible job and reveling in self-delusion? Actually, her opposing view made me cement my own views on the matter, reaffirming my current beliefs. Opposition is one of the greatest gifts. Nothing cements or changes assumptions better than having to argue for it! She still may see me as suffering, but perhaps in time she will see that my life is not a life of suffering for me. Pain is my constant companion, but fearing it or hating it won't help me in the here and now! Pain is a part of living, like death. They aren't positive, nor negative. Pain teaches us not to harm ourselves; it shows us how much we love someone when we lose them. A life without pain is a short one, an unfeeling one. Death too, is the natural conclusion to life. To have a good death after a long life is the ideal, but often won't play out that way. How can we value living without the memento mori to remind us that out time will come to a close at some stage. These are profound truths of existence, unyielding, unchangeable. There's no logic in fearing either one, because we cannot escape them. 

I desperately wanted her to understand, I don't know if she has, but perhaps one day she will. Of all the people in the world, she is the one I want to convince the most. My dearest friend, I saw her as the one suffering, which makes me feel terrible! She was suffering just from the fear, the idea, the suggestion of pain. I felt compelled to help her in any way I could. This is the infinite loop, the möbius strip of pain. She feels bad for me for being in pain, so I start to feel bad for her discomfort, so we continue feeding this negative pity party strip forever more. I had to explain clearly why I didn't agree with her assertion, if only to relieve her suffering and distress. 

The discussion went further into greater suffering; the suffering in the wide world. She was overwhelmed by sadness with the suffering of so many, children especially. It upset her greatly; the humans who inflict such suffering upon the innocent, and a god that didn't seem to care. Why isn't God there for them, she asked. I felt like a heartless bitch in my response. I put to her that this has gone on since time began, only now we get bombarded with images that almost fetishises human destruction. We can't look away, but yet we are also largely passive and unable to do anything. I am certainly not without empathy or compassion, but I am against viral token gestures of 'solidarity' which do nothing, and perpetuate the addiction to human misery we have, and glorify the evil ones who set out to cause widespread panic and fear. We do the job for them! We remember their names alongside the other monsters of history, not the names of the ones who died senselessly and needlessly. This constant bombardment of images of destruction are no longer serving the purpose of informing, or providing news. It is a constant cycle that perpetuates suffering and distress with no solution. It's like CRPS - pain with no purpose, pain that give no information, with no way to solve it, treat or cure. 

I have known so many who have had unspeakable acts committed upon them; those who have been victims of violence, sexual abuse or ideology; many in childhood. People who were shunned by their families, tossed around the system or locked out of society's sight and forgotten. People facing terminal conditions: death, in the natural and unnatural ways. Real people I have shared with, held hands, listened. I have no power to change their circumstances, their story, nor take away their pain. But being heard and validated goes a long way. Sometimes there are no words, but knowing someone is listening is so important. I can't help a nameless face far away, and no matter how much I feel for them, it can't change their lives. The only ones I can hope to help are the ones right next to me, or on the street. Even if nameless to me; their face, their story, matters. I listen to and remember those moments lost forever now but in my memories. And I remember those often times nameless people who helped me without even realising it. Something as simple as a smile, an offer, or just concern by asking how I was and meaning it. In this self-centred world of superficial virtual connections and not enough real presence outside the screen bubble; a smile or real connection with anyone is a highly sought-after prize. 

I shunned facebook for a very long time, all social media in fact. I got caught up in the constant false validation and need for approval. I felt more anxious, more unhappy about my situation, more ashamed of being disabled. Worse, being jealous of those who weren't. I literally felt more pain from this heightened emotional state. So I detoxed, and didn't miss it, though I did miss many birthdays and births. And now I have returned because finally, I feel strong enough to withstand the onslaught of banality, political unwitting racism,  multilingual discussion and endless hand-wringing. I am comfortable in my own skin so I care less about what others think of me because I don't need their approval. I actually like this new me, though I know I come across a bit... full on. Arrogant, pushy, pain in the arse. Whatever, not giving a shit what other people think is rather liberating. I can be myself; I can join in on the lighthearted, share observations in a wider circle than ever. I am more than my pain at a time where pain has pretty much taken over everywhere. My world had become so condensed,  insular,safe. I've spent the past few years concentrating on staying alive and healthy. For once, pain and disability weren't my biggest concerns, or the most dire situation. But in casting a wider net, taking the risk of putting myself out there, it's like I've woken up after a long sleep. And I'm flooded with so much creative flow that is a little frightening to wield. 


Whoever destroys a soul, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world.
Mishnah Sanhedrin 4:5 


My beautiful friend is so sensitive, something I love about her. She has always had a defiant innocence, I want to protect her; to shield her from this onslaught of images an stories that distress her. She feels so helpless with the extent of suffering in the world. If there is one thing I learned in Poland was that being comparatively poorer than western European countries, but much more connected with what is going on around them and ready to assist anyone they see struggling. They would give you the shirt off their backs if you needed it, even in winter or just for the sake of it. She gives what little money she has when she can. But still, she wishes she could do more, every child that suffers that she can't help, only makes her more upset. 

Little does she realise how much she has helped me. She may not be able to save the nameless, but she did save me. On the day I met her, I was anxious; worried about what I was going to do. I had gone to Poland on a whim: I needed a non-Schengen country to apply for my working holiday visa. I had a Polish friend in Germany, and I had just finished the book: A World Apart  (Gustav Herling) about a Polish man who was arrested for trying to cross the Polish-Lithuanian border at the time of Soviet occupation of Eastern Poland (1940 for clarity). He was sent to a Soviet labour camp. Wartime stories never make for light reading, but there is a poetic eloquence in how people conceptualise the incomprehensible. And after growing up hearing stories about the Polish family friend my mother and her siblings grew up with in Sydney, I felt an irresistible pull to Poland! I had no idea what I was doing, or even how to go about getting it. I was staying with a student somewhat against the dorm rules. I needed to find a hostel and work out what to do. I was in so much more pain from my emotional state, and the thought of picking up my backpack in search of a hostel made me want to cry. There was no time for pain when I had problems to solve, but I wasn't sure how much longer I could hold out for. Maybe this wasn't worth it, and I should just go back to Australia... Then I met her in the computer room of the university while I was checking out my options. 

She had these big dark eyes that were full of curiosity and light, and I felt instantly connected to her. We did the usual "where are you from" discussions, while she explained the deep symbolism of the hand-embroidery on her bag. She is one of those special people I always meet when I'm full of self doubt, but still on the right path. It's almost like that sign from God to remind me to keep going. No, I wasn't giving up. I stayed with her for the weeks it took to sort out the visa. It was an incredibly beautiful, deeply intellectually stimulating and wonderful travel experience. Authentic; the real Poland of studio apartments; of fold out beds that get packed up over the day. Cooking on a camp cooker, washing up in the bathroom sink; peeing and showering while Jesus looked down from the cross. I loved every second! The discussions we had were always profoundly philosophical. Her upbringing in Kiev was so far outside my own upbringing, I couldn't comprehend. Communism, Chernobyl, the Orange Revolution... it opened my eyes in ways facts and books cannot. A real face, with a name, my friend. This was her truth, and she was taking her own path outside the conventional. She was curious about the world, the multicoloured, multiethnic and exciting world out there. She wanted to hear about my travels, what I had seen and done, what the people were like, what about the food... She wanted to know about CRPS, though it distressed her. And when I had an asthma attack, she took me to the doctor, interpreted for me, then trooped all over the city to get the inhaler I needed. Unfortunately for us, it was unusual for combination inhalers to be prescribed in Poland as it was rather expensive, so she fought and argued on my behalf, went back the doctor to correct the prescription and to a pharmacy that stocked it. She went above and beyond for me at the time I needed it most. For a girl she had only just met, who was staying in her home. She is my sister. We got irritated with one another, we laughed together. And when it came down to it, she took care of me as though I were her family. 

Years later, the CRPS spread to my legs. In the long nights of pain, she was there listening to me, keeping me distracted and in company. When I tapered my whopper dose gabapentin to switch to pregabalin, it was horrendous. But she made it easier to endure. When I was in hospital for asthma, she was so worried, and she kept me company again during those long and differently painful nights. Even as she struggles herself, sometimes overwhelmed with work, with raising her son on her own in a country where she has no family support. She still made time for me when I needed her. I honestly don't think she realises that if it wasn't for her, I might not even be living my life here in NL. I might have given up, gone back to Australia and ended up locked into the labels and politics of workers comp. I wouldn't be here, scootering around the city on the batmobiel; swimming like a fish, writing this blog or sketching this wonderfully different place. I wouldn't have a neurostim, because workers comp would never have approved such an expensive and somewhat risky surgeries. (considering I wasn't even approved to see the pain specialist back then even after an OT advised for this particular doctor in a report) More than all this, though, I never would have learned what a remarkable woman she is. Having her friendship has changed me and made me a better person. She helped me not to suffer, and know my reasons why. She helped me to express it clearly. Helping relieve one person's suffering has a ripple effect, chaotic by nature, but surprisingly beautiful. A Mandelbrot set of compassion.





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.