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.