Thursday, 29 June 2017

Anniversaries and celebrating how far you've come!

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


My facebook post:




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

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



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



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

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

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



Thursday, 1 June 2017

Pondering Powerlessness: Saving myself again...



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

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