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!