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? 

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! 

Validity rules for the new Games: Turning a corner...

Finally, an answer. But having my suspicions confirmed, did it make me feel any better? Did it make a difference at all? I can't say that it did, to be honest. I still had Pain, I still couldn't walk; I wasn't really any closer to a solution or a way to work around this new disability. Well, not so much a new one anymore. It was 2 years now I had mobility issues, since that day when it all fell apart. Being right and knowing the answers in this didn't really make a huge difference. Where to go from here?

I returned to the Netherlands once again, with a wheelchair posse of airport staff and the sad realisation that this is the reality of my travelling future. This was the future of being disabled. While it sounds quite confronting, it really wasn't as depressing as it sounds. I could still do things, I could still be mobile and live. A wheelchair, a walking crutch or stick, really what did it matter if I was still out there in life?

THE DISABLED CLOAK OF INVISIBILITY...

Finding my new identity. I was still me, surely, wasn't I? But how much of being out there in life was I really? I was stuck at home mostly. Every time I wanted to go out for simple things, like groceries or bread, it became such a huge undertaking that a simple trip would take me days if not a week, to recover from. God forbid if I forgot sonmething - if I forgot something and was downstairs, so sad too bad, there was no going back up! It was so difficult that even breaking a trip down into rest-break paused increments took so much effort; with the impossibility of the task soon becoming evident. I still did it occasionally, pushing myself to breaking point if only to get out of the house for a while.

One day I pushed so far that I came home, cried for hours and it took me nearly 3 weeks before I could even think of going out again. I was so sick of and so over always struggling, everything being so difficult, costing me so much energy that I just didn't have anymore. The unbelievable rudeness on public transport. By all means sit in that seat for disabled and old people if you want. But please, keep your eyes open for anyone who may need that seat. Don't wait to be asked to stand by someone else; because I can tell you that the very last thing I want to do is admit to anyone I need a seat for invalids! Frankly, you shouldn't need to be asked because one day, you could be that person who needs that seat. And don't pretend you can't see what is around you! Headphones don't make you invisible, neither does staring at your phone. Just being disabled is all you really need to become invisible...

Updates and excuses PART IV: The Lame Game...

This series is nearly completed, we have made it to the last stages of these Games. It has taken me so long now that I am really impatient to move onto the next part of the story. Certainly, there has been a lot going on; a lot to document and get through - but when isn't life full of surprises and things to do? Procrastination, excuses... these are just some of my talents for sure - and the excuses are but one part of these Games! Writing has always been a huge part of me but yet, it is also a driving force that seems to be generated from somewhere else - as though channelled directly from my muse... And it's something that I cannot force. Especially about Pain. Pain draws away so much of my energy, my power, my very being. Sometimes it takes all that I have and all that I am, to fight Pain. But despite all this, I am still winning! I have been undefeated for so long now that I plan to stay that way. I finally have the winning edge against my foe! I am still winning these Games!

Rather exhausting it was, going through the Name Game. Seeing doctor and specialist, one after another; having potential diagnoses thrown around, tests and scans ruling them out; before starting the process all over again. It's like a very boring episode of House M.D., though with no screaming, no vomiting blood - and no mention of lupus or sarcoidosis (My watching House drinking game!)!

THE NEURO STUFF:

Ah, the Lame Game. Lame with my gimpy legs! Lame from boredom, and lame from inability to change it. But I am getting ahead of myself. Where we left off, I was off to the neurologist! It had been a while since I had seen one, only in the very early days of my arm. I knew I had at least a nerve conduction study ahead for me, something I wasn't looking forward to, but knew it had to be done. A nerve conduction study involves electrodes being placed on the skin and being zapped; jumping limbs and unpleasant sensation of electrical currents shooting down my legs. Apparently it is supposed to feel like having elastic bands being flicked on your skin, or static electricity zaps. Naturally, that is for people without freaky nerves - for me, there is significantly more 'discomfort' (read: pain!). However, I have long abandoned my fears of needles and procedures. I might not like them, but I am willing to endure some uncomfortable stuff and pain with the knowledge that any 'discomfort' I feel is only temporary. Unlike the Pain, which is always present, never ceasing, never ending. Temporary means that that particular pain (with a small 'p') will end at some stage. And then I can go home, lick my wounds and have a cuppa. You know you're getting old when you get excited over a cup of tea!