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Monday, 1 July 2013

Set in stone

I look down and my feet are stone. Not stuck in stone. They are stone. And I am trapped. The walls change, but always the suffering is the same or worse. And from inside these walls like a voyeur I watch life peeking through the darkness.

Those connections I had when the stone slowly encased the soles of my feet are mostly lost. I see you all on distant media. I watch you grow and leave me. The distance is so great it is like your feet are weightless. You fly.

As we mature we move away from people, and closer to others. It is the natural order of life. But I am stuck. So you might think I am not trying, not reaching for you. And yet I cannot. My suffering has made my world so small, my steps so heavy that I can barely find purchase on the walls to steady myself.

So I watch instead through social media inside this dark space. And it is a blessing and a curse. For I am glad to participate in your life in the tiniest way just by being privy to witnessing the milestones and markers of life as you travel away from me. But it is also gut wrenchingly painful because I am immobilised. I cannot participate. And I wonder if I ever will again.

See, you can reach me. But you have forgotten I cannot reach you. It is as though you believe we have grown apart naturally. And perhaps we might have. But we didn't. I just couldn't grow at all. You did all the growing. 

While you were filling each moment with life. With love, loss, suffering, travel, family, homes, moving, exploring, evolving and living..... I was enveloped in the darkening grey. In stone. In suffering and loss. And when I dare venture to visit the colour it is when I was last connected. Which is a millennia ago for you. But it is yesterday for me.

For if you think of the very last time you saw me truly healthy, unshackled by pain, suffering, intense exhaustion, confusion, anxiety, memory loss and weakness – the last time there was no wall between us nothing stopping me from being completely engaged in the moment and keeping me separate – you would realise with some shock that it was over a decade ago and I was in my late teens, maybe very early twenties.

Remember back then? Maybe you don't feel like you can fly any more, but back then our feet floated in the air and anything was possible. I got trapped there, grounded. Like a demented window shopper.  A statue who can only watch life in the dark through the shuttered gaps of the windows.

Even now the stone creeps further up. I wish you would look down and realise that you can fly. And that my feet are of stone, soon the whole of my legs will be overtaken. So there is only so far I can stretch. I am sorry I cannot reach you. I can barely reach me. I am scared even the distance to the the window will be too far soon.  That I will not even be able to have those tiny voyeuristic peeks through the darkness at your life.  

Until then I try to maintain even the smallest of contact with the statues that populate the darkened spaces on the distant media, made closer only by their plight.  They too have been carved in stone by the cruel artistry of chronic illness and are stretching wildly towards each other. I brush my fingers tips against theirs at full stretch.  And wait for you to come closer.  For me to be free.

When there is space again, when my feet are freed, when the light streams in and I can move without struggle, without the assistance of walls, I shall reach.  You may no longer be there.  But I will try.

And if you are gone, I will recolour my life with an abundant freedom of choice.  Who knows where or how it will be built.  The future is not set in stone.

Monday, 4 March 2013

It's not easy being green

So...I am positive (and despite my sometimes – well often – dark writing I am actually genuinely usually quite upbeat.  But what I mean is I am positive for Lyme Disease). I also have some co-infections.  And just BTW this background choice was here long before I even thought I might have Lyme - subconscious instinct maybe?

Here's what I can tell you about Lyme so far, it's likely that the Babesia (a Lyme co-infection I have) is for me the more acute, more dominant infection and therefore I am displaying more obvious symptoms of that - namely increasingly bizarre neurological symptoms.

Let's start with the one I like to call the dramatic interpretation of the thesaurus. That is a combination of a few: weird dance style cheer leading moves, while repeating five alternate ways of saying something (because I can't find the exact word or phrase I want to use) interspersed with musical Tourettes and cheer freeze movements punctuated by clapping, smacking or stomping.

The catalogue of walks: the bless this wall walk, where I walk up the hallway facing the wall holding onto the new bar (imagine a ballet bar running the length of the hall) pressing my face against the wall every few shuffles, the crab walk, the grapevine, the ass first around corners manoeuvre, the squat walk, the shuffle, the child learning to walk walk, the drunk walk, the I have to turn three times at speed before I walk walk and the going down the stairs walk. Can you believe there is no moonwalk in that mix?

Then there is noddy: this is where I suddenly drop to the floor or lose consciousness mid speaking, showering, walking, sitting... just drop like a stone. The strange thing is though that I'm not fully unconscious it is more like I am frozen, but I am not conscious either as time is transient and I can't really tell how long has passed. 

And the Dick Van Dyke tribute: where I suddenly start talking with a weird version of an accent, whether it be Chinese or Italian or Kiwi. Then the related and usually simultaneous symptom of volume control... where I either am shouting words at random or suddenly whispering something while cupping my hands to my ears or forehead (apparently, because that's where I speak from).  Or the reverse it sounds like anyone speaking to me is not only speaking with an accent, but in another language and I simply cannot understand them.

Slow motion interpretive dance: this is a pretty frequent daily occurrence where my body moves of it's own accord.  Usually my neck and head, arms and torso doing free form interpretive dance or a series of moves - the salute where I repeatedly bang my head like I am emphatically saluting, the pick me manoeuvre where my left hand keeps shooting up in the air, the double pick me - where both hands go straight up, the bow down, the chin up head shake... there is too many to count. The tempo of this jig is dependent on what's causing it.  If it is just my usual brain farts, it's slow.  If it's in reaction to chemicals this turns into a high speed disco.

Language and singing portion of the show: where I have musical sound effect style Tourettes. I sing parts of sentences or make beat box musical noises – not well I might add. Or strangely I sing whatever I'm saying to the tune of a song or lullaby. Highly irritating. Oh and MA rated inappropriate Tourettes too. Which makes Ma highly uncomfortable cringey and full of shhhhhhhs. Unfortunately the more I try to suppress the urge to speak/yell/sing the worse it gets (plus a migraine)... so f$%k it, suck it, duck it.  

Oh and last but not least who can forget (mind the pun) the amnesia or dementia symptom: where I start calling my sister or mother or even my father – that girl... you know that, person that lady. I call Mum Marzi (my nickname) and cannot for the life of me remember the cats' names (Tobey & Cooper) so end up yelling out things like furry little people or pooper or Cobey or Tooper or f#$kingwhathisname. And the highlight is forgetting who I am, where I am and what's happening which seems to frequently result in me yelling, “what?” in people's face, “what's happening?” at the top of my lungs. “What am I doing?” “who?” “what?” The last time it happened quite dramatically I was (insert sarcastic context here) conveniently at the doctor's office. Where thankfully he didn't miss a beat in the face of my thunderous questioning of all these pressing theological matters. “what?” “what is HAPPENING?”

So Lyme is absolutely not my favourite colour. My school uniform was two shades of green... and I hated it then. Now I am stuck with Lyme. At least for now. In the meantime I will be performing daily. A Lyme variety show – 'It's not easy being green'. Come all takers.