Wednesday, 23 July 2014

The Art of Standing Still

(Mocked by Meerkats. What pesky human? You can't stand? Bwahahahahaha. source)

As I stood next to the television in our bedroom turning it on and off, the failsafe way to reset its permanent glitch, I felt my legs buckle. Enough time for a panicked "Shit!" to register in my mind before my knees met the wooden side of the tall boy with a thump. I hung perilously between the tall boy and the standing mirror beside. The standing mirror which tilts with the slightest pressure. Before my grip is compromised and I'm down on my knees on the carpet, head swimming. Two seconds of standing still and my personal glitch had been activated. And I am left panting, head pressed against the tallboy forcing back tears of frustration whilst wishing I had vacuumed my bedroom in the last century.

The three metres from bed to television had been traversed with care and the occasional list to the left. More complex than it should be, but doable. The initial stand, from bed to feet-on-carpet-and-upright, always the tricky part. The head rush. The moment of disorientation. The frustrating mid-step of sitting on the edge of the bed for it to pass before standing and repeating the same shifts in consciousness. But if I can get my legs moving I can keep upright long enough to reach the television, or on a good day, the kitchen. Those steps a cakewalk when compared to those few moments of standing still.

Before I was diagnosed, when my body was in those early days of glitching, I never stood still. I was a twitcher and a leaner. When I would pause in the corridor to speak to a fellow staff member I would move my weight from foot to foot. I would progressively pump my leg muscles, a trick learnt from lengthy military parades (fainting and sticking a bayonet in a fellow parade member tended to be discouraged). I would move my arms and at times, lean against a wall or any available table, trolley or bed. My body instinctively compensating for my failing system long before I knew there was a problem.

My work required a lot of standing. I would stand at bedsides, when providing inservices, or writing in medical files. I would stand in corridors. In tiny consulting offices when the limited chair space was taken. In line for coffee at the cafeteria. In elevators, at filing cabinets and photocopy machines. And if I had lucked out, in line to pay the exorbitant hospital parking fees. As time went by, my inability to undertake this one simple act impacted on all aspects of my work. 

I spent much of my time getting up close and personal with floors throughout the hospital and in gutters outside in the carpark. I would walk from a patient's room to my office leaning against walls and keeping going by strength of will alone. Ignoring questions from colleagues as I stumbled forward, focused on the desperate need to reach my office. I'd get into my office leaning and half sliding on the door frame. Slamming the door shut before making my descent down the wall to the floor. Hopefully keeping any food or fluids on the inside rather than the panicked reach for my bin or the sink on the side wall.

I spent time checking my shoes or dropping pens, just so I could stop standing and crouch down to a more palatable position. I was an expert at looking for things under desks or in the lowest drawer of the filing cabinet. In group photos I would sit in front or kneel at the side. No standing photos for me, especially in those last few months. Or the day I first collapsed at work. One hour before a photo taken for the hospital newsletter shows me leaning on a desk next to our head of dietetics, because standing was just too complex.

Apart from the duration of my feasible standing time, little has changed. As things progressed I would be the woman checking her bags on the floor, or that oh so interesting book on birds on the bottom shelf, whilst in the line at the post office. Then it was window sills. Amazing how much of your bum you can fit on those tiny ledges. Or more than one gutter outside a fish and chip shop or hairdresser.

And now. I sit in the kitchen, on the bathroom tiles, in the laundry, and under the hills hoist out back. I have a chair to cook with. A chair in the shower. A chair near the backdoor and the front. I can leapfrog my way from chair to chair throughout the house. And I have my furniture and wall walking down to a fine art. Keep those legs pumping, just don't stand still. 

In life we stand from the time we get up until the time we go to bed. Brushing our teeth, in the shower, at the coffee machine. Making dinner and folding laundry. At supermarkets and post offices. Concerts and sporting events. Standing, and in particular standing still, are part and parcel of daily existence. That something so fundamental and so easy should now be so hard, seems farcical. And yet that is where I am.

My body's glitch means that the most basic of activities is beyond me. If only I had a switch like my television to reboot my system. A quick fix to a problem both simple and complex. 

And now as I lie here with my television glitching yet again I shudder at the thought of repeating my earlier efforts. 

I have lost the art of standing still. 

May be time to just listen to some tunes on my laptop. Who needs to watch the abs of Christian Bale in Batman, when I can listen to some 80's glory. I'm Still Standing by Elton John is coming up on the play list.

Wry laughter seems appropriate right about now.

Michelle



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

7 comments:

  1. oh sweetie... I wish that I could make it better and take it away.. from you ... and my 18 year old daughter and all of you fighting (and losing to) your own bodies... the having to deal with morons and asshat friends and family as well as strangers... My one wish most every day is that someone would find a way to fix this so you ( and my Sammi) can all go back to "normal" ... that would be soooooo nice....Hugs and Blessings...... Sandi

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    1. Thanks Sandi. I hope there'll be a fix some day or at least we learn to live to the max with what we are allotted. Life can still have much meaning and joy in the midst of illness. Having someone by your side to slay the dragons and protect and support you while you are ill is so important. I'm glad your daughter Sammi has you by her side xx

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  2. I'm sorry for this. I am currently at a health peak (since getting sick) and I would trade if I could.

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    1. Celebrate that health peak Coercus. Happy to live it vicariously through others at the moment. Always good to hear when someone else is doing good, gives us all hope xx

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  3. Spot on again. That hanging on to the walls to navigate was termed by one of my managers as 'wall surfing'. I live alone. I crawl a lot. My cats check up on me. They need me to feed them, you know. ;)

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    1. Wall and furniture surfing. I feel like a little kid just learning to walk some days.

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  4. Mocked by meerkats... can we get no respect?!
    <3 to ya from the Just Mildly Medicated gal

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx