Power

Just under my heart in the middle of my torso was the organ that controlled my power.  Now there is this gaping hole as though someone punched a fist through me.  And every now and then my breath stutters and catches as though it can not quite make the jump across the empty space.

At first I thought my power organ was malfunctioning, I felt so weak.  But then I realised it was gone and since I didn’t wake up in an ice bath with a note saying it was missing…. and I didn’t donate it, someone must’ve stolen it.

When you have the ability to generate power, you take it for granted.  It is not until you feel powerless that you realise the huge loss.  You get power from little things, from working or studying and feeling useful, from making decisions for yourself, no matter how small, from feeling beautiful, or at least deciding to do something about it when you don’t, from being self-reliant, completely independent and from being you, being who you are meant to be whatever that is.

If you are chronically ill, those power sources are no longer an option.  And in fact you deplete your power in much bigger increments, because you are completely reliant on others, to clean, to change your bed, to shop, to go to the doctor, sometimes even to bathe.  When you cannot choose to simply get up and make breakfast, when you hurt yourself making toast, you lose a lot of that sense of power.

I bleed power; it seeps from me in an ever-flowing torrent.  No more can I work or study to feel useful and powerful.  No more can I exercise, get my hair cut and dyed, or even apply makeup to feel beautiful.  No more can I look after myself, do anything without consulting somebody and developing a strategic plan to achieve the smallest goal.  And no more do I feel like me, because I am trapped inside, kept hostage, diluted and whispering from eons away.  I can barely remember me.

So I am looking for a power organ donor.  I’m not sure I’ll make it without one.

Bitter Zzzzz

The flames of an impotent rage are burning in my stomach, futile and frustrating.  An ache cloys in the hollow of my throat making my hands flutter uselessly to my neck as though warding off danger.

It is the powerlessness that fuels this fire.  The sense that I cannot affect anything, not even my ability to sleep or stand.  An evil snivelling greedy intruder insomnia has slithered into my house and gorged on my sleep leaving me starving.  And I cannot find the power or control to hold my muscles into any practised positions, so my mind throws itself uselessly against the antagonism this intruder has enveloped me in.

And then a woman turns up, for an appointment I had cancelled.  And she is sent straight upstairs to me in spite of my vocal insistence that she not be.  She too is an employee of the department of ‘no listening’.  And as I try to corral my rebellious thoughts and coerce my tongue into something coherent she talks at me and over me, wasting my greatly depleted energy on repeat.  It has turns my insides burning amber with an impotent fire storm of rage that cannot be quelled.

I have no power.  There are no choices to be made.  And as my friends face their struggles with attempts at being Zen, I find little to be thankful for.  I want to go back to the days before the intruder came when although I was exhausted beyond comprehension, I could sleep.  Heavy drunken sleep, but sleep nonetheless.  Now I flail uselessly about growling and stomping like a toddler learning to master their motor skills.

In the days before he gorged on my sleep, I could at least be thankful for the painful awareness that came with consciousness.  Today I find nothing to be thankful for. 

I am alive, I should be thankful for that.  And maybe tomorrow I can be.  If only that bastard intruder would leave me some sleep scraps, even crumbs.  Then I promise to be thankful.

Freedom

I throw myself backwards and my breath catches in my throat with the possibility I may have misjudged the moment.  And then the current hits, lifting me from my hips and trailing my legs out behind me.  The sensation is freedom, gorgeous weightless drifting freedom.

Ever since I was a child I have dreamt of flying this way, by simply flinging myself backwards into an air current and moving my limbs in lazy fluid star jumps to keep the momentum going.  Sadly this dream doesn’t visit me as often these days, more often I dream of running or walking effortlessly without concentration. 

And netball, I dream of playing.  There is this beautiful moment when a team of good players syncs.  There is no thought required to move around and anticipate each other before breaking and passing.  It is all instinct and trust.  I dream of that moment and when I take a pass and turn and throw in a graceful and easy movement it seems predestined and choreographed and yet each sequence and play is spontaneous.

One day, I hope that I will not have to be so conscious and aware of the mechanisms of my body and that walking will be effortless.  But for now my brain seems to send jumbled messages to my muscles, and like a game of Chinese whispers they respond in increasingly diluted ways.  So I need to focus with all of my grey matter to try and manipulate every tendon and ligament into behaving in a manner that will at least keep me mostly upright.

Sometimes I am successful and yet I have to always be in the moment, I cannot take a step without be completely switched on.  Perhaps I missed my calling as a project manager, because I have become startlingly efficient at developing a strategic plan for simply moving from one room to the next without injuring myself gravely.

So these days I dream of a different type of freedom.  Freedom from the need to be so aware of my body in every second of the day, freedom to walk for more than a few metres without having to concentrate on my foot falls and freedom to simply run an errand or catch up with a friend without having to develop a twelve page, two hundred point strategic plan to cover all possible outcomes.

I dream of freedom.

Prickly

An incoherent bellow from the stairs and I find myself clawing to awake.  It’s not the destination I had planned on getting to for at least another few hours.  When the chill in the air hits my dry eyes, I realise I’ve set my jaw and it aches.

The plumber is here.  Well not here in the bed, here at the house, unannounced.  Oh forgive me, the incoherent bellow was the announcement… but really an earlier one, say the day before may have been helpful.

I have managed to bypass awake as a destination and scuttle right on through to completely and utterly shattered, the sister city of awake, otherwise known as zombie.  I shuffle to the lounge to watch TV through bleary eyes and the power cuts out.  So I freeze my way through five hours at zombie unable to travel to sleep because there is no power, no heat, no plumber, but now an electrician in the ensuite.

Then the electrician leaves, appliances unplugged everywhere, my bath disassembled and rubber gloves left in my bathroom.  Who knows?  And it’s too late; I have now missed sleep as a destination and am near the end of the line, at overtired, cranky and delirious.

Seems like the perfect time to interact online.  And now I have power nothing can stop me.  Except wind, gale force wind.  So there’s no internet.  My jaw is still set, my eyes still bleary and my brain uncooperative.

But there is success.  The internet is suddenly playing.  It only took five attempts of rebooting the computer and rebooting the modem, but it is something to be happy about.  My jaw tightens.  An email, from a Queensland Health worker who communicates in her native tongue of passive aggressive, which I am fluent in, but prefer not to practice as I find the rhythms of the language grating to the ear.

So it reads, hope this finds you well, a statement, no question mark – a lazy and obvious attempt at showing concern when you really don’t give a shit what the answer is, and then that she needs to see me. And I must see her next Tuesday at two specific times.  She is not available any other time.  And even though she knows I am very sick, I must see her even if for a short amount of time.  Well wind where are you now?

If my jaw was any tighter it would be welded shut…breathe, self control.   I bite back the urge to send a vitriolic response in her native tongue, and instead type out something in my native tongue - polite and firm, letting her know that it in fact doesn't find me well.  Nor skipping merrily in the garden (well not that part but it was tempting) and since I cannot guarantee myself a shower, I certainly cannot guarantee anybody else anything.  So as much as she may need things, unfortunately until I can deliver on my basic human needs, hers are not really my priority.

There’s the announcement: You have now arrived at your destination, Prickly.  Be sure to put on a coat, the local weather is chilly year round and please watch out for flying burs caught in the gale force wind.  They are painful.  Welcome to Prickly, please enjoy your stay.

Doppelganger

Hair glistens, golden, swinging near her hips when she walks.  Her blue eyes soften and warm often, her whole face crinkling in delight.

She is intense, passionate and equal parts emotionally intelligent and clumsy.  But that will change as she experiments with life and heart break, with loss and delight.  Her friendships are forged quickly, loyally, but when they end they end disastrously.

Over time she will come to understand who she is.  That her self righteousness can sound preachy and her passion can be misunderstood as obnoxiousness.  Her voice will quieten, for there is no need to be loud to be heard.  There is a power in the softness and vulnerability that is innate to her.  But she has sharp edges when they’re required.

She dreams big, but she’s so scared of failure; scared of imperfection and that it may leave her unloved.  That too will pass as loves are earned and lost and she realises the strength of her heart and its worth.

He is drawn to her.  Something about her is easy, comfortable, and accessible.  And yet she shines bright, playful and witty.  She can skip easily from banter with the boys, to soulful girl chats, or heated debates.  And she always listens to him, makes him feel as though he is interesting, worthwhile.  They develop an extraordinarily pure friendship, true in every sense of the word.  And then it is love.  He is a better man with her. 

They travel and live abroad, although it drives them apart.  They are too different to be lovers.  But they part amicably.  He stays in Europe and she chases her dream to New York.  Ultimately she comes to hate the pace of the city, it will scare her and she will crave the ease of home.  Brisbane will always be her home, safe and sweetly understated.

She meets her next love through a friend, at a barbeque.  There is such an ease that everything happens quickly.  They buy a cottage and she falls pregnant.  The first is lost, but she falls again almost immediately.  The loss makes her connection with the second so intrinsically linked to her heartbeat that it quickens painfully every time she thinks of her unborn daughter. 

Arianna Dale is born with a shock of white hair and blue eyes, perfect little plump lips, a promise and constant reminder of the beauty in life.   

But in moments when her heart swells as she looks upon that tiny person, and the world quiets, she will feel a shadow stalking her.  In another life things are darker.  And if she'd made the wrong choice somewhere, the smallest little inconsequential decision, things may have been drastically different.

In this universe though, life is radiant and sweet.  And even though there are moments of heartache, everything always feels as though it is how it should be.

Dance

When I was a tiny little girl I learnt that sounds combined into song, were for dance.  I learnt to feel the beat and move to it in simple sequences of motion.  Now that I am older and am too weak to dance I realise something else.  When I was a little girl I learnt what sounds meant.  I became so attune to foot falls as they neared and passed my room that I could tell you simply by the way someone threw their weight, whom it was.  The high pitched tinny false laugh, the forced insincere merriment before a blink changed it into something more sinister. The vibration of a door in its frame as it was forcefully closed the thump of a glass or plate on a bench.    I saw each sound as though it were a colour working its way progressively through warning signals towards a screaming alarm.

When I was a little girl I used to watch my ballet teacher and her words would float past me uselessly, but her movements spoke to me.  I understood each graceful move and how to move my body in mimicry.  There was a freedom in motion, a beauty in how the collection of moves created a moment.  Now that I am older and am too weak to dance I realise something else.  When I was a little girl I learnt what movement meant.  So attune was I to the facial expressions and body language of those around me that I could easily take the temperature of the room simply by observing for one moment.  I could no more ignore pain in someone than I could ignore it in myself. 

When I was a little girl and I heard the uneven heavy footfalls approach and retreat past my door, the slam of a cabinet door, the bang of a plate on the bench, the tight angry voice, I knew what that composition of noises meant.  My heart rate would escalate and all of my senses would heighten, my muscles would tighten, coiled and ready.  I would step quietly into the kitchen and listen for a moment.  Once I understood what the newest accusation or complaint, I would wade in.  I would cause a distraction and pull focus.  It was a different sort of dance.  One I’d unconsciously learnt the steps to.  Every night needed a different combination of steps and flourishes.  I ducked and weaved, spun left then right.  It was exhausting trying to remember the correct order and sometimes I had to repeat part of the routine just to get it right.

When I was a little girl, my heart got broken every day.  The soundtrack of my life was a cacophony of violent noises coupled with jerky stumbling movements.  At night when I retreated to my bed, tears would stream down my face and I would hug my pillow hoping tomorrow would be different.  That the harsh words that rained upon me, untrue and unkind, would stop their battering of my self esteem.  That someone would change the record, put on a different song. 

When I was a little girl, I lost something.  I lost the chance to be a little girl.  Now I look back and realise I was never really a little girl.  I was always a warrior in training.  And in some ways I am thankful, because had I not learnt how to steel myself against the unfairness of life, I might not be able to keep fighting.

When I was a little girl, the universe gave me what I needed.  I learnt the steps to every dance I might ever need to know.  I know the choreography of life.

The Dark Sea

Grief is like a dark dense inky sea, a tide of misery.  And like the tide is slave to the moon, the dark sea breaks in ebbs and flows manipulated by an invisible force. 

Some days the sea is calm and non-threatening, just background noise, other days it is raw power, overwhelming, all-consuming.  And it takes every fibre and cell of me to keep from drowning.

Something violently shifted in me a few weeks ago, unmooring me in an internal storm that began suddenly and without warning.  An invisible puppet master blew tornadoes across the dark sea and wrought earthquakes below the seabed causing the water to move ceaselessly in unpredictable patterns and with a ferocity that is chilling.  Now I feel as though I am constantly fighting to keep my head above the water.  

The only escape is fitful sleep.  But when I wake from dreaming, there are mere seconds of disorientation and then a dark wave crashes mercilessly, brutally, soaking me to the bone, and I am dragged into reality.  If I only had to awaken once each day, it would be okay, but as the frost of winter moves in, my body is weakened, and resorts to hibernation so I sleep and waken three times.  Each time I feel the cold splash of reality, I splutter through the freezing water, gasping and fighting my way to some semblance of equilibrium.

You see, I am not the best swimmer.  But I am strong willed.  At the moment, every day is an epic struggle to traverse the inky sea.  And yet I doggie paddle, or float, or just barely hang on to the flotsam and jetsam that are tiny broken pieces of my happy memories, and I get through it.

Hope is my lifesaver.  I see it in the distance, a tiny speck of light.  Sometimes the dark tide drags me too far from hope, and I just have to have faith that it is still there, on a distant shore.

There are moments when it feels as though it would be easier to stop resisting, stop struggling, just let go and sink into the inky darkness.  But no matter how tired, no matter how hopeless, I won’t give in.

I refuse to drown.