His name is ME

I must warn you, there is no escaping him. He comes to you like a jaunty salesman, using sleight of hand to sell you lies. When he asks you what you hope for, what you dream of, don't answer. He will not give them to you, he will take them from you. He is a dream eater, a hope stealer, a futures thief.

Imagine the things you love to do, the simple things, the fun things, the silly things. Now imagine the things you hope to do, big and small. Just like that he tricked you into thinking of them, and now he has stolen them from you. Gorged himself like a junkie on your hopes and dreams, so he is fat and satiated and you will go mad with the loss.

From now on you cannot travel overseas or go camping, you cannot go out to the pub or dancing, you cannot go shopping or to picnics, you cannot go to the movies or to a salon, you cannot play sport or exercise, you cannot cook dinner or drive to get takeaway, you cannot garden or even compost, you cannot walk your dog or clean your house, you cannot drive or some days walk.  And for the future, you cannot work or study, you do not have financial freedom, the pension is sparsely enough to allow you dignity, you cannot have children and you may not ever find love, you cannot own a house or build a house, you cannot buy a car new or old, you cannot live where you want, do what you want or be who you want to be. You cannot do anything by yourself. Rarely, if you are lucky you might get to do one of the can-nots but it will be at the whim of others, you cannot choose anything for yourself.

He tricked you, and now until you die your living will be like dying. But his sleight of hand is like artistry and while you live with that horror, it will be invisible to the outside eye. Occasionally your hopes will be raised when you think a discerning eye has seen through his trickery, and then you will deflate with the realisation that they have not. His mark is indelible, and he has pulled a heist so complicated you would admire his genius were you not the victim. Because while you suffer the withdrawal of your future, you will also be wracked with pain, exhausted beyond comprehension and barraged with symptoms so rare others will wonder if they are makings of your own creation. You would laugh at his audacity at the ridiculousness of his plan, but it is working. You are alone, you are close to death, just close enough to prolong the torture, not so close to death that there is relief. And yet no one sees you, no one is watching and slowly they forget you. He has alienated you so effectively that your voice is no longer heard. He has made you so small, taken everything from you, left you weak and desperate without any hope for the future.

He has the last laugh. Because when you try to tell people his name, they will look at you with incredulity. His name is ME.   

Symptomatic

My chin juts forward pulling my neck into taut visible ropes of muscle, then swings abruptly to the left drawn magnetically to a target I cannot identify, my shoulder raises in a one sided swinging shrug to meet it. My head juts forward again, eyebrows forcing themselves up announcing a surprise I do not feel, and my upper body twists. The movements are spasmodic, violent and unpredictable. It is as though my neck has lengthened and all my joints loosened, my movements not unlike a puppet with an inexperienced puppeteer, disjointed and violent. The muscles that run between the joints strain to contain and control the forceful contortion, tightening into knots of pain as they contract and release.

I try to speak and it is as though I am verbally constipated, my eyes roll sideways and upwards, my chin juts forward again, my throat constricting. Words come out eventually but they are garbled, half strangled or they stutter out in increments.

When I try to rest my body rises suddenly and frequently off the bed, like a patient being shocked with defibrillator paddles. My eyes feel as though they are bugging out of my head, they strain to break free of the constraints of my eyelids, darting dramatically to the side or scrunching emphatically like a child learning to wink.

These symptoms built up over a few days last year before I realised I should probably go to the hospital. Since we get so many weird and wonderful and ultimately inexplicable symptoms, I have a policy of giving new oddities a few days to subside before I investigate them.

This one required attention though and when I attended emergency, the doctor asked incredulously why I had not come earlier. What I was suffering with was an acute dystonic reaction to medication, so acute that staff from far and wide came to watch me do the drunken uncle contortion dance in my seat while I waited for treatment. The treatment was a reversal drug, Cogentin, given intravenously in an injection. Problem being of course that the puppeteer refused to relinquish the marionette strings, so like a possessed or crazed patient, I had to be held down by two nurses, a doctor and my sister. And still I writhed, the spasmodic disco increasing in intensity until they pinned me down again to administer another injection.

The thing is, a decade ago, before I was ill, this series of disturbing neurological symptoms would have had me scurrying in a panic to the emergency immediately. But with hard won experience of sceptical, dismissive and condescending doctors, I avoid emergency rooms unless it is absolutely necessary. Even then I am loathe to go. Because when I go to the hospital despite the clear acuteness of my illness and whatever symptoms are threatening my life at that moment, the doctors put on their blinkers, become tunnel-visioned and refuse to see what's right in front of them. I could be having a heart-attack in front of them and they would simply raise their eyebrows at my theatrics.

I am now suffering my third bout of Dystonia. And I am not sure why the latest attack has happened. But how incredibly sad is it that, their behaviour, causes me to suffer unnecessarily rather than face their discrimination?

So instead of avoidance, I have decided in future to pose a few questions to my treating doctor/s. (Well in the case I can speak, otherwise I might just have to type them out.) Firstly, do they love anyone who is ill with CFS/ME? Secondly, if not, have they read ten or more research papers on diagnosis and treatment of CFS/ME in the last year? Thirdly, if their answer is no to both questions, how can they be so arrogant as to assume to speak with any authority on my illness? Their qualification to speak on CFS/ME is non-existent. It would be like a biologist attempting to speak on entomology. They are both sciences, but they are poles apart. And lastly, with no appropriate qualification I would appreciate that they reconsider their perception of my illness until they are better informed.

In the meantime I will suffer this contorted dance, symptomatic of acute Dystonia and I will dread the hospital and their derision, symptomatic of the medical industry's continued pursuit of ignorance of our illness.  Somebody investigate the cause of the symptoms, please and then we might find treatment.

T.A.T.

My world has become more and more insular, more separate and the outside world more alien. Partly it has been a coping mechanism, partly it has become the natural rhythm - or should I say stutter - of my life but mostly there has been no choice.

With my world getting smaller and smaller, I have spent too much time journeying inwards unable to journey outwards. I have always thrived on interactions with others, socialising, mingling, bantering and making connections. But I am no longer adept at it and like an unenthusiastic guest at a dinner part I feel uninterested and unable to muster the energy to engage. The exhaustion and pain make everything baffling and nonsensical. And the loss of vocabulary combined with my loss of cognitive function and short term memory problems make me feel clumsily inarticulate, uninteresting and surreal. And with the loss of that interaction, that affection, that laughter, that stimulation, my heart muscle has seized up into a painful knot.

I am a perfectionist and I have always been articulate, a great conversationalist, gregarious and sensitive to others. Now I struggle with how to balance that through the frustration of this illness and my severe physical restraints. And with the loss of my sense of self, I have inadvertently become stingy. In the past I could have said with all honesty, completely unflinchingly that I am a great friend with a really generous spirit. But that is not true any more. I am not a terrible friend, but I am not what I was. Visiting so often with death last year changed me, marked me, and made me darker. I saw the truth of people without the romance of life in the way, and many let me down and broke my heart. So I have become more selfish, less tolerant and markedly less generous with my heart and emotional energy.

For a long time I have felt unlike me, lost and foreign. And I realise now that it is not just illness that is robbing me of myself, but that it is me who has locked me in the basement of my heart unable to communicate with the world. It is me that is keeping me separate. And by being so inflexible with my expectations of myself and by trying to protect myself I am hurting myself. By closing off myself and my heart, I may protect myself from heartbreak, but I don't let anyone or anything else in.

One of my biggest fears with this illness has always been that I would become a self involved twat. And by spending so much time alone I have become a little egocentric, because I needed to to survive, but also without outside influence perception becomes skewed. The inward journey has embittered me with struggle, hardened my heart, closed me off and made me what I feared... a bit of a self involved tight arse twat (T.A.T.).

So for those who managed to get through the minefield in the last year or so, thank you for persisting you brave little soldiers.  And for those whom I love, and yet I have not been as available to, things will be different. I cannot promise I will be as I was before, too much has happened and illness makes consistency near impossible, but I will try to give you the love you give me. You deserve it.

I only love you boo!!!

Fury. That is where I'm at. And it is the filter through which I see, hear and interpret everything. Red hot fury. I have not slept you see. Still. For weeks. And for somebody who requires more sleep than most, no sleep is making me homicidal. Grace has fled, tolerance is scarce and patience is nigh.

Having a conversation with me is like playing a brutal game of truth or dare. Yesterday I actually deleted a facebook friend because they used excessive punctuation. I kid you not. Mind you it is a pet grievance, like writing in CAPS, it is so offensive, just not usually a travesty.

So consider yourself forewarned, I am intolerant and slightly psychotic, that is when I am not falling over slurring like a drunkard. Then you can nod and smile at me and hope I won't punch you in the face. I can make no guarantees. But you can be pretty sure since my motor skills are kaput, my vision is blurred and my reflexes non-existent that I won't connect anyway so you're probably safe.

As for sleep, I have forgotten what that is. So yes I am tired all the time, but no I don't sleep all the time. I DON'T SLEEP AT ALL. My god now I've pissed myself off.

Okay so I'm off to try another sleeping tablet, see if this one works. In the meantime my brain has decided to bombard me with a made up R&B song about some sappy girl in love. 'I only love you boo, it's true I do.' So I leave you with that marvel of song writing. Try sleeping on that people.

PS - I am not responsible for this drivel, my subconscious appears to be stoned through sheer lack of sleep and it is currently in control of my body.

Insomnia

So I have had insomnia. It makes me a very cranky and very fragile. I can barely keep this shit together. But... usually, every day I laugh. And since most of us suffer with insomnia in cycles I was wondering how I could share that gift of laughter with you.

I am not sure you'll get quite the kick out if it that I do, I actually just spat a mouth full of water over the floor... again.

My kitty Cooper refuses to acknowledge my insomnia and instead has decided to assume the position of head pain the ass and mini terrorist which involves him waking me when I do finally sleep.

This is what he woke me with this morning. 

Sigh, it's a shame he is so flipping cute.

Light

I have often felt like a child hiding in a midnight wardrobe, scrunched in the corner desperate for the safety of light. It has been a long and increasingly treacherous decade and the universe has seen fit to challenge me incessantly.

But something lovely and sweet has happened in the last year that has made me feel like a belatedly commended soldier. The light has found me more often, bathing me in the gorgeous safe warmth of hope. It is really easy to drown in the blackness when you are sick and alone, but I want to celebrate the light.

What has been hardest for me with this illness, aside from the obvious death defying struggles, is the lack of understanding. Especially from those you love. Lack of empathy from family cuts close. Some have always understood it, but some have criticised and mocked me, thinking they are doling out tough love but unintentionally being cruel. However in the last year it is as though my suffering has become more visible and in their eyes less transient.

My Ma, from the first camp, bought me a new second-hand bed – barely used, ensemble, firm lush, dreamy. I had been trying to sleep on a – although gorgeous Tasmanian Oak – slat bed that until about a year ago kept falling apart, and then my brother fixed it, but the mattress was cheap when I bought it and it was ten years old, which we all know is thirty years old in ME years.

My sister, also from the first camp, bought me a portable reverse-cycle air-conditioner, which has also improved my quality of life immeasurably. This house is like an oven in the sticky Brisbane Summers – or Springs – and like a freezer in Winter – or Autumn since our seasons have now become two. There is nothing worse for us than being so exhausted and unable to sleep because you can not moderate your body temperature.

My lovely Aunty and Uncle, also first campers, have just generously bought me the computer on which I am now typing this, the computer I was using is older than my infection and it is weaker than me. With the combination of my failing cognitive functions, its unreliability and moodiness, just connecting online sometimes was more than my brain could manage.

I have a truckload of siblings, so this may get confusing, but another sister has helped me by giving me financial support to seek treatment that I otherwise could not afford. We've not had much luck from all of it, but to have the chance to seek any treatment is empowering. Then another sister has really kindly donated me her couches, which are beautiful and luxurious and comfortable. I spend almost as much time on the couch as I do in bed, it is like a day bed, covered in pillows and sheets, and before I was on an old and very uncomfortable couch.

Which brings me to my online besties. And had you told me a few years ago I could find best friends online, I would've thought it crazy, but a bond forged through struggle in darkness is stronger than those forged in light. I have found online this whispery spider-web of illness, with each offshoot catching more love and friendship and understanding. And on days when I think I might drown, they are my life guards, without them I would surely sink.

Of my real world friends, which inversely feels sometimes like the alien world, some have simply disappeared into the shadows, but others have stepped forward, stepped up, loved me more. And honestly, I already knew who I could count on, but it makes my heart hurt with the overflow of love that they're still here beside me when it matters most.

And lastly and most importantly, strangers. Strangers are who changed everything for me. Beautiful generous, sweet strangers. I made a friend down the street who is also sick and she is a Mum, and she barely knew me, but she came to see me one day when my body seemed committed to death, and she saw me and decided to fight for me. This makes me cry every time I think about her, she changed everything. She contacted the charity Communify who then committed to get me a cleaner – I had been on the government waiting list for a year – they also got me a second-hand dishwasher through Givit and had it installed at no cost to me. A stranger stood up and fought for me and with just her voice, things changed. My quality of life vastly improved, Communify put a railing on the stairs to give me something to hang onto, they put a grab bar in the bath so I wouldn't fall.

Extraordinarily the second is a stranger, a woman who is also ill, who has a disabled daughter, she and I have been meeting in the waiting room at the doctors for the last decade and she has been able to measure my decline in weekly increments. She brings me medication she finds useful, things I would not be able to afford, she is outrageously generous.

It seems my invisibility cloak is slipping, my corner spot in the wardrobe is growing cold, and the slither of light grows. I cannot wait to throw the door open and step out, and maybe then I can be the voice of a stranger for someone else.

Death

When I sleep tonight, curled up in bed, wracked with pain, weak and defeated, I will huddle under a blanket of Death.  I am lucky in this present, that there are several layers between me and Death so its scratchy coldness does not rub abrasively against my skin tormenting my dreams with its false intimacy.  But in the early morning hours, when my subconscious is untethered I sometimes hear Death whispering sweet nothings, beckoning me elsewhere.  And one day I fear I will wake swaddled in Death, too weak to unwrap myself. 

Death is such a distant prospect for most people.  It is an idea, an imagined place, a remote destination.  I think it must be hard for healthy folk to understand what it is to be stalked relentlessly by Death.  To know that in the moments when you have not heard from it, you are being watched, chased from afar.  And then the distance closes and Death becomes bolder, aggressive, and ever present. 

We do not speak of it often; we don’t think you will believe us.  But we feel it, the membrane of protection between us and Death is woefully thin.  Sometimes it thickens like scar tissue on leathered skin, but mostly it is a miniscule layer that is permeated by tormenting forces – virus upon virus, bacterial infections, excruciating pain signals, cognitive dysfunction, spasming muscles, and neural symptoms – and sometimes all at once.

Today we lost a CFS warrior, a bright star, a creative mind, an intuitive soul.  I do not know yet if she died from our illness or complications from it, but either way we all know it will not be classified as caused by CFS or ME.

She has reinforced my belief that we must not go quietly into the night.  That we should give voice to the truth, that Death is ever present, that for those of us who are very ill, we visit with Death often, sometimes stoically fending it off, other times doing our best to just ignore it.   Sometimes we even manage to put a little distance between us, but in quiet moments of joy, we remember Death will come hurtling back just as soon as we stop being careful.

So for those skeptics who torment us, you cannot die of hypochondria, perhaps you need to challenge your belief system.  For the scientists who debate and play political games, we do not give a shit which one of you is right, all we care about is trying to have a future that doesn’t involve sleeping with Death every day.  And for sanctimonious, self satisfied students who take joy in finding fault in the work of others, you have every right to make a point, but you do not need to be vindictive to do it.  I want the truth, I don’t want a fairytale, I’m a big girl, for f*%k’s sake I battle Death every day, but don’t be an asshole when we are all slowly dying.

Doctor Danger

I have always had this really strong sense of morality, of right and wrong, so much so I feel ill if I do something that goes against what I believe to be good or appropriate behaviour.  If I have a heated argument with someone, or snap at them because I’m in a bad mood I will always apologise almost immediately and take responsibility for my role in the situation.  That being said, I am no saint and there are many moments in my life I am not proud of.

But as a rule, generally, you want me on your side.  I will stand up to the bully, I will face off with the aggressor, I will protect those I love, or even those who simply need an ally.  So as I watch my community of friends trying to live with this awful condition (CFS/ME) while being discriminated against, I become increasingly furious at how unjust it all is.  Truly it overwhelms me.

In Australia, we are eligible for the disability pension, (as we should be, many of us are house or even bed bound) and yet we cannot access disability support services.  We can get access to transport, but only if we say that the medical treatment we need transport for is not related to our illness.  We are dismissed as hypochondriacs, and yet we die off in numbers that are not documented because our deaths are reclassified as something else.  We commit suicide because no one listens, the pain is too much, the invisibility too great and the frustration too intense.

What scares me more than all of that; is the abuse of power by doctors.  Some years ago I flirted enthusiastically with death after contracting viral pneumonia, I was hospitalised for a week by a lovely respiratory specialist, but not before an ignorant doctor in emergency told me that I was wasting his time, that he could do nothing for me, that I should just go home and not bother coming back.  Thankfully I ignored him; returned the next morning to see the specialist only to be admitted immediately, having to be monitored every half hour for that week, until eventually I had improved enough to be discharged.  But what about someone who wasn’t as strong as me, what if they didn’t have the balls to ignore the doctor and fight back?  What would have become of them?

There are so many stories like this, of close scrapes, of feeling organs shut down, feeling your heart strain from simply moving, of having to crawl because you cannot walk to the bathroom, of going days without showers, of returning repeatedly to the emergency room suffering with excruciating pain and illness, only to be admitted to psychiatric wards.  All over the world there are stories of people who suffer with this illness, but because we do not fit in the neat little boxes designed to make doctors feel smart and safe, we are treated like hypochondriacs.

Imagine having HIV before anyone knew what it was.  Imagine feeling this rotten wrong thing wrapping tendrils round your system.  Imagine going to the hospital, telling them your diagnosis and watching their body language change and their tone lower to condescension.  You know it’s biological, you know it is not psychosomatic, you know there is something rotten inside you, but they just look at you dismissively and talk quietly with the nurse about discharging you with some paracetamol.  As you become more outraged at their treatment of you, you are so ill, so tired, in so much pain, you cry and raise your voice in frustration.  They nod to you and steal glances with each other, you are only reinforcing their belief it’s all in your head.  Can you imagine living like that?  Needing help and treatment, yet unable to seek it for fear you will be intentionally misinterpreted and maligned?

That is what it is to have our diagnosis.  That is why we say we would rather have Cancer or HIV or other politically incorrect things.  Not because we don’t understand the gravity of those illnesses, having experienced what we have we would never doubt nor underestimate the suffering of others.  No it is because those illnesses have treatment, awareness, options, research, support, and statistics on survival or death.  People look at me incredulously when I say I would rather have most any other life threatening illness.  But if you were to walk in my shoes, you would understand.  There is no certainty, but I can fight against that; there is no treatment, but I can pray for one, but to have people treat you like a hypochondriac while you suffer so much quietly against all hope… that is too much.  I would rather know the likelihood of my death, than to have to fight not only this insidious illness, but with the very people who have been entrusted with the job of treating me, and yet instead they shake their heads and dismiss my suffering because I refuse to fit into their neat little boxes.  And the irony of all ironies, those few brave doctors that risk treating us, specialising in the treatment of our illness, face the same treatment metered out to us by their colleagues.  They too are ridiculed and scoffed at.  The rare doctor that can think laterally and outside the box is the one that can treat this enigma, but few risk ruining their career by doing it.

A quote from, Dr. Nancy G. Klimas, who is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. 

“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Source: http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Dr. Mark Loveless, head of the AIDS and Chronic Fatigue Syndrome Clinic at Oregon Health Sciences University, in 1995 testimony at a congressional briefing, noted that a "Chronic Fatigue Syndrome patient feels effectively the same every day as an AIDS patient feels two months before death."

Article Source: http://EzineArticles.com/3660627

Crazy Cat Lady

It was innate in me, the predetermination of my fate as a mother.  I was never one of those people that planned to be married and have a child by a certain age, but I always knew I would have children at some point.  So this last birthday, yesterday in fact, was particularly bleak.  Because now I have had to face the reality that I will not be a mother, that I will not nurture and raise my own child or any child. 

I am thirty-four, which again, has never bothered me.  Age didn’t really worry me, but looking at it refracted though the lense of illness, is different.  Each year is another nail in the coffin of motherhood.  And this year, it has been inescapably dark. 

Throw most anything at me, and I’ll keep getting up, keep fighting, but the realisation that I will never hold that role has near obliterated me.  So much so I have found it hard to even admit to myself out loud, for fear I might sink never to get up again.  It is not that I am without hope that I will ever get better, but at my age with the combining factors of Endometriosis and PCOS it would have been a battle anyway.  Then just recently I had this revelation,  I have always known that short of finding a brilliant partner to support me, that it would be impossible while I am sick to even consider mothering a child, but then I realised that there was a good chance, if current research is correct, that I could pass on this insidious beast to my child.  And there is no way I can gamble on that. Ironically the fierce protective mother in me won’t let me be one.

  

But I am a Ma to two fur babies.  And as much as I used to take the piss out of obsessive pet owners with their stupid pet clothing and accessories and toys, I’ve now become one.  I draw the line at clothing, but toys and furniture, I’m all for it, because without my two fur babies, this blow would be too much.

So my adoration for them has increased if that is even possible, and my heart sometimes feels like it might burst because it just cannot fit all that love in there.  In moments when things are at their worst, when I cannot move but cannot sleep, I put my ear to the bed and Tobey’s purr reverberates through my head and I listen to his sighing breathing and it puts me to sleep.  Then when I toss and turn, Cooper lifts his head off his front paws and chats to me, berating me until I lift the doona so he can crawl under and curl into a tight little ball against my chest literally protecting my heart.

They make me smile every day, and laugh and yell, and without them I would be terribly alone.  So in future when I hear someone talk about their pet as though it is their child, I will nod my head in understanding.  It is not so silly after all.  Maybe the crazy cat lady isn't so crazy.

Truth

The truth, it can be uncomfortable and confronting.  It is certainly not what we want to face constantly.  Most of us think we're unflinchingly honest, but really we hide the truth away behind hair dye, manicures, makeup, spray tans, expensive clothes.  Or even without those every day rituals we take for granted as routine, we hide the truth with little white lies, to ourselves, to others.  We don’t even realise we do it and we don’t mean anything malicious by it, it’s just the way we get by.

I’ve always been honest, truthful, genuine, and authentic.  Or at least I was mostly.  I functioned within the normal societal expectations of ‘spin’, hiding the truth a little behind the façade of a beauty regime, behind tact. 

So imagine being stripped of those pretenses, imagine having to confront the stripped back you every day.  Imagine being so sick that even a shower can be too hard some days, so you certainly can’t manage makeup, spray tans, manicures, expensive clothes or some times even brushing your hair.  Even the most secure in their skin would find it particularly daunting to age and put on weight, lose muscle tone and grow unearned wrinkles.

Every day those of us with CFS/ME face this and those of us who contracted it severely and early, also face the likelihood of a future without children, without a partner, without security or a home, mostly alone and without independence.  That is a lot to face every day, through pain, exhaustion and illness.

So when I write, I try to write my truth.  To give voice to what it is to live with this illness.  But before I got sick, before I suffered for years on end, before I watched my future options fade away I could hide from my truth a little bit.  I could make myself feel better with makeup, with a shopping trip, with a girl’s night out.  Now there is no escape from the truth.  And I say this not to garner sympathy, but in the hope I’ll make you understand that I don’t mean to confront you with a bleakness that is too much.  I don’t want to scare you away with my truth.  But I do want you to understand that with constant suffering comes desensitization and we have become so used to facing the ugly reality every day that we don’t hide from the truth, we don’t shy away from it and we certainly can’t escape it. 

So when I write of the bleakness and the darkness, it is the truth, but just know there is some lightness in there.  There are days when I laugh, days when the pain is a little less and days when I can stand or walk without falling over.  They are not often, but they are there.  And above all else, mostly I am okay.  We are okay.  It may not be pretty, but I’m still kicking on. 

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.

Slapstick

My life is a slapstick routine. Today I ate a napkin.  By accident obviously, but nonetheless I ingested it.  Then I managed to sustain a dusting injury.  How you ask.  Well who knows?

Once I ate ants.  And I’m allergic.  It was like pepper on my tongue.  I had to watch it for an hour to see if I was going to choke.  I didn’t, it merely swelled enough to impede my ability to speak.

I fell on the cat once.  Well probably more than once, but at this particular time it was after standing in front of the fridge trying to conjure up something to eat when I started to pass out and plonked gracelessly onto the cat.  Like a furry pillow, a not very impressed angry mewling one… but he broke my fall.

Then there’s the time I head butted a door frame.  And there was no prior bull in a china shop impersonation requests.  It just seemed appealing.

Or the time Ma was helping me change sheets and I fell face first on the couch over the armrest, so my feet were up in the air.  She thought I was just having a rest.  Never could understand how that would appear so, odd way to have a rest.

And recently when I had my hands bandaged, the clip caught on something in the fridge disabling me so I was stuck while the fridge door shut on my head.

Oh, and the time I tripped over the cat, into the fridge and when I grabbed the freezer door handle to steady myself it broke in my hand.

And I drop things…. all of the time.  And spill things.  And I miss my mouth.  Oh and I have scratched my face several times when simply trying to move a blanket or get my hair out of my eyes.

Cats and fridges, they’re a problem…and apparently eating, that too.  Perhaps I should refrain from moving at all.

Or I'll just continue practising my slapstick routine until it's perfect.  Then when I'm well I can take it on the road.  Tour dates coming later.  Much later.