Marionettist's Escapee

Trapped in a deadened slumber, my body sinks into the bed. I am awake but my brain is only dimly aware of the world, far away, muffled through a lens and filter of the sleep only those who've gone days without it understand.  My heart is suddenly galloping, a terrified thoroughbred, mane trailing, tail horizontal, clip clopping manically through my arteries causing anxiety to follow in its hoofbeats. My heart is trying to escape a throbbing bass reverberating up my throat.

Adrenaline is flooding my system in a  desperate push to move me to act in response to the poison it's sounding the alarm for.  The smell of chemicals burn my nasal passages,  grip my neck, my throat muscles clench in and out touching each other in painful escalating speed. My chest aches and asthma is a medieval corset. It squeezes my lungs. Instinctively my breathing shallows and the exhale whistles in a thready gasp. 

My brain lets rip a muted roar for oxygen. Words are beyond my capability. I mime uselessly at Ma gathering all my strength to wildly eyeball my nebuliser, my hand a dying fish on its last pointless flop against my chest as life giving oxygen drains from me. 

We suck at charades or rather Ma does.  Yesterday while paralysed having stopped breathing, tears leaked out of my eyes, my body's distress streaming rivulets down my face as I tried desperately to get her to notice my unmoving chest. My muscles remained stubbornly fixed my eyes unblinking. I had been here before, paralysed, not breathing but some part of me had known to preemptively put oxygen on... this time I was not so fast. Even then the nurses called a code and started resuscitation as my lips turned blue. Screaming, "Come back Amara, come back." I was right there but helpless in my silent bubble.  Locked in.

Have you tasted the poison of chronic infection? It drips steadily down your burning, aching throat, throbs and leaks in your ears. That is what's happening except I can also feel my cells ablaze with stuttering inefficiency.

A galaxy of cells sputtering and choking on tendrils of infection. Webs of bugs catching cells and causing my immune system to misfire. 

The fighting cells, warrior cells are weakening my body in their battle to thwart these infections and viruses. Draining my energy dramatically like a car with a battery that goes dead suddenly. 

My body is desperate for the poisoned Snow White slumber to recharge and build the energy necessary to untangle my immune system warrior cells from their battle. It is a crash episode one that echoes my earliest days of 18hours of sleep daily and 6hours of zombie. Stacked on top are neurological symptoms  twisting my body into contortionist dance coordinated by a wicked marionettist formed from the bugs that riddle my brain and bones, a hive mind demanding my body seize, convulse, freeze me in paralysis and cease my breathing. 

I am not destined to be a marionette forever. One frayed cord snaps off at a time. The more determined I am, the more focussed, I find myself using my contortions to pull tension on the elaborate construction holding my body in the mad marionettist's rough hands.  His beloved frame is dragged haphazardly across the sharp edges that inevitably meet my body. Each time those strings wear and fray, a fine fibre of yarn, one strand at a time discreetly snaps and I am ever closer to my escape.

Narwhal

My lungs hungry for air, my eyes sticky and heavy, laden with sleepless restlessness and a pain so bone deep it feels like my marrow is aching.  I peer through the blurry constellation of floaters that whisp across my vision in the dark night room where the curtains hold back the midday heat and glare of newly sharpened knives, desperately trying to reach their target of my vision, like a knife thrower finding the balloon.

This is the way I wake every day. It is why seventeen years have passed and still I feel like I am the girl who just fell ill and believed confidently she would recover quickly.  Instead my life rolled slowly down a hill with little peaks, until it found the massive decline and sped recklessly towards every more endangering moments. When suddenly days were filled with such intense suffering my body began to accept that adapting to the new and life threatening addition of symptoms was the path of least resistence.  

Doctors were useless, except those who braved the special subset of uncharted or at the least secretly charted treatment of this confounding curiosity - like the long believed extinct Narwhal - passing newly discovered research and anecdotal information amongst a network of explorers. The rest, those outside the network live in a state of cognitiive dissonance believeing the impossibility of the existence of such a combination of curious symptoms were nothing more than a psychological failing of the patient and the treating doctors.  While the doctors who knew better, risked reputation, invested fully in unmasking the reality of us, their curiosities.

It became tiring gambling constantly on the hopes that some new specialist may have access to the network of explorers quietly accumulating knowledge and occasionally sneaking research papers out into the public, placed in the revered Lancet. Yet still ignored by pathologists and the medical profession at large who sought to cage the Narwhal, like patients with inaccurate classifications, easing their own egos, for they dare not imagine a beast of fable when they could instead more easily concern themselves with easy to treat classifications, however ill fitting.

So today I sit here, my gray matter aged some ten to fifteen years past my bioloical age, my youth stolen, and I wonder have I lived in denial for this long.  Patiently waiting for some explorer to find me befrore I became extinct? Although truth be told there was not chance of extinction for there are too many of us and we're nearing pandemic levels.

The realisation was and is earth shattering.  I am on a ledge psychologically dealing with an age that befits someone who has a history of life, of moments filled with love, joy, loss, happiness, sadnes, grief, choices in career, partners, children, buying homes and cars, instead I'm dealing with the most intense heart ache I have ever felt.  This time stolen from me, this life of memories and connections, the alientation that taunts me and the bravery it took to get here feels like a rising tide full of flotsam and jetsam.  When the ledge slides into the sea I hang on perilously to the pieces of who I used to be and yet imagine letting go and just drifting to find myself.

Who am I?  I am not illness. And despite knowing my classificaiton by the explorers as being a Narwhal, which is scientifically astounding, I don't want to hear that anymore.  Simply put I wish to be normal.  Not some curiosity that fits nowhere comfortably. 

My body betrays my understanding of who I am.  If I look in the mirror I find myself wondering what happened to me.  Who loves me?  Can I love that reflection of a person some seventeen years older than my inner voice knows me to be? How did I earn all these lines and suddenly gain weight, despite eating so well?  It is like in the night someone slipped on prosthetics, a suit if you may of what I would look like if I aged while ill.  I find myself reflected back a portrait of someone who looks like they've lived nearly two decades when really I spend every moment trying to breathe my way through another undulating wave of pain and exhaustion.

The assault on my system has been too much.  Without access to appropriate care my body has misfired and no longer functions normally. The comounding of one failure of a function upon another, has led it to become this curiosity.  And daily I am left wondering if I alone have to find the answer to my own riddle. 

When I finally move on the bed, a thirst so all encompassing overwhelms me.  It is as though I have been in the desert for days without water. My legs refuse to do as they're told, my face is red and burns with chronic sinus infection, my hair greasy as my hormones surge unhealthily, my weight would suggest my once athletic body had taken to snorting sugar when the opposite is true.  Pain is an octopus of tendrils starting with an intense migraine and working through my nervous system, so that every nerve is on fire, my teeth and jaw aches. I fear the accidental contact of neurotoxins (wrapped so alluringly in advertisers brainwashing packaging of 'lasting fresh smells' of body sprays and products) lest I stop breathing, after seizing, getting paralysed, convulsing and eventually my airways closing in an ever increasing beat of bronchial spasms.

Yet I get up every day and find my way to the lounge/day bed where I sit and half zombie, half Narwhal.  I imagine life in colour, the giggles of children running around my house as my partner mows the lawn, the windows thrown open and sunlight making patterns through the greenery that thrives in the light.  Where I am worrying if I have all the ingredients for the dinner we planned and if the kids are too hyperactive, then basking in the moment, before realising it was all a delusion. I am still on my day bed unable to move, burning up, yet suffering through the heat as my back aches from moving in a slightly different way to the way I normally move. I can't concentrate on which sensation is most pressing because there's too many.  But I feel the tears as they stream down my face soothing my burning cheeks and yet failing to lighten my heart's load.

I am Amara aka Marzi and I have ME, MCS, TVBD and so on and so forth. I can't breathe properly, tend to myself, shower myself, feed or shop for myself. My treatment is sporadic and dependant on the love of my fellow travelers. We are the watchers, the voyeurs of life and we hold each other up. I am a warrior and my light burns bright because despite it all, I am not defeated, nor will I drown but I have fallen deeply into a ditch.  So I need you to help me get out of here.  

Please weave a ladder of love by donating a strand of healing light, through donations, sharing my story, my writing, my spirit, by being another beacon in our network of watchers readying the charge to break free of the cages we were never meant to be placed in.  I am what life carved of me, an ethereal beautiful statue whose spirit is trapped inside.  Come bring your chisels and get me out of here.  If I am going to survive this, I need you to help me.  Love me and see me joyous, glowing and well.   And so it will be.  For the Narwhal thrives despite it's hunters and ignorant disbelievers.  I am a Narwhal.

"Our hope now is to help her have a life.  If you want to help please go to:

https://www.facebook.com/Aid4Amara/ or https://www.gofundme.com/a-life-for-marzi and help us get her there.

Please share widely and donate as much or as little as you can. We thank you for following her journey and supporting us and The Amara Campbell Foundation  :)

💛 Aid 4 Amara team 💛
e aid4amara@gmail.com
b lifelikethis-me.blogspot.com
v https://youtube.com/channel/UCyOCaXCd9DpN7ChzFR3UbFQ
d PayPal aid4amara@gmail.com
   Bank Westpac A Campbell
   BSB 734083 ACC 629164"

Stitched Up

Someone took an ice cream scoop and scooped out all of me. Hollowed me out and made me an empty, echoing, lonely space.

With slight of hand while busy torturing me in new and ingenius ways, upping the ante every single day I didn't notice the stitching. I recognised how trapped I was feeling but I did not notice my loss of movement.

The further I crawled inwards away from the light, away from the pain, away from the feelings of being less than, the faster they stitched. So every time I wanted to peep out and try to reach for someone, I would have to contort myself into painful positions just to squeeze my way out of the opening.

Slowly I was being cocooned in a huge sack of misery, hollowed out so my soul clattered around sadly whispering for company in an empty vessel. The hole has become so small no light or love gets in any more.

I wish I had known to bring matches or a torch. I can't see my hand in front of my face at night, the gloom of pain is so murky and thick like soup it fills the hollows and wisps out of the bag letting out little puffs of sighs.

Alone I am. No longer certain anyone can see me. I've been completely stitched up. Trapped in a bag of misery. Sighs are my only breeze. My soul has become embittered, too much time trapped alone has made me grow prickles and that which is not hollowed has puddled into soft gooey mess of over-sensitivity. All raw nerves, wrapped in a sack, still through the hole comes the pain. With the covering stripped off each nerve so that I am a huge network of beacons for the collective energy, it all brushes over my nerves and even thoughts and whispers are torturous.

Life devolved to a prickle, in a sad sack, sighing like the breeze. No one will find me. Perhaps it's best I give in and stay in the dark. But I would miss the world. So I will hibernate instead and hope to grow new skin, cover my nerves and stop feeling everything. I may love abundantly but I need to protect myself from absorbing the energy of those around me. Mine is enough. So I will re-emerge in the spring a prickle-less bundle of new born love and joy having shed all the sads and pain. Escaped and reborn, tearing at the stitches of the darkened pocket where they trapped me, emerging anew full of abundant light, joy and belief in the possibility of anything and everything.

Paper

I am flat. So flat I am paper, brittle and dry, devoid of life. Just here. Existing. I want to abundant colourful life. Alas all I do is sit here unmoving, an invisible, ordinary nothingness that has been allocated to isolation. I am just a dry old piece of paper waiting for the rubbish collection, the fussied tidy up, here where the fan blew me down to act as a mat for dust bunnies. I am a flat white nothingness a void of existence.

Fold me into a paper plane and throw me through the blue skies. Let me soar and feel the wind rush under my little paper wings. Let me feel the glory of the sun on my wings and the simple beauty of the world as I dive softly to settle into the dewy glistening grass as I am quickly surrounded by an army of insects seeking shelter and food.

Use your delicate, creative hands to fold me into a paper crane and hang me from a mobile so I dangle over your gorgeous tiny human, fat fingers and bright eyes twinkling, melodious giggles erupting as the breeze blows me in patterns above the cot.

Write your grandmother's favourite chocolate cake recipe on me in your easy drawling handwriting, the text unevenly spaced and sweetly messy. Then take me to the shop. Pull me from your cluttered darkened bag where I was wedged between your lip gloss and the keys and let me see and smell the people, the foods as you trail up the aisle hunting ingredients among the blustering chorus of activity.

Little human, fold me in your best most perfect alignment of creases, four times to shape a card and use your sweet little hands, covered in biscuit crumbs to draw art for your aunty for her birthday. Make me into a treasured message of love. Coloured crayons textured on my bare dry skin, tattoos of childhood thoughts forever etched artistry.

Artist, sketch your most favourite place on my skin, send me into a world you have created by using simple pencil and pen strokes before layering me with water colour and making me art to be stared at and adored.

Author unbridle your dreams and unblock your consciousness, let your subconscious flow and write the most profound message your soul yearns to share. Watch it flow naturally without pause across my skin, your words changing the future for those who read it.

Gasp, someone has scooped me up. This could be it. Oh please don't let it be the bin. See the beauty and infinite possibility in the blank canvas you hold casually in your hands. Oh I am not paper. I am me again. The paralysis has passed and my communion with the floor while immovable and locked in, has come unstuck. Now I am back where I started.

I will not fly, or watch over your babeling. I will not be carried to the shop with a treasured recipe etched on me, I will not carry the wishes of a little human on her aunties birthday, I will not live in artist's world or carry the words meant to change the futures of those who read me.

I am just paper again. Flat. Unnoticed. But now I am crumpled, dirty and I have several tears in my skin. There is that. I have character.

Change

Change use to be my bag. I used to thrive on it. It was exciting and imbued with endless possibilities. It probably started from my childhood, we moved every couple of years when I was a kid, we used to buy or build and then we'd move. Most of the houses – something like seventeen – were in Ferny Grove. The furthest we went, apart from a few years at McDowell before there was even a roundabout (oh that horrendous roundabout) was Toowoomba for six months, well that was a weird trek into a parallel universe. They put all the new kids (including my little sister Rhiannon who was in grade one, I was in grade three) in the new class room with the new teacher. We were segregated from the Toowoomba kids.

One bonus was I did year five work and she did year three work. But it was a strange place for us – no offence to those of you that come from there it's a beautiful country town but it's not so welcoming for newcomers, or at least it wasn't – so we moved back to our old stomping ground.

And I went to Ferny Grove pre-school, Primary School and High School. But we continued the tradition of moving house frequently. And I liked it. Then when I started working as soon as was legal, fourteen and three quarters I got jobs, starting at the horridly unprofessional Snow Deli at Brookside where they were incredibly unhygenic and frequently shorted me or overpaid me. Stupidly I was honest and would tell them (they would make me work it off, rather than taking the over-payment back, keeping in mind in those days it was cash in an envelope pay), then when they under paid me I'd have to get my Mum in to argue with them and look through their books to prove they'd fucked up. I was already smarter then their manager at fourteen. So it inspired a series of jobs, and at one stage I worked three. Full time at Mountain Designs head office Monday to Friday, Thursday night and Saturday at Woolworths Stafford Deli and Friday nights and Sundays at the Ferny Grove Bowls Club. Plus when I could the private boxes at the football – union or league – as the bar attendant serving lovely plumbers and tradies or asshat lawyers and barristers who were always the most problematic.

I then moved into temp work and loved that too, it fulfilled my need for change and my love of meeting people and I was very comfortable with learning new things I was intelligent enough that I quickly adapted to new environments and became friends with staff. I became a favourite of many companies because of my ability to seamlessly transition into their teams.

Then I worked the longest period I ever worked anywhere – four years at Education Queensland – and ironically had just started a job with the Human Resources Rehabilitation Unit as an Executive Assistant when I got sick, very, very sick. And I tried to return to work, but I kept falling asleep and falling over. And I was young and I was naïve. A woman I used to work with saw immediately what I had, she told me her brother was sick just like me. He had Chronic Fatigue Syndrome. And pretty quickly I was diagnosed with it. Thankfully because that doctor saved my life. I lost my job because I was a casual, which isn't right and wasn't right. My old boss and dear friend went to bat for me. I should never have been casual. They should have made me a permanent employee by then. But the new director of HR had in for me. She really didn't like me and frankly in retrospect I didn't give her much reason to. I was too sick to work, and yet I would go out drinking. I did it because after spending six months as a saint doing everything right, eating barely anything, restricting my diet, resting and working barely existing, I didn't get any better. And when I drank it gave me false energy and for that time I felt normal. I was such a gregarious and outgoing creature. I had worked full time, played netball up to seven days a week, spent lunches with friends every day and always had weekends full of plans. Then bam, nothing. Four walls, revolting food, endless torture and no escape. So I drank. And she heard about it amongst other things I did that were not indicative of a sick person. But I was a kid. And I had lost my world to a torturous illness. I couldn't deal. I sent out mixed messages and I confused people.

Anyway.... that's that. So this incredibly gregarious, outgoing, young woman with extensive and varied social circles was suddenly slammed shut into a box back when the internet was a major luxury and people just didn't really call you. I lost myself. I self sabotaged. And then I would be good and nothing would improve, giving me no incentive not to find at least some happiness in company while drinking instead of the stark isolation I had been locked into. It was and is the most soul destroying and hope crushing world to be trapped in.

It has changed me. I am not who I was. I used to have parties to celebrate my birthdays, populated by seventy or more very close friends and they were legitimately close friends.  I was very good at maintaining friendships. Now the limit is no more than two to three people – talking very softly one at a time – or I go into the foetal position shaking and sobbing hysterically because it feels as though my head is being stabbed repeatedly by knives. I lost the ability to maintain friendships with people I had known and loved my whole life, because I couldn't even look after myself. They thought we just grew apart when really they just grew away from me and I never saw them again. They stopped reaching out. And although I still felt exactly the same adoration about them, I simply could not reach out. I became invisible, translucent and weightless. A non entity.

So time stopped then for me. Every thing since has been grey with occasional slashes of colour. Garish reds or the very rare dash of blue with beautiful dots of sunshiny golden yellow.

Now I am me. A shell of she. I shiver and shake at the idea of change. I get overwhelmed with the thought of it all. I used to thrive on it. I loved it. Now it is so complicated. My parents are poor age pensioners. They are my carers. And they're both sick. I am a disability pensioner and I cannot even get myself in or out of bed alone any more. We suddenly have to move house. And it's not like the adventures of my youth, I am a cowering mess. There is still a steel will but it is weakened and cracked.

On the weekend my sister Rhiannon and my friend Fiona came to help pack and I barely helped, I could do much except direct really. And yet by dusk I was projectile vomiting, with gastro, clammy with chest pains and unable to walk, my head exploding with a mitochondrial migraine.

Change. We have to move after just under two years and I'm not even fully unpacked. The house we loved just fell through. We don't have bond. We can't afford movers. We have nowhere to go. We can't afford double rent in case we do find the right place (dual living, hi-set, pet friendly) too early. The owners are likely to be asshats and refuse release our bond even though we've done everything right,  They're simply that way. The roof leaks, the lights short out, there's no insulation so we have ridiculous electricity bills because I cannot moderate my body temperature (they promised to drop the rent as we pay way over market price  due to the urgency of finding a house to move into, and predictably they then reneged their offer), there were no curtains or rods … I had to do everything to adjust this house to make it safe for me and now we have to move. And I can't work out the how of it.

We will. I will. I'll find that girl I used to be and wrench her out and try to make use of her for the small things. I can't do the big things. I'm too busy trying not to die. But I can summon her up for the little things. The bond loan. A charity loan. Commandeering volunteers. Something.

Please just pray for me, send me good vibes, meditate on good health and a beautiful change, do whatever you can to send out love into the universe for me and my parents. Because we've been through enough. And it shouldn't be so hard all the time. I need a break from the torture.

Help me wrench her from the shell. Help me please? Help us. We need it.

And thank you. For being in my life For hearing and seeing me. For loving me. For your unconditional unwavering friendships – especially those forged online in sickness, in the dark – you are the best of me. And I love you all xxx

Tiny human in the mist

Little by little it crept up on me. I feel as vulnerable as an innocent tiny human lost in the forest as the the light of day fades out and a dark and menacing mist curls its way towards me around the trees, enveloping the trunks at eye height. The mist is primeval, it radiates an intense and threatening presence and I feel myself panicked, my little heart beating like a bird fluttering uselessly entrapped in a too small cage, the bars painfully catching its wings.

Stuck in my throat is an aching lump. Droplets dwell in my tear ducts at the ready, as though all they need is to hear their marching orders, “Get in formation. March down her face. No that's not enough, run, gush like a waterfall, drench that face.”

My heart physically hurts. It feels engorged, overloaded with the injustice, loss and terror. The noise of the world feel like painful barbs, blows to my body and my brain, the light feels like the sun has moved closer to earth and burns my retina with the slightest sliver of yellow that stripes my floor if the curtain parts. My brain hurts, my skull feels tight around my head, the skin taut and pinched. The mist has overtaken the defenceless tiny human that lives inside me. She is trapped, like an ancient faerie tale, in a twisted land, dark, cold and alone and waiting for someone to save her.

But nobody comes. Nobody has heard her cries. Maybe not even me. I have steeled myself against her angst and terror filled psyche. Allowing myself only to pay attention to the now. This very moment. Because it's the only way I know how to get through. And yet something has broken, perhaps she broke through the mist I don't know, but now I hear her and she's been tugging on my heart, wrenching at my gut, choking my throat and welling my eyes up just trying to get me to listen to her and speak her truth.

She is me. The part of me that I don't let out because it feels like letting go to her will be impossible to recover from. I am terrified. Every day my life worsens and I don't know how to sustain the courage to keep facing the next moment, let alone tomorrow. I do not want you to think that I am going anywhere. I will not leave. But I cannot quiet the inner voice of the wise tiny human who lives in all of us. She is unfiltered and unwilling or too naïve to participate in pretence.

Sunday night I was so incredibly ill I thought I might die. And I know the difference between dying and feeling deathly, I've had my flirtations with death, the real ones, so I can differentiate. I have had a migraine for weeks, months even, but this was different. This was like my head was going to come off. And I had a vomiting and gastro bug picked up from a friend who had visited her friend in hospital – I should have thought, should have realised – never again post hospital visits. Then (and warning boys or the squeamish you may want to skip to the next paragraph now) I had my period. But not in the normal sense, this was previously a fortnightly visit that had not come to visit for months and it was doing a hell of a lot of catching up. It was all dark and all clots and all excruciating. Even the slightest loss of blood for me is dangerously weakening, this together with everything else and I had my perfect storm. Then I got chest pains like I've never experienced before. Intense and wrong. I felt wrong. So not right. So far removed from okay.

The paramedics came and in the dark comedy that is my life, my cat Tobey escaped for an adventure so Ma and my Dad were running around the cul-de-sac at three am attempting to herd him back into the house. Meanwhile the paramedics entered the house without noticing the prominent sign warning NO PERFUME. And Jock – the Northern Irishman, oh the irony – had been marinating in cheap cologne for three days. So he nearly killed, an already nearly dead me with his enormous cloud of neuro toxins. I had a massive seizure, got paralysed and followed it up with a sterling finish of an asthma attack.

Since it's Ekka time, the hospital was filled to the brim with the fluey, infectious and gunky sick people. I couldn't risk it. So I allowed my tear ducts to give the order and and my face was wet with streamed tears at the ridiculousness of the situation. Me, people like me, we need help the most. And yet I cannot get it. Thank you government. Thank you health system. You just may kill me yet.

Rochelle, the exceptionally kind paramedic who had thankfully refrained from marinating in her own perfume bath, told me I was the sickest and funniest patient she'd ever had the pleasure of meeting.

Ma and I had giggled our way to and from the toilet while I drooped about like a wilted flower on the walker, unable to control my muscles or limbs and she unable to control the walker.

Maybe it's Robin Williams death that has the tiny human in me yelling so loudly. We're not so different me and him. As far as human beings go. I hide my pain behind a layer of humour. He did the same. But I'm tired.

And interspersed between the dark had been moments of laughter and lightness, but like dashes that conjoin and become an unbroken line, the darkness has stitched itself together and the mist is merciless. So I think I will just stop fighting for today, and we will go to sleep under the mist, pull it over our heads like a blanket, rest on the forest floor and let the world work out its shit. I've got enough to deal with. But if you happen to hear my inner tiny human's cries, please don't ignore her. She was very brave to fight her way out.

My twisted faerie tale - normalcy

You never know what expectations you  have about life until they are not met. I was never a girl who had wedding dates, locations, dresses or honeymoon destinations picked out. Nor did I have a set age by which I expected to be married and have kids.  But as I approach 37 I find for the first time a sense of overwhelming panic enveloping me in the most unexpected moments, catching my breath and bringing tears to my eyes.

I may not  have expected a faerie tale, but I certainly didn't expect hell either.  If I am honest I imagined a love deep and soulful, where I was with my best friend, and we talked on intellectual and emotional subjects and had similar senses of humour.  We worked as a team to achieve things, no matter how big or small.  Instead I was with my best friend and everything that was our friendship slowly got lost as his very traditional parents whispered in his ear about my inability to work and how that made me a less valuable human being.  My illness progressed and in retrospect I have realised that he often relied on emotional manipulation or guilt tripping me into doing things that I wasn't up to (he simply couldn't understand my illness) and because there was a familiar underlying dynamic he was inadvertently pushing all the right buttons.  That pushing caused my illness to escalate and it made our relationship crumble.  But we had the most beautiful and amicable of break ups because of that foundation of friendship.  What I didn't know then was that while we were parting because he couldn't cope with my illness, what he really meant was he couldn't even manage to be a friend to me while so ill at all.  Ever again.

I imagined kids always, it was obvious to anyone that I had an innate calling to motherhood.   I had a miscarriage in my mid twenties, so that was stolen from me, but in some ways I am thankful because the type of mother I want to be would never have a child and potentially pass on an infection (that I didn't know I had then) nor would she bring a child into a world where she couldn't look after herself let alone a child - but I was younger and more naive then - time and hard lessons have made me cynical and harder. Nonetheless I would have kept that baby.  And she would have been eleven today.

Thankfully I don't need any sort of reassurance from anyone about my self worth.  I am a kind, resourceful, generous, intuitive and giving person who gives all of what I have to spare to others to sustain them and help our illnesses get recognised.  I have my faults and I own them, certainly there is a big flaw that has become more apparent lately, I self sabotage and I throw myself into advocacy to distract myself from my reality.  And it has been working, it has given me purpose when I felt like perhaps it was best if I were no longer here in hell.

Time moves forward, as naturally it does and my illness keeps me trapped.  My beloved friends are passing all those milestones adults take for granted as markers on their path through growing up. And now my heart aches as my best friends all fall pregnant and have babies. Although thankfully the love in me can put aside any sort of envy and just feel pure unadulterated joy at their gorgeous tiny humans, but the mother in me - and I am a mother because I carried a child in my womb, full term or not - dies a little more each time I think about the fact in a parallel universe my children could be growing and experiencing the world with theirs.   Little faces side by side grinning mischievously at the camera faces smeared with food, feet dirty and laughter tugging at their mouths.

To distract myself, I try to imagine a normal day.   One in which I awake and notice the sunlight catching dust motes where the curtain is parted, and I stretch cat like, feeling so rested and dreamy.  One of my two kitties Cooper chases my feet around under the blankets trying to catch my toes in a gentle bite and I giggle spontaneously.  

Just those few moments would be heaven.  Instead in hell, it is very, very, different.  The room is heavy with darkness because I cannot stand the light, it burns my eyes and my head throbs with the slightest movement.  And when I wake the first thing I feel is the intense bone deep ache that is always present.  I feel hungover, and am disoriented uncertain of the day or time.  Tobey my older cat lays near my head, ever my minder, while Cooper screeches at me to wake up and his voice is unbroken, frozen in the kitten stage and he sounds like he's being tortured when he is merely serenading me with his song of the morning and yet that sound yanks viciously at the motherly instinct in me and my body floods with adrenaline. I am intensely pained and cranky simultaneously.  And now thanks to the cat opera wide awake in hell.

I go to speak but I have yet to fumble for my medication as my mouth will not be manipulated into shapes to form words until I've gulped it down.  So I grunt and reach for my phone to call Ma, who recognises my number and drags herself up my stairs to get me from my bed.  I try to sit but my body doesn't cooperate and it takes six or seven attempts to manage to get upright. And then like a well oiled but clumsy machine, we load my walker with meds, pillows, water bottles, pawpaw ointment and I roll off the bed so we can pull the sheets up.

I fall down.  Hard.  I get up again trying to avoid the hand Ma is offering as her back is always paining her.  Then I start my weird gait, like a ping pong ball bouncing from wall to wall.  At one point I get stuck my head against the wall my eyes open, my arms dangling behind the bar that runs the length of the hallway and I am paralysed.  Thankfully I am at a lean to, so my chest takes my weight on the wall but my cheek is excruciatingly painful. Having been upright for a few minutes, my hands and feet have started to burn and the ache in my soles and palms is like nothing you can imagine.  My mouth is dry.  And it is all I can do to will my fingers to gently squeeze Ma's hand once to indicate yes I am present, with a predetermined form of communication.  As the time stretches my eyes widen in panic, my throat is not getting the air I need and my face is crushed against the wall.

Abruptly as though by magic I come unstuck and my body frees itself into an uncoordinated dystonic twitch as I rub my cheek and slur that I am okay to Ma.  We make it to my day bed where I unload the stores from the bedroom and assemble my pillows so that I am reclined with no strain on my heart and my knees are lifted with my feet slightly raised to take the pressure off my hips and knees as they are constantly dislocating.  I am very hot and my skin crawls as though a thousand bugs are marching over my body hairs.  My face is flushed and now my soles and palms burn to touch, I place them against Ma's cold arms for relief or hug  one of my stainless steel water bottles between my palms, relocating my hands as the bottle warms.

Suddenly I am cold, so I pull up the blanket that sits at my feet although the weight pains my legs and I wrestle on the jacket that rests behind my head.  It is this crazy flip flop of thermodysregulation where I cannot ever find comfort in whatever the climate.  In fact most all of it makes me sicker.  Ma cracks the back door for the cat to wander out and after one second I smell smoke, maybe a burn off.  I have ten seconds to yell shut door, turn on fan - thankfully we have an extraordinary ability to communicate without words and I gesture wildly as I lose my speech and the contortions take hold of my body.  I am wildly thrashing smashing my limbs about and when I can slamming my hands into my head to attempt to stop the explosion that feels like it's about to emanate from my brain. The movements slow and for half a second it seems okay, but then my eyes widen and my throat muscles stretch and contort.  Bronchial spasms take over my throat, closing my air ways and preventing air access to my brain. Although the oxygen is getting to my body, it is not getting to my head.  I pass out and continue the whistling breathing that indicates my throat has constricted to just a tiny space as though someone is gripping my throat with both hands and squeezing every half second.  Then I come to, frightened and disoriented and find Ma with the nebuliser and asthma meds held under my nose.  I grip her hand tightly and hold onto the nebuliser port with my other hand, wrapping my lips around the top.  I can't use a mask, they are idiotically made of plastic which sets me off. It feels like forever, but it's mere minutes and my breathing is no longer musical but my senses are dulled and I cannot see.  The lack of oxygen to my head has starved my brain and I am slow witted and uncoordinated.  Ma lurches for a towel and the valium and presses the towel to my chest, she finds the water bottle with the smallest opening, to slow the speed of the water down my throat and pours it into my mouth and quickly shoves the valium in.  I clap my hand over my mouth to keep it in.  Take another sip of water and cough, splutter and dribble it over my chest. I am shattered.

At least this time I didn't have a convulsion.  They now incorporate my tongue rolling back into my throat choking me.  It seems like every day I accept a new normal and yet the gaping maw that is the hell I fall into every day is bottomless.  Every time we find a ledge, it dissolves and we have to adapt.   So we do, we just keep adapting.  And I keep dying slowly, because that is what chronic is, acute illness that doesn't abate.  But we went from third gear to fifth really fast and something shifted.  Not just the gear.  In me.  I felt it. I feel like a ticking time bomb.  My low blood content means my blood is thick and throws clots and all the main veins to my heart are now clogged so I cannot get a peripherally inserted central catheter or a port because the veins are clogged, my body is a genius though, it's created a network of spider veins to carry my blood around the clogged parts.

I wish it would work out how to heal me.  I guess it is doing it's best just to keep me alive. Technically I probably shouldn't be.  There's too many things wrong.  It could be sheer willpower. It is the thing that's kept me going for the last fourteen years, arguing with doctors and specialists who kept getting it wrong and keep getting it wrong.  Thankfully there has been a few good ones on the way whose genius I didn't appreciate until much later and whose friendship I treasure.

This last six weeks or so I have been certain that death was near.  Two steps closer than before.  We've been neighbours for a long time, but now it feels like death is invading my space, getting in my way, like a guest who overstayed their welcome and is a little too familiar with your home and your things.  And I'm not ready to go.  There's too much to do.  Too many people to stop this happening to.  A government to be held accountable and specialists that need to be reamed out for their arrogance and misplaced logic.

I authored an article that appeared on the Mamamia website, although they sort of hid it - perhaps it's the paranoid cynic in me, but they ignored my comments and didn't respond to my email querying its placement - buried it in the second page under the wrong date when they sort them chronologically, perhaps Tick and Vector Borne Diseases are just too controversial for them.  Imagine how it feels for me and my community, we're not too fond of the controversy either but we don't get to choose to say oh well we will pretend it doesn't exist.  Didn't matter anyway, it didn't stop my peeps.  It very quickly garnered nearly a thousand likes and shares.  I also edited together a video of Tick and Vector Borne Disease warriors and that too has over a thousand views.  Plus I have shared the stories of my community on my charity page with my dear friend and co-founder Lee, Change for ME, to give insight and support to our members and their healthy loved ones.  I have been filmed for a documentary for students for their assessment piece for Griffith. And I have kept trying to reach out.  But I think I broke myself. Because I have nothing left.  And since death has decided to play dirty, I have to take myself out of the ring.  Concede this round. Take a time out.  Try and heal.  Because if I don't heal now, I can't help anyone later.  And I will be damned if I am one of those people who lives with this illness in our community for so long, fights to get my life back and leaves you all behind.  I won't do it.  I will always fight for us.  It is my calling.  Sick or not.  Let's hope not, but frankly I would settle for half and half.  Be a hell of a lot better than where I am now. Shhh don't tell anyone.  I don't want the universe knowing I'll settle at all.  I want it all the way back.  The whole hog.  The normal life.  Not some faerie tale, just normalcy. 

So in the meantime know this, I have a burning need to fight for you all.  I am not going anywhere. I'm just taking some time to slow down deaths march.  I don't fight dirty and he does. And there's something about being so sick and having had a few real scrapes with death that teaches you the difference between actual dying and feeling deathly. Unfortunately I am in the former category.  So I got to do what my wise friend Kae says, I have to put my oxygen mask on first, stop trying to save everyone else and save myself.   Because when I can save everyone. There will be no stopping me.

Please don't forget about me or think I've abandoned you.  You can always message me through my awareness team  Aid 4 Amara if need be and I will be back eventually - time is weird for us it can feel like forever and yesterday simultaneously, but it will be months if I am disciplined - so just hang in there.  

Also in the mean time my family and friends are fundraising through The Amara Campbell Foundation which you can message if you have any offers of support or help you can give them. They desperately need volunteers, as the beautiful team that put together the last fundraiser are all very busy and or recovering from surgery.

Love to you all.  So much love.
Marzi ♥

The Lost Language

I don't know what the word is for when you only speak one language. But that is me. Except I used to know another. I used to be tactile. To be affectionate. I would talk expressively and often touch the person with whom I was communicating.

My heart has always loved deeply and quickly and recklessly. Or perhaps not recklessly because I have an innate and unquestionable sense of people. My feel for others is so intuitive and natural it is like breathing. Just moments with someone and I can judge their essence and it's compatibility with mine.

For as long as I can remember I have been open, gregarious and extroverted. It is the strangest thing to take someone so open, so tactile, so loving - with networks of friends that overlap and stretch for miles - and shove them into a house and refuse them contact with the outside world. To isolate and alienate them until you almost break them.

I do have a keyboard I touch, but I do not touch you. I have lost my language of affection and I didn't even know I had it. Nor how fluent I was in it. It was probably my first language really. It was before I spoke that I touched. Now it is like a mysterious old ritual, long forgotten and unused. So it has become awkward and necessarily thought out to remember the customs of the language of affectionate interaction. Now I have seizures at the merest contact or even whiff of chemicals in my environment.

It is as though the perfect torture was crafted for someone like me. To give someone so tactile, so loving, so affectionate an affliction that disallows contact. 

That is why I fight. From here. Behind they keyboard. It's also why I give you glimpses of my suffering. Of my torture. So that you might fight with me. It's not enough that the sick have to fight their illness and fight for help. So I provoke you with my suffering. I hope to inspire in you a burning desire to fight for injustice. And to see the courage of my people. My community of warriors.

All the while I type on this keyboard, automatically clicking my fingers on keys, still able to touch type.... just unable to touch you. My heart is heavy with longing for the squishes and bear hugs I used to give out daily. The brushes on somebody's arm in reassurance, the squeeze of the hand, the kiss on the cheek or the light tight cuddle of a child's arms around you as you scoop them up.

Still I fight from here.  Separated from you by the walls. But every now and then there is no hiding it. The weight of the grief in my heart. Because without fail every time I see a group of people on my TV screen I cry. Sometimes it's silent tears streaming down my face, other times I sob. I miss the collective.

You are the collective. You can change everything. Help me fight. Stand up for my people. We can't do it without you.

To see what it looks like when I am exposed to the teeniest minimal contact with the outside world, follow this link:

http://youtu.be/gPbb8DZdY7M

To fight for us. To support our Thunderclap and make it roar, follow this link:

https://www.thunderclap.it/projects/10276-me-cfs-fibro-mcs-change-for-me

Thunderclap ME CFS Fibro MCS Change for Me

I haven't written in a while.  I have been so very ill.  And it makes for creative difficulties and loss of words makes for writing blocks. But I've managed to fall on my head twice in the last 24 hours and perhaps shaken just a few words loose - not necessarily in the appropriate order - but here we go.  

Yesterday after inexplicably getting up to stand on my day bed - a precarious feat of engineering made of stacked pillows and a layer of memory foam - on the fourth day of a gastro bug, when frankly getting out of bed has been a stretch, I then promptly fell straight from my feet to the floor some five feet or so below me, on my head and shoulder, with my ankle squished beneath me.  I managed to dislocate my shoulder, suffer a mild concussion and sprain my ankle.  Then again this morning when I lent over and mysteriously my centre of balance seems to be above shoulder level, so any time I lean further than that the magic of gravity takes over and plunges me forthwith into whatever obstacle lies before me.... in this case my walker, so same part of my head in the walker carry basket and same shoulder into the carpet.  Effing ouch doesn't even come close to it.

Despite seemingly insistent commitment to physical comedy, my body is just not up to such shenanigans.  And in spite of extreme exhaustion from all this funny business I am passionately committed to advocacy and awareness no matter what shape I'm in.

So please, as a reward for my surviving this week, help me by signing up to this Thunderclap (and no old folk it's not a storm as such).  If you have facebook, twitter or tumblr account (or multiple accounts) you can  use all of them to help Change for Me, my charity with co-founder Lee Lee to raise awareness and money to provide practical assistance to those with ME, CFS, Fibro and MCS.

Change for Me is a charitable organisation dedicated to providing information, support and advocacy for Australians affected by neuro-immune illnesses such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Tick Borne Diseases, Multiple Chemical Sensitivity, Dysautonomia and Fibromyalgia. 

These complex, multi-systemic illnesses cause intense suffering, and approximately one quarter of sufferers are house-bound or bed-ridden, cut off from the outside world, and dependent on others for help with basic tasks such as preparing meals, bathing, and mobility. Yet these very ill Australians currently have very little access to basic support services.

Our vision is to help sufferers of these conditions feel supported, connected, informed and visible.  We need your help to make a change.  Please stand with us and fight.  Join this THUNDERCLAP to take over social media simultaneously so we can raise awareness and some money to support these brave warriors.

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.

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.