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.

♥ Love ♥

I have breathed out and released some of the bleakness that has completely overtaken my body in dark shadowy patches of intense sorrow and grief. So I am going to try to breathe in the light.

For there is so much beautiful, dazzling, uncovered treasure in my life. Despite all that ails me I have a network that stretches like a twinkling, glistening, barely visible spider web surrounding the world like a beautiful orb of criss crossing love. Perched upon it are not captured or wounded beings, but beloved connections who together knit the web and use it like a hammock to rest upon when their day gets too weary. We each rely on those connections, feeling the vibrations of love from across the globe even when we are unable to speak.

So to those who have woven the beautiful web which works as a safe place to rest my head and dream of swinging madly about in joyous tumbles, I thank you. To those who I have uncovered in the rubble and ruin of life, in the dark heavy sorrow, whose love has forged connections between me and other broken winged birds, some now angels, I adore you and whisper softly always to your faintly beating heart, “I love you, I love you, I love you”.

To my beloved healthy friends who share dazzling moments past with me, jewels in my memory that shine bright when they're tended to and polished up to focus into perfect clarity, I love you for standing by me, holding our shared jewelled memories like keepsakes, protecting them for me, keeping them in your hearts, ever present so you do not allow me to forget who I was and who I can be.

For my family, some of whom are not blood, but I have chosen to adopt in my closest network of glistening connections to share my resting space, you see both sides of me. You see my grace and strength and joy and you see the depths of my struggle and how I fight so very hard to hang on to my sanity, to war with the bugs that are forever inching closer to a coup in my brain. You keep me fighting, you fuel the fury that allows me to control the bugs and prevent them overtaking my very being. And most importantly, you love me despite the days in which I cannot summon grace, the days in which I lose the battle and the bugs take over, the days in which I am so deep in despair and desolation I drag you down. Your love is what love should be. The love of imperfect perfection, the love without conditions, the forgiving love, the understanding love, the momentarily angry but quickly forgiven love, the true and gritty messy love of truly seeing each other and accepting each other's faults love.  The real love, not the manufactured candy love we've been sold, the messy, ugly, gritty, beautifully tainted, imperfect, perfect love.

And lastly, to those of you who witness my suffering, who do not turn away, who stand by me quietly unwavering, it is you who inspires me. You who patiently waits for the moment when I can properly communicate, you who sees me despite my inability to fully fulfil myself, you who supports and loves me without conditions, you are all the best of me. All the loves of my lives.

Thank you for the love that fuels my fight.

NB please click on the image to be taken to the website of media artist who created this meme quoting Molly Friedenfeld.

To be sure, to be sure

You know I'm turning Japanese, I'm turning Japanese I really think so.... except I'm not. I'm turning Irish. Northern to be specific. Or at least I sound that way.

*Please see note at the bottom before playing these files

But the weirdest thing is. Besides being Australian. Is that it comes and goes. It's called transient Foreign Accent Syndrome. And it's been with me about a week. Even now in my head I sound Irish. I could type how I would speak, but it's strange because it's not how I speak. And it's this strange tug of war in my head. I imagine what it is to be bilingual and whether it's like that. Except of course they're both English languages. Still the idioms (I actually really want to write idiosms there but apparently that's the bastard love child of two words my brain mated – idioms and idiosyncrasy), the linguistics and the rhythms and patterns of speech are different.

So let's just try letting the Irish woman take over.

This mornin when I woke I had focking mad pain all over and me eyelids were so focking 'eavy that I could barely see out them. Then me Ma'am showered me – well she hosed me – an' I musta passed out at least seven times. It's not been a good'un. I have the sorest focking head and to make it all the better, me brain decided I was a bull and the wall was one of those nancy pants bull fighters with their stupid red hankies and I ran full speed at it so hard I think I came close to breaking my focking cheek bone. You can guess who won. Now me 'ead feels like it's wriggled loose off me neck like a bobble head. And me cheek feels like it's still focking corked. It hurts like a mother focker.

Alright I have to stop that now or I will more likely get stuck there and it's so painful for my mouth and jaw to make those noises and shapes so differently to my normal speech patterns (I actually have for the last few years had to speak out loud when I type or I forget what I am saying).

It's torture. And slightly scary. It was funny. But it's not funny any more. Because it's not budging. I can be talking normally and then I drift into this other accent and it gets thicker by the minute. And it sticks for hours. Plus there is no way in any version of reality I could actually do ANY accent with any proficiency without sounding ridiculous. But this is not just passable. It's proper. Except for one dent in the Northern Irish woman.... apparently I should say shite and I just say shit with the accent. Otherwise it's been pretty flawlessly Dubliner or Belfastian apparently, a friend of a friend from Northern Ireland said, and I quote, “Sounds more inner city Dublin or maybe country northern Ireland or even Belfast.”

I guess I'll just leave it at that. I haven't got any great insightful things to say about it. My brain is hurting so intensely just from the circus that it's already coping with. Like I wasn't a bloody weirdy weird pants enough, we had to add another symptom to the mix. And a rare one at that.

I do know one thing. From my brief time studying a creative writing degree before I pushed myself into this very relapse, I was told by several tutors and lecturers that I have a good ear for dialogue. I can easily imagine myself as a character and write in their voice. And I actually dream from all perspectives. I dream as various characters in my dreams through their eyes, man, woman, child.

But this is taking having a good ear to a whole different level. And frankly, despite my love of the Irish people, I would rather like to just be little ole' me.

By the way before I go, I can't leave this unsaid.  Me Ma just asked me if I was putting this on YouTube or booger.  You read that right.  Booger.  You wonder where I get my bloody weirdy weird pants from.

*Note: The audio files I've added are not PG. I swear. More than normal. Although if you haven't spoken to me you wouldn't necessarily know I swear like a sailor. I have temporal lobe damage and no filter. Add in that the Irish are free and expressive with their swear pants, well let's just say I would listen to it through ear phones if tiny humans are nearby.

Note 2: Please do not take the piss out of me. I can't take it right now. I do know most people find this hilarious. And I get it. It's funny. But you must understand it's also slightly terrifying for me. The suspected causes for this type of thing can be a stroke, lesions or tumours. That is obviously the worst of it, there's likely very benign reasons this happening also. But still. I'm too fragile for ribbing at the moment. Save up your witty one liners for when I am back to normal okay? Then we can enjoy them together.

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.

I live in the last chapter

I live in the last chapter, in the aching hollow in my chest where a beating heart used to reside. I live in the winter, in tears of loss, in the heavy notes of a haunting lullaby, in muted greys and the most desolate days. Where I live is not next door to hope or joy. To travel there is not a simple step but an exhausting journey in a rickety boat. And when I return, as I always do, to the cold winter to curl up under the fragile pages of the last chapter, the rain of tears is like a tidal wave, the greys become inky black, the cold is freezing and the aching space in which I sleep is heavy with angst.

Where I live is populated by survivors and fighters. We live on a battle field. We live in the mud, freezing and soaked by rain. We live in pain, we live with illness, we live devoid of tomorrow, because time is transient and the only colour is in memories and slumber. We live in today, in the moment, in the weakness, in the fragility. We see each other. There is no need for words. We tell stupid in jokes. We watch life happen around us and marvel that no one notices the moments. We fight without armour, without weapons. We fight every day and the only allies we have are each other. And when we lose one of our army, we roar and scream uselessly at the world who cannot hear us.

For we live on an island. I know you wondered why you couldn't see us. Why we are invisible. Where we live you might journey to in your life, but either you will return triumphant to the mainland where sunlight is taken for granted and hope imbues your dreams, or you will drown in the murky waters that surround us.

Our island is not a destination for tourists, but not everyone who lives on the mainland is foreign. Some have dual citizenship and visit us to bring the sunlight we need to keep breathing and to find our way. For those of you who visit the last chapter in the winter and chase away the dark with tales of summer and laughter, I thank you for your lightness. I thank you for the bright. I cannot visit you where you are, the trip is too arduous and the contrast when I return steals my breath so completely I am tempted to just stop breathing. But that you visit me at all, with packages of sunlight and love shining in rebellion against the light eating forces of the island.... that you do that, makes me want to breathe more deeply than ever before. To bathe in the light and for a moment, just a moment, pretend I live on the mainland with you in the first chapter of a new story.

To my fellow residents who lie on the battle field beside me, in the last chapter, freezing and unarmed for the battle.... I wish you a journey to the mainland.  Maybe one day you will reside there instead.

To visitors from the mainland, who tote packages of sunshine and love, thank you for bringing me pieces of light.

Between you, the support for Aid 4 Amara keeps inspiring me to breathe more deeply. Your love and light makes me want to keep fighting.  Even though I am without weapons and armour.

Meet Marzi - guest blog post by kp

The following is a post by guest blogger kp.   She of infinite kindness and outrageous generosity has become one of my best friends and a invaluable support throughout the last few years.  In moments when I think I might drown, she is the first to offer a hand up.  You can read kp's smart insightful blog about her life with ME/CFS at Life in the shadows and her crafty and delicious mirror blog about creativity and the beauty of life at Turn your face to the sun

Meet Marzi by kp

Amara Campbell is a vintage-loving bowerbird.  She has a bit of thing for owls.  And trees.  And definite views on fashion. Intelligent, generous and hilarious, she is a born writer.   She's a bright shining bombshell of a woman.  She has a smile that wins you over instantly.  When you look at old photographs of her surrounded by friends you instantly see that she's one of those people who lights up a room.  

She is also very very sick.  She has had ME for more than a decade.  And this illness is doing all it can to dim that inner light of hers.  

I met Marzi a few years ago, not long after I joined facebook.  She was the first person with ME I found on there who I really clicked with.  We were born a couple of months apart, shared a lot of the same interests and got along like old friends right from the word go.  Quite quickly we got chatting about the possibility of starting up a local online support group and in the middle of a conversation about this she disappeared for a minute and came back to let me know she had just set one up!  I was more than a little gobsmacked at her 'just do it' attitude.  And I think that was my first real indication of the person she is. 

That local group has continued to go from strength to strength, and remains one of the most supportive and friendly environments I have come across on facebook.  I attribute that in no small measure to Marzi and the way that she leads.  She has such passion for changing things for people with ME/CFS.   In the midst of everything that she is currently dealing with she recently set up an awareness and advocacy group called 'Change for ME' (in partnership with Lee Lee).   Recently she told me that the reason she pushes her health beyond its limits on this front is because she feels she doesn't have a long time to do it if things continue the way they are. 

In the time that I have known her Marzi's health has gone markedly downhill.  I vividly remember one day getting a message from her asking if she could call me.   She was struggling to cope with one of the first episodes of dystonia (actually ending up at the hospital not long afterward).  It was hard to even understand her as she tried to explain through the tears what was happening.  Her fear and suffering were unmistakable, her distress palpable. 

Since then the dystonia has become more severe, unrelenting and increasingly resistant to treatment.  Before the neurological damage is irreversible she desperately needs to see the specialists who may hold the answers to the mystery in her body that is holding her hostage. 

The warrior woman who is always fighting for others now needs people to form a web of support around her.   
  

The video below was created recently to try and give people a little glimpse into the suffering that Marzi deals with daily.   Of course much of this is felt and not seen, however the dystonia - a movement disorder causing muscles to contract and spasm involuntarily - is blindingly obvious (and incredibly confronting).  

It is heartbreaking to watch a friend suffering like this and I will do everything I can to change things for her.  I believe that anyone who has knowledge of what she is dealing with will also want to do everything in their power to help.

You can find the Aid 4 Amara page with more information - look in the 'about' section at the top of the page - on facebook.  Or if you'd rather avoid that strange land some information can also be found on the Giveforward site (where a page has been set up to allow international donations).

Change for ME Australia

What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?  

What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard.  What would you do?

We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough?  What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them?  That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?

I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.

We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support.  I would have help with cleaning and cooking, with running errands, with doctors appointments.  There would be choices and options everywhere I looked.

Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises.  My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.

Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.

Please watch this video:

And then follow us on Facebook  Change for ME Australia and Twitter Change4MEAu

One day soon.  We will see the positive change that you helped create.  Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.

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.