Theda and her red shoes

Life stood still. Everything slowed down. Time moved like it was struggling through mud. It was no longer fluid. It was clunky and faltering. NOOOOOOOOOOOOOOOOOOOO was all I could hear in my head. And then I realised I was screaming it. I was hysterically screaming, “NO, NO, NO, NOOOOOOOOOOOOOOOOOOOO.”

Somehow I had collapsed in the sludge of time, I was stuck in a tangled pile of limbs on the floor. Confused by the fact that my brain could focus so intensely on the dust on the floor while my body shook with shock. Everything became crystal clear around me, and yet the world moved slowly, in chunks of moments. Moments that seemed unconnected. I lost the time between them. I still don't remember much of that day.

It used to be that people asked you where were you when they landed on the moon? Where were you when JFK was shot? Or Martin Luther King? For their contemporaries, us, it is, where were you when the Port Arthur massacre happened? Where were you when the planes hit the towers? Where were you when the Bali bombings happened? Now where where you when flight MH17 was shot down?

For those of us who are gravely ill our questions are different. We know the answers to all of those. But time is sludgy, murky, desperately cold and merged into one huge pool of invariable days, months, years and decades. But ask us where were you when Amberlin Wu died? Where were you when Theda Myint died? Where were you when Tom Hennessy Junior died? And we all immediately know.

I was in this house. Just steps from where I now sit typing. I rose from the computer and I stumbled to the top of the stairs. And then from me escaped this terrible keening noise. And as I sobbed hysterically all I could hear was this distant scream of no. It took a while to realise it was me. I was screaming.

Ma came to me, she flew up the stairs and I couldn't make words except for NO. NO. NO. NO.

Just the night before, or hours really Theda had liked a status update of mine:

Wednesday, 24 July 2013 at 19:28

“Ma and I were just singing in the shower (I was in the shower she was hosing me). Anyway I said to her ladyface you could win a granny. And keep them all on your mantelpieces.

I'm such a tool.”

I remember finding that later and wondering if I had of just made her laugh more, just done something more, maybe I could have gotten her to stay here a little longer. Theda was a soul sister. It is hard to articulate to those who have not suffered greatly every day of their lives for years on end, decades. We become naked, raw nerves. We are stripped of all the things “normal” healthy people assume as part of their identity. Independence, clothing and accessories, grooming, the way they style their house, the car they drive, where they live, their job, their house or unit or apartment, their partner, their social life, their facade. We are stripped down to the bare minimum, our world is so small that all that matters is surviving the next five seconds or minutes.

So we have a magical power. We see you. Behind your facade. We see through the little white lies you tell yourself and the lies you tell the world. The masks and costumes and material things you surround yourself with to create a perception of who you are. We see you. The real you. You cannot hide from us. And we cannot hide from each other.

It means that we become extremely close extremely fast with other gravely ill friends. We say I love you with a freedom and verbosity that would scare most healthy people. But we know the truth. We might die tomorrow and we won't go down without letting you know what we feel, no matter what you feel about it. We want to be right with the world if the inevitable happens sooner rather than later.

Theda and I became fast friends. We barely spoke. We just suffered intensely on the same battle field and knew without a doubt the other would be there should we wish to share something, to talk, to check in. We had a kinship. A love. But she just was that way. She was a huge beating heart. In her darkest moments she was altruistic and selfless. Always she thought of others first, she was innately good. She was not perfect I am certain, we do not want to martyr the dead, but she was pretty damn flawless in my eyes.

I cannot clearly articulate what it is I want to say to you. I guess I want you to remember Theda as more than someone who was sick. Because we are all more than the sum of our parts, even if the majority of our parts seem to be made of infections. Theda was a talented, beautiful, beloved member of our world. Not just for those who were ill, but anyone who she met or even touched online with a few kind words fell in love with her.

Today is Red Shoe Day, the very first annual international day of remembrance in Theda's honour for those lost to Tick and Vector Borne Diseases and other invisible illnesses. Even now Theda is changing the world just by the legacy of love she left behind.

I don't have any red shoes. I don't think Theda would mind. She knows what is in my heart. The day I fell to the floor and lost complete control of my heart, exactly a year ago today, as I wept and keened and screamed on the floor, I felt arms encircling me and a calmness wash over me. I don't know if it was Theda. I like to think it was. Suddenly I knew in my heart that she was free, that she was happy and she was in a much better place. So that is what I choose to believe. I take comfort in the fact she made a choice to leave. I wish selfishly it wasn't so, but for her, I can muster up the love I have to be happy for her freedom from suffering. She deserved it.

Theda my angel, you live in my heart. You live in my soul. You will forever be part of me. And when I sleep tonight I hope that I commune with you in my dreams.

Sweet dreams princess.

*Special thanks to my dear friend Elizabeth D'Angelo who upon the request of another darling angel in my life, Sarah-Louise Feather Jordan created this beautiful piece in remembrance. To support Theda you can order prints, bags, pillows, shirts, cards, and duvet covers with this image here .

All proceeds from the sale of this work will go towards the Theda Myint Fund, to bring much needed care and services to people suffering from invisible illnesses.

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.

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.