Fling your love to the stars

I have been unable to articulate to you what I am feeling. I keep writing it and feeling it is not enough, she is so beautiful my Kae, so angelic that the words I write cannot touch her or do her justice. My heart is weighed down, a clunky stuttering beat as it tries to compute the idea of what it must feel like to her. Perhaps like the tragic heroines of years gone by who walked calmly, almost sleep walking, their elegant nightgowns weighted down, stepping delicately over the slowly gurgling stream into the deeper waters where the current swept them along, their last vision of the stars before the pockets full of river rocks smoothed by the rushing water and tumbling momentum dragged them silently beneath the glassy surface.

She is my Kae, a flightless angel, whose boundless depths of love and wells of beauty of spirit always remind me of my flaws. She would hate that. Admonish me harshly for saying such a thing. For that is not how she sees others. Kae does not see what she does or is as extraordinary. She is unaware that she is so ethereal and otherworldly, she has lived in her skin her whole life, to her it is normal to be just so. But to those of us touched by the glow of being near her, she is a majestic and beloved spirit to be awed.

Kae has been trapped in the dark for a while. Years really, but there's been light let in for long stretches, and then again the shutters slam shut. Now she is taunted and maliciously harassed by pain and an exhaustion so deep and harrowing that only those who have nearly died of exhaustion can come close to understanding, and still you will not understand unless you have experienced it day after day after mind bending, soul destroying day.

Her brain is playing tricks on her, the river calls, waits until she falls into fitful dreams and coos her name in a melodious whisper, the rhythm of water gurgling over rocks mocking her with echoes of her name through the trees. The invitation taking root in her psyche when she is defenceless against it's malignant charm.

Never have I known someone so willing to selflessly step up, to surprise, to support and fight for you and most importantly, to simply be with you. Never have I known a heart so big, a love so dazzling , a well of selflessness that runs so deep there is to my knowledge no end. Kae is what we all wish we could be. She is not perfect but she is what most of us strive for.

My Kae (I say my Kae but she is not just my person, she is many people's person, her heart is that big) is going through the biggest battle of her life and unlike people with recognised illnesses, she is battling an invisible and insidious illness so extraordinarily brilliant in it's trickery that it hides from doctors while it wreaks havoc with your body, your cells, your organs, your limbs, your pain receptors, your perception, your gut, your balance, your spirit, your soul, your heart and everything that is you. How do you fight that which you cannot see and no one except those who fight beside you, a secret army of warriors, even believe it exists, spare a few special doctors who believe in that which cannot be seen or labelled.

So I am asking you to stand with us, the secret army of warriors who fight without armour, without weapons, without the support we have earned, without medals for the bravery and courage in the face of such inescapable horror day after day. We go without acknowledgement and mostly we've all grown used to relying on our battle mates as only they know what it truly feels like, apart from the few carers privvy to witnessing the extraordinary war that we battle every day like clockwork.

No I am begging you. As I have begged of you before to fight for me and others, I am begging you to help me will my darling Kae, my most gorgeous and selfless friend who is so very tired, I am begging you to help me. Will her on. Join a chorus of love and prayers and good vibes and healing meditations and send them into the universe so that she may be surrounded by your love and the light will be forced into her lungs.

Send her all the love and light you would your most beloved. Because my Kae would do it for you without a second thought. She reunited a family who were separated on other sides of the world after years apart and refused to admit she was involved, and yet our very sick and beautiful friend knew it was her and she got to see her grand babies and spend a very special Christmas with them. She forced me to see a doctor and when I had no money she forced me to take a loan from her that she refused to allow me to pay back. She sends random gifts just to amuse herself. She finds beauty in the simple and every day things and has the most creative and instinctive eye for capturing moments most of us either don't notice or take for granted. She sends thank you cards to people who think of her when she can barely lift her head, let alone see the page or muster the energy to force the pen to the page in eloquent coherent sentences. She sponsored an elephant for a group of us, a sick group of friends from all of the globe that she networked together – my twinkling, glistening orb of friends like a spider web around the world – she was the catalyst. She remembers everyone's birthday, anniversaries including the awful ones, the days of those that were lost. She is an angel. She is my angel. She is many people's angel. She is not allowed to be another angel who is has their wings bestowed upon them too soon. We will not allow them to be fitted. She will stay with us because we will fight for her.

We have too much to do. Adventures together with our friends. A commune to run. And although I may never get to have children, neither might Kae, but we will have each other and our most beloved friends and family. My love pours from my heart into this page like she were my child and I were cradling her in my arms soothing her with a lullaby, whispering to her about all the stars in the sky and how they will never ever come close to shining as bright as she does. I could not love her any more.

Please I beg of you help me keep this angel here on earth. Fling your love to the stars and wish it back to her.

NB these two beautiful photos above are Kae's work, to enjoy more of creative work, click on either photo to be taken to her gorgeous blog.

Our dear friend Cusp started this candle vigil to show Kae how much love is in the world for her, please take just a moment click on the photo and light a candle and send some love and light.

Please note, since writing this - just today - I have heard some news that Kae's spirits have lifted a little.  But I also heard today that we lost another Lyme warrior who gained her wings.  So please know, today Kae be okay, tomorrow she may not be and again and so on and so forth.  It is an arduous and awful fight and this is as pressing in this moment as it was the moment before.  Perhaps even more so as the reality hits home that we have lost one of ours and that reality is tangible, touchable and real.  Please help us fight.

♥ 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.

Broken Winged Bird

I woke yesterday morning in the dark. Around me was an ominous and oppressive feeling of grief. It filled my lungs so quickly that I could not even scream out, I was drowning on sorrow.

There was this most awful realisation, one that I avoid contemplating too deeply most days, that the world is beyond the glass and stuck behind it, I am trapped like a wounded bird. My wings are broken and my flock has flown away. The loneliness in my heart aches so deeply I wish I could cradle it and whisper to it that you are not alone and you are loved, but it cannot hear me and it does not feel what my head is attempting to persuade it to believe.

Over the last few months I have experienced some of the hardest times in my life. And the anchors that hold me together, my friends online, my healthy friends, I have mostly been unable to manage connecting with. I am too fragile, too consumed by fighting to exist. Every single moment is a struggle, every breath a weighted heavy sigh, every step a painful uncoordinated dragging limb, every fall into paralysis another inch closer to permanency, every seizure more painful, every bronchial spasm more brain starving and every reaction to chemicals a gamble on anaphalaxys.

I have been fortunate to have medical gurus in my journey. But I am now alone on my travels. Only one left an unhealing festering sore, the doctor whom promised me a life and then told me dispassionately that I should tie up loose ends, write a will and seek out palliative care. The other doctors have been my stewards but obstacles have meant that I am now mostly without them and in this moment, this moment of grave illness, this moment when I am so terrified I cannot breathe, in this moment where my eyes leak as my body mourns the loss of all my safety nets, in this moment of utter vulnerability, I find myself alone.

There is so much to carry, so much to learn and I cannot walk nor can I find answers. My brain is unwilling. This broken winged bird has thrown herself against the glass too many times, breaking more tiny bones and finding only again and again that I cannot will the world to shape itself into how I wish it to be. In this second decade of fighting, failing and picking myself up day after day, I find the dark more and more inviting.

We travelled to the hospital not so long ago, they looked upon me as though I was nothing, they endangered my life, they withheld my medication and they ignored my pleas for help. One of the doctors, just one of the very many who looked upon me was kind, the rest ignored my very obvious, very grave, very dangerous symptoms and history with a cult like investment in the bland paradigm that allows them to behave so inappropriately within a severely deficient system.

How does a broken winged bird stuck behind the glass, drowning in sorrow and grief get help? How does she find hope that has buried itself so deep within her soul that even her eyes look haunted by the loss of it? How does she uncover a reason, even one, to keep fighting? Because she's been on an excavation, picking over the ruins of her life trying to keep the dazzling, bright and shiny moments in focus, but they have all faded to grey and resettled themselves amongst the rubble.

Banality tinged with torture, judgement for her imperfect grace, she cannot carry this load alone. But she is not alone, I wish she could hear me. I wish her heart would feel the messages of love that come from the world, through the glass, even if she can't hear them.

Broken winged bird, I wish I could promise her a better tomorrow, and yet I cannot bring myself to lie to her. So I must let her fall down, drag her broken body into a dark corner and lose herself in grief. I will not let her drown. I will help her excavate the rubble. I will fight for her despite the fact she is me and wants to give up. I won't let her. But I cannot do it alone.

So I ask of you this, please do not let me slip through your fingers. Do not let me give up. Do not turn away from my vulnerable truth. Do not let this system stand. Fight with me, fight for me, fight along side me, help me fight. 

I am not the only one. We are many, the broken winged, flightless birds, stuck behind glass, perched on the rubble and ruin of our lives. We are many who fight and flail gracelessly just to get through the most torturous of days you could ever imagine in our imperfect ways. We only wish to survive this moment and the next. We do not always do things the way you would or the way you think you would. We don't always do what you think we should. We are not you, you are not us, but we are all perfectly imperfect.

Before you judge us, imagine yourself without all the things you've come to take for granted, then imagine you are trapped, you can not turn and walk from this moment or every moment to follow for decades to come, imagine you are so incredibly lonely your eyes leak rivulets of tears that drown you in sorrow, imagine your very existence is so torturous that it seems impossible to be alive and then imagine no one sees you. Imagine yourself alone, terrified, defenceless and gravely wounded. Unless you are a broken winged bird I don't know if you can imagine such desolation, so perhaps just hear me when I say when your life is obliterated and there is no end to the war on your body, and you have no army to protect you, your flock has left you behind, you were delaying them and so they left and now you will find yourself doubting there is any reason to go on.

So please take this pledge with me so that together we might will the universe into bringing about a change for all of my fellow broken winged birds who I gently cradle in my hands as I whisper love and reassurance to their hearts, chase the haunted shadows from their eyes and gently blow hope and laughter into their lungs:

Broken winged bird, I will fight for you. Broken winged bird, I am going to promise you something, one day you'll take flight, you'll soar aloft the beautiful dazzling moments of your life that are yet to come and your heart will beat in time with the collective conscious of loved ones who you will get to touch and love and hold and laugh with. Broken winged bird, even when you hate yourself, hate your life, wonder if you should bother with fighting another day, another moment,  even then know this, you are loved. Now breathe in the light and breathe out the sorrow.

I will be with you tomorrow and all the tomorrows after that. You are not alone.

NB please click on the image to be taken to the website of Theo Aartisma who created this beautiful evocative piece.

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.

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.

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.