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.

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.