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.