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.