For the first time this evening, I, Queen of Soup (as you have ordained), was allowed by the nurse to serve the remainder of your dinner through the PEG in you stomach by syringe. She was struggling to squeeze the hundred millilitre syringe with her smaller hands and I was delighted she let me help. Later, I listened to you coaching another nurse, who has a tangibly quirky edge, to follow her dreams of being an artist. You encouraged her to dedicate her time and trust the process. Then - you said holding her gaze, like some kind of Vipassana guru - you are bound to be successful. Not a promise of economic success but of following one’s calling, of living whole heartedly.
The title for today’s entry, you decided, is Human. As you expressed it - this whole experience is about being human. This deeply humbling human experience is the side effect of TBE. A message delivered via tick, and, if we attend to the correlation of rising tick populations and rates of TBE infections with warmer winters, it is a message delivered by extension from the climate crisis. A taste of just one of the multiplicity of ways global heating will effect more and more futures. A crash course in the fragility and resilience of the human body, the essence of care and love, determination and integrity.
In the duration of this diary, you’ve learnt to breathe by yourself again and to swallow - an art you are still remastering. Little by little you are relearning to balance and to move your body more. All these fundamental aspects of living as a human, that if it were not for the tick, we would just have continued taking for granted. The creative and reflective process of writing this diary each day, of editing together, has been a dear companion for us both, from autumn right through to spring, through the darkest and most challenging of winters. Now we look towards what is to come, you will begin interviewing candidates for personal assistance and I will prepare a home for your return. We will continue writing about this adventure in some shape of form as part of the process of Artists in Resonance.
Do you remember that dance we made long ago? Before there was an inkling of the spark to come, back when we were just friends. It was at an Icehotel artist’s party, over twenty years ago, in some kind of hall in Jukkasjärvi. The Dutch artists had been shopping at Thornéus, the reindeer meat shop in Kiruna, and had bought two sets of horns. You and I ended up on the dance floor with these horns held to our heads; me with reindeer and you with moose, we danced and sparred, at times interlocking horns. Like some kind of prophetic performance, a dance of our ancient animal spirits.
Supporting the weight of your hand today, you moved my hand back and forth, exercising the slightly extended range of movement you’ve developed in the past few days. I filmed this dance of our hands and realised it is a kind of progression of the dance of our horns. Our hands and fingers now hold and rock gently, after eighteen years of adventures, of challenges and creativity that have flowed through us, of parenting Esmilda, the greatest gift of all.
POSTSCRIPT
Esmilda had a beautiful dream last night. You were sitting in a chair by the window, together with us in a room at home. When quite suddenly, you went to look at a bird out the window. Pushing your hands down on the armrests of the chair you stood up! Not just on your feet but all the way up onto your toes! Esmilda and I were astonished. Your eyes were twinkling as she told us the dream.
It just so happens, the day we share this journal entry (eight days after the lived experience, to give us time for editing) is the day of the operation to close your stoma. A day of closure, though the journey is far from over. We have received a preliminary date for your hospital discharge, two months from now. Your rehab team has completed their initial mapping of your capacities and has set some ambitious goals to work towards. The aim is to develop your mobility, balance and ease in swallowing incrementally before you come home, to then continue developing with the support of your personal assistants and day visits to rehab.
As this diary now comes to a close, we’d like to thank all of our readers, some three hundred of you, who’ve been reading and listening with us daily for months. Without a doubt, sharing this story with you has made it lighter to carry. You are holding us, we can feel it. Thank you from our hearts for this great gift. We will soon get around to replying to the beautiful messages you’ve sent us in the past months. The plan now (so long as the mounting mound of bureaucracy doesn’t completely overwhelm) is to continue writing biweekly letters in the From the Forest series, delivered on the new and full moon.
Today, on the day after spring equinox, we made our first trip outside together since mid winter. Bathed in ecstatic birdsong, in all that fresh air, we watched Green Woodpeckers and Greater Woodpeckers feeding on the big Oak in the forest island behind the hospital.
I wouldn’t be surprised if after all of this you find a way to teach yourself to fly.
Thank you to everyone who has donated to our Build a House of Dreams for Patrick gofundme, you have absolutely blown us away with an ocean of generosity. All donations, both on and offline have now been added to the gofundme page, pooling an astonishing 409 383 SEK. You are supporting us beyond our wildest dreams, while making them a reality. Thanks to all of you, we can continue building our home and centre for A R T I S T S in R E S O N A N C E this spring, now with the help of a builder. This gives us great hope.
In case you are new to this diary, Letter to my Love with your Brain on Fire can be read as a prelude.
Your comments, likes and shares are so warmly appreciated, even if it takes a while to respond… I promise we will eventually!
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Thank you, Julia, Patrick and Esmilda for sharing this tender diary with us each day that, despite all of the many challenges you have to deal with, has been inspiring and hopeful and truthful. X
Go with all our love Patrick, Julia and Esmilda. Thank you for growing me (and Susan and others I have been reading these entries/talismans to) UP. These have been such wise, bloody, hard fought, joyous, HUMAN words and so more thanks. Today Susan and I are off to the second day of the Ancestral Healing Holotropic Breath week up here in St Helens, Tasmania and I hope we will get some time to share your breath, your inspiration. Not quite as ready as you yet to conspire with the ticks, I am at least through this writing ready for other orders of conspiring.
Again, thanks, love and holding you in our southerly light. And I know it is time for you to go but do not doubt the power of your markings in the world.
xxx