Even though our diary is complete and I’m authoring this alone, I don’t want to write about you, so I will continue to write to you. To you and to all our dear friends, family, forest and readers, who continue to keep us afloat in a myriad of ways.

At long last, after eight months, we can now see the light at the end of this hospital-shaped tunnel. You are coming home on the first of June, in just two weeks. Home to a wheelchair accessible house that we are renting just down the road. Home to twenty-four hour care of twelve assistants on rotation, plus myself as coordinator and co-assistant. Home to a house fully furnished and equipped by folks who’ve donated almost all that we need. Home with a whole lot of equipment on loan from the healthcare system - a hospital bed, an electric lift and a hygiene wheelchair. Home to a rehab centre, with a bike for your arms and legs and a machine to practice standing. Home to a place of life as art, where we can continue our work with sonic and somatic practices, to support your recovery and sense of freedom in your altered physicality. Home to a garden, with a strawberry patch and grape vine coming into leaf, with a lilac hedge readying to burst in welcome. Home to a sky light above your bed so you can see the stars again.

Yesterday, you named your new home Au Claire de la Lune. Esmilda and I sang that lullaby to you every day in intensive care, then we hung our friend Lisa Jeannin’s art print with the lyrics on the ceiling, then over the TV that you never use. You’ve been meditating on the meaning, realising that your journey is of the light of the moon.

What has become clear for us both in reflection, is that this is the work of Artists in Resonance. Your illness and recovery are not an aside or a tragedy, they are an integral part of the process. My caring for you, though in moments of overload I do at times forget, is not a deviation from my work as an artist, it is an essential part of my research and of our on-going collaboration.

I’m reminded time and time again throughout this process, of the powerful flow of energy that comes through being in service of others. It’s made me courageous beyond my wild imaginings, shaken off any residual shame or shyness, expanded my capacities to a state of hyper conduction. And though I am not immune to overwhelm, I do tend to find my way back to ease quite quickly now, I can rest in the storm, thanks to the shoulders and ears of dear friends.

In the two months since we last wrote there have been many stories we’ve wanted to share. That painting by Lenke Rothman in your hospital room at the ear, nose and throat ward, where we waited for the operation to close your stoma, that got us through such an intensive thirty six hours. In which I became your sleepless nurse; administering food, coughing machine and NIV mask, in a bed beside you, because this hospital we were visiting wasn’t equipped or staffed to take care of you. This curious and symbolic painting had a mountain with a door, a cylinder form hovering on top and a gold clump underneath. At first I thought it might have been a work by a Sami artist about the mining of a sacred mountain, but discovered Lenke had survived Auschwitz as a teenager and had come to Sweden with the Red Cross in 1945 and spent six years in Swedish hospitals recovering from tuberculosis. We watched the first ten minutes of a documentary in which she said - if you’ve ever received warmth, you can store it inside you. She was so grateful for the warmth of love she had received, that she stored inside her, and for her spirituality that had nothing to do with the church. She said, they could take her clothes, her hair, her possessions but as long as they didn’t annihilate her body, they could not take what was inside her. It was such a powerful message to receive in that moment. The treasure of warmth remains in the stillness of the mountain of your body.

Then there was the heart saga, that started with a skin rash the day before I travelled to Scotland for two weeks of somatic dance teacher training (the ongoing pedagogy of Skinner Releasing Technique). The nurse gave you antihistamine tablets for the rash, but because of your description of the tightness across your chest they called in the doctor on duty, who called in the cardiologist. The cardiologist arrived in the middle of your lunch as I ferried the spoons of soup to your mouth and dropped on the table the suggestion that you had had heart attack. It seemed at first absurd and then alarming. Knowing your heightened sensitivity, I was at first sure the tightness had to do with the superficial rash, I couldn’t see any other symptoms. But the doctors had done blood tests and discovered heightened levels of troponin proteins in your blood, a major indicator of heart attack. So the alarm bells rang, the cardiologist insisted you would have to go to their department overnight, where of course there is no one to move or support you. I thought I’d have to cancel my trip to accompany you as a nurse again. I asked the doctors about your previous levels of l troponin, at first they said there were none, then they found some results from the previous rehab clinic. You’d had just as high levels at the end of January, at the time you had needed to be re-cannulated and put on the ventilator again due to a lung inflammation. In the end, the cardiologist calmed down and came to do an ultrasound of you heart in your hospital room. All was well with your heart. The l troponin levels dropped somewhat and we never did get an explanation as to why they were so high and why this wasn’t followed up in January. So I tripped off to Glasgow for two weeks of dance nourishment with dear friends and you were well all the while. Till a few days after I came back, when you wore that same woollen shirt again, then the rash returned. The heart attack shirt, we nicknamed it and banished it to burn to the bonfire.

In the month since I’ve been home there has been a veritable mountain of bureaucracy. At times I feel slightly terrified by the responsibility that has been carried by a whole institution, that is now shifting to my shoulders and to the arms of your assistants. But having met their listening hearts, their willingness to do work that makes a difference, to make a culture of care that truly supports your recovery, I know you are in good hands. We will be your hands till hopefully yours recover. There are so many blessings in the midst of this struggle. That you have been awarded round the clock care at home, plus a second assistant for five hours a day, is a great relief. That the hospital gave us the grace of two more weeks so that your assistants and I can train alongside nurses, though it did take repeated emotional pleas on my part. That our wonderful contact person at GIL, the cooperative for independent living, has managed all the paperwork in record time. That we could rent this house for the next five months, when the other house we were going to rent got a massive sewerage problem. Now I put my trust in the future that in someway you will be able to stay here for as long as you need. That we can somehow keep renting or buy this place.

This morning I went to repair some stitching on our work Songs of the Mother Tree at Scenkonstmuseet. The room was full of kids when I came in, four year olds or thereabouts visiting on a rainy day, discovering the hollow we prepared for them and the way the strings resonate in the wood. Playing as if they were outside, inside. Once the group had left, I shut the door to work in silence, restitching the reindeer leather seams that had come apart after the intensive play of thousands of kids. It’s already been three years since we installed this work, and though it never got an official opening it is in someway celebrated every day. At the time it seemed like just another piece in what we thought was a long line of our making. Fixing this piece today, knowing that you will likely never weld or sculpt hard materials again, the things you’ve made with your hands have become all the more precious. Our work together continues, just in another form.

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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.

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You asked me today if there is a plan to somehow fill the hole in your head - the dint that remains from when you had ventricular drainage in neurological ICU. You rarely see yourself in the mirror, so it still takes you by surprise. I’ve grown so accustomed to it now that I don’t find it disturbing at all. At times I’ve thought about buying you a small glass eye that would fit into that hole, imagined making a film with your wandering third eye, animating its blinking. It was touching, your moment of vanity, that after all you’ve been through you still care how you look. But I guess any adjustment to this dint would be purely cosmetic, inserting a piece of plastic or botox filler, at a cost we’d have to cover ourselves. I suppose that as you see yourself more often in reflection, you will get used to it too. Perhaps you’ll even come to love this dint as a reminder of your blessing of ongoing life, of still being in a body, in spite of the new challenges. You watched me in the mirror as I trimmed your beard, preparing you for your shower. It’s a little easier now that I’m not skirting around the tracheostomy tube, but still there’s the compress over your stoma to dodge.

I have this sense today of us being hot-wired to life’s meaning, a direct circuit made by improvised means, in a dance of making-do with what we have. The current running through us both. For the past six months we’ve been living on life’s edges, where it can seem the only freedom of choice is to choose the life we have been given. Or is that the only freedom there ever really is - choosing the path that chooses us. I asked you - do you ever feel that this situation is somehow unfair? From time to time, when I’m exhausted, I fall in this trap. Not you. You say - I simply don’t go there. We practice the freedom of reaching towards the life we have been given. To take it and shape it in our hearts, to turn it and turn it over, examine all facets, taste it with our whole being, find poetry even. In this process, this process is shaping us, making us anew. This, I’ve come to realise is the real rebirth.

Today you’re having a holiday, you told me, enjoying a restful weekend and a break from the flow of weekday appointments and physical rehab sessions. You took a break from swallowing this evening and had most of your meal delivered through the tube to the PEG in your stomach. I notice more mobility in your right hand and arm and in both of your legs, quite a few more centimetres. The work you are doing is clearly having effect, the passive movement too, evidenced by a little less stiffness. Your body is responding, returning, remaking itself.

We began reading through the personal letters to you from people wishing to work as your personal assistants. They are all very promising, with wide ranging experiences and passions. We are excited to meet them all and for you to get to choose who you wish to spend your time with. We can see the path opening, now that we have exited the cocoon of winter. The rebirth of spring is underway, your return home is within sight, sometime before the summer arrives. There are so many things to do in preparation, so we’ve decided to make tomorrow the last day of this diary, to finish on the symbolic number of 108 - one thing, no thing, everything - as we continue this journey of rebirth, that is perhaps ongoing for the rest of our lives, till our bodies return to the bigger cycle of rebirth.

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In case you are new to this diary, Letter to my Love with your Brain on Fire can be read as a prelude.

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What is the most important part of a human being? - This was your nurse’s opening question to me as I walked into your room today. She’s such a curious person and really has both of our trust. You were in the midst of the discussion together and your sincere response was - the capacity to see another human. This response reflects so much your experience right now, this is the most essential thing for your survival, to really see and be seen by another human. My response was - the heart. By which I mean to sense one’s own heart and the heart of others. The sun around which the rest of the human orients.

Your nurse and I both noted how alert you are today. There is a sparkle in your eyes. Partly you have been sleeping better and you are feeling more comfortable in your new temporary home. You are more focused on your eating now too. Swallowing seems a fraction less the challenge than it was a few days ago.

Speaking with your doctor today, she explained that you will have to go to another hospital, where there are breathing specialists, where you were first in ICU, to have surgery to close your stoma. It seems it wont close by itself because the edges have turned inwards. This could be due to having had the tracheostomy tube inserted a second time or the way your doctor at the other clinic initially taped your hole after decannulation, in her efforts to pull the sides toward each other. Either way, you will now need surgery under general anaesthetic, so they can cut the edges fresh and stitch you up, so it last long long last the hole in your throat can heal. You will need stay overnight for observation, but at least we can take the chance for you to meet the neurological breathing specialists, who just sent a letter in the post with an appointment for you to have your NIV and coughing machines recalibrated. The dance of complications continues.

From time to time I mentioned to you the faintest outline of what is going on in world. You find it immediately overwhelming, so we stop right there. Really, it is far too overwhelming for any one person to take in. So we all go on living in our bubbles. You and I in the bubble of this story, of gradual healing. I am so grateful, for all its faults, that we have a somewhat functional healthcare system. My heart goes out to everyone dealing with such challenging life situations as we are in, but in the context of war and or extreme poverty. In this regard we are extremely fortunate, but get a sense of the vulnerability, when fleeing is not an option.

After cutting your toenails, massaging your feet, cleaning your nose and ears and scratching your skull, we did our editing and reflecting together. I showed you the picture for the ninety ninth entry, Sphere. You looked a little confused - It looks like my hand, you said. When in fact it was mine, but my hands have also become your hands for now. The hands that scratch your forehead, clean your ears, cut your toenails and pick your nose. On looking up from the computer after a while, I saw you watching me with a smile. You wouldn’t tell me what you were thinking, but I had this sense that you were simply doing that thing. You were really seeing me. This, my dearest friend, is the greatest greatest gift we give to each other, that I sense your heart and you see me.

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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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Today I’ve cried and cried and cried. I cried with Mum, I cried with the cats, I cried with Elke and Cecilia, I cried with Rachel. It’s been another day of catharsis, letting it all out. I was sung to and fed, given a massage and an astrology reading, all of which supported the crying and letting go. I’ll need to drink some salty water to replace all the tears I’ve shed, like we do during lament workshops, to fill back up the inner ocean.

The astrology reading with Rachel was profound. No coincidence with the planetary transits happening right now. Eating nails is my current cosmic diet, but apparently it is all in the interests of healing, not just your’s but my own. There is no shirking the charge of being a warrior right now and all that fire in me is best put to use in advocating for others, as I do for you. My home and public life are undergoing a major shake up and shape shift, the mission is to find the light in the every day, as I attend this school of transformation. Perhaps the main comfort and insight in all of this, is the reminder that I am no victim. That even if the situation at times seems punishing, to both you and I, there is healing in process. This is the path we must walk, or roll in a wheelchair, an unfurling mystery requiring full-hearted engagement.

This morning, you had an appointment with the ear nose and throat specialist to look at your stoma. They were considering stitching you up on the spot but for some reason decided it was too risky. There was some concern about internal bleeding in your throat if they were to do that. Maybe you will need to go to another hospital for surgery. I wish with all my heart that your stoma would just close by itself rather than heal itself open. I wonder what kind of dance is this? That for each step forward there is a backward step and shuffle of complications.

I thought of a funny retort this morning. The next time someone tells me to - look after myself - I will ask them to make a donation. I hear it so very often that if I received a donation for every time someone said it, I’d have a steady income. Even your councillor said it to me yesterday. The irony is, if I didn’t look after myself, there is no way I would still be standing. I get that the message is well intentioned but from my position it also sounds a lot like - look after yourself because we are not going to help you.

This morning, I read you the ad for personal assistants that I’ve shared with our networks today, already a bunch of letters are trickling into my inbox to you from wonderful people wishing to work fir you. Over the next few weeks we will invite them to come and meet you then begin to assemble your team. Here’s the ad:

Personal assistants wanted!

We now welcome expressions of interest to work for and with Patrick on his return home to Järna after a long period of hospitalisation with TBE.

We are looking to gather a dream team of compassionate, curious people, with an interest in food and the natural world. The job entails supporting Patrick with cooking, cleaning, personal hygiene, with wheelchair support and just generally being his hands until his own have a chance to recover.

We anticipate the job beginning in early May and are looking for people willing to work full-time/part-time/casual, for morning/evening/night shifts. Wages will be standard personal assistant rates.

To apply, email a personal letter to Patrick (in Swedish, English or French) and include your CV to julia.adzuki(@)gmail.com

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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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After a talk with a friend this morning, I’m thinking a lot about shame. About societal norms that would have us hide away in times of illness, loss or failure. I’m thinking about the taboos we are breaking in writing this diary from the dark, from the thick of the challenge. With illness we are often expected to go in, to go quiet, to hide under a rock and to emerge with a recovery story, if at all. One of the things I hope this writing achieves is to dispel the shame that either of us might otherwise carry around this illness and the drastic changes to our lives and dreams. I hope to give air to the grief and love and confusion of it all. I have this sense that shame can only live behind closed doors and mouths, in an anaerobic state without oxygen. As soon as it’s shared it changes, invites connection, understanding and compassion. It is happening through this writing, through the daily connections with our readers, who walk with us into the unknown.

Today at the hospital, I got the sense that the honeymoon is over. There was talk about giving you liquid nutrition again as your weight is still going down. There’s been a few mess ups with the nurses not giving you the right quantity of smoothie or with you refusing the six am dose. We also found out the doctor gave you anti-depressive medication last night for the purposes of the side effect of making you drowsy. This feels like a big step backwards, but they insist that the dose is not high enough to have an anti-depressive effects and that it is far less addictive than the sleeping medication you receive. If that’s what you need to sleep through the night then so be it, but news of the liquid nutrition and medication has me feeling quite defeated.

We got a time and date for the big meeting next week, when all the specialists will share with us their mapping of your current capacities and the goals and duration of your rehab. While observing your swallowing today, your speech therapist understood what I witness every meal. You are overcompensating in your swallowing, engaging of far too many muscles and now have formed a habit that needs retraining. They want to do some kind of x-ray video of you swallowing some kind of light sensitive material, to get a different perspective from what the camera in the nose can show.

It has really started to hit me this week, the level of responsibility I’m about to shoulder with your coming home in a couple of months. While we hope to have assistants working with you round the clock, I will be responsible scheduling and for making sure it all works, hopping in if anything goes awry. I talked with your councillor about this briefly today, but realise I’ll need to pay for a proper therapist to have sturdy enough container to support me through these challenges. Until now, my routines and rituals have been enough. Sharing this story has been a form of therapy, to say it out loud, from voice to text, what has happened each day, to reread and co-edit together. But now it’s been six months since you got sick and I’ve been doing everything I can. I need to find more of a sense of my own life in the midst of all this, so that I can go on supporting you. Perhaps I’m getting ready to write a new story, or make art again, I don’t know yet, I need to give myself some time.

Support Artists in Resonance

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!

Leave a comment

When we read you patient journal yesterday, a new word popped up under diagnosis. I noted it down to look up later. Thankfully, we can access your information digitally again, now you are back in the state system, there’s no need to request printouts from every specialist. The word I wrote down was tetraplegia. I’d never seen or heard it before, but guessed it has to do with quadriplegia, with paralysis. Looking it up today, it turns out they are the same thing. Where quadriplegia mixes Latin and Greek in the same word, the European term is all Greek roots in defining four-limbed paralysis. This is your current diagnosis - Tetraplegia from TBE. It is not absolute, you have full sensation and are gradually gaining more movement in your legs, right arm and hand. We hope with time you will completely defy this diagnosis, though no one can say for sure. This is where we are now, in the land of gradual improvement and eventual acceptance, in need of round the clock care of two people.

It’s been a rough day to have a rest from hospital visits. Not such a good idea to be alone in digesting this diagnosis. Right now the most shocking thing is that no medical professional has had a conversation with either of us about this. It is just assumed as implicit. Any idea I have of the window of future possibility has been extracted by persistently brain picking doctors for their previous experience. I’ve come to understand that that window of possibility is so wide and unknown that there really is no frame.

It’s been a lot to take in the past week with the move, so today I am full time on the sobbing job. I’ve found the only thing that helps is needle felting you a dragon. There is some relief to be had by sticking a sharp needle into soft wool thousands and thousands of times, to gradually create form. There is some kind of catharsis. The days together with you are much easier, to be in the moment, to move through the motions of the day together. It’s harder to have these rest days, to face the future, make the bureaucratic steps forward, to face the music that will be our life ahead.

Tetraplegia. The finality of a diagnosis, though it’s not necessarily forever, has hit hard. I called and cried with Marianne, dragged myself out of the yurt to meet Jennica. Was served tea and cake and use of washing machines, warm arms and a depth of soul great enough to listen, to hold and to listen. As I do the grinding work of recalibrating hopes and dreams and expectations. I’m still holding that dream of yours in my heart, of you walking with the dragon flying behind you, of the feeling of lightness. I believe you will get there but know there is a long journey ahead. I’m making this felted dragon to hang above your bed as a reminder for us both.

Most days I look at my list and say to myself - how little can I do today? That’s about how much I can manage. Doing as little as possible every day, enough to keep myself going, to keep showing up for you, making food and feeding you. I’m feeling some hesitation now for the trip I have planned in April. It’s been a long time coming, this teacher training trip to Glasgow, for Ongoing Skinner Releasing. A progression of the moving part of my Moving Writing classes, that have become both an anchor and lightness each week. This practice has also given me tools in moving you, in supporting your physical rehabilitation. I’ve thought many times I’ll have to cancel this trip but have come to understand it will take place just before your homecoming. A timely time to recharge myself, to prepare for the next step. My hesitation is with the reality shifts, of going away and returning, of the unsettlingly hard jolts that are bound to come on both ends. I am planing now how I can organise your food, make portions of soup to freeze, to get friends to bring them to you in defrosted batches every few days. Can we double your soup intake and wean you off the smoothies before then? You are only encouraging me to take this trip, you understand I need a break. You are even prepared to eat hospital food, though I’m not so sure that’s a good idea.

This has been a most difficult entry for me to read to you and for us edit together. To balance the honesty of the challenges, with a language conducive to your ongoing healing. The last thing I want is to box in your body to believing a finality of this diagnosis. This is a temporary condition. All doors are wide open for miracles. My practice is in opening my heart to whatever eventuates, wishing for your healing without expectation.

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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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We met with your doctor and counsellor today and talked through your experience with TBE so far. They were incredibly welcoming, making clear that we are both part of your rehab team. The hierarchy does seems softer here, less stifling at least.

Looking through my photos this morning, I stumbled on one of you sitting in a tree on our last kayak trip. It’s strange how that trip felt like a last trip, just like our last trip to France felt like our last family holiday. At the time, I explained it to myself that it had to do with Esmilda growing up and leaving home to study. There was no other clue on the horizon of what was to come. Now I feel determined that there will be more trips all together in the future, that we will find a way to have adventures again, regardless of how much support you need.

This evening I watched as your nurse did the daily movement training with you. It’s a new routine, first thing every morning and last thing every night, a nurse flexes and stretches all of your joints, massages and moisturises your hands and feet. We are both so astonished by this level of care and competence. You asked the nurse if she had special training, she said it’s just a normal part of working in this place. Everyone here learns how to do this, they help all their patients who have reduced movement capacity to move at least two times a day. She was a little surprised by your limited flexibility but was gentle to not hurt you.

Thinking back now, I wonder what if… what if you had had this kind of care over the past five months? Would you be less stiff in your joints? Aside from a few sessions with the physio and work therapist each week and the occasional massage from a generous nurse, I’ve been the only one consequently moving you on a daily basis. On some days I had a rest you were barely moved at all, despite our many requests. I feel angry thinking of it now, it seems nothing short of negligent, to host paralysed people in a clinic and not move them thoroughly at least two times a day. I don’t mean a kind of instrumental moving, to dress, undress and lift in and out of bed, but moving for moving sake, to limber up all your articulations. I am concerned about the consequences of your stiffened joints, not only now but in the future, when movement does return. Will you be able to regain flexibility?

Strangely, this is the first time you or I make the connection between the words hospital and hospitality, as they are most often worlds apart in reality, but here they do seem to meet. You are surprised by the service and wonder sometimes, is this a hotel or a hospital? The previous clinic was situated in what used to be an old people’s home, which surely contributed to the feeling of stuck-ness and fear of never getting out alive. Here the frame is clearly temporary, which that is a relief. We put up a few pictures but not too many, you will not be here for too long. Two months at most.

We spoke a bit about your hopes for the process here. The main one is to regain an ease of swallowing. But still, your stoma hasn’t healed, or rather, it is healing open. The doctor has now changed the routine with the coughing machine, to use it only when necessary, to limit the air pressure throughout the day that may be contributing keeping your stoma open. At night the NIV gives continuous air pressure, but that is not negotiable, you need the breathing support. An ear, nose and throat specialist will take a look in the coming days, it may well be that you need some stitches to encourage closure.

Support Artists in Resonance

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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I cooked up a storm this morning. Two new soups for the next few days and a new smoothie recipe with roasted sweet potato instead of banana. I skipped the cocoa, added a little cinnamon and cashew nut butter instead almond butter. Another cake that you won’t taste, but at least it will make your stomach happy.

The treehouse was inhabited again last night by Esmilda and Elliot. We celebrated him with a pre-pre-birthday dinner and tiramisu for dessert, the rest of which we brought to have with you for afternoon tea. The expression on your face when you tasted half a teaspoon of tiramisu was absolutely priceless. Your eyes flew open in surprise as fireworks were happening in your mouth. The combo of coffee, mascarpone, and Frangelico blew your mind. Imagine, that you are now satisfied by half a teaspoon of cake, when previously you’d have had a large serve and lined up for seconds.

We had a beautiful walk to the sea on the way to visit you, watching the pollinating process as we; flowers, bees and humans, all soaked in the sun.

Elliot‘s parents Kitty and Simon came to pick up the kids and visit you. It was such a sweet and special visit. They had been in this exact hospital seventeen years ago, birthing the miraculous, surviving three turns of umbilical cord around the neck, making a record for this hospital and narrowly surviving death. It was a moving moment to share, as Kitty said - talk about rebirth. This is the place.

I have a sense today of the flowering of our love, that we are entering the actual blooming now. How surprising our love is in its many layers and layers of petals, like the ruffled crimson tulips I brought you today. To realise now that all these years the love we’ve shared has only been the budding. I used fear the time of you getting older, being much older than me, I used to fear your becoming incapacitated. But this was not at all what I anticipated. Imagine, I was fearing the blooming of a deeper love.

Support Artists in Resonance

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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While emptying the compost this morning, right at the bottom of the bucket I found the pumpkin seeds from last week’s soup. The seeds had begun sprouting, so I tucked one shooting seed in the pot indoors, to the side of the amaryllis bulb now in leaf. It’s a bit early to plant pumpkins just yet, but why not let this one grow.

When I came to you today, there were stories of other seeds that had slipped through the mixer in your smoothie and lodged themselves in them entrance to the PEG tube in your stomach. When the nurses had tried to deliver your smoothie by syringe, the stray linseeds got so stuck that they needed to cut off the tube install a new attachment. I felt terribly guilty to not have mixed your smoothie thoroughly enough, I’d made it in a rush. Thank goodness for your sturdy problem-solving nurse who was not phased at all. I’ll start soaking the seeds and nuts overnight from now on, so they are less likely to slip through the mixer whole. Hopefully this will solve the trouble.

We got a bit behind with your food today and I became worried about not making it to your calorie count, considering that your weight has been going down. I was met by incredibly diligent nurses who completely rescheduled your food routine to portion it out so it would work better for you, and then the good news came. They had weighed you and you’d started putting on weight! We’re on the upward curve now and things can only get better. With that wonderful news the tears of my morning evaporated. We have you close again to sixty kilos, ten kilos less than when you first came to hospital, though much of that was muscle that wasted away. We just need to make sure you have enough energy reserves for the healing process to continue.

We received next week’s schedule today and a copy for me too. It’s an incredibly detailed plan with a generous resting time scheduled after each meal. This feels like a dream. It’s something we’ve been asking and wishing for for months now - a structure that can support your recovery process, that can give you relief from brain fatigue. The generosity of spirit in this place is palpable. It’s still a lot of work for you with settling in, with getting to know so many new nurses and for them to get to know you but I do feel we have the best conditions for your healing here.

Support Artists in Resonance

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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You are not solid
light moves through
your porous pores
Not even your bones 
are completely dense
All your tissues 
are permeable 
Light body birdsong
ripples wash through
Waves crash waking 
winter water from stillness
An agitation of life 
calling to further life

The intensely white spring sun moved through us in Moving Writing today. I played The Spheres by Ola Gjeilo and there was this wildly expansive moment. Everybody in the room grew, light filling all the winter emptied reserves. We talked after class about this expansion, about the surprise of it, remembering that we have this capacity but how easily we contract into certain shapes, forgetting how close-by change can be when we find an alignment of trust.

The practice of finding an alignment of trust best describes my experience with somatic movement, with Skinner Releasing. Trust has a certain physicality; open in the front, back expanding backwards, skull floating. A multi-directional trust in something greater than themselves. Trust that we are held by earth, by the solar system, in a dance of gravitational pull.

I’m in the swing of things now with our life situation, I accept it. Though I know I might fall in a hole of existential angst tomorrow, I will find my way out again. Perhaps there’s something about meeting a challenge, that I like to meet a challenge. I have this fierce determination that we will continue to live wonder filled lives, that we will welcome joy and somehow continue our work. This new situation will all be part of it.

There is a tenderness between us. It has always been there, but now that tenderness is the realm in which we live together. A whole lot of friction has fallen away. We live in the tenderness of mutual appreciation, rising to the challenge to make this work as best as possible.

With the new move to the brain injury rehab, I’m reflecting back on who and how I was when we were last in the hospital environment, when you were intensive care. It was an extended moment of crisis, a time when everything was turned on its head. When we didn’t know if you would make it. But that’s not exactly true, I felt in my heart that you would make it, but you were so close to death. I’ve gotten a hell of a lot more grounded since then, unshakable most of the time, a sea of tears the rest. I feel like we are both more embodied and present than ever before. There’s been some shedding, perhaps a shedding of possibilities. In some ways we’ve lost our freedom of choice and movement, and in some ways that is freedom unto itself. To simply be in the process, to be fully present. There is no escape, no running from this challenge.

Support Artists in Resonance

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!

Leave a comment

Outside your new window on the third floor, I saw a pair of European Magpies building a nest down in the courtyard. I wish there was a way to get your head high enough to see them. It’s beautiful sign in any case.

We’ve had such a huge day today. So filled with new impressions, so many things to explain, different sounds and much more light. You traveled in a moving vehicle for the first time in five months. The sounds from the road were overwhelming and I regretted forgetting to leave you the noise cancelling earplugs.

I’ve had some calls with your old clinic through the day, as they forgot to pack the chin strap for your NIV mask, so I need to pick it up tomorrow. I’ve asked them if we could borrow an extension lead for your alarm but no can do. They don’t trust that we will return it, so you will have to sleep with your bed turned to the wall till I can buy the right cable.

There’s a kitchen here where I can warm your food myself. The pillows are softer to your dislike but the softer paper towels are to your approval. The nurses all wear circular plastic aprons, not that they round, but that they are sorted separately after use to be melted down and remade. We’ve met your new speech therapist who grew up in France and has a playful spirit like you. I think the two of you will have a great time together. There’s a lot more specialists here as it’s connected to the hospital, so they will check your mouth and teeth, your muscle tension issues, and your stoma that still has not closed itself.

It’s a lot of work for you right now to explain to every new person how you need for them to move you, the things that do and don’t work, how to position you comfortably in bed. It will take time to settle in, time for them to get to know your body. One stunning difference here is that you no longer have screens behind you, no more cables attached to your body, no more constant observation of your pulse and blood oxygen saturation. Just a check up of your vitals each morning and evening. The only machines now are for periodic inhalations, cough assistance, and the NIV mask for sleeping. We have taken clear step away from ICU and intensive adjacent care, you are now quite firmly in rehab.

The nurses have been asking me many questions about the machines, the coughing machine and the NIV mask, as each model is a bit different. Unfortunately I know nothing about them, that knowledge has not been shared with me, which is entirely ridiculous, considering that in just eight or so weeks when you return home, I will be responsible for them and for supporting a whole team of staff to use them. At least in this place there is a spirit of inclusion. I trust that here they will be willing to teach me all I need to know in caring for you at home.

Support Artists in Resonance

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!

Leave a comment

I drank a rainbow for breakfast. After filling my glass with water, to wash down the remains of sea buckthorn juice, I happened to place the glass right in a spot that caught a ray of rainbow from the sunlit crystal in the window. The foggy liquid filled with light and I drank it. Later in the morning, while I was out running errands, your doctor called. I’d just spotted the very first flower of spring in a courtyard when she told me the news - as early as tomorrow you will move to the brain injury rehab, a section of the hospital in the north of the city, a place for physical rehabilitation.

A flurry of excitement has overcome me. I’m so filled with the light and the warmth of this day, with the good news and springing flowers. It’s a sudden shake up of plans and I’ve rescheduled my week to drive to you this evening and pack the rest of your room, to help you prepare for the move. Tomorrow morning I’ll drive to the new clinic to meet you there as you arrive, so we can meet the new staff, new routine and your new temporary home together. I’ll bring your food and smoothies and help you settle in.

The full moon yesterday night was so powerful, rising between the trees right where I greeted the rising sun this morning. This evening, you can hardly believe your room is now emptied of your personal things. I cleaned off all the whiteboards, leaving a few of Esmilda’s fish for the next inhabitant. We’ve donated the bird feeder and left the big whiteboard and silent clock in the hope they will make some other patients lives a little lighter. Then I gave you a last foot massage in this room. My goodness, the hours I have massaged you in this room over the past five months. I said my goodbyes to the nurses and the big oak tree out the front.

You are busy thinking of details of things you might need to fix for tomorrow and I remind you that you don’t have to prepare anything, that everyone around you will take care of everything for you. It’s still hard for you to let go, to live your life as a princess, that your presence and your breathing are the blessing you have to offer. The hospital transport will collect you at eight thirty in the morning and I’ll be right there at the new place to meet you an hour later. We are so excited, everybody is raving about this other place, about how incredibly wonderful it is, so our hopes and spirits are flying.

Support Artists in Resonance

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!

Leave a comment

Your doctor called me this afternoon right after you and I spoke, just six minutes after the full full moon, while the lunar eclipse was happening on the other side of earth. She is sending the referral to the brain injury rehab a day earlier than anticipated. I’m so excited I want to call you back straight away, but I know you’re about to go into your physio session to try the Easy Stand again - a kind of mechanical chair you get strapped into, that with a lever can bring you to standing. This time you will ask the physiotherapist to take some photos.

It was a turbulent night you said, and I’m not entirely surprised. While I was feeding you your evening meal yesterday, your pulse kept spiking above one hundred and fifteen, enough to set off the alarm again and again. Like a baby, you need your afternoon nap, otherwise overwhelm and stress becomes the evening. With the lack of routines of activities at this clinic, some days you are not given a chance to rest.

We did find one new trick while you were eating - I lay my hand on your shoulder and massaged your muscles to encourage them to relax as you swallowed. An attempt to remind your face and shoulders not tense up with each gulp. This process of relearning something consciously that you otherwise could do without thought right from birth is a challenge. Now this excessive tension when swallowing has become a habit, so there’s a lot of undoing to do as you regain confidence and ease in your ability to swallow.

Early this morning, I woke in a sweat. I thought I had a fever or a hot flash, but then realised it was the temperature in the yurt. I’d turned it into a sauna by putting an extra log on the fire before going to sleep, a habit of the deep cold of winter, but the outside temperature had warmed through the night. The day is a bright and warm, ten degrees celsius and I’m thinking about dismantling our collapsed dome, to clear my favourite sunny sitting spot.

The melting snow has now revealed the top of the tree that broke off in a storm, which fortunately flew ten metres to the opposite side of the yurt. Had it flown the other way the yurt may have partially collapsed, but it didn’t. We have dodged some near misses in these past dramatic months but the trees and wind have kept me safe. Your doctor will keep me updated as soon as there is news of your move. There is hope on the horizon, sun and moon and returning home soon.

Support Artists in Resonance

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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The icy snow this morning reminds me of that rock solid wedding cake icing of the eighties, the cake of the earth is entirely encased. I’ve been recalibrating your smoothie recipe to deliver seven hundred calories per five hundred millilitres and have made two different versions. Chocolate banana and green power, with wheatgrass powder, which will also need spinach and avocado added later to keep it fresh. I’ve made four doses, plenty enough to make it to your calorie count on my days off. You are also being given what I’ve nicknamed ‘‘medical mayonnaise’’ in order to curb your weight loss - a pinkish emulsion of sunflower and canola oil. This makes you feel sick unless your stomach is properly lined with food first, but hopefully you will put on some weight soon so we can take that off the menu.

These smoothies are your cake that you wont even taste. The nurses say some people can taste the food ingested via their PEG, but after five and a half months of bag food I’m so glad you don’t. The smell of that stuff makes me want to vomit and when it gets on your clothes it sticks like glue. We heard a funny story today, that at this clinic some time ago there was a doctor who encouraged patients with a PEG to chew their food first then spit it out, before mixing it in a blender and injecting it through the tube in their stomach. The idea being that chewing gets the digestive juices flowing, though the approach was later abandoned as people found it far too abject.

We are so grateful to have our most favourite doctor again today. She is happy with your progress and will send a referral to the brain injury rehab in the coming days. It could even happen that you move this week! The excitement is bubbling in both of us, to imagine moving from here after what feels like an eternity. Now you have overcome the biggest hurdle - regaining your breathing autonomy, with a little non-invasive support at night from the NIV.

Other wonderful news today is that your doctor has been gradually phasing out gabapentin, for neuropathic pain. You are down from three to one dose a day and on Thursday you will take the very last one. You’ve not been experiencing any additional pain and I am so relieved that we can be finished with the unwanted side effects of memory loss. Your doctor even admitted she wasn’t aware of that side effect until after I had asked questions about it. This was a discretely miraculous moment, to hear a doctor admitting to their learning process, that they do not know all. Of course no one does, nor should they be expected to, but so few doctors dare to drop the facade and be honest about this.

From Thursday onward, your only medication, apart from salts and oils, will be melatonin and a nightly dose of imovane to help you sleep. Once you get home we can phase that out too, so you can live your own rhythm again, pharmaceutically free. I’ve packed the car with all your things you don’t need at the clinic as we prepare for your move with the excitement of going on holidays. There will be a lot of new things to adjust to, it wont be without challenges, but it will bring you one step closer to home and this is truly cause for celebration.

Support Artists in Resonance

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!

Leave a comment

You woke from your nap as I arrived today, from a dream of us both in the studio. It was a new studio with a beautiful floor, perhaps our House of Dreams? You were watching me make a large dragon from fractal parts of different sizes, a blue dragon from a light material. Then you were walking down the stairs and I pointed to something, you turned around and saw the dragon flying behind you. You had a feeling lightness.

I brought you jonquils today. Lisa mentioned it was Saint David’s Day, the patron of Wales, who’s symbols are daffodils and red dragons. She thought of you, considering that you are in wooden dragon in Chinese astrology. Although there were not daffodils to be found today, there you were, meeting the dragon before the jonquils arrived.

Last night was a success! The syringe delivery of your smoothie caused no stomach cramps or bloating. All this time, we thought the slow speed of food delivery was crucial to minimise stomach trouble, but high speed delivery of homemade smoothie caused no problem at all. I suspect the whey powder was the problem, perhaps other suspect ingredients too, not to mention the lack of love in the highly processed bag food. After five and a half months, this is the first day that you only ingest homemade food, via mouth and PEG. This evening when you felt exhausted halfway through dinner, I suggested we ask your nurse to feed the rest of your soup via syringe through the tube, now that we know this is possible. It worked so well and brought you such relief. How can it have taken so long to figure this out?

You asked me to pick your nose and clean your ears today, which I did very thoroughly with cotton buds and paper towel. You had a phenomenal collection of stored snot and wax buildup. Fortunately I find this stuff far more fascinating than revolting. You even let me trim your ear hair and cut back your bushy eyebrows so they are no longer in your line vision.

These days together are infinitely more easy for you, to be tended to around the clock in good company and have relaxed support in feeding you. When I am here I am all yours, when I am home I am preparing things for you. I work in service of my wooden dragon.

Support Artists in Resonance

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!

Leave a comment

This morning I invented a smoothie recipe for you with one thousand and one calories to six hundred millilitres. The inspiration came in a dream and I had all the ingredients in the cupboard. Hemp seeds and oat milk, tahini and walnuts, cocoa and maca powder, dates, chia and linseed, banana and bee pollen and a bit of honey. You are back on track with your food today; breakfast, lunch and dinner. Tonight the nurse will feed you this smoothie instead of bag food, via a syringe to the PEG in your stomach.

You’ve had an itchy cheek today and have had me scratch it multiple times. I asked you if you missed touching your face, you said your hands feel staved for touch. You relish every massage and every movement I give you. We manage to bring your fingertips to your face only after I’ve stretched and limbered up your elbow many times. In the months at this clinic, the flexibility of your joints has dramatically decreased. I’m concerned about your left foot, that can no longer make a right angle to your leg, as the staff have not managed to keep a routine with your orthopaedic supports. It happens perhaps once a week rather than twice a day. I’m concerned your shortening tendons will make it much harder for you to eventually stand and walk again. All these daily routines are so essential to increasing your chances of ease of movement in the future.

The skin to skin touch you receive is with me, and occasionally Esmilda and visiting friends. All other touch comes coated in latex. I wonder if the hygiene gains outweigh the what is lost with the lack of skin to skin contact. Perhaps an essential part of care is missed.

Each day the rubbish bags in your room fill to the brim, with plastic aprons and latex gloves. Each time a nurse or doctor enters your room, they don an apron and gloves, then throw them in the bin when they leave. At least fifty litres of compacted garbage per day. You’ve been here for one hundred and forty one days now, so that makes seven cubic metres, a whole rubbish truck full.

It’s two months now since you’ve been outside, since before the snow came. You are so sensitive to shifts in temperature so we’ve not yet dared. We wait for more warmth in the air. Till then the plastic plants indoors are taunting and eyes reach for the garden through glass.

Support Artists in Resonance

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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Welcome to Lay it on the Line, a year-long letter exchange between seven writers: Julia Adzuki, Stacy Boone, Yasmin Chopin, Donna Fisher, Bee Lilyjones, Amanda C Sandos and Julie Snider.

Throughout 2026, we’re exploring what it means to rethink our relationship with the natural world. Each month, one of us writes an open letter responding to the previous writer and addressing the next, creating a circular conversation about art, ecology, philosophy and place.

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Dear Stacy,

I’ve been lying on the floor of the yurt for most of the past two days. I took a break from hospital visits to take care of other things, but now I have time the motivation has left me. So I write to you instead, from the surrender of rest.

I wonder, do you think plants struggle with going to seed? Might they fight the phase of decomposition? Or do you suppose they go gracefully, effortlessly yielding to death, rest and renewal?

Despite being a freelance artist, living off-grid in the forest, I find it a struggle to extract myself from extractivist culture. It really has its claws in. This pull to be productive, to resist the urge to rest until, by collapse or illness, there is no choice. This very human predicament seems to have the scent of the market internalised. A heavy handed work ethic that is hard to shake, like cows lining up on the clock at the dairy, even when it’s a surefire road to the growing epidemic of individual and ecological burnout.

An undercurrent in all of this is the undeniable pulse of life to further life, to survive and be survived. This winter, my efforts have been paired back to survival; the wood and water carrying, fire making, snow shovelling, caring for Patrick and fundraising. Writing and running have become essential tools for mental health. Local and far away community has held me in a loving web that makes all of this make sense, in the ebb and flow of the pulse. Still at times, I’ve been toeing the line of doing far too much and sleeping far too little, contrary to winter’s suggestion.

I wonder, how is your relation to rest? With the endless lists of things to do living on the homestead, do you find you can follow the flow of the natural world? Or does market pressure still catch you in its talons?

What strikes me as the most significant difference between extractivist and cyclical culture, is the broken link of rest and renewal. Skipping this step makes the market untenable for life, for cyclic beings, humans included, as part of a cyclical living earth. It imposes an endless reaping and raping of supposedly infinite resources. In the life of a plant, of let’s say a pumpkin (the soup I am cooking tonight), seeds ripen in the fruit and the rest of the plant decomposes, becoming life giving compost. In this case, I collect the seeds and let them rest till the soil is warm enough to plant. Or, they might rest in the ground and sprout in the spring, if the conditions were right and if they were not all eaten by mice (that ate their fair share of potatoes in our cellar).

My point is this - resisting arrest might be a crime in a court of law, but resisting a rest is surely against the laws of the natural world.

I’ve done a lot of unwork over the years in an attempt to shake this off, but can any being be truly free from this system? It’s ghosts and algorithms are getting all the more hungry, this beast knows only growth; snatching time and prodding us on, patenting life and extracting profit in ever more cunning ways. Getting away with it too, even when we know clear as day the damage it is causing. So how the hell can we let this beast go to seed? To not propagate its spore, but instead let it all decompose in a hot compost that truly transforms. How can we turn it into nourishment for life? To connect it again with the missing link of rest and renewal.

What if each of us humans is carrying the very seeds of this beast? What if we stopped feeding it? If we all divested our attention and funds away from billionaires and multinational corporations. What if we successfully composted the greed and power that has persistently cut this sacred loop. Imagine our communities growing so strong that they can resist being clear-felled by the corporate dictates of individualism?

Now I am full swing into my rant… the spring sun and full moon have found me and spur me on!

When I lay in the dark cave of the yurt, I feel like a seed in the ground, waiting. Waiting but not ready to burst into action yet. Just resting, giving into the pause. Perhaps it’s the most natural thing we can do. To rest like the seed, with all potential embodied in stillness. Waiting for the moment, the season, for just enough of the right conditions to burst, but not waiting so long that we rot.

As the snow now softens, I can almost feel my seed coat swell and crack open…

I think the greatest change we can make in our relationship with the natural world, is to shift our culture to a cyclical one. Moving to the forest, this was one of my main motivations. I’m thinking a lot these days about how to sustain our lives and the life of our community, more-than-humans included. I’m thinking a lot about rest and seeds, about the correlation between our cultural lack of rest and relative lack of seed saving. I wonder, do you save your own seeds? Are you planning your garden now or perhaps even beginning to propagate seeds indoors?

Till now, I’ve been a fairly lousy seed saver. My collection of envelopes and various improvised pockets of seeds are barely labelled. They are more likely to note the person I received the plant or seeds from than any great detail of the actual species. Though I have an intention to dive deeper into the process of saving seeds this year, inspired by and learning from my friend and collaborator . Our organisation, ARTISTS in RESONANCE, is now planning to start a community seed bank. We plan to bank not only seeds but also nervous system health, by bringing somatic movement and seed saving practices together. A relational art and life project, joining the dots between the rest and renewal of our bodies and food systems.

I’m sensing the emergence of a radicle and plumule - root and shoot are growing…

I’ve only recently learnt just how far off Sweden is from being self-sufficient in seed stock. According to the World Bank, seeds to the value of 114 098 000 USD were imported into Sweden in 2023 alone. This says a lot about how extremely fragile our food systems are. All it would take is the inability to import seeds and food for one season and much of the country would starve. The other factor with importing seeds, is that they are not locally adapted.

As if this wasn’t enough, at the moment, under the smokescreen of wars and scandals, the EU parliament is preparing to pass new laws to deregulate genetically modified organisms. A significant decision that will affect biodiversity, human health and future food sovereignty. The total bollocks claim is that genetically modified organisms, also known as new genomic techniques (GMOs/NGTs), will in some way ensure food security. The primary agenda of GMO companies and lobbyists however, by virtue of them being multinational corporations, is to patent seeds, make money and serve their shareholders. Making farmers (and consumers) contractually obligated to continue buying seeds from these companies, as saving these seeds is illegal (and they are hybrids, so saved seeds do not grow the same). Genetically modified plants can also cross pollinate with non-GMO plants, so without proper regulation we are walking blindly into a circus of Frankenseeds, obliterating a whole lot of biodiversity in the process. (There is a petition if you wish to sign).

Perhaps I’m ready to emerge above the soil surface…

In ancient cultures seeds were used as currency; Aztecs and Mayans used cacao beans, in Japan the Döjima Rice Exchange is considered a forerunner to the modern banking system. Perhaps seeds will re-emerge as currency again in the future. Seed banks are essential for food security and future cultural stability. The question is who controls them, and in what interest. In times of war, seed banks are often targets, in times of ecological instability they are more necessary than ever. ARTISTS in RESONANCE wants to make a Seed Sanctuary, to reimagine the currency of seeds with the interests of community, of life furthering life without greed. To cultivate a genetic diversity of seeds, of plants that are adapted to place and particular conditions, that can survive drier summers, or sudden flooding. Without the interference of Big Ag business.

A very first flower on this early spring day…

Our writing group feels a lot like seed sharing, feeding us all with a genetic diversity of ideas and experiences that not only enrich but regenerate. I had no clue when we first came together to write one year ago just how much life was about to change. You’ve all been such an enormous support to Patrick and I, in his slow recovery from TBE. Although we’ve never even met face to face via screens, the strength of these connections through the words we share is an absolute treasure.

I am wishing you a most abundant garden and looking forward to follow the threads of your thoughts in the next letter exchange.

With love

Julia

Join the discussion! Do you save seeds or have thoughts to share about rest and renewal? Are you grappling with the talons of extractivism or found a way to slip out of its grip? Are you currently rethinking your relationship with the natural world? We’d love to hear from you!

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Friends and family from the south of Europe have been sending us messages of spring sunshine, tales of twenty degrees celsius days. Françoise spotted two V shaped flocks of swans migrating northward towards us. Delphine sent photos of jonquils unfurling bright yellow flags.

This morning I saw grass growing in the field where the snow and melted. Imagine, the grass had been growing under the snow through the prisms of light. Soon swans and other migratory birds will be landing in these fields. The cacophony of spring is coming! Soon you will come home!

You say it seems hard to believe that you will be free of this hospital system, hard to to imagine having a life of free choice again. You say it seems like a dream.

Foot massage brought you so much relief after my days away. But once again the doctor warned us, your weight is still going down. She made a new offer today in attempt to encourage you to take in more food, she said that they can feed you some of the food I make, directly through the tube in your stomach. We had no idea this was even an option. What a thrilling thought! We could be rid of this highly processed bag food way sooner that expected, replace it entirely with nutritious homemade organic food.

I saw your stoma today after you’d had a shower. It looks different this time, a little folded over in the doctors efforts to bring the sides together quickly, but it seems to be healing well. I wonder if you could spray water from your blowhole, like a human whale? Your stoma is another little mouth, I could almost imagine it beginning to speak.

Support Artists in Resonance

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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The right headlight bulb on my car blew a few weeks ago and today I fixed it, all by myself. Such a very small task but I feel so proud. It’s one of those jobs I would just have handed over to you, in the before times, that I now need to learn to do myself.

You had your first night without the tracheostomy tube last night and all went well. The doctor had taped you so effectively, so your stoma does not leak any air at all. After all of our struggles last time when you couldn’t speak for the air slipping out of the compress, without someone holding their fingers to your throat, this seems quite miraculous.

Rolf and I took the first load of rubbish from the studio to the tip today. It was a little ritual of relief to let go of what is unnecessary, to make space for what’s to come. The snow is slipping back into the ground now, revealing all the needles and cones that were shed throughout the winter.

The decision to not build this year is beginning to sink in, to just have one main focus - the transition of bringing you home. To take time to make the little red house as comfortable and functional as possible and to get into a rhythm with the other personal assistants who will work with you.

It took until today to realise I had had this intention all along. In the ritual gift from, I wrote twelve intentions, in present tense, on small pieces of paper. On Midwinter’s night I folded them all up, then each evening until the new year, I burnt one without reading it. Sending those wishes to the universe. On New Year’s Day, I opened the last paper - the one I am to consciously work with, all the others will take care of them selves. On that piece of paper I had written; I find the perfect situation and solutions for Patrick’s healing and homecoming.

Support Artists in Resonance

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!

Leave a comment