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.
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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