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.
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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