While you practiced with the NIV mask this evening, I read through all the doctor’s weekly reports from the past four months. Decoding notes and noting questions to ask your doctor tomorrow. We need to take the chance while you have a doctor willing to communicate and share information. There are a few things to correct and follow up; that you’ve had not three but four vaccinations for TBE and we need to know if you are getting vitamin D or not. There are some test results to request and I’m concerned about the side effects of gabapentin, your medication for nerve pain. You need support to tolerate the pain, but we also need to check from time to time if it is possible to reduce the quantity. Everything is in such a delicate balance.
The day was simple. We received some touching messages of what this diary means to our readers. It was an important reminder of the ripples of this story. The experience of severe illness and recovery is rarely told from inside the experience or from the perspective of a carer. Most often the telling happens in retrospect, after healing or acceptance has taken place. This story is touching in me something of the depth of being human, of making sacrifice to care for a seriously ill loved one. This kind of caring comes with heartbreak and leaves you shipwrecked in a sea of the unknown. Floating on a raft of social isolation, lifted with wave after wave of love from friends and family.
Reading through your doctors reports, back through the tunnel of your illness, I’m thinking of the phase of the hermit in the Tarot. The moment of stepping back before moving forward, reflecting and shining a light in the dark.
While you were sitting in the chair, you asked me to turn your hands over, but now they will only turn halfway. There is such a loss of flexibility from all this stillness. It’s hard to counter with passive movement and at the same time this passive movement is essential to maintain flexibility, that your movement not be too inhibited when and if it does return.
You finished your whole bowl of soup today, two hundred millilitres, a dedicated hour for us both. One teaspoon, then swallow and swallow, pause and repeat. This time you made it without having sips of water in between and together with your hearty breakfast you’ve had seven hundred and fifty calories. I wonder what tricks I can cook up to get you one thousand calories a day without too much more swallowing. Whatever it takes to keep reducing the quantity of bag food pumped to your stomach. I imagine the day this tube can be taken out, what a hard won victory that will be for us both.
Our heartfelt thanks to everyone supporting us, in countless ways, to our dear friends and family and to the infinite kindness of strangers, to the forest, waters, birds and all beings. This diary is dedicated to you.
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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