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.
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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