Our day was threaded with jewels; a beautiful message from Jennikel, a spoken word poem from Jennica and a water lullaby from Katt. Treasures, all of them, and all of you walking with us. These gifts hold us, make us both smile and cry and wrap us in the goodness of the world again.
We feel the light returning, now that the turning has well and truly begun. The air was above freezing today and a fresh layer of sticky snow fell this evening. One of the nurses mentioned how astonishing it is, every year, when spring actually arrives. This spring especially, more than any we’ve known before, after this deepest darkness is sprouting something of renewal.
For two days in a row, you’ve eaten 1100 calories. The amount of liquid nutrition is gradually diminishing. Only two months ago a few mouthfuls was a really big deal, now you’re back to eating three meals a day.
I must admit, I’ve come to appreciate one of your nurses who I previously had such a problem with. We got off to such a bad start when I witnessed a near accident while they were lifting you, early on. At one point I requested that she no longer work with you as the strictness of attitude made for such a bad atmosphere for our family, though these requests are never heeded. At least now, something has settled and I have more appreciation for clear boundaries.
Sometimes I wonder who knows about, or is reading, this diary from the clinic. You say I am being paranoid, but I am not worried, just curious. I guess this kind of news must spread like wildfire in the workplace. In the best case, it might bring a mutual awareness that we are writing the books of each other’s lives, of our own lives, with every interaction. We matter in each other’s stories, we play different roles and shape shift through time. Who you and I are for each other has changed dramatically with your illness, to suddenly find ourselves in the roles of carer and invalid. What a strange word, invalid. Checking the latin origin, invalidus means ‘‘not strong’’, but has also come to mean ‘‘of no legal force’’ or to connote disabled solders.
To become so in need of others to survive is a drastic change for both of us. Although we all always already rely on so many others, human and more-than, for nourishment, shelter and connection. Receiving these gifts so habitually can give the misconception of independence. In your current state, you are as physically dependant as a new borne babe and fully cognisant as your adult self. As challenging as this is, it is a gift to care for you. An invitation to open of the flood gates of compassion and connection to anyone willing to meet you there. Perhaps it takes such a jolt to shake the habitual and really get what a gift this life is, to embrace it, in all its shaking uncertainty.
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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Part of writing these daily remembrances is to feel and then let go (where possible) the emotional struggles. A wiping of the slate in preparation for the next possibility.
That you are able to communicate and that Patrick is making progress little by little with his physical needs is simply wonderful. The words ‘patient’ and ‘patience’ come to mind for me.