After a talk with a friend this morning, I’m thinking a lot about shame. About societal norms that would have us hide away in times of illness, loss or failure. I’m thinking about the taboos we are breaking in writing this diary from the dark, from the thick of the challenge. With illness we are often expected to go in, to go quiet, to hide under a rock and to emerge with a recovery story, if at all. One of the things I hope this writing achieves is to dispel the shame that either of us might otherwise carry around this illness and the drastic changes to our lives and dreams. I hope to give air to the grief and love and confusion of it all. I have this sense that shame can only live behind closed doors and mouths, in an anaerobic state without oxygen. As soon as it’s shared it changes, invites connection, understanding and compassion. It is happening through this writing, through the daily connections with our readers, who walk with us into the unknown.
Today at the hospital, I got the sense that the honeymoon is over. There was talk about giving you liquid nutrition again as your weight is still going down. There’s been a few mess ups with the nurses not giving you the right quantity of smoothie or with you refusing the six am dose. We also found out the doctor gave you anti-depressive medication last night for the purposes of the side effect of making you drowsy. This feels like a big step backwards, but they insist that the dose is not high enough to have an anti-depressive effects and that it is far less addictive than the sleeping medication you receive. If that’s what you need to sleep through the night then so be it, but news of the liquid nutrition and medication has me feeling quite defeated.
We got a time and date for the big meeting next week, when all the specialists will share with us their mapping of your current capacities and the goals and duration of your rehab. While observing your swallowing today, your speech therapist understood what I witness every meal. You are overcompensating in your swallowing, engaging of far too many muscles and now have formed a habit that needs retraining. They want to do some kind of x-ray video of you swallowing some kind of light sensitive material, to get a different perspective from what the camera in the nose can show.
It has really started to hit me this week, the level of responsibility I’m about to shoulder with your coming home in a couple of months. While we hope to have assistants working with you round the clock, I will be responsible scheduling and for making sure it all works, hopping in if anything goes awry. I talked with your councillor about this briefly today, but realise I’ll need to pay for a proper therapist to have sturdy enough container to support me through these challenges. Until now, my routines and rituals have been enough. Sharing this story has been a form of therapy, to say it out loud, from voice to text, what has happened each day, to reread and co-edit together. But now it’s been six months since you got sick and I’ve been doing everything I can. I need to find more of a sense of my own life in the midst of all this, so that I can go on supporting you. Perhaps I’m getting ready to write a new story, or make art again, I don’t know yet, I need to give myself some time.
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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