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!
 | A guest post by
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I wanted to drop a note saying how much your personal story means to me and how grateful I am that you decided to share it with the world.
My husband and I were also living in a yurt, in the forest when he suffered a catastrophic stroke that resulted in a lot of the feelings that you describe. Physically he bounced back pretty quickly but there was 2 months of hospitalisation and 2 operations, however he lost all speech and had severe brain damage which took months to regain some semblance of normal.
we were on our way to spend winter in England when it happened so our wonderful beautiful yurt and forest home had no dry wood and no running water, just insult upon injury! Not even supported by the land we love at a time of need. we are both artists and fiscally it was ridiculous. all of a sudden our frugal lifestyles are filled up with excessive driving, grabbed sandwiches at the hospital, buying dinners for friends who are providing places to stay near the hospital, rented rooms, ipads for speech, apps for relearning speech, speech therapists etc and herbs. all the minutia of a normal life that I had exited years ago that adds up to thousands of $ that we hadn't planned for.
Meanwhile the soul killing life sucking stale air hospital was a huge challenge. entering into the medical system via emergency is horrific in the usa. i mean its bad anyway but not having “history” ment never one doctor and no one really on board and interested. healing was not the word that came to mind.
so yes. the homeless jobless aspect of being brought back to life is definitely the less romantic aspect of rebirth. we often forget that the arrival is in a vacant zone with little resources. that not only do you have to pay the underworld back for your return but you have to create everything over again when you have the least amount of energy.
what saved me off course was community and family. as soon as my husband could travel we flew to England, into the arms of family and normal plumbing. I was held with my peers, entertained and loved while my husband slept and ate for about 7 months.
he has just passed his year check up with an a okay. and although he is of course not the same, we both are forever changed, however he is able to focus on what he wants from life, what he wants to give to life. he has stepped back into the flow. we are able to be back on our land, in our yurt with its canvas and felted wool and wood stove. back to our frugal ways of living and creating.
As I read your words I know that things will progress. and i am forever grateful that i can sit with you in this. as it touches me in all the ways, to be seen, in our shared experience of holding it all together, of facing the broken dreams and promises, the betrayal and anger as well as the joy and celebration. And I am very glad that you have community and family around.
I leave you a link to an essay i wrote about the healing medicine of rose. maybe you can read it to your husband and feel into the beauty she has to offer, offer us who crawl back into living after betrayal.
https://www.mavenworkstudio.com/essays
I am sending you all the fierce strength that you need to get through this. I went through something similar with someone once and all I want to say is that it's not a straight line from "sick" to "better," as you know. There is only what is, and no reason to feel shame. Take care of yourself as you need to, and keep fighting 💜.