What is the most important part of a human being? - This was your nurse’s opening question to me as I walked into your room today. She’s such a curious person and really has both of our trust. You were in the midst of the discussion together and your sincere response was - the capacity to see another human. This response reflects so much your experience right now, this is the most essential thing for your survival, to really see and be seen by another human. My response was - the heart. By which I mean to sense one’s own heart and the heart of others. The sun around which the rest of the human orients.
Your nurse and I both noted how alert you are today. There is a sparkle in your eyes. Partly you have been sleeping better and you are feeling more comfortable in your new temporary home. You are more focused on your eating now too. Swallowing seems a fraction less the challenge than it was a few days ago.
Speaking with your doctor today, she explained that you will have to go to another hospital, where there are breathing specialists, where you were first in ICU, to have surgery to close your stoma. It seems it wont close by itself because the edges have turned inwards. This could be due to having had the tracheostomy tube inserted a second time or the way your doctor at the other clinic initially taped your hole after decannulation, in her efforts to pull the sides toward each other. Either way, you will now need surgery under general anaesthetic, so they can cut the edges fresh and stitch you up, so it last long long last the hole in your throat can heal. You will need stay overnight for observation, but at least we can take the chance for you to meet the neurological breathing specialists, who just sent a letter in the post with an appointment for you to have your NIV and coughing machines recalibrated. The dance of complications continues.
From time to time I mentioned to you the faintest outline of what is going on in world. You find it immediately overwhelming, so we stop right there. Really, it is far too overwhelming for any one person to take in. So we all go on living in our bubbles. You and I in the bubble of this story, of gradual healing. I am so grateful, for all its faults, that we have a somewhat functional healthcare system. My heart goes out to everyone dealing with such challenging life situations as we are in, but in the context of war and or extreme poverty. In this regard we are extremely fortunate, but get a sense of the vulnerability, when fleeing is not an option.
After cutting your toenails, massaging your feet, cleaning your nose and ears and scratching your skull, we did our editing and reflecting together. I showed you the picture for the ninety ninth entry, Sphere. You looked a little confused - It looks like my hand, you said. When in fact it was mine, but my hands have also become your hands for now. The hands that scratch your forehead, clean your ears, cut your toenails and pick your nose. On looking up from the computer after a while, I saw you watching me with a smile. You wouldn’t tell me what you were thinking, but I had this sense that you were simply doing that thing. You were really seeing me. This, my dearest friend, is the greatest greatest gift we give to each other, that I sense your heart and you see me.
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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