We met with your doctor and counsellor today and talked through your experience with TBE so far. They were incredibly welcoming, making clear that we are both part of your rehab team. The hierarchy does seems softer here, less stifling at least.
Looking through my photos this morning, I stumbled on one of you sitting in a tree on our last kayak trip. It’s strange how that trip felt like a last trip, just like our last trip to France felt like our last family holiday. At the time, I explained it to myself that it had to do with Esmilda growing up and leaving home to study. There was no other clue on the horizon of what was to come. Now I feel determined that there will be more trips all together in the future, that we will find a way to have adventures again, regardless of how much support you need.
This evening I watched as your nurse did the daily movement training with you. It’s a new routine, first thing every morning and last thing every night, a nurse flexes and stretches all of your joints, massages and moisturises your hands and feet. We are both so astonished by this level of care and competence. You asked the nurse if she had special training, she said it’s just a normal part of working in this place. Everyone here learns how to do this, they help all their patients who have reduced movement capacity to move at least two times a day. She was a little surprised by your limited flexibility but was gentle to not hurt you.
Thinking back now, I wonder what if… what if you had had this kind of care over the past five months? Would you be less stiff in your joints? Aside from a few sessions with the physio and work therapist each week and the occasional massage from a generous nurse, I’ve been the only one consequently moving you on a daily basis. On some days I had a rest you were barely moved at all, despite our many requests. I feel angry thinking of it now, it seems nothing short of negligent, to host paralysed people in a clinic and not move them thoroughly at least two times a day. I don’t mean a kind of instrumental moving, to dress, undress and lift in and out of bed, but moving for moving sake, to limber up all your articulations. I am concerned about the consequences of your stiffened joints, not only now but in the future, when movement does return. Will you be able to regain flexibility?
Strangely, this is the first time you or I make the connection between the words hospital and hospitality, as they are most often worlds apart in reality, but here they do seem to meet. You are surprised by the service and wonder sometimes, is this a hotel or a hospital? The previous clinic was situated in what used to be an old people’s home, which surely contributed to the feeling of stuck-ness and fear of never getting out alive. Here the frame is clearly temporary, which that is a relief. We put up a few pictures but not too many, you will not be here for too long. Two months at most.
We spoke a bit about your hopes for the process here. The main one is to regain an ease of swallowing. But still, your stoma hasn’t healed, or rather, it is healing open. The doctor has now changed the routine with the coughing machine, to use it only when necessary, to limit the air pressure throughout the day that may be contributing keeping your stoma open. At night the NIV gives continuous air pressure, but that is not negotiable, you need the breathing support. An ear, nose and throat specialist will take a look in the coming days, it may well be that you need some stitches to encourage closure.
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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