This morning I invented a smoothie recipe for you with one thousand and one calories to six hundred millilitres. The inspiration came in a dream and I had all the ingredients in the cupboard. Hemp seeds and oat milk, tahini and walnuts, cocoa and maca powder, dates, chia and linseed, banana and bee pollen and a bit of honey. You are back on track with your food today; breakfast, lunch and dinner. Tonight the nurse will feed you this smoothie instead of bag food, via a syringe to the PEG in your stomach.
You’ve had an itchy cheek today and have had me scratch it multiple times. I asked you if you missed touching your face, you said your hands feel staved for touch. You relish every massage and every movement I give you. We manage to bring your fingertips to your face only after I’ve stretched and limbered up your elbow many times. In the months at this clinic, the flexibility of your joints has dramatically decreased. I’m concerned about your left foot, that can no longer make a right angle to your leg, as the staff have not managed to keep a routine with your orthopaedic supports. It happens perhaps once a week rather than twice a day. I’m concerned your shortening tendons will make it much harder for you to eventually stand and walk again. All these daily routines are so essential to increasing your chances of ease of movement in the future.
The skin to skin touch you receive is with me, and occasionally Esmilda and visiting friends. All other touch comes coated in latex. I wonder if the hygiene gains outweigh the what is lost with the lack of skin to skin contact. Perhaps an essential part of care is missed.
Each day the rubbish bags in your room fill to the brim, with plastic aprons and latex gloves. Each time a nurse or doctor enters your room, they don an apron and gloves, then throw them in the bin when they leave. At least fifty litres of compacted garbage per day. You’ve been here for one hundred and forty one days now, so that makes seven cubic metres, a whole rubbish truck full.
It’s two months now since you’ve been outside, since before the snow came. You are so sensitive to shifts in temperature so we’ve not yet dared. We wait for more warmth in the air. Till then the plastic plants indoors are taunting and eyes reach for the garden through glass.
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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All that plastic, hey. I keenly remember the anxiety I felt while in hospital, just from looking at the amount of plastic around me, discarded daily.
On a happier note, loving your grocery cupboard ingredients.