95. Cake

Tipping Points - a diary of rebirth

2.3.26

The icy snow this morning reminds me of that rock solid wedding cake icing of the eighties, the cake of the earth is entirely encased. I’ve been recalibrating your smoothie recipe to deliver seven hundred calories per five hundred millilitres and have made two different versions. Chocolate banana and green power, with wheatgrass powder, which will also need spinach and avocado added later to keep it fresh. I’ve made four doses, plenty enough to make it to your calorie count on my days off. You are also being given what I’ve nicknamed ‘‘medical mayonnaise’’ in order to curb your weight loss - a pinkish emulsion of sunflower and canola oil. This makes you feel sick unless your stomach is properly lined with food first, but hopefully you will put on some weight soon so we can take that off the menu.

These smoothies are your cake that you wont even taste. The nurses say some people can taste the food ingested via their PEG, but after five and a half months of bag food I’m so glad you don’t. The smell of that stuff makes me want to vomit and when it gets on your clothes it sticks like glue. We heard a funny story today, that at this clinic some time ago there was a doctor who encouraged patients with a PEG to chew their food first then spit it out, before mixing it in a blender and injecting it through the tube in their stomach. The idea being that chewing gets the digestive juices flowing, though the approach was later abandoned as people found it far too abject.

We are so grateful to have our most favourite doctor again today. She is happy with your progress and will send a referral to the brain injury rehab in the coming days. It could even happen that you move this week! The excitement is bubbling in both of us, to imagine moving from here after what feels like an eternity. Now you have overcome the biggest hurdle - regaining your breathing autonomy, with a little non-invasive support at night from the NIV.

Other wonderful news today is that your doctor has been gradually phasing out gabapentin, for neuropathic pain. You are down from three to one dose a day and on Thursday you will take the very last one. You’ve not been experiencing any additional pain and I am so relieved that we can be finished with the unwanted side effects of memory loss. Your doctor even admitted she wasn’t aware of that side effect until after I had asked questions about it. This was a discretely miraculous moment, to hear a doctor admitting to their learning process, that they do not know all. Of course no one does, nor should they be expected to, but so few doctors dare to drop the facade and be honest about this.

From Thursday onward, your only medication, apart from salts and oils, will be melatonin and a nightly dose of imovane to help you sleep. Once you get home we can phase that out too, so you can live your own rhythm again, pharmaceutically free. I’ve packed the car with all your things you don’t need at the clinic as we prepare for your move with the excitement of going on holidays. There will be a lot of new things to adjust to, it wont be without challenges, but it will bring you one step closer to home and this is truly cause for celebration.

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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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