After seeing the MRI scans of my head, I wondered if my head would function as a kind of pinball machine in the near future. With unrelenting enthusiasm I launch a plan that then bounces off one of the eight large tumors or damaged membranes and then I just have to wait and see what becomes of that plan. Common effects of the so-called ‘Leptomeningeal metastasis’ that I have are loss of speech, double vision, loss of facial muscles, the ability to hear, swallow and it will be noticeable in muscle strength and control of arms and legs. The sequence and speed of these effects are unknown, but it can start any day, as I was clearly told a month ago.
My brain, relieved of inflammatory fluid and pain by the Dexamethasone, appears to have opted for a different approach completely autonomously. The brain cells behave like a well-attuned self-managing top team, whereby they apparently attach great importance to creeds such as ‘Substitutes for each other’ and ‘If we can’t go over left, then we just try to go over right’. I have gained great respect for the human brain.
It is sometimes a bit confusing, both for myself and those who meet me. Apart from my puffy face from the Dexamethasone (which would currently make me look good in the famous hamster commercials of one of our rural grocers), sometimes a slight headache and sometimes a bit of fatigue, I am mostly still fully Ingebee, with all my actions, ideas and intensity. That is not in line with the average picture you might have of a terminal in her last weeks. Last Sunday I really wanted to play some beautiful pieces of music with a good friend, including Telemann’s viola concerto. I had to study for a few days and even that turned out to be quite fun for my brain. An ascent in the midst of descent.
Of course I am especially grateful for it. My brain offers me the opportunity to do what I always love to do: being meaningful with others and trying to make the world a little more beautiful. With designs, making music together, valuable conversations, making project plans, recording a beautiful podcast or just the warmth in a shared silence. Apparently I get time to be able to carefully transfer my role in what I have been building up in my life together with others, which feels great!
In the short nights (also an effect of the Dexa) I enjoy reading books that I have come to call my ‘Landings manuals’ and from which I learn a lot. Wonderful books such as ‘The Book of Joy’ (about a five-day meeting between the friends Dalai Lama and Desmond Tutu) and books that attempt to give an insight into the adventurous and loving world that awaits me after my death and of which I now – very special – clearly already feel a thing or two! In short: I learn to live each day -be it by trial and error- and thereby I receive the great gift of peace, trust and connection with love beyond the boundaries of earthly life. And that great gift is beyond even my top team of brains…