my world didn't end on december 21 2012, as predicted. the end came a day later. the night of the predicted end, i danced under a bright moon, with friends and strangers on the streets of nimbin.
the following day i took my daughter for an xray (necessitated by a coincidental, or symptomatic, bout of pleurisy) which revealed a 'shadow of concern' on her left lung. that's all i needed to hear. in my heart of hearts, i knew that shadow was indeed a concern, and my grieving began in earnest on that day.
i have not been taken by surprise by the diagnosis of secondary, metastatic angiosarcoma on the lungs.
in the two weeks since, the blank canvas of this blog has taunted me. here's the space i have annointed as my therapy room, yawning it's emptiness at me. i've written a thousand posts in my mind.
the problem is that i don't occupy any one place for very long. every morning, i awake with tears stinging my eyes. my daughter is dying, and i am forced to witness. as the day wears on, my resolve strengthens (usually!!) and i swing wildly between a very buddhist perspective of suffering and detachment, through the minefield of mindfulness practice, tarrying a while in denial, and usually ending the day in tears again, railing against the injustice of this disease which knows no compassion.
how to chronicle this journey?
well, i've decided to continue in the spirit of this project. i'm told i will be happy one day. somehow. people do survive the most awful circumstances, and somewhere out there is someone doing it much harder than me.
so i'll continue to write, as the mood takes me. sometimes, i'm sure, i will chronicle despair and loneliness. other times, surely, will be hopeful. but mostly, i'm still aiming for honesty and truth of expression.
so, today started like many others. woken by my youngest stroking my face, struggling through my dreamscape toward a waking life that announced itself with tears. swallowing the tears to face the day, and the necessity of providing food for my family. fielding phone calls from loved ones needing an update, needing connection with us, needing us to know that we are loved. lying beside my daughter, tears falling soundlessly from my eyes, wondering if there are things she has always wanted to do - hot air ballooning, skydiving?
touching base with the medicos - who do we need to arrange appointments with? what information needs clarification? musing, why does the public funding of one therapy make it more trustworthy than another which is paid for privately? speculative medicine is speculative medicine, whether it's funded by the public purse or not.
the highlight of the day is a spot of retail therapy. only the prospect of losing her could possibly shame me into buying for my beloved the Dead Sea Spa therapy pack on offer at the suburban shopping centre we visit. the little girls are appeased by new pyjamas, swimmers which fit, and denim shorts with matching plastic belts. i wish my fears could be so easily swept away......
we are home, briefly, and i am forced to remember what it is like, this journey of 'treatment'. a too brief couple of days back in the embrace of the forest, searching for some normalcy, where none is to be found. i'll spend the next couple of days avoiding eye contact while i try to play catch up - with the laundry, with work, with friends whose need for connection forces me to face that which is unfaceable.....as i navigate this new world, which claims me despite my resistance.
No comments:
Post a Comment