Today is the second anniversary of the day I scared the shit out of my family (not literally, though I don’t know if the same can be said for me), by having a six-hour brush-and-comb with death. You can read about it and the decision that ensued here: On deciding to keep living with MND: A triptych
Today I am grateful.
For the family, carers, ambos, doctors and nurses who saved my life against the odds.
That my beautiful family wanted me to stay around, even with the sacrifices that meant and though I’m not the person I used to be.
That my neurologist, Dom, and his team bust their guts to support their patients to live their lives on their terms.
That I was able to have a trachie, so that a ventilator can keep me alive.
For the team who cared for me for 9 1/2 months in Macquarie University Hospital, and the friends I made.
That my ICU stint preceded Covid-19, so my mum and sister could visit from Victoria, and family and friends co-occupied Room 103.
For my wonderful, diverse team of carers, who enabled me to come home, including two who have recently had to step aside to deal with life, and the newest recruit, a young nursing student who is mercifully adept in her first caring role (if anyone nearby is looking for this kind of work let me know).
For their contributions to my ever-expanding lexicon for body parts that dare not bear (or bare) their proper name.
For being home on days like today – glorious spring sunshine brightening the room and entrancing our cat to his favourite warm windowsill.
For two years of family and writing and music and games and friendship and crosswords and tv and humour and coffee (better through a straw than an NGT) and radio/podcasts and occasional outings.
That in (tragically) longer than many people live with MND, deterioration of my facial muscles hasn’t yet led to losing my ability to eat Jaffa cakes and smile.
For my excellent extended family, in a week where we’re fondly remembering my Uncle Rob, who died peacefully on Saturday after a long illness, and thinking of his three kids and their families.
That I have been able to continue on the MND NSW Board, had unexpected opportunities to contribute to MND advocacy and storytelling (no-one expects the Royal Commission! https://www.croakey.org/for-people-with-disability-the-pandemic-has-brought-hardship-and-neglect-commission-hears/) and sociological thinking (Art tickle) despite losing my voice box and having less functional muscle than a decrepit teddy bear.
That amidst the terrible tragedies of Covid-19, the long, difficult, generous lockdown (plus compulsory mask-wearing) endured by Victoria has finally resulted in a string of “double donut” days, and yesterday I was able to exchange phone screen-mediated smiles with my gorgeous 10-month old niece as her parents carried her to meet other babies in a Melbourne park.
For the brave, resilient class of 2020, including my brilliant niece.
That I am part of the amazing, nurturing, grieving, sharing, encouraging MND/ALS community, including such truth-tellers as Team Reilly:https://youtu.be/BLhaYOOpNXc
That the dedicated work of many MND researchers around the world, including the team at Macquarie, is giving us hope (coincidentally this little video of us seeking support for their neurodegenerative diseases biobank was emailed today:
https://youtu.be/I1YdDy6Pzr4 (Jack and Emma filmed us; video by Joanne Stephan, Macquarie University)
For the ongoing love and support of Densil, Kimi and me by our family, carers and friends – visits, messages, plant cuttings, mandalas, jokes, prayers, meals, dress-making, chess games, science t-shirts, tick extractions, freshly laid eggs, and more.
For two more years with my loves, my Densil and Kimi, their love, teasing, music-making, interest in and knowledge of the world, adaptability, creativity, cat-communing, compassion.
For this evening: of sitting together, with my kind, attentive carer feeding and suctioning and taking my piss; of beautiful Kimi arriving home after band practice and enjoying chatting about her day, the relative merits of ice-cream and salad, and which of her clever lines qualifies as a good joke, before disappearing to her room for some combination of homework and secret teenager business; of watching two hours of ABC coverage of the impending US election, and hoping to God they don’t re-elect Trump; of the loud miaowing in response to the 8pm question: Do you want dinner?
Today, I am grateful that two years ago, after six terrible hours, I woke up.