A year ago my family and I had a bad day, but things turned out ok.
I woke up in respiratory failure, probably caused by aspirational pneumonia, and had lost consciousness before the paramedics and carers had worked out how to get my paralysed body into an ambulance. The inability of my bipap-assisted breathing muscles to expel gas led to such carbon dioxide necrosis that I am lucky to have only lost six hours. That precipitated our decision to extend my life with a tracheotomy and laryngectomy, and what turned out to be nearly ten months in hospital.
I am feeling pretty darned lucky to have had this year. I recently challenged my nephew to write 50 things he is grateful for, which is why my list, from the last year, isn’t longer:
The sight of a fat skink soaking up the sun.
Beautiful dresses designed and made by Eleanor.
Hearing Kimi chortle as we introduced her to Black Books.
The shiny, compassionate leadership of Jacinda Adern in the aftermath of the Christchurch murders.
Fine physios and doctors, some of whom share a fondness for ocean swimming.
The trinkets on my stand (Heena’s yellow cat, Ming’s black omamori, Helen’s red heart, Lexi’s embroidered ‘suppositories of all wisdom’ and
Densil’s perennial Halloween spider).
Cold beer with Goan take away.
Cryptic crossword sessions with Anne, Sonia, Sallie, Dave and Estelle.
Espresso through a nasogastric tube.
Kimi becoming a teenager.
The sisterhood of nurses.
Walking in my dreams (and doing sit-ups in Fran’s).
A roomful of Christmas caroling relatives.
Our cat’s sudden appearance when Kimi arrives home.
Tania and Tianna accompanying us to see Tim Minchin’s hilarious, clever show at the State Theatre (my first outing, on day 147).
My beautiful Mum coming to Sydney to have her hip replacement in the same hospital, and being much more comfortable afterwards.
Bruce’s weekly mandalas, linking us across the world.
Not being able to smell my own or others’ farts – a happy side effect of the trachie – though a loud one can still wake me in the dead of night.
Having the opportunity to vote from my hospital bed.
The arrival of packages with furniture-on-wheels and interrogation spotlights and mirrors ordered by Densil to improve the workability of our house.
Crumpets with Emma’s lemon curd and chocolate hagelslag.
My wonderful neurologist Dom’s care, and sweet transformation to Papa Dom.
Visits by cousins and uni friends and school friends and work friends and parenting friends and overseas friends and interstate friends and coffee friends and church friends and carer friends and friends made in hospital.
Podcasts: Chat 10 Looks 3, Wilosophy, and swapping suggestions with Eva.
Being included in parent/teacher night via FaceTime.
Steve the coffee guy bringing special packets of Madeira cake.
Julie (recently named Australia’s most influential woman for her important, thoughtful work on vaccination) taking the time to suggest and create this blog.
Sweet Sydney tap water.
Texting and Tele-listening to continue my work on the MND NSW Board into a 7th year.
Visits by nieces and nephews – Zoe, Ian, Jonty, Marty, Hannah, Susy, Aydin – with (variously) tales of work and study, excellent jokes, statistical interpretive dance, empathy and art (Why did the Little Mermaid start wearing sea-shells? She grew out of her B-shells).
Margaret assigning ‘Bring many names’ at Pitt Street.
Homemade cake from Bob, Andrea and Nordi.
Body Shop lip balm.
Meeting more gorgeous people in the online MND community, and Alexandra and Luke face-to-face.
All the wonderful, creative, life-affirming sets of 50s done by so many to celebrate my birthday, including MND Australia planting 50 cornflowers outside Parliament House.
Last precious conversations with dear family and friends.
Advice and encouragement from Justin and Rachel, who preceded us down this trachie path.
The joy of sax: Densil and Kimi jamming at home, videos of solo night and busking, and live, with stage band, at the Wahroonga Food and Wine Festival.
The evolution of NeuroNode, which enables me to communicate, and Peter’s cheerful support, even at 3am.
Updates about Lexi’s pregnancy. The best.
Conversations with Jack, expert lip reader and mind reader.
The soft, gentle drumbeat of a feline tail on my arm.
The closing of the Uluru climb (my God, the grace and patience of the Anangu traditional owners).
Waking to Danny’s smiling face and knowing it would be a good day.
Alex and Kristina and Dom’s smoothing of the NDIS waters.
Flowers from Tokiko and Aunty Meg and Kathryn and Liz and Pete and G and Chris and Amy and J’s mum.
The liberation of my nostrils from my bipap mask.
My carers learning to work well together.
Densil and Kimi’s witty banter, and knowing they’re ok.