Home, writing, special days, dancing

Today I have been home for 290 days – the same amount of time I was in ICU!

No-one expects the Spanish Inquisition. And I wasn’t expecting my first months home to include an apocalyptic combination of bushfires and pandemic, or what may be revolutionary protests against racist violence and injustice. These have been intense and heartbreaking times for our world, but nonetheless times when I’ve wanted to be in this world, and super grateful to be home.

I haven’t posted anything here for a while, mainly because I have been doing writing of a relatively unbloggy nature.

Actually, a fair chunk of my writing always has a distinctly prosaic bent: listing supplies we need from the chemist, asking carers to move a tickly hair off my cheek, emailing about details of my carer roster, describing symptoms to my GP, ordering groceries, introducing trigonometry mnemonics, saying good night. My admin writing load has been boosted recently as I prepared for my 6-monthly NDIS plan review meeting, with a new coordinator of support and a new occupational therapist. And we have been training a new carer, requiring me to explicitly spell out instructions.

There have been a few other writing and other projects that have been keeping me busy since I last wrote for the blog.

On the appropriate May day I thought (and wrote) motherhood thoughts. And ate these delicious scones made by Kimi, which was not only a delight in the moment, but a connection to remembered moments. Devonshire teas at countryside cafes, when the biggest challenge of going away was getting all our marking done so we could switch into holiday mode. Our Blue Mountains honeymoon. Dad asking for extra cream because he was deprived as a war baby.

I have also been enjoying working on a health sociology journal article with my old colleague-friend Karen. There is something exquisitely satisfying about the process of sorting out thoughts and turning them into words, and watching the piece of writing form as it passes back and forth between us.

And I wrote this piece for ABC News:https://www.abc.net.au/news/2020-05-17/coronavirus-lockdown-ventilator-icu-motor-neurone-disease-help/12246700

I always celebrate getting older (as you can see A 50th birthday invitation) but wasn’t particularly excited about turning 51. However my gorgeous Kimi and Densil surprised me with one of the best presents ever, a beautiful book they made for me.

Its pages of poetry, drawings, music and puns speak of our long relationship and how well they know me, each one a personal, humour-filled tribute to my passions and our shared life together. I don’t think I will ever tire of looking at it.

(Knock knock. Who’s there? Europe)

And I have been dancing! In lieu of conventional MND week fundraising activities, Australia’s MND associations conjured up a campaign suitable for the Covid-19 environment, Australia Moves 4 MND #AM4MND. My sisters and I heeded the call and reformed Harley’s Angles (not a typo), pledging to dance daggily each day for a month.

It turns out that dancing with your face is heaps of fun. I’ve been brow boogie-ing to Bowie, eye-rolling to “I’m too sexy”, syncopated smiling to Simone and doing the facial fandango to “Fernando”. And I’ve been jiving along as Densil and Kimi jam. When Sonia came for her first visit in ages, we had to celebrate by dancing together. And some of Lexi’s dances have been accompanied by her baby and chickens (not at the same time).

Our pledged month has finished but I’ve decided to keep wiggling my face every day. And we’re very grateful for your generous donations to MND NSW:https://www.am4mnd.org.au/my-fundraising/79/harleys-angles

Thank you!

3 thoughts on “Home, writing, special days, dancing

  1. Hi Kirsten,
    By now the number of days at home will have exceeded days in hospital, which is a wonderful thing. I am so glad you are still with us and made that courageous decision to fight for your life and the love you have for your family and being among us still. Speaking on behalf of your extended layer of friends, we’re very proud of you but also wish there was more we could do to lighten your load. I am still largely in iso but going for occasional walks, which should be more frequent. I am finding it hard to believe Australia has managed to dodge the full brunt of the virus and we’ve fared so well. That’s taken a huge amount of my energy and I really have nothing left at the moment to absorb too much of the #blacklivesmatter movement, although I’m supportive and a firm believer in equality and also aware that some groups face particular challenges when it comes to experiencing equality. At the same time, I would also like more attention drawn to the needs of people living with disabilities and how the NDIS is refusing to fund vital equipment for participants. I was left coughing and gasping for air unable to get out of my chair and tying like a beetle on my back and yet the NDIS knocked me back for an electronic recliner and it took them 12 months to reach that decision. A week later, a friend put me onto a free recliner through freecycle and this lovely couple even drove it over and helped me set it up. Seeing footage of George Floyd and people saying “I can’t breathe” brings back my own extreme suffering at the hands of the NDIS and how I was lucky to survive. That’s probably why I can’t bear watching the protests. BTW I am also aware that there are numerous times I should’ve gone to hospital but didn’t. It always seems like too much hassle and I’m concerned about picking up something while I’m there. However, I’ve had a chat to my lung specialist about this and I’ve changed my modus operandi for the future.
    I’ve got to head off and get dinner on the road.
    Love & best wishes,
    Ro

    Liked by 1 person

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