Off the streets

I haven’t written here for quite a while but I have been busy – at least what counts for busy in this time and this (busy)body of lockdown.

I have had some turnover of carers, with 3 lovely peops heading off to concentrate on careers in social work, architecture and cheese vending, and new people learning the ropes of dealing with my machines that go ping and moody silences, the tricks to safely handling my weak, betubed body, the complexities of my input and output, a new or newly inflected vocabulary, and distinguishing essential from malleable routines.

I have been occupied by some interesting collaborations with excellent people, including a research project about procrastination inclusive video games for people with MND that I will write about in a separate post.

And Kimi and I were honoured to be invited to give the opening address to the biennial national MND Australia Conference, co-organised by MND Australia and MND NSW and held on 3 September. It was such a delight to collaborate on this with my awesome daughter, reflecting on our shared and different experiences of living with MND and distilling what has helped us.

One of the advantages of having “Ryan” voice my words is that he can motor on regardless if I find myself laughing or blubbering, both of which happened as I watched Kimi’s mature, poised, thoughtful, generous performance. I wish I hadn’t brought MND into our little family, but I couldn’t be prouder of Kimi and Densil or more grateful that I have had the opportunity to witness Kimi’s transformation from that shy, bewildered 6 year old to this sensational 15 year old. I greatly appreciate everyone who has supported us along the way.

As Kimi articulated so perfectly:

MND is hard. It’s furious, and fierce, and unrelenting. But, even more so, are we.

You can watch the video of our presentation here: https://youtu.be/wMc6oKAIwrQ

The conference fell on the 34 month-versary of my perilous trip to hospital with catastrophic respiratory failure. I wouldn’t have been able to share the experience of doing the conference talk with Kimi, or the last 34 months, if my life hadn’t been saved that day and if I hadn’t been given the chance to have a tracheotomy and laryngectomy so that a ventilator can breathe for me.

After my trachie I was approached by Gabe, a beautiful, determined woman with MND who was exploring having the same procedure so that she too can stay alive with her closeknit, beloved family. Gabe asked questions of me and other ventilated MND people over email, communicated with Dominic Rowe and other experienced doctors, and she and her carers had video calls with me and mine. She did her research, and she was really well informed and sure that this was the path she wanted to take.

I think often those looking in at the MND experience must consider it intolerable. And don’t get me wrong – it’s not the life that anyone would wish for, and I recognise that many – perhaps most – come to a point where they don’t want to extend their lives with MND.

But Gabe and I also both know that despite our malfunctioning bodies and needing carers to tend everything from our machines to our euphemisms, life can be wonderfully worthwhile. We can still explore our rich inner worlds; appreciate beauty and humour in the everyday; use technology to communicate, connect, create and for leisure; maintain relationships and contribute to our communities; and delight in our loved ones. We can still love and be loved as parents and children, partners and siblings, aunties, nieces, cousins and friends.

Tragically whereas my wonderful neurologist supported and facilitated my choice to have this life-saving surgery, Gabe has faced a very different response. Despite asking and arguing and having the Human Rights Commission on her side, Queensland Health are denying her the surgery.

You can watch Gabe’s story in this A Current Affair feature for which we were also interviewed: https://youtu.be/0RUJs8SU_iw

And you can support her quest by signing this petition created by one of her friends: https://www.change.org/p/i-support-gabe-s-surgery-choice-and-her-right-to-live