My gorgeous niece Susy is in the high school leadership team that decided to organise an MND fundraiser. In lieu of me speaking – because, y’know, the whole no-larynx-bed-103 situation – Kimi and I wrote this for Susy and her to read in assembly. To say I’m proud of these two doesn’t come close!
We were going to ask Kirsten Harley, my auntie and Kimi’s mum, to come and talk to everyone about motor neurone disease. But in November she had her voice box removed as part of life-saving surgery to connect her to a ventilator, and she is still in hospital.
So she and my cousin Kimi have written this and weI will play some video from 2 years ago.
Everyone, put your hands in your lap. While this is being read, imagine that even if you try your hardest, you can’t move your arms.
Now, imagine you have an itchy nose, or a hair tickling your cheek.
Now, imagine that you also can’t speak.
This is some of what it is like to have motor neurone disease.
Motor neurones are the cells in our brains and spinal columns that carry messages to the muscles that enable us to move, speak, swallow and breathe. In motor neurone disease, some combination of environmental and genetic factors causes those cells to start dying. At first, one part of the body starts to weaken: my Auntie/Mum had cramps in her legs and started falling over. Then, it spreads, piece by piece, until the person can’t move, speak, swallow or breathe. It can be very quick or more gradual. Kirsten is lucky to have survived 6 years since diagnosis; many people die within 2 years; most die within 5 years.
More than two Australians per day are diagnosed with MND. And more than two Australians per day die with MND.
There is a lot still unknown about what causes MND, and no treatments – yet – that significantly slow its relentless progress.
There are lots of things my Auntie/Mum can’t do any more.
She used to do ocean swimming and running. Now she can’t even stand.
She used to love her work teaching at university, but she had to retire when she was 45.
She used to grab a coffee on her way to the station. Now she has to be fed mushy food that is easy to swallow.
She used to hug, and travel, and dress herself, and sing out of tune, and adjust her glasses, and lie on the grass, and catch buses, and cook. She can’t do any of those things. She can’t move or speak or breathe by herself.
She has amazing technology that means she can use minuscule thumb twitches to control her phone, to blog and write and text and play and even speak with a disturbing synthetic American voice called Ryan.
She still has deep friendships and support from carers and feels surrounded by love.
She still has a sense of humour.
She still loves being a mum and auntie.
And we all feel gratitude and hope when we witness funds being raised for research, that it will lead to a future without MND. Thank you!
Now you can have your arms back. Use them for good!
This is a short video MND Australia made two years ago, when Kirsten could breathe and speak and Kimi was a lot younger.