ALS - To The Moon and Back — Episode 16
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This episode starts with us talking rubbish about bin chickens, bad politicians, Barbie dolls, drag queens and whether double-dipping chips should actually be illegal in Australia. Completely normal behaviour. Then, somewhere between laughing ourselves stupid and discussing “important Australian words” that apparently need to be voice banked forever, things get a bit deeper.
We talk honestly about something that’s started happening for me recently — ALS beginning to affect my voice. It’s confronting, weird, heartbreaking and strangely practical all at once. We get into voice banking, AI technology, recording memories for my granddaughters, and why apparently I now need to permanently preserve the ability to say “mate, what the f*ck?” for future generations. Because priorities.
There’s also a really raw conversation about illness, grief, friendship, the AIDS epidemic, people leaving too early, and the strange perspective you gain when life suddenly becomes very fragile. But in true us-fashion, even in the middle of the hard stuff, we somehow end up crying with laughter. Because sometimes humour is the only thing holding the whole circus together.
We also talk about the weird reality that living with ALS isn’t just doom and gloom every second of every day. There are moments of incredible beauty, perspective and connection in amongst it all. Plus a bit of hope — research is moving fast, trials are happening, and for the first time in a long time there are genuine reasons to believe things could change for people living with this disease.
It’s messy, emotional, funny, slightly inappropriate and very, very human. Pretty much us in podcast form.
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