“Better dead than disabled”: on Stephen Hawking, Me Before You, and “mercy killings”

Content warning: suicide, murder

Is it better to be dead than disabled? It might seem a shocking question, but the idea that death is better than disability is one that is promoted all around us, from fictional stories to news reports. It’s certainly a question that journalists grappled with when (clearly) struggling to write about Stephen Hawking’s recent death, in media coverage that can best be described as an “ableist garbage fire.”

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Health update – neurologist report

It feels strange to post an update when there’s really nothing to update, but here I go! Some time last year I consulted a neurologist to determine if there was any known underlying neurological cause for my worsening symptoms. I’m sure those of you reading with chronic illnesses will understand that seeing a new specialist is not something you take lightly – the entire process consumes so many spoons that sometimes you have to trade off whether it will leave you better or worse off, health-wise.

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Electrolyte drink review updates, and some thoughts on Banana Bag

Just letting you know I’ve updated my Electrolyte Drinks Mega-Review post with a couple more reviews. The first is for Repalyte, a flavour-free rehydration sachet which Ruth kindly sent me. It’s a handy alternative for those who cannot tolerate flavours or extra ingredients. The other is Aqualyte, an Australian-made product which proved a sugary disappointment. Check out my mega-review post for more!

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How I spent my birthday

Warning: contains GIFs.

This isn’t the most fun birthday story, nor the happiest, but I believe it’s important to be honest about my symptoms to promote understanding of life with chronic illness. It doesn’t take a break when it’s your birthday! (Though I wish it did.) And if it helps others who share the same experiences, even better.

 

It’s lunchtime, and mum and I are preparing toasties. Suddenly, a wave of exhaustion washes over me, and I head back to my room for a quick rest before the exertion of sitting upright at the kitchen table. I’m nearly at my chair when – THUD. I hit the floor.

Hans Moleman: down I go.
I’m pretty sure this is the most-used GIF on this blog, but it’s just so damn accurate.

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A health update, and happy miserable New Year

Warning: contains GIFs

A beach scene.
Stingray Bay from Pickering Point, taken by my father on one of our now-rare afternoon drives.

Something that never fails to surprise me about living with chronic illness is just how precarious your existence is. One day, you can be feeling as though you are making progress with your health, or have at least stabilised, and the next, you find you’ve slid back into a particularly nasty and unique form of incapacitation.

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Unrest available for rent on iTunes

Movie poster for film "Unrest".

Just dropping in to let you know that Unrest, the independent documentary made from bed by ME/CFS patient Jennifer Brea, is now available for rent on iTunes Australia. If you’re after a belated Christmas present, it would mean a lot to me if you’d consider giving it a watch.

You can read more about Unrest in my film review for The AIMN, or my previous post on the topic.

 

Unrest is available on iTunes Australia for $6.99AUD or purchase it for $18.99AUD. See the Unrest website for a wider range of international viewing options, including DVD and Blu-Ray orders.

The Salty Spoonie

Last night a friend made an excellent post on Instagram about the labour involved in being a disabled or chronically ill person and having able-bodied people constantly dish out unsolicited advice, appearance policing or thinly veiled insults disguised as treatment tips. She encouraged us to “bring on the salt”, I suggested a tee that read “salty”, one thing led to another and I ended up with a RedBubble store full of salty disability designs. ¯\_(ツ)_/¯

Black t shirt with "salty" printed in white
Salty – white text on a classic t shirt

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