So, here we go with a little story about the birth of the idea in 2003…
Christine Miserandino is having lunch in a diner with her longtime best friend, who’s questioning her about what it’s like to live with Lupus. Christine’s baffled as her best friend should know this – they spend so much time together, surely, she gets it, right?
But what her friend really wants to know is “What does it feel like to be you?”.
Now, like me, and a lot of other disabled people, Christine couldn’t really answer that. This bit really resonates with me because I’ve been asked so many times, “Dean, what is it like to be deaf?” or “What does this sound like to you?”. And, well, it’s difficult to put into words. Because when you’re disabled, you don’t know what it feels like – you just are – it’s your reality.
Anyway, back to the story…
So, Christine thinks for a minute. Then she grabs a load of spoons from the tables around her and thrusts them at her friend.
She explains that most people just go about their day, not having to worry about the choices they make – they have unlimited spoons.
However, when living with an illness or disability it’s all about choices. Like how you’ll spend the energy you’ve got and how everything you choose to do will impact on what else you can do with your day. You have a limited number of spoons – and when they’re gone, well, they’re gone.
Christine asks her friend to count her spoons…