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…
Then she asks her to start talking through a typical day.
She starts, “I wake up”…
Christine takes a spoon away 🥄…11 spoons.
(Because, as I well know, how a disabled or ill person feels waking up can be wildly different to an able person. In fact, it’s wildly different every day! Depending on how well you slept or if your medication is causing side-effects etc. etc.)
She has breakfast.
Another spoon bites the dust 🥄…10 spoons.
Takes a shower.
Another spoon down the plughole 🥄…9 spoons.
You get the picture. By the time, she gets to work, she’s used over half her spoons and she’s starting to panic that she’s going to run out of spoons before she gets through everything she needs to do in her day. (Welcome to spoonie life!)
She starts to feel upset and asks, “Christine, how do you do it? How do you manage with just 12 spoons?”
And of course, she admitted that it was hard. And the most important thing that she had learned was that she had to slow down and let go of doing everything.
So yeah, that’s Spoon Theory! 🥄.
And from that conversation and that one amazing story, the idea has really taken on a life of it’s own. There are hundreds of thousands people all over the world sharing experiences and talking about spoons and #spoonielife.
Spoon Theory has been really beneficial to me personally, giving me the ability to pause and apply something intangible, like effort/energy, to my day-to-day.
You see, as well as being deaf, I have Meniere’s Disease, severe nerve damage and chronic pain. Which means on a good day, I use a crutch. On a bad day, I use my wheelchair. But in my head, I’m still perfectly able to do EVERYTHING!
Christine’s right though. It’s hard managing your spoons. Every day is a struggle. And it’s hard to accept that you need to slow down. I’m still learning to do this!
I tend to wake up with between 8 and 10 spoons 🥄.
However, the last week or so has been really difficult for me because I haven’t slowed down – and well, I ran out of spoons and ended up spending a whole day in bed, in pain. Which was a huge reminder that the reality is, I can’t do everything and I must stop holding myself up to those standards. I must spend my spoons wisely!
So, for me, Spoon Theory is a way of quantifying energy and effort – to quantify how much I can do in a day. It’s a way to make sure I pace myself.
(If I do x today, then I can’t do y tomorrow.)
It’s about selecting and sacrificing. It helps me to plan, build around and structure what is my life now. The reality of 8 to 10 spoons.
If you’d like to know more about spoon theory you can watch a talk on Spoon Theory by Christine Miserandino.