This month we had a contest and asked some of our readers, members and volunteers to write a creative peice about What has BYDLS and “the spoon theory” meant to you?
“stationaryfaery” (her bydls.com message board name) submitted her groovy written word and poetry.

I haven’t been a spoonie for that long. Four years visibly, 6-7 years on the minor scale. But as long as the pain has been there, I have been trying to get friends to understand. To slow down for just a minute. To believe. To accept. I remember winter mornings where I would force myself to stay outside in the cold so that my arthritic hands would swell up and look abnormal. So I could say “See! This is how it feels! Can you see it?” and I occasionally got concern. But mostly I got the ‘normal’ responses. “well…they are fine most of the time” and “well….you seem okay.”
“But you don’t look sick.” Well, not sick enough, apparently, until the morning I woke up and couldn’t walk.
As I’ve grown up I’ve learned that it’s not about looking sick. It’s about finding friends that will stick with you. That will try their best to understand despite a lack of visual clues. It’s about the friends who won’t steal your spoons, and will understand if you need to save them for later. Who will appreciate the spoons you sacrifice so that you can spend time together.
Before the Spoon theory, it was impossible to even put into words what it feels like to have limited energy and pain tolerance. Most people I met were healthy. They are the keepers of unlimited spoons. Sure. After a tough day they’d get tired. That’s normal. But none of them could fathom not being able to lift your arms to brush your teeth or hair. They couldn’t believe that you could wake up, get ready for the day, and end up having to go right back to sleep. I got to the point where I was even unsure about how normal it was. “How can someone do this everyday?” “It’s like I can never just be me, I’m always sick-me”
When I read Christine’s theory I cried. I bawled, actually. I don’t have lupus. But I do have spoons, so few spoons. I thought “finally! The words!” She’s given us a way to talk about illness more easily, to explain it in a way that won’t leave us exhausted and frustrated. And for me, at least, she’s shown a way to understand these things myself. To come to terms with things. To know that I am not the only one saving spoons and planning my day around being sick. Christine, I can’t thank you enough for these gifts (because I do consider them gifts). They’ve led me to better relationships with my friends, my loves, and given me a better understanding of myself. The theory itself also led me to the BYDLS message boards…where I have met countless spoonies. Where I have shared advice, hard times, laughs, and an understanding and acceptance that I never dreamed I would find anywhere.
So here’s a poem for Christine…I’m kind of on a beat poem kick right now, so it’s written to the sound of my mind’s imaginary bongos ^_^
Spoons Speak
_____________
A Goddess of Cutlery is
weaving for us
A new language.
Explanations to recreate
the words health gave us.
A gift
allowing us to redefine ourselves
in our own terms.
Without knowing her magic, she spreads it, and the words reach out to touch the outstretched bent fingers and splinted wrists of those who were groping in the dark for the ‘right things’ to say.
Now you can find us,
dedicated worshipers,
invisible
besides for our knowing glances
and our fondness for the spoon.
**butyoudontlooksick.com ©