eSCAping Type 1

A metaphor is a figure of speech that describes something by comparing it to something else, without using “like” or “as.” A good metaphor provides clarity and comprehension through subtle similarities. 

For example, an author might say, “Her voice was a melody…” We’ve never met this fictional character, but we’ve heard a song before, so we understand what she sounds like AND how people must feel when they hear her speak.

 

 

I’ve seen Ataxia compared to a malfunctioning circuit board, a faulty car engine, an old house furnace…

Get it? I’m a robot.

Really though, one piece of us – a pretty important piece; one that has control over a lot of other parts – is broken. A faulty cerebellum is like an unplugged WiFi router: a whole bunch of stuff in your house won’t work if the internet is down, just like how my muscles aren’t working because part of my brain can’t control them.

 

 

But my current favorite metaphor used to describe living with a chronic illness is the “Spoon Theory.”

In 2003, blogger Christine Miserandino used spoons as a visual representation of units of energy that a person might have. You wake up with a set amount of spoons, and then use them throughout the day to complete tasks. She explained how Lupus forces her to plan out her days and actions in advance, so as not to run out of spoons too early.

 

 

Because of this, a person with a chronic illness is sometimes referred to as a “spoonie.” 

We start every single day with less energy, or spoons, than an able-bodied person. And then every single activity, no matter how thoughtless and automatic, depletes from that limited supply. Getting out of bed, showering, getting dressed, eating… any mundane task threatens to drain our energy at any given time.

And it’s not just physical activities that use spoons – mental activities require energy, too. Responding to emails, online grocery shopping, scheduling babysitters, writing this blog, watching the damn news…

I might be sitting on my couch, but I am not relaxing.

 

 

Let’s play a game:

Think about every minute of your day so far. Like, you didn’t just wake up and go to work. Even something as simple as brushing your teeth required you to reach around to find what’s needed, unfasten the toothpaste cap, squeeze the proper amount on a tiny surface, turn on the right amount of water pressure, balance so you can spit into the sink, etc.

You probably didn’t realize just how much you do every day.

Now, start back at the beginning and give yourself, oh let’s say 12 spoons (it’s a good day). Take one away each time you do something that requires any amount of effort… which sometimes includes the very act of getting out of bed.

Did you make it to work? With enough spoons to accomplish anything when you got there? Did shaving your legs in the morning prevent you from cooking dinner at night?

 

 

It’s not that people without disabilities have unlimited energy, it’s just that they don’t have to prioritize their time accordingly. They don’t have to think about every minute of every day, let alone debate which mundane, routine tasks are worth it.

According to Miserandino, “The healthy have the luxury of a life without choices.”

 

 

Ok, so the logical solution is to get more spoons. Sleeping and resting obviously help replenish, but if we do that during the day people often accuse us of being lazy. Plus, we’re still chronically ill when we wake up, so it’s really a repetitive process.

And no, running out of spoons is not the same thing as being tired. A cup of coffee won’t help; it’s not something you can just push through. It’s this empty, helpless, draining feeling that can only be avoided by planning the unknown.

 

 

So, whether your life is a highway, a rollercoaster, a flower, a puzzle, or a book… remember to use your spoons wisely.