If you follow me on social media, you’ll see me hashtag #spoonie, #spoonielife, and #fibromyalgia quite a bit. I do it to educate non-disabled peeps and to connect with my fellow spoonies. I never do it to draw attention to myself or to invite anyone to feel sorry for me. Seriously, don’t feel sorry for me. I’m a happy person. Annoyingly so, perhaps. BECAUSE GLITTER!
Anyway, I just had my first novel published this month (Life in the ‘Cosm, Renaissance Press). It’s such a triumphant thing for me, and not because of the reasons you might think. I mean, sure, yes, it is nice to be recognized for my work and brought into the realm of CanLit published authors. That is very squeeful, for true. But the core of why I am thrilled to bits is this:
I travelled through the nebula of fibro fog, which impairs cognition and memory because of the brain’s bombardment with pain signals, and put together a book that actually makes sense to read.
So much that, people. So much that.
If you meet me in person, I might be cheerful, but a bit scattered. This is because while I’m trying to speak with you, I might be having burning-curling-iron-jammed-into-my-joints pain. It might be an effort to stand and chat. I might be exhausted from not sleeping properly in months, or just feeling overly-exerted from the day’s activities. There never seems to be enough spoons to get me through even the most ordinary of days. (You can read about Spoon Theory here, if you don’t know what I mean.)
In 2014, things were so bad for me, I was sure we needed to move. I couldn’t get up and down the stairs without wanting to cry. The thought of me once run-walking five days a week to now barely being able to take steps without a cane freaked me out. I felt panic-stricken. My sleep was atrocious because of experiencing pain levels eight and nine on a frequent basis. All my activities had come to a halt. I was practically house-bound. And since I am an extrovert, the loneliness was unbearable.
One day I took out my tablet and thought I’d try a creative writing exercise. In 1998, I’d started to write about characters from a comic strip I’d drawn in the mid-90s, but never got past a few pages. In May 2014, I thought I’d try again, just as an exercise, just for me.
One chapter became four, then 17, then 23, then 30. Holy crap, I had a first draft in less than a year. I wrote everywhere: waiting rooms, buses, taxis, trains, and in my lounge under a furry blankie. I got so absorbed into the story, I’d forget my pain, at least for a few hours. And the process of being creative made me feel productive. I could do something. I could write!
The book is a comedy sci-fi. Yeah, I wrote something funny while going through all this. I think that makes me the most proud. I made myself laugh while disabled with excruciating neuropathy. My brain might have been foggy, but I took my spaceship through it and discovered my abilities again. Now I feel confident to keep writing the next books.
Anyway, I just wanted to share that. Cause it happened. For reals.
To my fellow spoonies, even through all the things we can’t do, there’s always something we can do. We can choose not to give up.