I’m sure many of you will read that title and think: One too many cupcakes, Cait? Is all that sugar affecting your perception? Nope. It’s true. My first entry into feeling in community with a disabled person was when I bonded with Noola Quirk from Life in the ’Cosm.
Okay, yeah, I know it seems odd. Allow me to clarify.
About eight years ago, my chronic pain levelled up to a place where I needed to walk with a cane. It didn’t help much because my hip, leg, and ankle pain were bilateral. So, I ended up weaking one side of me while having no real stability when I moved around. I fell or nearly fell…a lot. There was also this debilitating fatigue. I could barely do anything without needing to rest for days afterwards. I couldn’t work. I rarely socialized. I was alone, and for an extrovert that meant I lived in my own private hell. After I was diagnosed with fibromyalgia, I thought, “Great. I already have Celiac disease, which most people think is made up. Now I have fibromyalgia, which most people also think is made up. Go me.”
In 2014, I lay on my couch under a fuzzy blankie, picked up my iPad, and decided to try a creative writing exercise. I was far too sore to do anything else. So, I brought to mind a comic strip I messed around with in the mid-90s, and thought I’d write about a snouty green man, his sentient houseplant homemaker, and a pet who resembled a fried egg. I dived into absurdist humour with these whacky aliens, and made it my goal to be as silly as I could. Afterall, this was just for me. Nobody else would ever read it. I type out some words, and it took my mind off my pain.
I had no outline and was pantsing the entire thing. That’s why it came utterly to my surprise when this glittery being dressed in a riot of colour rammed into my protagonist because she couldn’t properly stop in her roller boots:
She sat up and took off her silver helmet. A fury of scarlet hair fell in disastrous array all over her face. Her skin was powdery pink and she wore an orange and blue striped dress with electric blue tights. The roller boots she had on were as red as her hair and imbued with glitter. As she parted her fringe, Virj noticed her nails were covered with aqua polish that also had glitter in the varnish. She was a living and breathing explosion of colour, like Sonny’s fairy cakes.from Life in the ’Cosm, Chapter 3, by Cait Gordon
Again, I hadn’t planned on her arrival. So, here was Noola. She sounded fun. After a few chapters, my subconscious took over and slapped me in the face. This character’s roller-boots weren’t just for kicks:
She blew a lock of hair out of her right eye. “It’s a mobility issue that comes and goes. I have good days and bad days. On bad days, I wear my skates. So, can we—”
“Hold on. What kind of mobility issue?”
“It’s a rare nerve condition the women of my people get sometimes, called Xareg Syndrome. There’s no cure and it’s not fatal, but we lose the use of our legs by the time we’re about 30. I’ve got another good six years left, maybe more, if I’m lucky.”
She said this in as cheerful a tone as she’d always spoken. As if she were talking about the probability of inclement weather, as a person who didn’t mind inclement weather.From Life in the ’Cosm, Chapter 10, by Cait Gordon
Wait, what? A nerve condition? I could make up anything I wanted in this world, and I created a character who suffers from nerve pain? Someone who’s chronically cheerful and has a lust for life? Someone who’s at the beginning of her disability journey and hasn’t figured everything out yet?
I found myself writing just to find out how Noola would respond to this outrageous adventure she’d undertaken with Virj. Her attitude was something I envied, but she was also vulnerable and scared at times. Her fears never stopped her, though, and I noticed myself being influenced by her. Noola Quirk reflected my own spirit. I, too, was eccentric, extroverted, frighteningly cheerful, and feisty as heck. She encouraged me not to give up, even if I felt terrified about the future. Back then, I’d given in to ableist narratives about mobility devices being “the end” of all things.
But Noola didn’t feel that way. In her mind, mobility devices should be sparkly and have flame decals on them.
It took me a good while, a year in fact, after the book ended up published by the wonderful Presses Renaissance Press, for me to buy a mobility device of my own. One that would work both my legs equally, and one that had a seat, so standing for longer periods of time would never get in my way. I bought a rollator. I put flames on it. I named her Noola.
And when fellow SpAN contributor, prolific author, and close friend Jamieson Wolf saw the rollator, he said: “I’m glad you named her Noola…because Noola would roll.”
Since I bonded with that fictional character, I started this multi-contributor blog, met so many awesome people, entered into Disabled culture and am constantly learning new things from it, and this September, the multi-genre, own-voice anthology, Nothing Without Us, will be published. I’m now in community with actual humans, I’m a disability advocate, an author, an editor, and I’m thriving.
But it all started with a little alien with skates named Noola.
I owe you so much.
Keep rolling on, girl.
Cait Gordon is the creator and editor-in-chief of the Spoonie Authors Network and is author of Life in the ’Cosm and The Stealth Lovers (October 2019). Her short stories have appeared in Alice Unbound Beyond Wonderland (Colleen Anderson, Exile Editions), We Shall Be Monsters (Derek Newman-Stille, Renaissance), and Space Opera Libretti (McNett and Rossman, 2019). Teaming up with sensitivity editor Talia C. Johnson, Cait is co-editor of the Nothing Without Us anthology, a collection of short stories that feature protagonists who identify as disabled, Deaf, neurodiverse, Spoonie, and/or who manage mental illness.