Welcome to our first series of 2020: Internalized Ableism. In the upcoming weeks, a SpAN contributor will share about how ingesting ableist narratives has affected their life. So, a general content note about this series is that it includes themes of internalized and externalized ableism.
For decades, I’ve managed some type of chronic pain. I even recall how my legs ached as a child. At 18 years old, I fell and injured my lower back and hip. For a time, I had to use a cane. I’m sure you can imagine the stares I got while taking public transit. I’ve always looked young for my age, so cue the snide remarks and disbelieving glares. The message had been clear: You’re too young to need a cane. It seemed that canes were only for old people. Anyway, I went to physio, put away the mobility aid, and carried on.
In my 30s, something was up with my wrists and spine. Everything hurt or would go out of joint in weird ways—one hip would go forward and the other backward, for example. I couldn’t keep my cervical spine aligned for more than a few weeks. And even in treatment, my muscles would spasm because of the inflammation all over my spine.
“Get an ergonomic work setup. Exercise regularly. Build some muscles.”
Made sense to me. I got physically stronger and ran regularly. By the time I was 40, I was in the best shape of my life. Well, it looked that way on the outside because of my muscle tone. On the inside, I was nearly tormented with pain. However, I kept exercising. I was still young. It was important.
Then age 42 hit. I couldn’t fake my way through this routine anymore. Searing pain that felt like vibrating hot curling irons had been injected into my ankles, knees, elbows, spine, and neck…What the heck was this? I couldn’t run anymore. Heck, I could barely walk! After a pressure-point test, I was given the diagnosis of fibromyalgia. An x-ray showed some osteoarthritis as well.
“Movement is important. You need to exercise.”
But I’d regularly get injured from the exercise routine I’d been doing for years. Physio costs mounted. Eventually, I decided to buy a cane. It helped me move somewhat, but didn’t feel stable. I’d fall because my pain was bilateral, not just on one side of my body.
“You’re too young to use a cane,” I heard all the time.
“I can’t walk without it!”
“Just exercise more!”
My world became smaller and smaller because I couldn’t consult for my job anymore, or see friends, or attend events. Experiencing 8/10 or 9/10 pain levels had become the norm.
“If you don’t move, you’ll end up in a wheelchair!”
That terrified me. I feared it would have been the end of life as I’d known it. In my despair, I grabbed a tablet and decided to do some creative writing to take my mind off my very horrible future. I didn’t know it at the time, but those writing sessions would become Life in the ’Cosm. My method had been to “pants” that book (no plotting), so I had no idea what would come next. Then I created this whacky cheerful character on roller-boots named Noola. She looked like a rainbow incarnate with all her colours and glitter, and she was feisty with a lust for life. Without overthinking it, I decided her boots were mobility devices to help her get around. Noola would be a disabled character with a neuropathic condition that might leave her without mobility in the near future. And she was fiercely unstoppable.
Creating Noola gave me hope, but at the same time, when a disabled friend gently suggested I try a walker with wheels, I said no. My reason? It would make me feel old. My friend tried to convince me how it would help me. I still said no. (Oh, Past Me…really?)
Life in the ’Cosm got published. With it came opportunities to attend conferences to commune with authors and readers, and to sell books. At my first conference, I nearly wept from pain from standing in line waiting to get into a panel session. At one point, I found a window sill and sat on it. Standing had become my greatest enemy, and my cane didn’t cut it. I wished for a chair I could have with me at all times.
Several months later, I did a fun geek craft con, and sitting near me was author Madona Skaf. She noticed I used a cane and insisted I try her rollator. I resisted. But lemme tell ya, Madona was not going to take no for an answer, so I finally gave in.
OHMIGOSH, WHAT IS THIS MAGIC ENCASED IN METAL???
It felt so easy to move! So stable! And it had a seat!
I’d like to tell you I bought a rollator the following day, but I didn’t. I gave into family pressure and fear about having to depend on it for the rest of my life. (Gosh, this seems so silly now because I’ve never stopped wearing glasses. I mean, I’ll depend on them for the rest of my life!)
Yet again, months later, I was struggling with my cane, trying to walk home, when I met a couple I didn’t know. The husband used a mobility scooter they’d just bought, and they both talked about how much he loved it and wasn’t housebound anymore. There was undiluted joy on the man’s face.
I thought, Okay, this is ridiculous. I’m not living like this anymore.
I told my husband I was getting a rollator and to heck with having no life. We went to the shop the next day. Within seconds of my trying a slick black rollator, my husband was impressed.
“You’re moving so well!” he said.
And that was it. We bought the rollator, I slapped some flame decals on her, and called her Noola. I used her for the first time at Ottawa Comiccon in May 2017. At the Renaissance vendor table, author Jamieson Wolf was so happy to see me with my mobility device.
“I’m so glad you called her Noola. Because Noola would roll!”
I almost cried. Noola used her roller-boots shamelessly. And when she needed to upgrade, she did. Nobody could have told Noola she was too young to need her aids. She would have cursed the air blue!
The summer I got Noola the Rollator, she helped me walk up to 4 km. We did four kilometres with the rollator when I couldn’t walk up my crescent on my own power. Medical professionals did say how important it was to move when one has fibromyalgia. I would call that movement, wouldn’t you? And attending events became so much easier. I always had a seat with me!
Now I’m 50 and still get told, “You are too young for…”
You know what I say to that?
“Disease and disability don’t discriminate when it comes to age.”
That’s my supremely polite way of telling them to go BLEEP themselves.
So, yeah, it took me a good while to get to where I needed to be, but right now, this is how I roll.
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. Her short stories appear in Alice Unbound Beyond Wonderland, We Shall Be Monsters, and Space Opera Libretti. Teaming up with sensitivity editor Kohenet 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. You can follow Cait on Twitter, Facebook, and Instagram. She also has an author website, and if you need editing services, visit her biz, Dynamic Canvas Inc.