Accessibility / chronic fatigue / chronic pain / Getting support / Spoonie Challenges / Writing journey

Dickie Boy and a Sense of Inevitability

I love genealogy, especially since I discovered my late father descended from English kings, including Richard III—although I did have to delete his father’s line in 2012 (see article from The Guardian). This is relevant because my father’s family includes a lot of people with scoliosis, just like Richard III, or as I call him now, Dickie Boy.

Two of my father’s aunts were in wheelchairs most of their lives. (On a totally separate note, I wish I had those Victorian wheelchairs now!) When I was twelve, I started bending to the left, my waist appearing to grow in only one direction.

My mother rushed me to see the local doctor. He had me walk around the office twice, watching the way one foot dragged a touch and the other made me lurch slightly. He didn’t send for x-rays or scans; he didn’t even have me stand near him to look at my spine through my skin.

He just watched me walk and decided that one leg was longer than the other by an inch or so. “Get her a thing for her shoe,” he said. Those shoes were over $100 in 1973. We didn’t get them.

We left the farm for a city job a couple of years later. I was now starting to lose my breath when I bent over, as my spine torqued my ribs into one lung.  We finally got a doctor to agree to x-rays. Three doctors simply looked at my file, assumed the first doctor had done the tests and refused to waste the time and effort for nothing.

My legs turned out to be the same length. It was my back. It twisted and turned like an overpass on drugs. Scoliosis. My mom gasped, then tried to hide her fear. That was what Victoria had. What they say she died of, though more likely it had been pneumonia, brought on by the bones constricting her lungs.

Which was what this doctor said to expect.

The doctor told my mom that I’d be in a wheelchair by 35, sooner if I put on weight. I would never have children, it might kill me to even try, and I could forget a normal job.

This led to two things. First, a determination to avoid that fate, and thus weighing 98 pounds at my wedding when I was 40. I was 45 before using a cane and 52 before admitting I needed a wheelchair part of the time. Not because I didn’t require one, but because I was afraid of what they represented. Second, it led to an ill-conceived spinal fusion surgery in 1985, which had to be redone five years later and is directly responsible for my frequently needing a wheelchair now.

Fate or destiny?  That’s for an upcoming article.

So, what does all of this have to do with writing? Turns out, a hell of a lot.

I gave up on my body at 14 years old. I wore a body cast from groin to chin for two six-month periods, followed by leather and steel cages that covered the same area and attempted to force the bones to grow in a particular direction. I had palm-sized blisters on both hips and my ribcage for six years. I was basically exiled from childhood, had no friends, and attended no parties.  It all achieved . . . nothing.  At eighteen, they fused 70% of my spine into one long bone.

But I had a rich and vivid life in my head. One where the world was saved by spunky young women and their cats, where aliens were tricked by clever girls and gave up their dream of conquest. And so much reading!  Whole new universes of pen and paper opened up before me. I told stories to my little sister, my cat, my dog, anyone who would listen.

And at 16 years old I girded my mental loins, strapped on my spear of destiny and sent a book proposal to Dell for a Star Trek novel.  They liked the idea, but pointed out pesky copyright issues and refused it.

It was too late for a rejection to dampen my spirits; I’d gotten a response. Any response. And it validated me for the first time since I was twelve. I was a writer. So, I wrote. I threw out all my ideas based on someone else’s characters and wrote science fiction, fantasy, and dystopia. I created men named Dog because life was easier if no-one expected anything from you, immortal elves who always looked sixteen and got their lovers arrested for child porn—anything I could dream up went into a collection of binders.

Until I  thought I was in love with a guy who was jealous of the time I spent alone. Jealous of my male characters. I gave it up for my relationship.  I threw out most of the binders. And a couple of years later threw him out for my own mental health. Lesson learned!

It still took years to start writing again. Painful, unfulfilled years as a tax accountant and a shop girl. But I found my way back, even as my spine deteriorated, my pain grew from “sometimes” to all the time, and my job ground my spirit into the dust on a daily basis.

The stories in my head have always been full sense-surrounding movies in 3D and with smell-o-vision. So, of course, I tried to break into film. A crooked, painfully shy, woman who was usually doped up on pain meds. You’d have thought I’d fit right in. But alas, Ottawa is too far from Hollywood.

I took a few writing classes and heard of this thing called a con. I met people who took me seriously, wheelchair and all. People who sat up all night in a hotel room with cheap scotch and brilliant story ideas, which we all forgot the by morning. I found my tribe.

I met other authors and learned that we all struggle—it wasn’t just me. I met editors who loved my stories. I met people I admired and longed to be one of them.  Eventually, I saw my name on a book cover.  A real, paper, honest-to-gods book. Then I sold a story to an anthology. And another.

I dug out my old novels, reread them, and cringed so hard I hurt my back.

But here and there, hidden in the purple prose of my youth (why on earth did that editor at Dell encourage this?) I found a few ideas worth exploring.  Eternally 16-year-old elves. Real magic struggling against all of the iron in our modern world . . . and slowly winning. A world twenty years after the final big war.

Writing lets me murder someone without jail time.  It lets me fall in love over and over and over. It gives me a way to work out my fear of the future, my embarrassment and shame, when I need help opening a door or getting up off of a chair. It helps me figure out what I really think and feel when my head and heart are too busy and too full and too confused to know.

Of course, that doctor wasn’t entirely wrong. My back cannot be fixed, not by surgery, not by exercise, not by drugs. It’s deteriorating at both ends of the fusion, crumbling and pressing on my spinal cord. I will end up in a wheelchair. I’m already using motorized shopping carts and own a wheelchair for cons and such. I can’t stand up more than 10-15 minutes or sit without pain for more than a couple of hours. I can’t work because there are no jobs where I can sit, walk, lie down, or go home as needed. Or where I can take my cannabis oil and morphine and not get fired.

But I have chosen not to be angry or bitter. Because, actually, my life rocks. Twenty years with a man who loves me enough to support this expensive writing habit, to push my wheelchair at cons he didn’t want to go to, and to do most of the household chores without becoming angry or bitter.  I have several published books and the world’s most amazing friends and accomplices, er, fellow writers. Sure, my back hurts, sure I have to cancel at the last-minute sometimes, and sure I still get idiots acting like I’m stupid or invisible in my chair.

But I love my life. I love being who I am—pain, wheelchair, endless doctors and all.

Because I write.


Laurie Stewart

Laurie Stewart

Laurie Stewart lives on a hobby farm in rural Ontario (Canada) with the love of her life, a small black cat, and a huge white Yeti who thinks he’s a lap cat.

She writes medieval fantasy, urban fantasy, and gritty YA dramatic fiction. As a proper renaissance lady, she also paints landscapes, is active in food preps for the zombie apocalypse, and loves gardening.

Lastly, because she refuses to let it define her, Laurie is a proud spoonie. She battles chronic migraines and debilitating pain from a degenerating spinal fusion on a daily (sometimes hourly) basis. She usually wins.

You can follow Laurie on Twitter, Facebook, and her website.

 

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