ankylosing spondylitis / Spoonie Challenges / Writing journey

Paddling, with a belt on

Hey, nice to meet you. I’m Michelle. I’m a novelist, a radio professional, and a disabled person. I have ankylosing spondylitis, an immune-mediated auto-inflammatory disease that’s trying to destroy my hips, seize my rib cage, and turn my spine into one lone bone — oh, and chew on the rest of my joints for snacks.

At the moment, I am not working in radio. I am lucky enough to have some arts funding, so I can concentrate full-time on my fiction.

I can also get a lot more rest.

Ah, rest. None for the wicked something-something. My prod work ethic is nigh-on pathological. I come from a family of people who work hard. A navy man who cut their own firewood. A war bride who damn near starved. A self-educated civil servant. Entrepreneurs. And, oh my God, my Mom, who returned to the work force while her children were still young, then partnered with my father in a risky and demanding franchise operation, and then looked after her ailing parents. These are boasts, not casts of blame. I am very lucky.  I love my family, and I am proud of where I come from.

I first got sick with ankylosing spondylitis — ank spond, for short — in early adolescence. Fatigue, lower back pain, the occasional red and swollen joint, bouts of pain in the thoracic spine: I dismissed all this as “growing pains” in a not terribly athletic body. I rode a bicycle everywhere I could, first a standard-handlebar three-speed and then a gorgeous sparkling blue ten-speed with the white-taped low handlebars. I blamed my back pain on the ten-speed and Newfoundland’s, uh, hilly terrain. The fatigue worsened when I started university in Ottawa, but hell on wheels, I was away from home, studying my favourite subjects, and planning out a novel. Sleep? Pfft. I’d just drink more tea and coffee, take on a part-time job, and plough on.

Yeah, that worked well. Ai.

My first bad flare came in my early 20s. I was textbook for ank spond, save for my inconsiderate lack of a penis and testicles. So I got no diagnosis beyond “maybe stress” or “too ambitious.” I can’t prove it, but I expect both rheumatologists I saw I the early 1990s in Ottawa thought, as did many, that only cis men got ank spond. My sympathetic doctor never gave up on me. I responded to treatment.

I enjoyed intermittent remission throughout my 30s, though some other health issues plagued me. In 2006, when I was 35, after years of highly disciplined getting-up-at-half-past-stupid-to-write, and reeling from sleep deprivation, I saw my first book published. The lesson: ploughing on worked. In fact, I was harrowing my health. I kept it up, and published my second book in 2007 and third book in 2008. All that time, I worked full-time in radio and then in non-profit, while raising children.

My health collapsed in 2009. Ank spond symptoms had returned, much worse this time. Serious pain and mobility issues, and then fevers and fatigue, knocked me flat. I felt very like Gregor Samsa, not active but passive, not transforming but being transformed. I ended up in hospital, where we found bone lesions that looked like secondary bone cancer — they’re benign — and the docs hinted I should, you know, get my affairs in order. Meantime, they’d contacted an orthopaedic surgeon to come see me and my scans after the weekend.

The surgeon figured out pretty quickly that the lesions meant little. He suspected a spondyloarthropy and helped me with pain management. I got an “emergency” referral to a rheumatologist.

I waited nearly a year.

Not in control. Not able to solve my problems with schedules and discipline. Not able to access any financial help. I had to get back in the workforce for my family’s survival.

It was very hard.

I received a provisional diagnosis in 2010, confirmed in early 2011. Ank spond had come to stay, and it didn’t care what I had I my pants.

Through that fog of pain and fatigue and apparently endless medical appointments, I wrote and published my fourth book. The prose and deep structure in that one are feverish; the illness left its mark. Then, slowly, oh so maddeningly slowly, I wrote and published my next novel in 2016, then another in 2021.

While I’ve always had a Luciferian pride in my brain, I now have a new respect for my body. I use crutches and take meds because I have limitations. I don’t mean the limits imposed on me by ableist design and infrastructure but the true limitations imposed by chronic disease. Now I give in to my fatigue. After all, I’m not going to write anything worth reading when I feel that rotten. Because I don’t have to hold a day job right now, I can and do rest as I require, and I am feeling better for it.

So what about my prod work ethic? I like to think it’s no longer pathological, but I can still get myself into a self-loathing knot. This is, I think, a form of internalized ableism, an intellectual refusal to consider all the factors at play while riding a wave of emotion and then trying to justify that emotion. In a perverse way, it gives me back an illusion of control. If I cannot write, my wayward reasoning goes, then it’s not because I’m ill with a complex degenerative disease but because I’m a big failure. This irrational response mirrors the battering messages of capitalism, where one’s worth is measured against someone else’s definition of productivity. The illusion of control here — that everything is solely my own lazy-arse fault — is treacherous, because of course such thinking damages my mental health.

To return to metaphors: I no longer plough. I paddle. I strap on a flotation belt, adapting to my body’s new needs, slip into the deep end, and move as I can, without the guilt, without the shame — and with a strange new grace. (Seriously. My stiff fat body looks and feels amazing in the water.)

I remain ambitious in my fiction. I will reach, lose my balance, fall on my face, get up again, and reach some more. There, I will push.

My body? I get frustrated. I get angry. I cry. The drive to write is as strong in me as the drive to breathe, and when my body can’t support that drive, it’s upsetting. I used to run from that emotion. Now I let it unfurl like a ribbon, recognize it, acknowledge it, maybe throw a tantrum to get that out of the way.

Then I rest.

And then I write.

ID: Closeup of Michele Butler Hallett, a white woman with cropped silvery-blonde hair and round black-rimmed glasses. She is dressed in a dark blue hoodie and denim jacket, and is looking at the camera and smiling.

Michelle Butler Hallett, she/her, is a history nerd and disabled person who writes fiction about violence, evil, love, and grace. Her 2016 novel This Marlowe was longlisted for the ReLit Award and the Dublin International Literary Award, and her first novel, Double-blind, was shortlisted for the Sunburst Award. She lives in St. John’s, Newfoundland. You can follow Michelle on Twitter and her author website.

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