My journey writing an LGMD inspired novel…so far.

Home / My journey writing an LGMD inspired novel…so far.

I’ve been living with Limb-Girdle Muscular Dystrophy R2(2B) for longer than I can remember, but today I don’t want to talk about the slow loss of my mobility over decades, or even how I struggled to determine what specific disease I had when I was a young man. It’s also not about how I managed to be successful in my career as the progression continued, and not how I came to accept most of the cards I’ve been dealt with. With the help of my family, friends, previous employer, and my employees I stood a fighting chance. My story would take too long to narrate today, so let me rather tell you how I created the main character in the manuscript I’ve been working on for the past six years. His name is Alexander de Swardt and he wasn’t so lucky in having the support structure I had. In a strange twist of fate, his LGMD was cured completely with unapproved gene replacement technology when he was younger. He could run and walk again after this miracle. Just imagine how he would have felt. Then a decade or so later his good fortune unexpectedly reversed and the decline in his mobility was even faster than the first time around. All of this happened while he had to navigate a science fiction/horror setting with a speculative political and historical background. A rather unearthly trip…

But you’re not expecting me to give too much of the story away, are you? So, back to my own life. After I was medically boarded in 2014 I decided that I had to create this novel. To keep me busy? Cheap therapy? Who knows? The problem was I had no idea how. I’m Afrikaans and although I love my first language I knew from the start I was going to create and write this novel in my second language: L’anglais. I love reading a good book now and then, but I’ve never been an avid reader or even interested in creative writing. I mostly wrote weird essays in high school inspired by a band called Marillion. Fish’s Marillion. In the nineties, my English teachers were mostly confused and unimpressed by my abstract stories and poems.

Many years later, I became a legal professional. I wrote legal opinions, drafted contracts and affidavits entangled in overburdened legalese and archaic formal wording, but in 2009 I broke some of my old molds and dabbled in music reviews online for an old friend from varsity days, Johan Vos. Purely for the fun of it. My day job became too hectic, and I could only pick it up again when I retired. From 2015 to 2020 I wrote reviews and conducted interviews for a website named Watkykjy (my friend Gifford Peché’s blog) and that may have improved my Afrikaans (albeit more slang induced) writing ability. I’ve always had an affinity for poetic and meaningful lyrics when I listened to music, but taking on something more substantial was never going to be an effortless roll in the park. In October 2015 I traveled to Hermanus in the Western Cape to take a break and cure my cabin fever. With all the rainy weather that time of the year I started to type. Something. Anything. And so began the journey of a thousand words. 85000, more or less.

It took me longer than expected. I enjoyed the music scene, invested passively in the stock market and got into the habit of not overstressing my muscles, and kept my good spirits as high as possible. I never rushed the writing process and it was a productive way of dealing with a lot of repressed emotions, so it had to come naturally or not at all. I thought about the characters and plot constantly in the background and made notes on my phone. I researched my characters, the plot and back story, and also the rabbit holes I wanted to delve into. I had no deadlines. Bad idea! Because of my disability, I couldn’t sit and type at a desk for hours on end. During my working life, I worked too damn hard, for way too long every day, and I had to climb mountain after mountain full of nerve-racking obstacles in the workplace. I overburdened my upper body muscles so much that I began to develop anxiety and breathing issues. When I stopped working completely it improved with leaps and bounds, but I still had to be careful with my muscles. One or two hours a day sitting upright and typing away was all I could commit to in 2016. I asked Johan Vos, a sub-editor for a local newspaper back then, to give his impressions on my first draft. He pointed me in the right direction but I knew I needed someone in the field of publishing to give me more guidance. Through Gifford Peché I met Samantha Miller in April 2016. She’s a researcher and lecturer in the field of publishing at the University of Pretoria and provided more industry-specific insight and assistance. She also introduced me to Henk Breytenbach in 2018. He’s a published South African author with titles like Moordlys, Kodenaam Icarus en Kroonwild under his belt.  We became friends and they read and commented on my second draft. Their valuable input convinced me that I could write something I can sell, even if it was only to a handful of people. Samantha told me about a Facebook group called The Dragon Writers where independent authors share their ideas and assist each other. After a year of just reading their posts now and then, I took the plunge and approached one of the professional editors and award-winning authors on the group Nerine Dorman (The Firebird, Sing down the Stars). She takes on a small number of clients and eventually assessed my manuscript. She taught me how to write fiction for the commercial market and also did a copy-edit of my manuscript. She’s been an online mentor and with her guidance, I learned skills I never would have imagined back in 2015. I mostly do things at my own slower pace, but it is empowering when someone with proven writing AND editorial experience believes in your work.

Typing on my old laptop is always a challenge, but I adapted my writing position so that it rests on my stomach while I’m lying on my bed. I rest my head on a wedge pillow. It’s not ideal, but I can write a little bit longer than before.

Recently, I approached a few local publishers and overseas literary agents, but no deals were flung on my table yet. Haha! Nothing prepares you for rejection like having LGMD. I viewed this project as more of a learning curve anyway, and I always had in mind that I would self-publish. I think I like the control it gives me over my projects. The overall expenses of editor’s fees, graphic design, and formatting I regard as school fees anyway. The marketing part is just something I will have to learn more about. During the past few weeks, I’ve been discussing with Gerda Brown from the Muscular Dystrophy Foundation of South Africa (MDFSA) and other members of the LGMD community how we could go about raising money for research and potential treatment of LGMD, now but also in the future. It became clear to me that an obvious route is to self-publish my novel (when it’s ready for the market) and then to donate the first three months of proceeds to any such efforts. That would be the cherry on the cake for Alexander de Swardt and his journey wouldn’t it? I’ll continue to tinker with this website and get an e-mail list up and running again, but I also arranged for one more copy edit with UK-based author, artist, and editor Cat Hellison to make sure there are no mistakes that slipped through. So there’s more work to be done before this project of mine can see the light of day.

Keep on rolling!

(The above sketch of me is a Rynier Prins original: https://linktr.ee/rynierprins)

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About Author

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Marinus Mans

Writer, blogger, investor and music lover.

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