The Terror and Beauty of Miracles

I had different plans for this week’s column. As I write this, I have a spreadsheet open with my column schedule. Next to the deadline date I’ve typed “TFIOS column,” which stands for “The Fault in Our Stars,” a young adult romance novel by John Green that explores how a single person or thing can change your life forever. It was my first exposure to meaningful disability representation, and, because it turned 10 years old last January, I wanted to revisit it.

But perhaps due to divine intervention or fate, I decided to first write about a different book: “The Miracles of Ordinary Men,” a novel by Amanda Leduc. I read this book way back in February, but it has haunted my thoughts ever since.

One could assume from the title that it’s an uplifting story about faith. But it’s not that kind of book — at all. A dual narrative takes readers on a terrifying journey with the two main characters, a teacher named Sam and a receptionist named Delilah, who raise questions about faith and miracles.

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The story opens with the shock of Sam’s resurrected cat in his arms after a traffic accident. Readers are then briefly taken back in time to the day Sam strangely woke up to find he’s growing a pair of wings. Next, the story returns to the present, where Sam ostensibly continues on a journey of transforming into an angel throughout the rest of the novel.

Meanwhile, Delilah’s brother, Timothy, who lives on the streets and refuses to come home, later is revealed to be undergoing a similar transformation.

In any other book, men transforming into angels might be seen as a miraculous development, but not in Leduc’s imagination. Sam and Timothy inevitably pay a hefty cost for their transformation, in terms of memories, relationships, bodies, and identities. Worse, neither Sam nor Timothy — nor readers, for that matter — knows why these men were chosen for this kind of transformation.

“The Miracles of Ordinary Men” prompted me to think about my own pursuit of miracles when I was younger. My mum used to take me to healing conferences in the hopes of finding a miracle that would make my SMA disappear. We even stayed in church late one night to be prayed for. I was so hungry that a stranger overheard my complaints to my mum and offered me biscuits.

I carried the hope of miraculous healing into my teenage years. But lately, I’ve begun to ask myself some different questions: What if the actual miracle is that I exist at all? Or that I was able to learn about the terrifying and beautiful complexity that is life with SMA?

‘The miracle is you’

“The Miracles of Ordinary Men” is one of the few stories I’ve read or seen lately that provides a different perspective on miracles. Another is the animated Disney film “Encanto.”

In “Encanto,” members of the Madrigal family are given magical gifts, which are depicted as miracles throughout the film. Yet while it cost the Madrigal family less than it did Sam or Timothy to possess gifts like superhuman strength or the ability to change the weather or prophesy, it still cost them.

For example, Aunt Pepa tries her best to keep her true emotions under wraps so that she won’t cause hurricanes. Luisa, one of the siblings, never rests because she’s constantly called upon to do chores, due to her strength. Uncle Bruno is always blamed for tragedies because he has the power to see into the future, so he disappears and the family doesn’t ever talk about him.

The magical gifts in the Madrigal family subsume each family member’s identity. Only Mirabel, the protagonist and the only child without a magical gift, sees her family as being more than the sum of their gifts. Because of Mirabel, the family realizes that miracles aren’t the most important gifts; loved ones are.

While “The Miracles of Ordinary Men” coaxed me into questioning the nature of miracles, “Encanto” reminded me of a person who had prompted me to do so long ago. I don’t remember his name, but I do remember he was a pastor from the U.S. who spoke at a church camp my family attended in Malaysia. He had the kindest blue eyes I’d ever seen and a full head of white hair. He took my hands, and as I braced myself for the usual pleas to God for healing, instead he said, “You are a miracle.”

From my hazy recollection, he later apologized to my parents for not offering enough. I don’t think any of us understood then the type of gift he’d actually given me. Like Mirabel, perhaps I must learn to see all of me as a miracle, SMA included. And maybe, as Leduc suggests, miracles don’t simply give, but also take in equal measure.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.