‘Meant to be’: SMA and ‘The Nightmare Before Christmas’

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by Halsey Blocher |

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Tim Burton’s “The Nightmare Before Christmas” is a family favorite around here, with my brother being the biggest fan of us all. He even dressed up as the movie’s main character, Jack Skellington, for Halloween one year.

This beloved stop-motion animated movie has become a pop culture icon, but one thing the world can’t quite agree on is whether it’s a Christmas or Halloween movie. Let me explain why.

Although Jack is treated as a celebrity in Halloween Town, he’s grown discontented with his life. But he soon finds renewed excitement with his discovery of Christmas, which he decides will be his new holiday. Jack gets his friends on board with his plans and attempts to give Santa an unwanted year off by taking over the job of spreading Christmas cheer.

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Despite his best efforts and good intentions, everything goes terribly wrong. But in the midst of this candy cane-covered nightmare, Jack discovers he doesn’t need to be the king of Christmas because he’s already loved for who he is. And he’s proud to be the Pumpkin King!

We love the movie so much that we watch it for Halloween and Christmas. But instead of debating the right time for this movie, I want to introduce you to some of the characters. Maybe you’ll find that they’re a bit like the SMA community.

‘What does it mean?’

Jack is a curious fellow who shows interest in what he’s never seen or experienced. Upon learning of the existence of Christmas, he begins experimenting to better understand this unfamiliar holiday and learn what it means.

Perhaps Jack would be a good SMA researcher. I imagine many in this profession also started out tinkering with their own experiments before pursuing the field. Combined with a desire to help people, the curious and intelligent minds of these scientists have worked to uncover the secrets of SMA, and they’re learning more every day.

When I was diagnosed with SMA in 1999, medical professionals still knew very little about the disease. The information required to diagnose it with a genetic blood test instead of a painful muscle biopsy had been identified only a few years prior, but even then, they didn’t understand what the collected data meant beyond a confirmed diagnosis. The full implications of that information and how it could be used would come later.

In the years since, SMA research has developed rapidly, leading to the invention of three FDA-approved treatments, new medical devices and technology, and the knowledge to provide better care to people living with SMA. And with everything we’ve learned, an SMA diagnosis isn’t as scary anymore. This disease is still incurable, but having treatment options provides hope for a brighter future.

Before you become a mad scientist

Wheelchair users aren’t usually mad scientists like Jack’s neighbor, Dr. Finkelstein, who loaned Jack equipment for his experiments — not that I’m aware of, at least. But SMA patients, families, and caregivers can also contribute to expanding understanding of our rare disease.

We can join clinical trials and research studies, but not everyone is interested or eligible for them. One of the simplest ways that anyone can help is to communicate our experiences with SMA. By sharing our tips, tricks, observations, ideas, and creative solutions with other community members and healthcare professionals, we can advocate, inform, and support as we continue learning about not only the science of SMA but also how to live well with it.

Love heals like nothing else

For those of us with SMA, perhaps one of the most relatable characters from this spooky ensemble is Sally. A nod to Frankenstein’s monster, Sally is Dr. Finkelstein’s creation that he made to be his custom companion. But that’s not her whole story.

Sally is surely no stranger to being poked and prodded with medical instruments considering that she’s spent much of her life in a laboratory as a test subject. Even when she leaves the lab, she must frequently stitch herself back together until she eventually returns when her supplies are no longer sufficient for her body’s needs.

Sound familiar? People with SMA spend plenty of time in hospitals and doctors’ offices for routine appointments and testing. We do our best to manage our health at home, but when our bodies need additional support, we sometimes must concede to a another (potentially longer) visit and more testing. Like it or not, we’re great science experiments.

Sally also has another quality anyone might identify with: a loving heart. She always cared deeply for Jack, and once he saw that and discovered he also cared for Sally, they healed each other in a way that science couldn’t.

I hope we all search inside ourselves for a piece of this love that Jack and Sally have. We don’t need any tests that tell us what love means to know it has healing powers. It might even be just what the doctor ordered.

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.

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