Rebranding our motivations to focus on moments of joy this year

As Mom and I browsed the bookstore searching for gifts and travel guides for our summer vacation destination, we amused ourselves with the wide selection of books on offer, most of which we would have gladly purchased. Among the myriad titles and genres, we noticed one topic kept popping up. Nearly everywhere we looked, there was some variation of “101 Things to Do Before You Die.”

After we returned another one to the shelf with a chuckle, I commented that I could have written a better title. Although the pages were surely filled with ideas for grand adventures, breathtaking sights, and other ways to get the most out of life, I felt it could benefit from some rebranding. Whether intentional or not, it was preying on humanity’s fears of death and poor health to boost sales, which placed it in the small category of books I wouldn’t buy.

There’s nothing wrong with taking steps to pursue fulfillment, purpose, and happiness, but we should be mindful of how we market these strategies. This well-intended approach strikes me as being not unlike the commercials I’ve written about that dig under my skin when they use scare tactics and stigma to encourage viewers to take better care of themselves. Fear can be an effective motivator with positive outcomes, but that doesn’t make it right, justified, or healthy. I’d rather be motivated by goodness and enjoy the process of reaching my goals.

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A different take on mortality

Being reminded of our mortality does have a way of driving us to improve our well-being and relationships. But what about those of us who can never quite forget the impermanence of this life? I was diagnosed with SMA as a baby and was not expected to survive beyond the age of 3. This knowledge never dampened my zest for life or diminished my hope for a bright future, but from a young age, I’ve had an above-average awareness that we never know how long we’ll have on earth.

Possessing such knowledge inevitably affects our perspective. For my family, this means we’re more intentional about prioritizing togetherness, setting aside time for things we enjoy, seeking the positive, and appreciating our blessings.

We don’t do any of this because we fear death. Quite the opposite. These practices add value to our lives. We know that mortality is a part of everyone’s journey, but we can acknowledge that without dwelling on it or allowing it to overwhelm us. Instead, we choose to focus on faith, unity, and joy in every form.

Finding joy in darkness

While my life has been full of happiness and good memories, there also have been times of extreme hardship. My short prognosis proved to be incorrect, but I’ve still come painfully close to dying.

One such time was during a hospitalization at the age of 13. Teams of doctors, nurses, respiratory therapists, and surgeons employed every machine, treatment, and resource they could to keep me alive. My mom stayed faithfully by my side, ensuring that her daughter had the best care available as family and friends joined her in prayer. It would take a miracle for my body to survive this battle against infection.

Recovery was a slow and uncertain process, but even in the midst of this, there were still moments of joy. I found some in the books my family read to me while the healing process continued. The spoken words were a comfort and a distraction that I clung to during moments of lucidity.

The selections usually covered works of fiction that allowed me to temporarily get lost in worlds of imagination. Faced with the very real possibility of death, no one would have considered reading me a book about how I ought to be spending what might have been my final days. It was much better to simply cherish the time together.

What’s the source of your motivation?

This time of year, many of us are on the verge of implementing new resolutions. We might even buy books to help us achieve those goals. But before we dive in, I’m going to challenge us all to pause and ask ourselves why we’re doing it. What’s motivating us? Are we afraid of something, or will making a change bring greater joy to our lives?

Whatever you answered, remember to give yourself grace through this process. Life isn’t always easy, and sometimes, it’s scary. But it’s also beautiful, magical, and full of wonder that’s unmatched by any fairy tale. Reader, I hope your life brings you the kind of joy you need to fuel your soul, and I hope you never forget to look for it in all places.

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.