Finding joy in my life amid SMA challenges

When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car full to the brim with bathing suits, beach toys, and, of course, all my medical equipment for a short road trip to the beach.

There, we’d meet up with my aunt, uncle, and cousins and go fishing and swimming, and we’d dig gargantuan holes in the sand thinking we’d eventually reach China. But my favorite part about those beach trips was always sitting at the shoreline and playing with a bucket of minnows in my lap.

At this point, you might be wondering why I willingly chose to play with minnows in the first place. To be frank, so am I. My parents, on the other hand, didn’t think anything of it. They’d take a sand bucket into the ocean for me, catch as many minnows as they could, then bring it back to my lap so I could watch and play with them. So while the others were digging their way to China, I was busy reaching my hand into a bucket of salty water and holding minnows in between my fingers.

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I recently asked my mother how my obsession with minnows came about. When she couldn’t remember, I asked why she believed I chose minnows over sandcastles and digging. And her answer was simple: “Because it brought you joy, Alyssa.”

Throughout my life, I’ve made it a point to pursue joy, regardless of whether I was a little girl at the beach or a woman trying to navigate adulthood with a disability. With SMA, I’ve faced more challenges than I care to admit (and have accepted the fact that there will be many more to come). And in learning how to cultivate joy in my life, I realized it doesn’t bloom from a life without pain and challenges. It blooms in spite of these things. Joy isn’t something that magically falls into my lap. It’s there waiting for me when I take the plunge to find it.

Truth be told, understanding how to cultivate joy doesn’t mean I’m always the most joyful person. Some of the realities of SMA — illnesses, weakness, ableism, lack of care, and so on — can weigh heavy on my heart. They can promote feelings of sadness and defeat or anger and frustration. They can negatively affect my quality of life.

But in my learnings, I discovered that living a joyful life doesn’t mean I always have to be programmed to be joyful. Instead, it means I’m still able to pursue joy in spite of my hardest moments. Knowing this has better equipped me for life with SMA.

Despite the strongest urge to call my childhood self an “absolute weirdo” for finding joy in playing with minnows on the beach, I’m proud of her. She experienced a heck of a fight her first few years of life being in and out of hospitals. Yet she never stopped pursuing joy. Somewhere deep in my soul, she lives on today.

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.