From trials to triumphs: 3 lessons I learned while living with SMA

I often daydream about the kind of person I’d be if I didn’t have SMA. It’s not so much fantasizing about the physical abilities I’d have, but rather the characteristics that would define me. Would I still be empathetic toward others? Would I still choose resiliency in the face of adversity? Would I still be proud of the person I am without my disability?

SMA has shaped every experience in my life and molded me into the person I am today. And in the process, I’ve had the privilege of learning many lessons I may not have learned without SMA. Though each of us experiences trials and triumphs in our lifetimes, living with SMA has presented a rare set of hurdles that ultimately offered profound insight and wisdom. So today I’m sharing three lessons these hurdles, or experiences, have taught me.

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Lesson 1: Never take anything for granted

This phrase is so often written in framed quotes and slipped into everyday conversations that it may not seem so insightful. But when you lose something dear to you, you’ll probably find the deeper meaning in these words.

In my case, having a progressive neuromuscular disease means losing many abilities I once had and didn’t know I cherished until it was too late. A couple years ago, I lost the ability to swallow, which was unexpectedly jarring.

For most of my life, I viewed food as stressful. That was because I had to eat a certain number of calories a day. I had to eat even if I was fatigued and too weak to chew. I had to stick to a strict diet due to severe acid reflux. Eating felt more like a chore than something I enjoyed. But I didn’t realize how much I’d miss and love food until the ability to swallow was gone.

Every day, I smell the sweet and savory aromas of my mother’s cooking, which I long to taste again. And as I allow myself to grieve this hard-hitting truth of being unable to eat by mouth, reality falls heavy on my chest. The message: Never take the things I have in life for granted. Instead, I need to express more gratitude for what I do have. With SMA, it may be gone too soon.

Lesson 2: Small wins are still wins

In learning how to avoid taking things in my life for granted, I discovered a deeper appreciation for the small, everyday wins. Some days, a small win may look like a meaningless task completed on my to-do list when my energy is depleted. Or it could be illustrating a greeting card for my online store. Regardless of how I define a small win, what matters is that I recognize it. From completing a task to reaching a personal goal, every achievement signifies a testament to the determination and dedication that got me here.

Life doesn’t have to be full of grand gestures and noteworthy moments to be profound. Sometimes all it takes are small wins, the culmination of one tiny victory after another, to propel me forward and remind me to act more gently toward myself. With all that life with SMA has thrown at me, I deserve to celebrate every little win.

Lesson 3: There’s always an inner strength inside of you

Though I learned this truth at a young age, I rediscover my inner strength time and time again when I’m at my lowest moments with SMA. This kind of strength is built from experiences — cold, painful, and raw experiences that remind me how resilient I need to be in the face of my adversities. It’s a realization that strength goes beyond my physical abilities and resides in my spirit. With the power of my inner strength, I’m equipped to face any obstacle that may come my way.

Though these lessons pertain to my life, they may hold universal truth for everyone. There’s power in the way we view our experiences, if we choose to embrace our challenges and find strength in adversity. By doing so, we can harness our truest potential.

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.