Finding gratitude, even amid the toughest battles of life with SMA
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities I’ve lived with and grown accustomed to for 34 years, there are still some days when life gets me down.
Lately, I’ve found myself in a funk because of recent medical issues. It’s not any specific issue that’s bringing me down; it’s the constant, exhausting battle to fight for my health that’s wearing me out.
Until a few years ago, my health problems didn’t consume my life. Now I desperately need a break or to live in ignorant bliss for a while. My problems vie for my attention. They demand to be the main characters of my life’s story. All I want to do is rewrite the script somehow.
Alas, just because I’m overwhelmed and, at times, burnt out by this ongoing task doesn’t mean I have permission to escape my problems. What I’m dealing with is serious. It isn’t a random sickness I can ignore for a few days or something to take lightly. It’s an integral component of my well-being that needs to be addressed.
A helpful epiphany
On a recent trip to Boston, I begrudgingly went to a new specialist for a new health issue. I was both sad and frustrated that SMA had presented me with another problem in my life. My anxiety began rising when, suddenly, a different thought popped into my head:
What if I found gratitude here instead?
I sat with those words for a minute. Initially, I thought I was going crazy. Nothing about my current circumstances was worth appreciating. Nevertheless, amid the noise inside my head, a voice of reason managed to slip in. I figured that had to mean something. So I decided to push myself and uncover one reason to feel grateful.
To my surprise, finding gratitude came far more easily than I’d anticipated. I was grateful for a reliable vehicle that took me on a three-hour round trip to Boston, for some of the most skilled doctors in their fields, and for two parents who selflessly dropped everything to take me to this appointment. Once I started intentionally thinking about it, my list of blessings flowed.
Practicing gratitude allowed me to appreciate the goodness of that day. Though it didn’t take away the negative feelings I was experiencing, it prevented me from letting them consume my life. It helped me see promise instead of despair.
Since that day, I’ve made mental lists of gratitude on every car ride to Boston. While I still feel sad and frustrated at times, the practice has reminded me that I’m also resilient and that there’s space for both feelings. Understanding that has built my mental toughness to fight the impending battles while living with SMA.
Though gratitude may not erase the hard times, it can offer a different way to experience them. It offers a shift in how I see my circumstances, and sometimes, that shift is what makes all the difference.
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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