SMA is obviously a chiefly negative condition. I don’t think that requires any explanation. However, living with this disease also has a few silver linings, which I’m always looking out for. It’s immensely helpful to keep a positive mindset and cling to the things I actually have going for me.
First and most importantly, SMA amplifies the power of my voice. Not in a physical sense, clearly, but my words — my story — seem to have a more profound impact than they would if I were able-bodied. My dad was the first to point this out to me.
He said that if I remain positive and faithful amid my visibly burdensome circumstances, people will take notice. By contrast, if my dad, who’s reasonably healthy and well off, does the same, people will probably just expect it of him. They might wonder, “What does he have to complain about?” This makes it tougher for him to touch lives in the same way.
This is why I feel so obligated to share my story. I even spoke at church, something that’s way outside my comfort zone, because I’m determined to exploit this “perk” of SMA to the maximum. It’s also why I’m passionate about writing. Any platform on which I can use my words to build up others is of the utmost value to me.
Secondly, I have “bonus room” when it comes to staying content. When you’re accustomed to major tribulations, minor adversity is barely noticeable. I’ve learned to handle pain, both physically and mentally.
My spinal fusion had the greatest impact on me. When you endure something so daunting at the age of 9, most other things seem minor in comparison. Fighting countless bouts of pneumonia and relying on others to meet all my physical needs have also given me a life-changing perspective. Someone who’s used to a more comfortable life might be severely shaken by even the slightest tribulation.
I would trade life with SMA for a working body in a heartbeat, but it does me a tremendous amount of good to focus on the positive aspects of my existence. My condition isn’t all bad, and in a way, it’s a beautiful gift. After all, the more fire there is, the more refined one can become, and I’ve experienced my share of fire.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.