In a few days I’ll be 24, and every year my birthday is accompanied with at least some sentimentality. I hate being sappy, and anytime I reach a milestone it’s usually followed by an emotional speech by one of my parents. At my college graduation party last December, my dad broke down in tears as he talked about how he and my mom weren’t sure if this day would ever come and how my life was a miracle.
Oh, and if that weren’t contagiously sappy enough, what music was playing in the background? Coldplay! Freaking Coldplay had to be playing just as everyone was crying — just to make sure there was enough excessive emotion in the room!
It wasn’t even an upbeat Coldplay song. It was that overtly sentimental one, “A Sky Full of Stars,” which just sounds like it was written for a movie adaptation of a John Green or Nicholas Sparks novel. If my dad’s speech had gone on any longer, we would’ve needed tissues to clean up the tissues that were being used.
Still, my birthday does make me reflect on my life now and how far I’ve come. As I’ve said in previous columns, my parents received little hope or words of comfort when I was first diagnosed with SMA. At that time, research was sparse and there weren’t any prominent SMA organizations that we could go to for support. We were on our own at the start, and the only sort of advice my parents received was to make the most of what time they did have with me.
My parents, though, weren’t content with me just getting by and wasting away. Instead they did everything they could to ensure that I could live my life and have the same opportunities as my able-bodied brother and sister and all of my friends. The bleak future that my doctors predicted for me only made me and my parents fight harder.
Nevertheless, if you had told me when I was in high school that I’d be working for an SMA website as an adult, and writing openly about my disability every week, I’d have thought you were crazy. The thought of even casually talking about my condition when I was a kid is something I couldn’t even fathom.
All I wanted was to live a normal life, and while I didn’t feel like my disability was a huge burden for me then, I also didn’t care to emphasize it, either. I didn’t want to stand out and be an “inspiration” to other people just because I have different obstacles and challenges than an able-bodied person. Now here I am, encouraging other people with SMA and other disabilities to embrace their differences and process my own journey in written form.
There’s a reason I don’t use slogans like “SMA Sucks” or “F**k SMA.” Yes, SMA has presented me and my family with many challenges over the years, and a few years ago it got to a point where I felt beaten down by it physically, emotionally and psychologically.