Never Tell Me the Odds

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.

Yet as I’ve also written about, things got better and I wouldn’t be where I am had I not endured those struggles. As crazy as it sounds, SMA has given me a unique perspective on life, and I wouldn’t trade my life for any other. I think of all the people I’ve met and the experiences I’ve had, none of which would have happened if I didn’t have a disability.

Who knows, if I was able-bodied I may have been the biggest idiot to ever walk the Earth. I believe God made me this way for a reason, and while it’s difficult, I encourage others with disabilities to develop the same kind of mindset. It saddens me when I see anyone who’s capable of so much more than the life they’re living, but who use their circumstances as an excuse to remain stagnant and unsatisfied.

The odds of me living the life I’m living today were as slim as could be when I was first diagnosed. Fortunately, though, my parents took a Han Solo approach to the situation, strapped into the pilot seat of the Millennium Falcon (figuratively, of course) and said “Never tell me the odds!”

Now that I’ve compared my parents to Han Solo on the internet for all to see, I think I should be excused from any kind of punishment ever again.

***

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.