This is my last post of the year for SMA Awareness Month, so I wanted it to be something impactful. And I got to thinking about the parents of kids who have recently been diagnosed, or the teens with SMA who are trying to figure out what their future might look like. And I just want them to know that they will be okay – that it’s possible to not only survive, but to thrive, with SMA.
I’d start, of course, by not downplaying things. Life with SMA will, at times, be hard. I never want to sugarcoat things! Living with any disability is hard, because you’re existing in a world that is still very much not built with you in mind. SMA specifically is a rare disease – that means in addition to having to fight and advocate for yourself out in the world, you have to do so in medical situations, too. Healthcare practitioners are not always familiar with SMA, or in some cases, might be flat out wrong about what they think they know. Advocating for yourself or for your child is hard, and can be exhausting, but it is worth it.
Advocating for my needs is what got me into general education classes from kindergarten on, and made sure that my educational needs were met in a way that worked for me and my disability. It’s what got me into Carnegie Mellon, living in the dorms like everyone else and away from my parents for the first time ever. It’s what, ultimately, led me to feel comfortable enough with myself and my disability to share my life here, with all of you.
But even aside from those successes – I have a full, vibrant life. I have friends, both old and new, I have hobbies, I have a job, and I’m happy. Do I sometimes get annoyed and frustrated about the things that SMA keeps me from doing? Absolutely. But those things aren’t what occupy my mind the vast majority of the time. It’s the jokes with friends, the kisses from my dog, the coffee I drank, the meal I ate – those are the things I spend most of my time thinking about!
Life with SMA looks drastically different now than it did even five or 10 years ago, too. There are now multiple treatments available to slow or stop the progression of SMA, and more and more people are having access to those treatments at a younger age. The younger you are when you start treatment, the less time your symptoms will have had to progress, and the less chance they ever will. It’s hard for me to explain how huge that is for the future of SMA!
All of this is to say that it is completely possible to both survive and thrive with SMA. Life might look a bit different than expected, and there may be challenges that others don’t face, but it is still a life worth living, and even more than that – a life that I’m happy to live. And I think that’s the most important thing I want people to know – that my life is, overall, happy and fulfilling, and that I’m happy.
