So, I’ve mentioned a few times now that I have SMA – Spinal Muscular Atrophy. I thought it would be a good idea to tell you a little more about SMA and how it affects my life. Since I’ve had SMA my whole life, I’m also including some throwback pictures of me as a kid for fun!
SMA is a genetic, neuromuscular disease. There’s no family history of it, but both of my parents are carriers of the genetic mutation that leads to SMA, and both my sister and I have SMA. It basically affects our muscles, which are a lot weaker than a normal person’s. My brain tries to send the message to my muscles, but the message gets really weak as it travels from my brain down my body, and so my muscles’ response is also really weak. Generally speaking, the lower down on my body the muscles are, the weaker they are.
I’ve never walked – I’ve used a power wheelchair since I was 3 years old. I need help with things like showering, getting dressed, and getting in and out of my wheelchair. I also use a feeding tube at night to help me get enough calories (which is a whole other story for another post), but still eat normally during the day.
Even though there a lot of things I can’t do alone, I have really lived my life trying to be as independent as possible. I went to college and lived in the dorms on campus, which was a huge adjustment for me, but I’m so glad that I did. I have a job and work full-time while also working towards my master’s degree. I go out with friends to restaurants and bars, love to travel (although it requires a bit more planning and preparation), and generally try to live my life as “normally” as possible. That’s not to say that things aren’t harder for me at times – I’m always tired, which probably feeds my caffeine addiction, and I don’t often have the opportunity to be spontaneous – but I try not to focus on those things. They may not be “normal,” but they’re my normal.
I think diversity is really important, and I hope that my blog adds some diversity! But I also think it’s important to focus on what makes us alike, and not always on what makes us different.
If you’re interested in learning any more about SMA, you can do so here. And please leave any questions in the comments!