31 Days of SMA: Let’s Work Together to Change Expectations

Photo courtesy of Carissa Decelles

Day 26 of 31

This is Carissa Decelles’ (@rheelgirl) story:

Hello! My name is Carissa, and I am a 30-year-old, award-winning art director and graphic designer from eastern Connecticut. I also happen to have SMA type 2.

SMA has never been a focal point in my life — at least not an intentional one. Did it have me in and out of hospitals every three months until I was about 7? Yes. Does it make life substantially more challenging? Yes, of course. Does it limit what I am able to achieve? No, absolutely not.

I was raised with the expectation that I was going to grow up, go to school, get a job, be successful, and live independently, just like any “normal” person would. While I frequently questioned how I would accomplish any of this, I didn’t view the challenges through the lens that SMA was in my way. It was more that the world was not built for me and it needed to adapt so that I could have a fair shot at building the life I wanted.

Fast forward to today. I have an amazing job, with my work recognized statewide and nationally. I live alone in my own apartment (unless you count plants, in which case, I live with a family of 20+), and I drive (speed is probably more accurate) my own specially modified vehicle, which is the coolest thing!

I am so thankful for each of these amazing gifts, and for the opportunities I’ve had to get me where I am now — no matter how much of a battle it was (and continues to be). The unfortunate thing is that I am viewed as one of the rare ones. I am abnormal in both the able-bodied and disabled communities because I have a severe physical disability, yet live what most would consider a normal life.

No one quite knows what to do with me. Yes, it’s amazing to get so far in a system literally designed to keep us from succeeding. But it’s also insulting that no one expects us to succeed.

Let’s work together to change this. It will be fun, I promise.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.