31 Days of SMA: On Becoming Miss Independence

Photo courtesy of Chessa Birrell

Day 4 of 31

This is Chessa Birrell’s story:

My name is Chessa Birrell. I am 26 years old and have SMA type 2. I live with my parents in Powder Springs, Georgia. I graduated from the University of Georgia with a degree in animal science and am currently pursuing a second degree in information systems at Kennesaw State University. While away at college, I lived on campus and had groups of aides that ranged in size from eight to 15 girls. I’ve had aides all my life, but managing 24-hour care proved to be a challenge.

Every time I hired a new aide, it was difficult for me to build trust with them. Although I had aides before, my parents were still performing most of my care and were always able to step in if there was any issue. My parents were used to how I liked things done and didn’t have to be prompted to complete a task, whereas newly hired aides didn’t have this experience.

It took a lot of patience to explain these things and a lot of trust by both of us to get things done correctly. I learned that it would be up to me to explain to the aides about the independence they were helping me gain and how I wanted tasks to be done.

After I graduated, I moved back in with my parents. The transition was challenging because it was extremely difficult to find aides. My hometown is bigger and offers more job opportunities, making it tough to find people. In response, I have learned to use the resources at my disposal. I often put advertisements in the health sciences buildings or student centers at local colleges, or at local hospitals, if possible.

I am very grateful I had the opportunity to go away for school because it helped me learn how to be a better manager and gain independence. Through my experiences with aides, I have built so many lifelong friendships I may not have had if I didn’t have SMA.

I highly encourage others with SMA to experience living on your own, if possible. Always remember, your disability is not a crutch, and never fear inaccessibility.

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.