Full disclosure: Although I was an English major in college, I didn’t read all the books I was supposed to. Oops.
As I think back to my days as a student, I was so focused on the idea of getting the grades I needed to graduate that I often failed to really absorb the material. I wasn’t always living in the moment. Plus, while I loved working for the student newspaper, I definitely allowed my commitments there to interfere with my studies.
I was Peter Parker, putting too many things on my plate at a time and fumbling through life as a result. Too bad I didn’t have superpowers to help me out.
It wasn’t until my final semester that I buckled down and devoted myself to my classes. I stepped down from my various leadership roles and wrote only an occasional story for the NC State University newspaper, Technician. By that time, I also had a better grasp on how to manage my care, and I had a great caregiver team.
That semester was my best from an academic standpoint, and I felt a genuine sense of accomplishment and growth heading into graduation. Yet, even as I crossed the stage and accepted my diploma, I felt like I still had so much to learn.
Now it’s August 2020, another SMA awareness month. I’m in my third year of writing for SMA News Today and working for its parent company, yet I still have much to learn. By overseeing our special series “31 Days of SMA,” I’m learning the stories of people in my community from around the world. Mentors who have SMA are also teaching me how to navigate adulthood. And I’m learning how to bleeping pronounce the new FDA-approved treatment Evrysdi.
Back when I graduated, there were several months before I acquired my full-time job here at BioNews. During that time, I did some freelance work, wrote comic book scripts, spoke at a medical conference, broke my femur after that conference, and spent two weeks hospitalized. As I’ve already stated many times, there’s never a dull moment in the world of SMA.
I also used this time to read and learn as much as I could. I read comics, memoirs, novels, short stories, you name it. Now that I wasn’t restricted to a particular curriculum, I could delve into whatever I wanted. This was the period when I started reading books by Shane Burcaw and other authors with disabilities. Reading these stories helped me discover a passion I didn’t know I had for writing about SMA.
My unquenchable thirst for knowledge and stories has served me well, especially now. Because I’m home a lot now, I have more time to read, listen, and learn. I read history.com every day and listen to a wide variety of podcasts. I’m also balancing my regular consumption of comics with prose and nonfiction. I’m currently making my way through George R. Stewart’s classic science fiction novel “Earth Abides,” which is one of several books I never finished in college, hehe.
Also, did you know that Rider Strong, who played Shawn in “Boy Meets World,” co-hosts a literary podcast? And it’s fantastic! I learn some of the most random and fascinating tidbits while surfing the internet on a Friday night.
As a person with SMA, and as just a person, I’ve learned to never stop learning. I loved my time in college, and I’m a strong advocate for academia. However, I’ve come to the realization that I don’t need another degree to further my education. Knowledge is more accessible to our society than ever before, and my disability is in no way a hindrance to my pursuit of knowledge and wisdom.
Even with the seemingly insurmountable challenges of this year, I’m grateful for the time I have on my hands. Though I long for the day when I can freely go out in public and surround myself with other people, I’m content right now with learning and listening. I’m content with being in the moment.
And to any of my former professors reading this, at least I’m playing catch-up with my reading now. Better late than never.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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