Two years ago, I had just graduated from college and I found myself filled with uncertainty about my future. As a physically disabled 23-year-old on Social Security with an English degree, even I joked about the likelihood of facing unemployment and being forced into academia for the rest of my life.
My fierce determination to remain poor continued when I spent the first couple months after graduation working on comic book scripts and freelance writing for some nonprofit organizations. Whereas I was a pretty good student in college and made a name for myself as a writer and editor for the student newspaper, I was now facing the crippling pressures of the real world.
Still, even with all of the uncertainty that surrounded me, I actually stayed strikingly calm during this initial post-graduation phase. After four and a half years of juggling classes, coordinating interviews and writing articles, long production nights in the newspaper office, small group meetings with my InterVarsity Christian Fellowship crew, hiring caregivers, and trying to manage my health, I was ready for a break.
I spent months without full-time work reading memoirs, graphic novels, and anything else interesting; hanging at my local comic shop and at conventions; writing and blogging as much as possible; and watching my newborn niece grow up. I also fell and broke my leg at a medical conference in April 2017 — what’s life without a little chaos and adventure?
Now here I am, a full-time employee at BioNews Services. Every day, I strive to amplify patient voices in various disease communities, produce multimedia content that informs and entertains, and connect with people in the SMA community in our forums. Not only am I able to use skills that I honed in my college years, but also I know that the work I’m doing is making a difference.
If someone had told me when I was in high school, or even when I entered college, that I would wind up writing openly about my life with SMA every week and working as a patient advocate, I would have said that person was crazy. A job like this was never in my original plan. My original plan consisted of realistic goals like writing the next “Star Wars” movie, becoming an acclaimed comic book creator, and eventually marrying Daisy Ridley.
Despite not living the life I originally intended to have, I’m glad. My reality is better. Every day, my relationships with people in rare disease communities uplift me. We connect, share experiences, and ask each other for guidance. I get to write and record podcasts for work. I have an insane caregiver with an overly politically incorrect sense of humor who has stuck with me for the past four and a half years, and no matter how much we drive each other crazy, we are brothers through and through.
All of this is to say that I am beyond grateful for where I am in life, for what lies ahead of me, and for all of you who read my silly columns each week. I especially want to thank you all for sticking with me after I merged my periodic poop jokes into a full-blown diarrhea column a few months ago.
I also want to extend a large middle finger to anyone who thinks that a humanities degree is useless.
Merry Christmas, everyone, and I will see you all in 2019.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.