One Wednesday night when I was in high school, either freshman or sophomore year, my youth pastor, Todd, said something that has stuck with me ever since. We had youth group meetings at our church every week, and on this particular night Todd spoke about how Christians can stand out in a good way in order to make a positive difference in the world. I don’t recall what passage we were in, but I do remember the final bullet point of that message: Embrace your inner alien.
Now, for a sci-fi geek such as myself, being encouraged by my youth pastor to be more like a creature from outer space than a traditional human, filled me with delight. My family and friends might even say that I’ve always excelled at this. Heck, there was a time when I wholeheartedly believed I would wake up one day to find that I was a Jedi. (That was my birthday wish for several years as a kid.)
Here’s the thing, though; my fascination with the abnormal always has been at odds with my desire for a normal life. When I was 18 months old, I was diagnosed with spinal muscular atrophy type 2. This neuromuscular disease has confined me to a power wheelchair my entire life. Due to its degenerative aspect, my muscles have weakened gradually over time. For instance, while I used to be able to move my arms, and eat and drink with only partial assistance, I now have severely limited arm and upper-body strength. I depend on other people for around-the-clock assistance. The daily impact of my disability is no doubt visible, but that has not been the case always.
When I was growing up, I didn’t give much thought to the fact that I had SMA. Aside from the obligatory stares and hilariously dumb comments I’d receive from strangers, my friends and family treated me normally. My favorite dumb comment always has been when someone sees me make it through a tight corner with my wheelchair and then says, “Wow! You’re a great driver!”, to which I now reply, “Thanks! You’re a great walker!”
Honestly, I didn’t find that my physical disability was a hindrance to me socially or academically. I always went to public school, was active in church and numerous school theater productions. Just like all my friends, I made my parents’ lives a nightmare when I was 14. My thoughts as a kid and teenager consisted mostly of school, friends, girls, movies, acting, and whether I eventually would own a real light saber. All in all, I was successful at living a perfectly “normal” life during those years.
A turning point
Then high school rolled around, and that’s when things began to change. I can’t recall a specific instance, but it was around the time I was a sophomore when my arm strength began to deteriorate. I’ve never walked, so my wheelchair is as much a part of me as my arms and legs; but losing my arm strength was an altogether new and terrifying experience. It was gradual, burdensome and utterly merciless. My hope of living a normal life began to diminish in the blink of an eye. How was I going to live a normal life and do all of the things I wanted if I couldn’t even lift a fork an inch above the table?
As these thoughts started to race through my head, I decided to do something I hadn’t considered previously. I started talking about my disability with people other than my parents. Before that, I never talked about it with my friends, and even with my older brother and sister I rarely brought it up. It hadn’t occurred to me to talk about some of the challenges that my disability caused when none of my friends would understand. Now, however, I knew I would need to talk about it with the people I loved if I had any chance of coping with the challenges ahead.
This paved the way for an abundance of love and support from all kinds of people, and I’m incredibly grateful I made the decision to be more vulnerable than I ever was as a kid. The degeneration of my upper-body strength did not cease. In fact, it became even more ruthless and problematic when I was in college, so much so that I had to have help propping my hands on the lid of a cup and keep them close enough to my mouth so that I could eat. It went from embarrassing and exhausting, to being on the verge of unbearable. Nonetheless, the tremendous support I had from family and friends helped keep me going.
Then in 2015, I was blessed with a robotic arm, which has restored not only much of my independence, but has allowed me to do things I was previously incapable of doing on my own. Basically, I look like the comic book character Doc-Ock with it mounted to my chair, and I eventually plan to create an army of cyborgs to do my bidding.
I’m now 23, a recent college graduate, and I love what I do. Despite the fact that I face challenges that my friends simply don’t, I’ve come to the conclusion that normality is too abstract a concept to pursue. The majority of “normal” people live pretty boring lives, which I don’t envy in the slightest. I may not have a normal job, daily routine or even a method of going to the bathroom; but regardless, I live a life of fulfillment. I’m embracing my inner alien.
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.