Embracing My Inner Alien – Kevin Schaefer

A few weeks ago, someone posted a question in a Facebook group for people living with neuromuscular conditions. The question, composed of a few simple words, prompted me to stop and think. How’s your life going right now? A question like this should be…

I remember it like it was yesterday. Every muscle in my body tensed up as I looked at my parents from across the kitchen table. I had never before felt as nervous as I did at that moment. Even as I tried to remember the details of my…

For most people, lifting weights is a suitable form of physical exercise. For me, successfully turning just one page of a book makes me feel like I’ve run a marathon. It’s a special kind of feat if I manage to flip through a thick paperback on my own.

It’s Sunday night, and I’m surrounded by an assortment of books, comics, DVDs, Blu-rays, action figures, and other items that one might find in a 5-year-old’s room. The only outlier is my framed college diploma, which hangs right next to a giant Batman poster. Indeed, this…

It was my last semester of college, and I had room for one more writing class in my schedule. I already had two film courses, a literature survey, a fiction-writing workshop, and a general education requirement I had put off until the last minute. (You could say that…

I’ve been an active member of the SMA community for years, but one of my fondest memories from any SMA conference took place last year in Dallas, Texas. As I chatted with my friend Doug, another friend’s 5-year-old daughter joined our conversation. Her…

“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after I finished middle school; but even then, the fact that any kid thought this was the case…

Of all the technologies that I use in my everyday life, the two most important ones are my wheelchair and my JACO robotic arm. My chair keeps me moving from one place to the next, and my robotic arm compensates for many of…

“Dude, use your robotic arm to grab my leg!” Superstar blogger Shane Burcaw said these words to me when I met him a couple of weeks ago. Having read his books, and watched him and his fiancee, Hannah…

Thanks to the fine folks who handled my wheelchair at the airport a few days ago, I’m now writing this column while sitting in my bathroom seat. My mom is going to get my chair looked at, and until then, I needed to…

Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I think back to when I was a teenager, struggling with sleep apnea…

One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have lateral supports attached to both sides of my wheelchair to help with this. I…