Embracing My Inner Alien - a column by Kevin Schaefer

wheelchair malfunction, movie theaterKevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

 

A Long Time Ago …

I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are…

Prepping for the Winter

As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with…

One Day at a Time

At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.

The Wonders of Water Therapy

We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I…

Stop Staring at My Service Dog

The other night, I was out at Barnes & Noble with my dad. As we went to grab a table in the coffee shop area, I ran into an old friend and spent a few minutes talking with him and his friend over by one of the store’s…

Plenty to Do While Awaiting Spinraza

November is a pretty jam-packed month for me. I’m working on a book project for the annual NaNoWriMo contest, juggling two separate podcasts, getting ready for the North Carolina Comicon. And on top of all that, I start my Spinraza injections a week from…

Making Halloween Inclusive

Green Arrow costume, image provided by Kevin Schaefer October is one of my favorite times of the year, and not just because it’s my birthday month. Call me childish, but I never grow tired of the creative Halloween costumes, the festivities, scary movies and the buckets…

Drivin’ in the Rain

A couple weeks ago I was out with some friends from college for a trivia night at a local brewery. My friend Russ gave me a ride, and as we approached our destination the clouds covered the sky, culminating in a stormy display like something out of…

Never Tell Me the Odds

In a few days I’ll be 24, and every year my birthday is accompanied with at least some sentimentality. I hate being sappy, and anytime I reach a milestone it’s usually followed by an emotional speech by one of my parents. At my college graduation party last…