Author Archives: Kevin Schaefer

Life Advice From My Hippie SMA Friend

I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media…

Life Advice From My Hippie SMA Friend

I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media…

Who Am I? Embracing My SMA Advocacy

I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing…

Who Am I? Embracing My SMA Advocacy

I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing…

How a Meltdown Changed My Life for the Better

I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high…

How a Meltdown Changed My Life for the Better

I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high…

Imagining a World Without Ableism

A friend and I were sitting in a dimly lit movie theater a few years ago when two guys in their 20s approached me. I couldn’t tell initially if I knew them, but after a closer look, I realized that neither was an acquaintance of mine. They each bore…

Why Be Normal When We Can Be Special?

The Netflix series “Special” opens with its main character, Ryan, getting hit by a car and thrown into an existential crisis. The accident forces Ryan, a disabled gay man who has multiple insecurities, to evaluate his identity and pushes him to reinvent himself over the course of the…

Defying Monotony in Life With SMA

“Hello, Peter. What’s happening? Umm, I’m gonna need you to go ahead and come in tomorrow. So, if you could be here around 9 that would be great. Mmkay? Oh, oh, and I almost forgot, ahh, I’m also gonna need you to go ahead and come in on Sunday,…

A Power Outage and a Frozen Ramp

Here in North Carolina, the weather fluctuates between springtime warmth on Christmas Day to freeze-your-butt-off cold a couple days later. We sometimes get all four seasons in the span of a few weeks, but it’s the wintertime that requires the most preparation. It forces…