“Normal” isn’t exactly a word that describes anyone with SMA. We do things differently than most people, have different challenges, and live unabashedly abnormal lives. (Just look at my diarrhea and disability column from last week.) Nevertheless, there is no reason why those of us…
Embracing My Inner Alien
— Kevin Schaefer
Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, Bionews. He also hosts the SMA News Today Podcast. 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.
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In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an…
Yep, I’m going there. If you’re easily turned off by poop jokes, just skip this column. SMA is tough, but diarrhea causes me pain and discomfort unlike anything else. When my body experiences this ungodly phenomenon, I want nothing more than to be…
In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis…
As a lifelong SMA patient, the sheer number of people on my healthcare team rivals the size of my immediate and extended family combined. Keep in mind that I come from a southern family with multiple cousins, aunts and uncles, grandparents, and even a couple of…
Given how much I loved movies, playing make-believe, and any kind of storytelling, it’s no surprise that I had a desire to get on stage early on. Before my elementary school started its drama club, I acted in church plays, put on my own productions at…
In the closing scene of the 2002 “Spider-Man” movie starring Tobey Maguire, a solemn Peter Parker leaves the funeral of Norman Osborn with a spirit of both determination and resentment. While determined to carry on the legacy of his late Uncle Ben and be the…
When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way. Case in point: the majority of my family’s vacations. You could easily…
As a child of the mid-1990s and early 2000s, I still remember when Saturday morning cartoons were still a thing. Every Saturday of my childhood consisted of my parents propping me on my bench in our bonus room so I could watch everything from “Power Rangers”…
We often talk about the qualities of an ideal caregiver and what one should look for, but we rarely talk about what we as patients can do for our caregivers. The patient-caregiver relationship works both ways, and it’s important to keep in mind that our…
There’s that old saying about how when one door closes, another opens. The original quote by Alexander Graham Bell is, “When one door closes another door opens, but we so often look so long and so regretfully upon the closed door, that we do not see the ones…
There’s no denying that SMA can be brutal, taking more than just physical ability from those it afflicts. It can be a burden mentally, emotionally, and financially, as this recent study noted. However, if you have read my columns for…
Last week, I wrote about the personal impact that this year’s Cure SMA conference had on me, as well as the relationships I built during that week in Dallas, Texas. In this column, I’ll be sharing my perspective on the research component of the conference.
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