At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now technology that can help…
Dairy Queen Ice Cream Cake. A Cabbage Patch doll. Brush-tipped markers and a slime kit. A diary and a special drinking glass (filled with Hershey’s Kisses). All the goodies Ella received on her 8th birthday. It’s hard to believe Ella is 8 years old…
With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving…
I’ve been struggling to get back into the swing of things now that my friends are gone. And not just with schoolwork, either. Basically, anything that isn’t Dungeons & Dragons, “National Treasure,” or self-insert role-play is having a hard time keeping my…
My father once made a promise to me as a little girl. I had been in the hospital’s intensive care unit for yet another respiratory infection, and he wanted to give me an incentive to get better. I’ve always operated best when having a goal to attain, and…
Coffee and Mexican food: These are two of my greatest loves, and I once again enjoyed them today, the day I celebrated the one-year anniversary of my best friend Sam’s move to Bend, Oregon. The original plan was for Sam to live here to help with my care…
Ella loves playgrounds despite being in a wheelchair hindering much of what she can do there. The area of the playground she has always gravitated toward is the swings. However, she has been restricted to the type of swing that “buckles” the rider in for safety,…
As I’ve written in previous columns, my college years were some of the best years of my life. I discovered my passion for journalism, made lifelong friends, became more independent, and most of all, I acquired the perfect nickname: Schaef-Dawg. Credit to my former…
I’d like to preface this piece by giving a shout out to one of our very own columnists, Brianna Albers. Brianna shared her experience with Amtrak on SMA News Today last year and was incredibly kind in answering all of my questions and easing my…