First in a two-part series. I have never seen sci-fi media portray disabilities as casually as in the original trilogy of Mass Effect, a sci-fi video game series by game developer BioWare. For older fans of BioWare, the release of its remastered compilation on May 14 was a commemoration…
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This year marked the second entirely virtual annual Cure SMA conference. Instead of armies of wheelchair users invading Disneyland and hotels, we fellowshipped through virtual trivia nights and Zoom socials. While I yearn to be back in person with my fellow SMA peeps,…
Everyone knows that I’m a “Star Wars” buff. Lately, I’ve been listening to “Star Wars” audiobooks, specifically the Old Republic series. I’d heard some not-so-great things about the first novel, “Revan,” but eventually, my curiosity won out. After all, if there’s one thing “Star Wars” audiobooks have going for them,…
I rolled up to the checkout counter, rosy cheeks beaming in delightful mimicry of the friendly-faced pansies beside me. The greenhouse air was thick and sweet like the morning sun’s hot breath in summertime. As my caregiver placed several cartons of sprightly lantanas beside the cash register, a worker…
Birthdays, including my own awesome one last month, and other notable days — Mother’s Day, Memorial Day, school year’s end — dot the May calendar. June’s tally of memorable days is no slouch, either. My husband, Randy, and I married in June (47 years ago!), as did both…
Over the years, I’ve grown more reliant on friends, especially those who live with some sort of disability. Of course, I treasure all my friendships, but there is a bond between disabled folks that transcends most relationships. It’s a special kind of knowing, a wordless understanding that is reassuring. I…
“The Truman Show” is one of those movies that I can watch over and over again without ever growing tired of it. I long ago lost count of how many times I’ve seen it, and it’s always been a family favorite. (My mom, who introduced me to…
If I had to choose the top three places I frequented prior to the pandemic, they would be the local coffee shop, Target, and Boston Children’s Hospital. Thankfully, I mostly frequented the hospital for appointments and procedures, not hospitalizations. Even so, I have spent a good percentage of my…
Over the years, I’ve thought, “I wish I didn’t have all of these responsibilities and could just have fun all of the time. Living with SMA provides enough pressure that I didn’t ask for!” Growing up, I would frequently hear, “Go study for those two tests you have at the…
When I was diagnosed with SMA, my parents were confronted with a pivotal choice: stay in Singapore or move the three of us to the U.S., where they’d heard there might be an experimental gene therapy that could treat me. It’s a decision that would have altered the course of…
