Another day, another trek to Gillette Children’s Specialty Healthcare. This time, though, it’s for something I’ve never done before: a cortisone injection in my right hip. For all I’ve written about chronic pain over the years, I don’t think I fully understood how debilitating it can be until just recently. It…
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I promise I’m not being negative or dramatic when I say I can’t do anything on my own, and I don’t lack confidence in myself, either. It’s just a fact that with my severe disability, I need help with literally everything. That isn’t a bad thing. It’s a truth that…
Last Wednesday evening, a double rainbow popped up across the road. We’d had rain to some extent every afternoon and night. The rainbow provided a beautiful bit of calm and was, we hoped, a sign that the rain would be easing up. It turned out to be the calm…
Another day, another devastating headline in the realm of video games. “Layoffs Leave The Future Of Xbox’s Award-Winning Accessibility Efforts In Doubt,” announces one story from the gaming news website Aftermath. The article, published on July 22 and written by a fellow journalist with SMA named Grant Stoner, details…
When my caregivers fetch my shoes in the morning and my feet effortlessly slide right into them, more than one of them has smiled confidently and remarked, “Ah, now that’s a sure sign that it’s gonna be a great day!” And it is true. Despite the complications of having weak…
It’s indisputable that people with SMA deal with unpredictable life events. I truly believe that our superpower is becoming exceptionally good problem-solvers and crisis managers out of necessity. To solve a problem, one usually works through the following steps: Stay calm. Identify what you can control. Develop a…
Last month, I wrote about a whiteboard of collected memories I received as a gift when I graduated from college in 2005. It had 38 pictures on it that showcased the many life adventures I’d had up to that point. I noted that the whiteboard recently fell off the wall…
Ready or not, we’re about to say “Adios!” to another month. Our daughter, Katie, and son-in-law, Paul, arrive today for a whirlwind visit, sending July packing with a bang. A few hours after Katie and Paul depart for their next destination, the rest of the family will be hurled into…
I had a date with Count Dracula. An award-winning ballet adaptation of Bram Stoker’s immortal creation — “Dracula: Ballet at its Darkest” — was to arrive in my homeland of Singapore for the summer, and a friend of mine got wind of the news. The production promised an…
Do you remember the summer of 1998? It’s been a while, so let me remind you. It was the season of blockbuster movies like “Saving Private Ryan” and “The Mask of Zorro.” The airwaves were filled with hits by stars like the Backstreet Boys and Shania Twain,…
