There are moments when I forget that I have spinal muscular atrophy (SMA). Does that surprise you? It surprises me. It’s not as if this is a new diagnosis that I’m still adjusting to. I’ve lived with this disability for as long as I can remember, and…
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Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that. The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as…
“Did you tell your siblings my medication costs about $1,000 SGD [$783] per day, before subsidies?” I texted my dad a couple of months back. It had been years since his elder brother and sister had seen me. As fate would have it, I was due for phenol and steroid…
Some of my earliest memories are of my mom helping me get dressed up for ballet. Nothing says prima ballerina vibes like a leotard, some tights, and chunky 80s-style leg warmers. I was 4 years old, and I wasn’t actually going to a ballet lesson; I was going to my…
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…
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…
