If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read somewhere online that folks like me have sweaty palms. This moment was one of those…
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It’s somehow already time for Thanksgiving, the designated day for us to give thanks for our blessings. Ideally, we should designate a few more days each year to doing that — like, say, the other 364 — but one day a year is better than none. I try to give…
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities I’ve lived with and grown accustomed to for 34 years, there are still some…
Individually and collectively, it’s vital to be sensitive to what’s happening in the world around us. This awareness allows us to be empathetic and strive for change that improves society for ourselves and others. The SMA and disability communities have long battled inequality and discrimination that could…
Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through words, expressing empathy, kindling hope, and leaving an indelible mark on hearts I may never meet.
Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move. Currently, I have a great setup that accommodates my SMA needs. I have all…
I consider myself an optimist, at least most of the time. Life has hurled more than a few lemons our way over the years; thankfully, I like lemonade. In 1997, when my husband, Randy, lost his job mere weeks before our third baby’s due date, I felt like we’d been…
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school. Whereas “Wars” is a giant space opera that takes place in the distant past with characters from a faraway galaxy, “Trek”…
It’s 2014. I’m months-deep into a major depressive episode. Nothing is enjoyable, not even my all-time favorite video game. I feel listless in the worst of ways. Several of my friends are playing “Dragon Age: Inquisition” (DAI), the latest installment in the long-running video game franchise by developer BioWare.
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my intuition that tells me something is wrong. As it turns out,…
