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…
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“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…
“Alyssa, this is the best you’ve ever looked to me,” my gastroenterologist recently exclaimed during a routine appointment. Though I hadn’t felt my best internally, I took her word for it. After all, she’d been my doctor for more…
Every morning, my dog, Stella, impatiently waits for me to wake up. While it’s true that she loves me, it’s also true that she’s excited about the treat I give her after she greets me with slobbery kisses.
I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work.
With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body. OK, maybe that’s a bit dramatic. But the healing powers of the…
As I stared at the rolling green hills before me, I wondered what 8-year-old Alyssa would have thought of this moment. It was my nonprofit organization’s first charity golf tournament in almost six years, though the annual events…
With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how…
I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be…
When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was like until recently. After questioning…
If you’re a soccer fan like me, I imagine you’re thriving at this time of the year. Because I grew up in a proud Portuguese family, the sport is a huge part of my culture. If I didn’t know…
The delicacy of my health is no joke, but during a recent appointment with my ear, nose, and throat specialist, I had to laugh. In addition to living with spinal muscular atrophy (SMA), a rare disease, I’d…
