How awareness has transformed the SMA landscape
When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement…
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Why beach days are so complex for me as a wheelchair user
My love for the beach has always been passionate yet complicated. Sure, it’s my happy place. The sound of ocean waves crashing into the shore, the peacefulness that envelops me when I reach…
Living with SMA means embracing the art of adaptation
When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice…
Despite the limitations of SMA, I’m still capable of many things
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two…
How I overcome feeling like a burden with SMA
From the moment I wake up to the time I go to sleep and get lost in my dreams, I’m fully dependent on others to help me meet my physical needs. If I have…
How a nasojejunal feeding tube saved my life
“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since…
Finding joy in my life amid SMA challenges
When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car…
From trials to triumphs: 3 lessons I learned while living with SMA
I often daydream about the kind of person I’d be if I didn’t have SMA. It’s not so much fantasizing about the physical abilities I’d have, but rather the characteristics that would define…
Navigating contrasting emotions during medical procedures
“You just have to get through one more procedure,” I told myself as I pierced my tongue with my teeth while a needle stung my back. Slow and steady, I tried to take deep…
Why attending Taylor Swift’s ‘Eras’ concert was cathartic for me
Crying the moment I saw Taylor Swift on stage wasn’t something I expected to happen. But it wasn’t completely unexpected, either. I realize I’m contradicting myself here, but emotions will do that to a…
From the pride of graduating college to the anxiety of finding a job
Although I’m finding it hard to believe, this month marks 10 years since I graduated college. It feels like yesterday that I was excitedly driving across a stage to receive my diploma. With…
From stares to acceptance: The value of teaching kids how to be inclusive
“Why is she in a wheelchair?” is one of the most common phrases I hear when I’m out and about. Funnily enough, I’ve grown so accustomed to staying home these past few years that…
