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…
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.
Featured Post
A magazine article was my family’s lifeline during my SMA diagnosis
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs…
Read more
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…
How I learned to prioritize my mental health from an early age
When I was a little girl, I had many life-threatening hospitalizations, the first at 16 months of age. Ten months after I was diagnosed with SMA, I experienced my first bout with…
My wheelchair is not a hindrance, but a gateway to the world
Whenever I think about how I started driving my wheelchair at 3 years old, I always wonder, “Whose great idea was that?” I accidentally crashed into furniture. I made plenty of dents in the…
A recent trip to the beach prompts me to reassess myself and my health
Some of life’s best lessons come from the beach. Don’t you agree? Maybe it’s because I’m a solar-powered soul, but the beach is my happy place. It’s where I go when I need to…
Combating 3 misconceptions about living with SMA
While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that…
The isolating reality of navigating cold and flu season with SMA
There’s an old adage that says March comes in like a lion, but where I’m from, it comes in more like a tease. In New England, March is still cold and snowy, and it…
