My zebra spots are why I raise rare disease awareness
As many readers of this column may know, SMA is considered a rare disease. But what some may not know, or simply overlook, is that people with SMA don’t share…
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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Rotating part of my medical team every year takes an emotional toll
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this…
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In life with SMA, I’ve learned to go with the flow
Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more…
COVID-19 kept me from saying goodbye to my grandmother
Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the…
Should I Get a Puppy? That’s a Tough Question to Answer
The best advice I could ever give someone is simple: Get more dogs. I guess if cats are more your thing, that’s OK, too. What’s important is that no matter the animal, they bring…
Managing My Physical Health Takes a Huge Mental Toll
I got out of my van at the hospital for what felt like the millionth time that month, and I could hear the deafening sound of a helicopter landing above me. Though hundreds of…
SMA Is Part of My Identity, and I’m Proud of It
I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on…
I’m Challenging Myself to Set Goals in the New Year
I’ve never been the type of person to set goals. I realize how this could be misconstrued. But the truth is I’m not lazy or unmotivated. In fact, I pride myself on being determined.
Learning Patience, Communication Was Crucial as SMA Progressed
I once knocked over our Christmas tree when I was 3 years old. To this day, I’m not proud of it, and frankly, I’m still a little traumatized by it. I was simply trying…
With SMA, My Voice Makes Me Feel Self-conscious
Does anybody actually like the sound of their own voice? Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when…
Finding Joy Helps Me Push Past the Hard Days With SMA
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to…
I’m Wondering About How SMA Influenced Me as a Child
Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored…
Grappling With the Emotional Effects of Challenging Medical Procedures
It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding…
