Life, One Cup at a Time - a Column by Alyssa Silva

Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.

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 difficult to place each time it needs to be exchanged. It clogs much more easily than…

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 hospital. Thankfully, it went as easily as it could have, given the difficult situation. But something…

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 you joy. After all, that’s what pets are — endless amounts of joy and unconditional love.

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 feet above, its whirling sound ricocheted off the buildings and echoed down below. The sound vibrated…

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 the internet, I had a lot to say. Sadly, I’m almost immune to the negative feedback…

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. I’ve always been willing to take on new challenges and write my own…

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 I ask this question. But for me and many of those outside my family, the answer…