3 productivity hacks I use while living with SMA
Among the many SMA symptoms I live with every day, fatigue has permanently staked out its territory at the top of the list. I am perpetually tired. There are days when my fatigue gets the best of me,…
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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Don’t underestimate the importance of routines in life with SMA
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.
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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 the exact same experiences. When…
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…
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…
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…
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…
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…
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…
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 to get a good view…
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…
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 read it. So it only…
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 lenses. I see that in…
