Redefining progress in life with SMA and assistive devices
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in…
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
What I hope you’ll understand this SMA Awareness Month
“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room…
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Answering kids’ questions about SMA includes encouraging them
If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person,…
My journey of self-discovery has taught me how to thrive with SMA
Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news…
How blowing on dandelions helped shape my SMA journey
When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength…
From defeat to victory: My journey with SMA and GI health
There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the…
Sleep issues have a serious impact on my daily life with SMA
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it…
Finding inspiration in mundane moments in life with SMA
I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!” I’m usually met with eye rolls. I…
Faith became a light shining in the darkness during my SMA journey
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks…
No, Mr. Author, being disabled is not a tragedy
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a…
This Super Bowl, I’m celebrating the underdog spirit
With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of…
How SMA is teaching me the art of being present
For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a…
The healing power of dogs is unmatched in my SMA journey
When living with SMA, building a survival toolkit is essential. These are the resources and strategies that help me navigate any challenges that come my way. While most items are obvious, such as…
