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…
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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Defining ‘good health’ on my own terms
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a…
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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…
During our most difficult health journeys, life can teach renewal
Once upon a time, a pandemic enveloped the world and put my life on hold for years. With a weakened body due to SMA, and without knowing what the virus that causes…
A winter snowstorm can feel magical — until it doesn’t
Whenever it snows, I feel like I’m inside a snow globe. The sparkling flakes daintily scurry down, covering the glistening trees and other surroundings. Everything feels magical for a moment in time until, suddenly,…
Why I no longer make New Year’s resolutions
This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I…
Reflecting on the SMA treatment decision that changed my life
This column describes the author’s own experiences with Spinraza (nusinersen). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When trying to decide on…
