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…
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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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…
Reflecting on joy and kindness this holiday season
As I check off the last item on my long list of gifts for the family I adopted this Christmas, I say a little prayer that they’ll feel utmost joy and kindness…
Learning to find joy in the most unexpected places
Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding…
Here’s why I navigate the months of winter without a coat
With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?” It’s a valid concern on…
Handling the reality of respiratory infections while living with SMA
If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these…
SMA and the power of community: Finding solace in shared journeys
Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question…
Why I prefer empathy over pity in life with SMA
“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would…
My mental health plays a big role in how well I manage procedures
Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into…
After years of health struggles, I am growing stronger
Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle…
