My body has never handled stress well. Come to think of it, does anyone respond well to stress? Typically, my body reacts to stress in the form of gastrointestinal issues. This comes as no surprise considering I’ve dealt with acid reflux disease…
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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“Spinal muscular atrophy golf tournament,” I spoke into my voice-to-text software. It was late at night, and I was physically drained. As a result, I knew my speech wouldn’t be very articulate. Nevertheless, I persisted in trying to accomplish some of my tasks for my nonprofit’s upcoming charity golf…
I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if a global pandemic wasn’t happening around them. At this point, the novel coronavirus needs no introduction.
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my current reality. In my last column, I…
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think of zebras, I think of one brilliant doctor, whose comical bedside…
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and yes, I am one of those crazy people who assign genders and names to their vehicles,…
All my life I’ve been freakishly in tune with my body. It sounds like a great quality to have, right? I’ve always been hyperaware of my symptoms and can spot when something in my body feels off. This bodes well when it comes to viruses and other types of illnesses…
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or see what the outside world has been up to for the…
For the past few weeks, social media feeds have been inundated with posts about the #10yearchallenge. It’s a way for people to showcase transformative photos of themselves. Some are from 2009 and others were taken this year. I decided to hop on the bandwagon and shuffled through old Facebook…
This time of year is my family’s time to shine — literally. Our house sits on a hill on a narrow street that runs parallel to the main road. Separating these two roads is a small patch of woods, leaving little to no privacy for our cozy abode when the…
I was recently strolling through the best-sellers section of a bookstore and couldn’t remember the last time I had set foot in one. I had just stopped in for the Starbucks coffee. However, while my personal care assistant ran to the bathroom, I decided to peruse the book display near…
In this season of giving thanks, I keep reflecting on the importance of gratitude. Gratitude greatly impacts our lives, but as someone with SMA, I’ve found the concept easier said than done. At the risk of sounding harsh, on some days I feel as though there is absolutely nothing in…
It is truly the most wonderful time of the year. As you read these words, I hope that you are envisioning me spinning in my wheelchair, wearing an oversized cardigan with leaves falling all around me, and resting a pumpkin spice latte on my footplate. When it comes to autumn,…
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