Chronic Ear Infections Put a Damper on Life
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,…
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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How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement…
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Celebrating My Zebra Spots on Rare Disease Day
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…
Learning to Navigate the World in My Permobil F3
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…
On Being in Tune with My Body
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…
Please Stop Glorifying Being Homebound
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…
My 10-year Transformation: I Proudly Wear My SMA Battle Scars
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…
Our Christmas Lights Remind Me to Slow Down and Savor the Moment
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…
The Unexpected Feeling a Bookstore Gave Me
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…
I’m Learning to Find Gratitude in Unexpected Ways
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…
Autumn Brings a Bittersweet Feeling
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…
From Hospital Stays to Grateful Days
Last weekend, my friends and I celebrated my 29th birthday with a brunch that was arguably too classy for us kids. The Champagne endlessly poured, the laughter continuously ensued, and my heart overflowed with…
Faced with the Unexpected, My Family Had to Break Our ‘Sick Rules’
It has been a bizarre week in the Silva household. Come to think of it, “stressful” may be a better adjective to describe the energy inside our four walls. However, for the sake of…
