“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…
Life, One Cup at a Time - a Column by Alyssa Silva
There aren’t many guarantees in life, but if you live in New England, you can always be sure there will be a winter nor’easter. With these storms come snow, wind, and power outages. The local news outlets remind everyone to get their bread and milk before the shelves are cleared,…
Lately, I’ve been asking myself whether what I have right now is truly enough to carry me through the hard seasons. It comes as the New England Patriots are heading to the AFC championship game. For a lifelong fan like myself, it has been an exciting season to watch, with…
The other day, I got my wheelchair stuck in a doorway. All I wanted to do was see the Christmas decorations at a local coffee shop. Perhaps even enjoy a nice cup of their matcha while quietly watching everything sparkle. Instead, I was wedged in the doorway, pushing my joystick…
Dear reader, I did it. I made it through another Thanksgiving without being able to eat a single thing. This may not seem like an accomplishment to most, but as someone living with spinal muscular atrophy (SMA), it means everything to me. The holidays took on a different meaning…
While I understand that inanimate objects cannot have a mind of their own, there’s a lamp in my bedroom that would kindly disagree. I’ve had this lamp for a couple of years now. It’s set to a timer that turns on every night at 11 p.m. and stays lit until…
Autumn and I have always had a complicated relationship. Its golden hues, pumpkin-patch allure, and cozy feelings entrance me like no other. Yet, amid this season’s spell lies one hard truth to accept: Winter is coming. For those of us living with spinal muscular atrophy (SMA), this means more…
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness. I couldn’t roll over, wasn’t able to hold my head up, and had minor…
As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and fingers don’t always cooperate when I want to read. Something as simple…
“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 had a good chuckle, there was also some validity behind it. Given my scoliosis, hiatal hernia,…
