My medical devices aren’t an invitation for people to stare at me
“Alyssa, does this look weird?” my mom said as she popped her head and chest out of the bathroom door. We were getting ready to go to a parade in 100 F heat and humidity.
Author Archives: Alyssa Silva
The transition to adult healthcare brings both fear and gratitude
“Where are the cartoons?” I jokingly asked my mom while “Sherri,” the daytime talk show, played on a television above me. She chuckled as I scanned the waiting room, taking it all in. There are moments in…
How voice-to-text technology improved my daily life with SMA
“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…
The blessing and burden of relying on medical machines
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…
What the Patriots’ playoff mantra taught me about life with SMA
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…
Humor is my key to survival in life with SMA
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…
How a renegade lamp taught me that control is an illusion
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…
With SMA, slowing down becomes its own kind of strength
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…
A magazine article was my family’s lifeline during my SMA diagnosis
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.
How a simple page turn became a big victory
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…
Recent Posts
- My medical devices aren’t an invitation for people to stare at me
- Study links metabolic flaws in spinal muscles to scoliosis in SMA
- Diagnosis Day packs a different kind of punch 29 years later
- Pioneering SMA champion to be honored for her disability advocacy
- How a national parks pass granted me access to new adventures