I came up with the idea for this column at 5:45 a.m., when I’m usually just falling into a deep REM cycle. (Sleeping has never come easily for me.) I wish I could say I was up at that ungodly hour (mornings also never come easily to…
Life, One Cup at a Time
— Alyssa Silva

Throughout my life, I’ve experienced a certain kind of loneliness that comes from being surrounded by people. Conversations are happening all around me, and laughter fills the room. Everyone seems to be connected to one another, but I still feel invisible. Let’s face it, though. There’s nothing invisible about living…

One of the most frequently asked questions I receive from readers, friends, and even family members, is how I physically write my columns. The evolution of my ability to write has changed drastically over the years. I will try my best not to bore you with the nitty-gritty details, but…
In May 2017, I became an auntie to a beautiful little boy named Lincoln Anthony. I’ll never forget the day we heard the news. It was a sunny Saturday morning in early fall when my brother’s affectionately named “demon dog” darted into the house wearing a shirt. I…
I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure. To kill time and unwind together, we used to hop in…
Why I Share My Story
Can I be totally real with you for a second? Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an incredibly vulnerable feeling. What will people think? Are you sharing too…
It’s Time for More Understanding
I think I can speak for the majority of the disability community when I say that we all crave a little more empathy and understanding from others. While I don’t expect a stranger on the street to fall in love with me at first sight, I do expect…
Last week, I wrote about the harsh reality that sometimes is SMA. I retold the story of my attempt to drive through the mountains of New Hampshire and how after breaking down at a gas station, I realized my body had other plans. I explored the…
Crying at a random gas station in rural New Hampshire was on my long list of things I thought I’d never do. Yet, there I was, two hours away from home, coming undone and growing angrier than ever at a disease that was beyond my control. I’ve been…
Between back-to-school commercials, first-day-of-school posts, and college-move-in-day pictures, this time of year always has me reminiscing about my days as a student. Although I am no longer shopping for notebooks and binders and figuring out if any of my friends are in my classes, the memories of these…
For a good chunk of last year, I dreaded when people asked how I was doing. To an extent, I understood their logic. They were genuinely curious about my well-being, and showing their concern showed that they cared. But the truth was that I wasn’t doing all…
Over the past weekend, pictures from the annual candle lighting for SMA that took place on Aug. 11 inundated my social media feeds. As most of our community knows, this lighting represents the lives lost too soon to this debilitating disease and those who are still living in spite…
It seems like just yesterday I was living in a perpetual state of chaos. My life was going a million and one miles per hour, and there was no stoplight in sight. Most days, I was struggling to make ends meet, always trying to juggle healing my body,…
Recent Posts
- Disability invisibility and the loneliness of being overlooked with SMA
- My medical devices aren’t an invitation for people to stare at me
- An unexpected turn highlights the gap between SMA adult and pediatric care
- The transition to adult healthcare brings both fear and gratitude
- How voice-to-text technology improved my daily life with SMA
