Life, One Cup at a Time
— Alyssa Silva

It’s officially August, which is kind of hard to believe. Nonetheless, many people in the SMA community have anticipated this month for quite some time. Not only is it SMA Awareness Month, but it is also when the U.S. Food and Drug Administration was expected to…

This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go. When I was originally offered this role as a columnist for Bionews — the company that publishes this website — I turned…

It’s no question that children are curious little people, and as someone in a wheelchair, I have often witnessed their curiosity. If I were to guess, I’d assume disabilities aren’t something they’ve seen in their short little lifetimes. As a result, they stare and allow their curiosity to get the…

As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life with SMA. I’m finding myself leaning on past experiences to help…

For the past few months, I have been experiencing some debilitating health issues. I’ve spoken with my doctors. I’ve tried different medications. And while as a team, we have figured out ways to give my body some reprieve at times, the root issue has yet to be diagnosed and resolved.

Digital detoxes are all the rage these days, and for a good reason. If you didn’t already know, a digital detox is time spent disconnecting from all devices with a screen — smartphones, computers, and television to name a few — for a certain period. Whether…

There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted me to have my first telemedicine conference call with my team…

The other day, I read one of my old columns and thought to myself, “Honey, if you only knew what was to come.” My January column, “Please Stop Glorifying Being Homebound,” was all about how I spend every winter hunkered down in my home to avoid…

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…

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…