Life, One Cup at a Time
— Alyssa Silva

As I check off the last item on my long list of gifts for the family I adopted this Christmas, I say a little prayer that they’ll feel utmost joy and kindness this season. I’ve been adopting families for many years now. It’s my way of saying thank…

Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding tube requires me to go to the interventional radiology department every 10 days to get my…

With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?” It’s a valid concern on their part, I suppose. After all, when the weather drops below freezing, the right thing to…

If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these infections can be dangerous and life-threatening for us, even if they’re simply common colds. In…

Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question I’ve been asked throughout my lifetime is how I manage the daily nuances of my life…

“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would be a little over the top. Perhaps I’d settle for a sign hanging from my…

Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what to…

Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle after another. It feels like I’ve been sidelined in my own life. But despite the seemingly…

Through my experience with SMA, I’ve come to understand the fragility of life. I’ve also come to understand the fragility of my wheelchair. I’ve been using a wheelchair for three decades and have learned how invaluable it is to my life and my independence. Though people often pity…

I couldn’t believe what I was seeing on the news. A tornado had touched down in my home state, Rhode Island, for the fourth time in six weeks. Before these, I’d heard of one or two tornadoes touching down in New England in my lifetime. Never were they close to…

In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush. In my three decades of life, I’ve lost many abilities. And every ability lost comes with its own grieving period.

You wouldn’t know this just by looking at me or the pictures I post on Instagram, but I’m hiding something. I imagine myself and this secret I carry as though it were a light switch. When people are around or I’m out in public, I do my best to…