Learning to find joy in the most unexpected places
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…
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
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How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement…
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Here’s why I navigate the months of winter without a coat
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…
Handling the reality of respiratory infections while living with SMA
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…
SMA and the power of community: Finding solace in shared journeys
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…
Why I prefer empathy over pity in life with SMA
“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…
My mental health plays a big role in how well I manage procedures
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…
After years of health struggles, I am growing stronger
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…
The fragility of my independence with a broken wheelchair
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…
Rare tornadoes prompt us to rethink our storm preparation
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…
Dealing with grief over lost abilities is a perpetual part of SMA
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…
Finding energy for the things that matter in life with chronic fatigue
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…
Finding my strength in situations that feel beyond my control
Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of…
