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…
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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Rotating part of my medical team every year takes an emotional toll
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this…
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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…
How awareness has transformed the SMA landscape
When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put…
Why beach days are so complex for me as a wheelchair user
My love for the beach has always been passionate yet complicated. Sure, it’s my happy place. The sound of ocean waves crashing into the shore, the peacefulness that envelops me when I reach…
Living with SMA means embracing the art of adaptation
When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice…
Despite the limitations of SMA, I’m still capable of many things
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two…
How I overcome feeling like a burden with SMA
From the moment I wake up to the time I go to sleep and get lost in my dreams, I’m fully dependent on others to help me meet my physical needs. If I have…
How a nasojejunal feeding tube saved my life
“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since…
Finding joy in my life amid SMA challenges
When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car…
From trials to triumphs: 3 lessons I learned while living with SMA
I often daydream about the kind of person I’d be if I didn’t have SMA. It’s not so much fantasizing about the physical abilities I’d have, but rather the characteristics that would define…
