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…
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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Finding gratitude, even amid the toughest battles of life with SMA
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are…
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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…
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…
