With SMA, My Voice Makes Me Feel Self-conscious
Does anybody actually like the sound of their own voice? Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when…
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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Finding Joy Helps Me Push Past the Hard Days With SMA
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to…
I’m Wondering About How SMA Influenced Me as a Child
Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored…
Grappling With the Emotional Effects of Challenging Medical Procedures
It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding…
How Advocating for Myself Helped Me Overcome a Tough Health Setback
“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of…
A Medical Procedure Reminds Me to Thank My Body for Its Endurance
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small…
My Most Comfortable Position Makes Me Feel Uncomfortable
Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company.
The Best Unorthodox Advice From My Doctor
When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect.
How the Formula Shortage Has Affected Me as Someone With SMA
Whether it has directly affected you or not, chances are you’ve heard about the formula shortage happening in the United States right now. It’s a serious issue, one that has people…
Avoiding COVID-19 Exposure Is Like a Game of Dodgeball
While most of my elementary school days are a bit fuzzy in my head, lately I can’t stop thinking about how we used to play dodgeball during gym class. Our class would split into…
Overcoming Roadblocks to Chase My Dreams With SMA
For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved…
Adapting to My NJ Feeding Tube
Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ…
