Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye” episodes I watch and self-help books I read, or the amount of inspiration I get from…
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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“Alyssa, does this look weird?” my mom said as she popped her head and chest out of the bathroom door. We were getting ready to go to a parade in 100 F heat and humidity. Trying to dress in as few layers as possible was definitely a requirement. However, my…
Like many others at the turn of the year, I enjoy setting aside some time to reflect on the past 365 days. I’ve never been the goal-setting type at the start of each year, so reflection serves me well. For me, setting goals far in advance can…
Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no such thing as spinal muscular atrophy type 1/2. I was originally…
Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I take my time and carefully examine the circumstances and craft well…
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me. Anxiety would greet me at the office’s main entrance and sit in the empty chair…
While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t blame them. After all, I’ve been wearing the exact same pair…
A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included in everyday conversations about disability. In that column, I shared my…
Making friends as an adult is hard. At least, it always has been for me. After all, I’m an introvert. I like keeping to myself. But friendships are important to my emotional well-being, and I cherish them deeply. However, once I graduated from college and started working…
Ed. note: This column was written in collaboration with fellow columnist Halsey Blocher for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at ”From Where I Sit.” It was another Friday night at the beach this summer, and I…
For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit organization as an adult, I have always been committed to making…
Even though I’ve been disabled all my life, I had never heard of Disability Pride Month until I scrolled past someone’s Instagram post last July. I guess that’s the beauty of social media: For every detrimental effect it has on our well-being, it can also serve as a…
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