As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life with SMA. I’m finding myself leaning on past experiences to help…
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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Recently, I was teasing my brother about how he apparently doesn’t care about me anymore. (Don’t worry. This couldn’t be further from the truth.) The next day, I was scheduled for an iron infusion and was dreading it. Because I live with spinal muscular atrophy (SMA), maintaining my iron…
For the past few months, I have been experiencing some debilitating health issues. I’ve spoken with my doctors. I’ve tried different medications. And while as a team, we have figured out ways to give my body some reprieve at times, the root issue has yet to be diagnosed and resolved.
Digital detoxes are all the rage these days, and for a good reason. If you didn’t already know, a digital detox is time spent disconnecting from all devices with a screen — smartphones, computers, and television to name a few — for a certain period. Whether…
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted me to have my first telemedicine conference call with my team…
The other day, I read one of my old columns and thought to myself, “Honey, if you only knew what was to come.” My January column, “Please Stop Glorifying Being Homebound,” was all about how I spend every winter hunkered down in my home to avoid…
My body has never handled stress well. Come to think of it, does anyone respond well to stress? Typically, my body reacts to stress in the form of gastrointestinal issues. This comes as no surprise considering I’ve dealt with acid reflux disease…
I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if a global pandemic wasn’t happening around them. At this point, the novel coronavirus needs no introduction.
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my current reality. In my last column, I…
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think of zebras, I think of one brilliant doctor, whose comical bedside…
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and yes, I am one of those crazy people who assign genders and names to their vehicles,…
All my life I’ve been freakishly in tune with my body. It sounds like a great quality to have, right? I’ve always been hyperaware of my symptoms and can spot when something in my body feels off. This bodes well when it comes to viruses and other types of illnesses…
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or see what the outside world has been up to for the…
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