Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a…
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“Why is she in a wheelchair?” is one of the most common phrases I hear when I’m out and about. Funnily enough, I’ve grown so accustomed to staying home these past few years that…
When I was a little girl, I had many life-threatening hospitalizations, the first at 16 months of age. Ten months after I was diagnosed with SMA, I experienced my first bout with…
Whenever I think about how I started driving my wheelchair at 3 years old, I always wonder, “Whose great idea was that?” I accidentally crashed into furniture. I made plenty of dents in the…
Some of life’s best lessons come from the beach. Don’t you agree? Maybe it’s because I’m a solar-powered soul, but the beach is my happy place. It’s where I go when I need to…
While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that…
There’s an old adage that says March comes in like a lion, but where I’m from, it comes in more like a tease. In New England, March is still cold and snowy, and it…
Something you may not know about me is that I have two homes. My first abode is a one-story home that was built to fit my needs almost 20 years ago. It’s in a…
“OK, SMA. You win,” I thought after signing off from a virtual meeting. I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of…
Among the many SMA symptoms I live with every day, fatigue has permanently staked out its territory at the top of the list. I am perpetually tired. There are days when my fatigue…
As many readers of this column may know, SMA is considered a rare disease. But what some may not know, or simply overlook, is that people with SMA don’t share…
Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more…
Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the…
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