I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work.
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“You just have to get through one more procedure,” I told myself as I pierced my tongue with my teeth while a needle stung my back. Slow and steady, I tried to take deep breaths to calm my nerves…
Crying the moment I saw Taylor Swift on stage wasn’t something I expected to happen. But it wasn’t completely unexpected, either. I realize I’m contradicting myself here, but emotions will do that to a person. They’ll feel exhilarating and…
Although I’m finding it hard to believe, this month marks 10 years since I graduated college. It feels like yesterday that I was excitedly driving across a stage to receive my diploma. With five long years of hard…
“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 I almost forgot what it…
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 respiratory syncytial virus and…
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 walls learning how to navigate…
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 recharge and clear my head.
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 I don’t know about, either.
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 seems to drag on for…
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 quiet neighborhood with broken-down streets…
“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 my recent health woes. But…
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 gets the best of me,…
