In my previous column, I explained how two years ago I was rescued by a heroic person in my life. Just as my main night nurse of eight years was moving away, a new day nurse of mine agreed to switch to nights. As relieved as I was to…
Columns
My dad had a handful of stories he liked to tell when I was growing up, like repeatedly playing a favorite vinyl record. One was about me loving music since I was an infant. “You’d stop crying when I sang,” he’d say. As a child, I regarded his recollection with…
The older I get, the more easily I cry. It never used to be that way. I didn’t cry at movies. I definitely didn’t cry when I was happy. Crying was terrible, and I hated every second of it. Now I cry at the drop of a hat. Tense conversations…
“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since becoming more hydrated, I no longer need to be poked and prodded every time I go…
Hi, friends. It’s been a minute since I’ve written to you. Some of you are well acquainted with me, while others are just beginning to peek into the window of my life as I put pen to paper. Yes, I know this is a digital age, but my love of…
Unlike most days when I draft my column, I had this one all figured out. Recent brain sparks of potential topics provided me with such confidence. I plopped down at the computer earlier than usual on Sunday to tend to a few odds and ends before getting down to the…
My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?” In a place designed to capture the imaginations of children, leave it to Lily to break the spell with…
Makeup and I have had an on-again, off-again relationship over the years. We were introduced when I was a kid. Though I don’t remember much of my childhood because of relational and medical trauma, I do vividly remember my mum taking me to buy lip gloss when we were on…
Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it? We all…
When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car full to the brim with bathing suits, beach toys, and, of course, all my…
