Columns

How a nasojejunal feeding tube saved my life

“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…

Lessons from a newish makeup fan with SMA

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…

Finding joy in my life amid SMA challenges

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…

Enjoying the Cure SMA conference without attending

Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997. Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the elementary…

A call to show up for those who are queer and disabled

Last year, I had the incredible privilege of interviewing Corinne Busche, the current game director for Dragon Age’s fourth entry, “Dragon Age: Dreadwolf.” Busche is someone in the video games industry I’ve come to greatly admire for her kindness toward fans of the franchise and her enthusiasm about “Dreadwolf.”…