Columns

How I’m facing down the ‘End of Youth’ with SMA

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…

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…