Columns

Late August marks the start of a new school year, which still affects me even as a 29-year-old working adult. Though I graduated from college in 2016, my niece is starting first grade, my older nephew starts preschool in a few weeks, and both of my younger nephews are back…

In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as the enemy to end all enemies. We both hate mornings with a passion, and have designed…

Our cat, Toby, waltzed into our family over a decade ago for what was intended as a temporary arrangement. She won our affection quickly, and we decided to welcome her into our home indefinitely. Not that she needed an invitation to stay. Toby said she owned the place, and who…

Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of myself, my body has its own agenda. Lately, this feeling has been weighing heavily on my…

Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where you…

When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put rods in my spine. Though my scoliosis was severe, my orthopedist hesitated at the idea…

For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but as…

“Hey, buddy, don’t get a speeding ticket!” “When was his last X-ray?” “Oh, wow, you work!” For whatever reason, society loves to infantilize disabled people. It’s practically a hobby for some people, be they medical professionals or middle-aged pedestrians looking to test their comedy skills when they see a wheelchair…

Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. On our way home from the annual Cure SMA conference, I told my mom, “Wouldn’t it be funny if…

On the second Saturday of every August, the setting sun fades and is replaced by the ethereal glow of candlelight. Around the world, the SMA community comes together for a twilight vigil to remember our loved ones who have departed and to honor those living with SMA. Candle-bearing crowds…