Columns

Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot walk or bear weight, I use a power wheelchair as my primary…

In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness. I couldn’t roll over, wasn’t able to hold my head up, and had minor…

Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in one’s home. Unfortunately, not everyone is familiar with home health nursing and…

The 2023 film “American Fiction” follows a frustrated writer named Thelonious “Monk” Ellison (portrayed by Jeffrey Wright). While his books receive critical praise, his lack of commercial success stems from his resistance to writing more popular literature. When Ellison visits a bookstore, he groans when he finds his…

“Come on, girl, just use your four extra arms!” I often tease my friends like this when we’re trying to accomplish a tricky caregiving task together. Some things would go a lot smoother if we had more hands helping out, but because my spinal muscular atrophy (SMA) weakens my…

Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I…

When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears of those around me that my future might be shorter, narrower,…

My teacher parents were hardworking, generous, creative, witty, and caring. Shortly after I began college, my beloved maternal grandmother moved into an apartment added to our family’s house. During Grandmom’s episodes of congestive heart failure, Dad took her to the emergency room every time. Genuinely happy to help, he…

The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore, donned my cutest golfing outfit, and asked my official caddy to tote my clubs…

Words always come to me when I need them. Lines by Ada Limón, Anne Boyer, and Marie Howe act as life preservers, guiding me back to my center. When life gets tough, I always find myself at the feet of Julian of Norwich. “All shall be well,” she says,…