Columns

The Terror and Beauty of Miracles

I had different plans for this week’s column. As I write this, I have a spreadsheet open with my column schedule. Next to the deadline date I’ve typed “TFIOS column,” which stands for “The Fault in Our Stars,” a young adult romance novel by John Green that explores how…

My Latest Wheelchair Woes May Soon Be Over

A year after I started fine-tuning the seating of my new wheelchair, I found myself back where it all started. I wrote a few weeks ago about my continuing struggles with the chair. Since then, one of three programming problems has been solved. My seating appointment was meant to…

Finding Somewhere Between Burnout and Balance

I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my last column, I haven’t written much in the past two months due to my hospitalization. Any…

Clearing Out, Memories, and an Easter Wish

Ahhh. Spring glory in the North Carolina mountains! Light snow covered the ground Sunday morning; by afternoon, honeybees bustled on yellow dandelion flowers, gathering precious pollen to feed bee babies in the hives. Honey, left, and Maple, watching the snow melt Sunday from their sunny spot. (Photo by Helen…

Celebrating My 1st Evrysdi-versary and Looking to the Future

My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to the…

Thanks, but Your Prayers Really Aren’t Necessary

Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of flowers.

Advocacy Starts With Being Kind to Yourself

Today, I thought about the question, “How can I become a better advocate?” For the first time, I realized that I’d taken part in advocacy activities even when I didn’t know it. This is how it happened. I like to buy and download turn-based PC games. In these, I…