Would you trade away your disability if you could? I know many people ponder this, although usually silently, so I thought I’d give you my thoughts for a penny. My short answer is no. Yes, I have days when my disability makes me feel like life is completely draining just…
Columns
Travel has always felt like freedom to me. Some of my favorite memories were made on long road trips with friends, crisscrossing the country in my van — from Maine to Florida, the Carolinas to California, Texas to Washington, and through about a dozen national parks along the way. I…
I recently wrote about how I’ve been in the process of transitioning from a children’s hospital to an adult hospital. It’s meant saying goodbye to the place that knew my medical history better than anyone else, that helped keep me alive through countless challenges, and that understood my…
When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years. Those pictures have remained on my wall…
I don’t talk to my ex anymore. For the sake of this column, I will have to let her know about it as a courtesy. But as far as a daily choice goes, it’s not one I make anymore. Readers who’ve kept up with my column in the last few…
My caregiver held the toothpaste tube in both hands, meticulously squishing it flat from the bottom all the way up to the nozzle. I laughed: “It’s OK, I have a whole new tube ready to go in the closet.” She shook her head and gritted her teeth as she forced…
Ice cream wasn’t always one of my favorite treats. Don’t get me wrong, I loved it, but it wasn’t one of my go-tos when I wanted something cold or sweet. I think SMA is part of what changed that. When I was 13, I barely survived a series of…
It’s been almost four months since my husband, Randy, and I made a hasty run to Charleston, South Carolina. Our mission was to adopt a dog our daughter, Katie, had found at a nearby rescue. This frequent mama dog named Ellie piqued the spark missing since the loss of…
When people think about exercise, they often picture movement that is visible, measurable, and easy to quantify, such as miles walked or weight lifted. But for people with SMA, staying fit can look very different. We can do quite a lot, actually! From swimming to horseback riding,…
With SMA, I work hard to take advantage of every opportunity that comes my way. But what if I’m missing something? What if there are opportunities that are within my grasp, but I’m not aware of them? That’s why I’ve been doing some inner exploration. It can teach both…
