Columns

I live with spinal muscular atrophy (SMA), a condition that, in my case, makes it impossible for me to move my body on my own. But that’s not where my story begins — or ends. People often call me strong, but they rarely see the whole picture. They don’t…

No matter what SMA throws at me, people invest so much into my care that hardly anything keeps me down for long. I invest a lot into my care as well. Two years ago, I wrote a column about how hard I work with my Vest Airway Clearance…

There’s nothing quite like beginning a new project. It’s like falling in love with someone: Your imagination takes you on flights of whimsy, you itch and ache to have your hands on it, and there’s a possibility it will consume your life. At least for a short while. But then,…

Last week I had the honor of speaking at and participating in the 39th annual SOFT Conference. SOFT, which stands for Support Organization for Trisomy 18, 13, and Related Disorders, is a nonprofit that offers support and connection for families around the country who have a loved one with…

My brother’s birthday was July 13. While we generally aren’t able to get together to celebrate, we managed to do so in 1997. Paul’s birthday fell on a Sunday back then, too. At the time, our parents served as innkeepers of the still relatively new family lodge on the…

Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged there more than anywhere else. We played games, sang songs, stayed up talking all night, and…

I turned 30 on June 29, which I suppose is why this year’s Cure SMA conference was so difficult for me. You can’t pass from one decade to another without reflecting on everything you have — or haven’t — accomplished. That type of reflection is particularly difficult when surrounded…

I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and Canada over the years: mountains and canyons, beaches and forests, oceans and lakes, national parks and…

“My SMA will weed out all of the undeserving jerks on the dating scene for me,” I once thought. Reader, I was not at all correct. Oh, how naive I was in my early 20s. In my defense, I was happily committed to a relationship with my now…

Upon diagnosis, caregivers and SMA patients are often warned to watch the patient’s respiratory system. The weakening of this most basic function of the human body is the most common cause of death for people like myself. Hence, regular pulmonary exams are done, physiotherapists are called in to teach…