Columns

“You have your hands full.” I have heard that said hundreds of times over the past 25 years, and I hated hearing it. I always had a response ready: “Sure, but my heart is fuller,” I would say. However, I’m currently in a season of life and caregiving where…

If you’ve read my last few columns, you’ll know that I’m struggling with a lot of new issues due to the progression of my facioscapulohumeral muscular dystrophy, along with joint issues from a head-on collision with a drunk driver years ago, and just getting old. As I’ve grown…

I had my annual physical last week and when the doctor told me I was in good health, it was a relief. I let out a breath I hadn’t realized I was holding. I am a mother to seven: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary,…

Each year, I attend at least one national gathering of people living with muscular dystrophy. In addition to learning about the most updated care standards, treatment strategies, and research initiatives, I’m able to bond with those who share a similar diagnosis, and have made some dear friends. The upcoming…

June is a quiet month here in rural Nebraska. Most days, only neighbors drive on the street outside our home, and you can hear the wind moving through the plains. That may sound boring to some of you from the big cities, but here it is supposed to be relaxing…

Back in March, I wrote about how living with Duchenne muscular dystrophy (DMD) has shaped my perspective on accessible design. After decades of moving through systems that were not built with people like me in mind, I had come to appreciate how disability can offer valuable insights into…

If you read my last column, you’ll know that I’ve been experiencing extreme physical challenges in the last couple months. These changes are a result of a combination of my facioscapulohumeral muscular dystrophy, damage from a major automobile accident many years ago, and simply growing old. This has…

I recently read a New York Times article about stress. Whether you live with a disability or not, stress is a universal phenomenon. Life is full of stressful moments both large and small that can overwhelm the best of us. In the article, the author asks three questions designed…

I know what you’re thinking: another awareness day. One more health observance to briefly acknowledge for 24 hours, then mindlessly scroll past once it’s over. But for ultra-rare neuromuscular conditions, awareness is everything. Disease-specific awareness days actually matter. They create exposure, support, belonging, hope, and collaboration that can have a…

Here are some facts about me: I am an introvert, I am quiet, and my strongest voice is the written word. I grew up in the foster care system and experienced childhood trauma that makes it hard for me to know how to be around people. I am a mom…