Columns

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…

During a recent facioscapulohumeral muscular dystrophy (FSHD) wellness group meeting via Zoom, a friend of mine shared a poem by May Sarton that prompted the question: “Do I think of my body as an old friend or as an enemy?” I realized that my attitude toward my body has…

Having a rare disease is not an easy life. I have limb-girdle muscular dystrophy, so in addition to the physical decline of my body, I also need to be hyperaware of my mental health. I don’t think humans were hardwired to adjust to life on their own with a…

This week, I found myself reflecting on how much my life has changed since I joined Shalom Medcare, a care transport and medical escort provider in Singapore that was founded in 2021. Working there has become a part of how I advocate for healthcare equality for those who live…

They say the third time is the charm. However, as a mom to three sons with Duchenne muscular dystrophy (DMD), I don’t find that to be the case. I share seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and…

On May 1, my daughter Jill graduated from the University of Pittsburgh with a master’s degree in public policy and management. She also received the department’s student achievement award and was the student commencement speaker. Earning this degree took quite an effort, as she simultaneously worked full time as director…

It started long before I had the words to explain it. At 9 years old, I noticed small things: I struggled to lift my arms the same way as my friends, I grew tired more quickly, and others were much faster than me. But at that age, it was easy…

My dear friend Colin Rensch had a saying: “If you think you can, then of course you can.” I met Colin because I live with limb-girdle muscular dystrophy, and he lived with Duchenne muscular dystrophy. Colin, who defined passion, purpose, and positivity, passed away last month at the…

I have been writing here about my family since August 2021. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD). In my first column,…

The death of my dear friend Timothy Chan last month still affects me deeply. A couple weeks ago, I stood at his memorial, speaking about a friend who had lived fully despite the barriers associated with a lack of awareness about Duchenne muscular dystrophy (DMD) here in Singapore.