A smiling stranger was quickly approaching us in the line to order our food, and she looked intent on talking to me. I didn’t recognize her. Had I forgotten who she was? I shouldn’t have worried. We didn’t know each other, and what followed was the normal, cringeworthy kind of…
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Throughout my life, I’ve experienced a certain kind of loneliness that comes from being surrounded by people. Conversations are happening all around me, and laughter fills the room. Everyone seems to be connected to one another, but I still feel invisible. Let’s face it, though. There’s nothing invisible about living…
When I was born 31 years ago, spinal muscular atrophy (SMA) was a very different disease than it is today. There were no approved treatments. No gene therapy. No medication designed to slow its progression. For those of us born before the era of SMA treatments,…
“What does your heart say?” Crouched next to the character of Kun, a newly freed deaf fish who lived trapped in an aquarium her entire life, was the personification of Water. Played by theater artists Jade Ow and Deborah Chai, respectively, on stage at Singapore’s Nanyang Technological University, the scene…
Someone recently suggested that I write about my school days and what it was like growing up with spinal muscular atrophy (SMA). My initial reaction was to scrunch up my face and shrug, because my experience in school felt very normal to me, nothing especially remarkable or strange about…
My daily schedule is full, so it’s important for me to use my time wisely. This allows me to enjoy fun activities and do the work I love. I face various challenges in balancing my time. Some can’t be changed, but I have found solutions to others. What I…
Our third baby, Jeffrey, arrived May 18, 1997, three days after my 43rd birthday. He joined his siblings, Matthew, then 10, and Katie, then 7. Although the pregnancy was unplanned, my husband, Randy, and I warmed up effortlessly to the idea of another baby. We didn’t worry about our lack…
A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because…
When you have a rare disease like SMA, there comes a point when you have to consciously choose to trust your doctors. Luckily for me, I grew up with a robust medical team. I had access to a variety of well-renowned medical systems, including my beloved Gillette Children’s, M…
My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…
