If you haven’t met this celebrity of the SMA community, I’d like to introduce you to my friend Angela Wrigglesworth-Titcombe. She’s 46 years old, has SMA, and is a fifth-grade teacher. She and her husband of six years, Justin, love to travel and enjoy…
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Being diagnosed with a progressive neuromuscular condition like spinal muscular atrophy (SMA) often brings a range of physical challenges that significantly impact both the people with the disease and their loved ones. One of these challenges is scoliosis. According to the American Association of Neurological Surgeons,…
“So, how are you? What have you been up to?” I asked my friend Phoebe Chua back in November. It’d been a decade since we last saw each other. But we’d spontaneously reconnected and decided to go to a movie together. I wanted to know everything about her life…
For the past couple of years, I’ve been playing a Star Wars role-playing game (RPG) with friends from church. Yes, you read that sentence correctly. My church is progressive and a number of us in the congregation are self-professed geeks. Once a month, we gather for several hours…
Mom and I always bring another person or two to my specialist appointments at the SMA clinic. It’s out of state — about three hours from our home — so it’s easier when we have extra helpers throughout the long journey. It’s also nice to have company.
I’ve been through a lot with SMA, but in April, I faced something different. Early that month, my mom and I both tested positive for COVID-19, something we’d strived for years to avoid. It started with body aches the night before I tested positive. The next day, chaos…
If I owned a calendar, its December through April would be stained with tears. The square where Dec. 16, 2023, lands would have angry-looking ink blotches on it — to represent how I felt on my 25th birthday. My ex-girlfriend and I broke up on that day. I cursed her…
Today is my birthday, and it’s a big one. In fact, earlier this year, my heart palpitated a bit when it sank in just how big it is. By now, however, it seems minimally eventful. Sunday, of course, was Mother’s Day. I heard that morning from our daughter, Katie, and…
I was all ready to skip this week’s column, convinced I had nothing to say and no energy with which to say it, when I realized something. I’m burned out. It crept up on me so quickly I barely had time to prepare. One moment I was crafting a plan…
In the 1987 science fiction spoof movie “Spaceballs,” Princess Vespa (Daphne Zuniga) is betrothed to Prince Valium (Jim J. Bullock), who dozes off constantly. He has chronic drowsiness, so much so that he yawns when Vespa flees their wedding ceremony in a runaway spaceship. When I first saw…
