Columns

“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li My sister, Jessie, and I have always shared the closest bond among my four wonderful siblings. Growing up, she understood that I couldn’t…

If you had a chance to fictionalize your life in a children’s book, how would you do it? Would you make the protagonist yourself, or would it be a loved one while you are relegated to a secondary role? Would you depict an ideal version of yourself, a character…

My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency…

This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement…

It’s almost a wrap for this year’s May madness. Whew. For me, the month commences with the birthday of a favorite former student and ends with that of a good friend, as well as my nephew’s wedding anniversary. In between are Mother’s Day, spring sports, end-of-school…

Note: This column describes the author’s own experiences with naturopathy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started naturopathy over a year ago without much hope. I was living with a skin condition that no one…

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…

“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…

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…

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…