Columns

Why I bit the bullet and decided to try naturopathy

You know what they say. If something isn’t working, try something else. It’s perfectly logical when you think about it. Why sink time and energy into something that isn’t getting you results? But I’ve found that it’s hard to disinvest from something that, for all intents and purposes, should be…

Rare disease awareness offers a brighter future

It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities…

Can I still take on an acting career with SMA?

My voice was off-pitch. I was too nervous. Though the casting directors for Singapore’s nationally televised talent show for children, “One Minute of Fame,” gave no obvious reaction, I realized the problem the second air left my lungs. Still, with all the boldness of an 8-year-old covered in makeup who’d…

An illness in the family brings chaos to my daily routine

A gentle hand shook me awake. The practice of “shaking me awake” originated with my caregiver, Danielle, who was accompanied by her 3-year-old daughter. Elena took it upon herself to wake me up. Every morning, a tiny little hand would touch my face, followed by a whispered warning. “Five,”…

In life with SMA, I’ve learned to go with the flow

Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more difficult to place each time it needs to be exchanged. It clogs much more easily than…

Which straw reigns supreme? A semi-definitive ranking

Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them daily…