Stopping to reflect on who we are becoming

“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 was the culmination of Kun questioning the purpose of her life and what she had to give to the world.

Throughout the play, Kun was moved from tank to tank by the aquarium owner and disciplinarian Dawson. While Dawson believed Kun needed to follow the “perfect” circle of life with the other, nondisabled fish, Kun remained unconvinced and ultimately fled the only environment she’d ever known.

Yet, although free, Kun still swam in the same patterns she was taught. She knew she had to do more, that she could be more. But how? What was the first step?

Recommended Reading

Sept. 18, 2026 News by Andrea Lobo

Mental health symptoms common in SMA patients, their caregivers

Enter Water, an entity who had seen all manner of sea creatures carve out their own spaces and thrive in diverse ecosystems. Water provides Kun an answer with the question I mentioned above: “What does your heart say?”

It was a question I needed to hear. And perhaps it’s fitting that it came from the last play Ow would create — “Cut-Off Point” — before leaving the small island of Singapore for Oxford on a Rhodes Scholarship.

Cue Céline Dion’s ‘My Heart Will Go On’

SMA dictates my life in certain ways. It requires routine medical assessments, puts my body in the hands of other people as well as machines, and leaves me easily fatigued. But it wasn’t completely due to SMA that my health couldn’t keep up with the demands of Singapore’s education system, and, therefore, I couldn’t benefit from it. That’s partially the fault of inaccessible education policy.

I often wonder whom I would’ve become if I weren’t homeschooled. Would I be as accomplished as I am now if remote learning had been an option? More so? Less so? Would I be more popular with my peers or have developed low self-esteem from bullying?

One thing I know for sure is that I wouldn’t have felt trapped by my lack of experience in public education. I could comprehend college-level research by the time I was 20, but without exams to prove it, no one believed I had any skill sets, so they wouldn’t hire me. My parents and I assumed I wouldn’t ever have a job, let alone a career that’s received multiple awards and networking opportunities.

Meeting fellow SMA News Today columnist Brianna Albers on Facebook in 2019 was a stroke of luck. She didn’t know it at the time, but I admired her for the position she held and the opportunities her writing had brought her. Who could’ve predicted that I’d become a columnist because of her, which led to other incredible paths? I’m still electrified by the journalists, artists, researchers, video game developers, and politicians I’ve met along the way.

This year, I found myself at a point of reflection. For the first time, I had a choice about the work I could do. Many people know my name because of the gaming journalism I’ve done. But in the past few years, I’ve also explored research work and performing arts, with the help of new friends who saw potential in me, just like Brianna did.

I’ve spent the last nine months trying to decide which branch of my career to continue developing. I kept asking myself which would be the wisest and most practical choice. In therapy sessions with my psychologist, I kept complaining that I thought too many institutions and organizations think too small. But I didn’t recognize that I wasn’t listening to my heart.

What my heart said was this: I want to make once-in-a-generation art that prompts the audience to reflect on how we engage with our political, health, and cultural systems in order to bring about tangible change for the better. I want to create nuanced representation of SMA patients in mainstream media. I want my work to inspire others to keep pushing the boundaries, like the way I feel when I watch things like the television show “The Pitt,” performers like Taylor Swift, and friends like Brianna and Jade.

To borrow from a statement by actor Noah Wyle, I want to do meaningful work with first-class artists.

So I guess I’ll choose every opportunity I get in any field? I don’t know how I’ll do that, but I’ll try.

And what about you? What would your heart say about where you are if you faced boundless freedom?

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.