Self-doubt and the endless pursuit of a fulfilling life
I've accomplished a lot in my life, so why am I so afraid?
In the true fashion of a passionate actor, Neil Newbon opens a TEDx Talk by imitating an ape — a choice inspired by his role voicing the lead ape in the video game “Planet of the Apes: Last Frontier.” Throughout the presentation, he effortlessly switches between other characters as well, including the beloved vampire Astarion from the video game “Baldur’s Gate 3.” Even the title of his talk is dramatic: “How Performance Capture Saved My Life.”
But if you distill his message to its purest form, it is beautifully mundane: Performance capture might’ve saved his life, but community, a focus on his craft, gratitude, and humility help him thrive both in work and life.
It’s not a message I necessarily needed to hear, but rather one I needed to see in practice.
A fear of the unknown
As 2025 winds down, time feels like it’s speeding ahead, along with my life. I’m currently confronting the fear that I’ll never be good enough for the work I want to accomplish, whether it’s with my acting, research, or writing (particularly my acting). I’m terrified that my projects will fade into nothing.
The worst days are when I believe my SMA is my biggest obstacle, if not a significant contributor to my failures. On those days, I break down in the dark and cry until I can self-regulate.
I know my fear is nonsensical. For a girl who was homeschooled, I’ve already accomplished a ton that will never amount to nothing. I was the first adult SMA patient in Singapore to be administered Evrysdi (risdiplam), after a very public fight to get it. I contributed to Singapore’s first disability studies anthology. I am working under some of the best people in academia, performing arts, and video game development.
My doctors and nurses, who save lives every day, call me inspiring. There’s a certificate with my name on it from this year’s Singapore Health Inspirational Patient and Caregiver Awards on my television as proof. Still, I catch myself saying, “I just want to do something that will matter to people.”
I don’t know where this endless yearning comes from, or what I actually want. Maybe it’s because I watch too much TV and too many films. Maybe it’s as simple as just wanting attention. If I knew the cause, I’d work to dial it down.
The best I can do right now is tell myself to focus on the people around me and the work in front of me. I must believe that they’ll lead me to where I’m supposed to be. Sometimes that means watching a TED Talk by one of my favorite actors. Heck, Newbon’s life turned out OK. Hopefully, I’ll look back on this column in a few years and think that mine turned out OK, too.
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.
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