With SMA, Would My Life Be Better in the US?

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by Sherry Toh |

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Main graphic for column titled "Wandering the Lines," by Sherry Toh. The image depicts a girl in a wheelchair sitting outside among the trees surrounded by fairies, with the sun overhead.

My parents used to joke that I should’ve been born an American. As a kid, I loved burgers and fries, I was enamored with Disney movies and country music, and I spoke “proper” English better than anyone else in my family.

That’s not to say I didn’t love it here in Singapore, with our local cuisine, media, and English dialect known as “Singlish.” I did. But in my parents’ eyes, my preferences mostly leaned toward things that were stereotypically American.

Because of the American media I consumed as a child, I grew up idealizing the United States. Los Angeles was my dream destination, and when I was 3, I begged my parents to take me there. I was about 9 when we finally saved enough money to go.

The month we spent driving around California and Nevada was the happiest of my life. Miraculously, I was never healthier, despite my SMA. I’d flown with a chest full of phlegm, but it cleared up the night we reached the Los Angeles International Airport. I got to see fireworks at Disneyland, eat an omelet served at a small family business that I still think about, experience snow in spring, meet fantastic people, and walk the streets of Las Vegas without a single cough. My parents and I couldn’t believe it.

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The dazzle of the U.S. faded as I got older, while Singapore became a rising star on the global stage. We went from being a tiny island few thought about to a glamorous Asian city that’s been praised internationally for its healthcare system. I became more grateful for Singapore, particularly due to its environmental awareness, growing awareness of the disabled, and relative peace.

Lately, however, I’ve been questioning whether Singapore is where I want to be. It began with a conversation I had about my living situation. I was struck by my discontentment and wondered whether my life might be better in the U.S. instead of in Singapore. 

Singaporeans reading this might be puzzled. How could my life be better in the U.S., what with severe systemic issues like a broken healthcare system and frequent mass shootings? 

There are several reasons. To start with, queerness is celebrated and represented more in the U.S., something that’s important to me. Career opportunities exist for disabled games journalists like me, while Singaporean publications don’t yet have dedicated sections to gaming news. Private programs provide access to disease-modifying therapies for SMA patients. I’ve heard that securing healthcare for SMA patients in the U.S. doesn’t leave them as traumatized as I’ve been here. There are conferences like the annual Cure SMA Conference and extra help and resources available for SMA patients. And lastly, my girlfriend and best friend are there.

I’m convinced that the paths to the life I want and the services I need just aren’t here in Singapore. I do love the people here, and I’ve even bragged in a previous column about Singapore’s public transport system. But I simply don’t feel rooted here — nor do I feel like I belong. 

Despite all of this, I can’t simply move to the U.S. Firstly, it would cost a fortune, which I don’t have. Secondly, immigration laws worldwide tend to be discriminatory toward the disabled, and navigating U.S. immigration rules in particular would be challenging and complicated.

Then there are the other practical considerations, such as whether I’d need to access public services and how to go about doing that. Which state would I settle in? What would the paperwork look like if I intended to get married someday?

Still, as unlikely as it looks, I once had the same doubts about having a romantic relationship and acquiring a job without formal education. So who knows? Perhaps my parents’ jokes were foreshadowing — and just maybe I’ll get the last laugh.

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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