In life with SMA, I’m changing hustles like the seasons
One thing I’ve learned from not going through Singapore’s formal education system is this: When it’s time to be a working adult, to earn your keep, it’s incredibly hard to persuade someone to hire you if you have a blank résumé. Everyone has to start somewhere to gain employment, and most start with getting an education in school. That wasn’t my experience, so I had to make my own way, which meant that my options were incredibly narrow.
Those options can also be exploitative and pay very little. So when a good opportunity rolls around — whether or not it helps you network or compensates you fairly — you take the opportunity if you’re physically able, no matter what. You go into hustling mode.
I’ve been in that mode for the past three years. In that short span, I’ve worked as a transcriptionist, captioner, columnist, journalist, disability advocate, disability representation consultant for video games, academic researcher, and public speaker. Soon, I’ll be adding virtual personal assistant and children’s book author to the list. And if the casting directors for a local TV drama like my audition, I’ll be adding actress, too. Change has always been my constant.
I’m 24. I started working at 21. It’s wild that I’ve performed all of those roles in just three years, but that’s the freelance life for you.
As impressive (or flighty) as that might sound, chasing every good opportunity that arises poses a problem: Accept too many offers and you’ll risk testing your limits. You’ll often have to push yourself beyond those limits or eventually learn to say no.
I’ve opted for the former option more often than I should, although sometimes — but not always — it’s for the best.
A flurry in the fall
October was a whirlwind month for me. I didn’t intend for it to be that way, but when friends and colleagues asked me if I was free for a project or a talk, I’d say that I was — until suddenly, I wasn’t. I was booked for a co-writing session with my co-author for the children’s book, plus two public speaking engagements about my disability and SMA, and then a TV audition. I brought my caregiver to Singapore’s Ministry of Manpower for a routine assessment of her mental health, which is required for domestic workers in my country, and I received a job offer, attended a video game panel about accessible writing, and had a movie date.
Oh, and I started therapy.
It’s the first time in years I’ve been out multiple days in a row, almost every week. It’s like I’ve become a different person. I can’t find the Sherry who needed her best friend to yell at her until she had the courage to apply for a patient columnist position here at SMA News Today.
I’m not receiving treatment with the disease-modifying therapy Evrysdi (risdiplam) now because I can’t afford it. But a large part of the reason I had the courage to say yes to so many opportunities was because Evrysdi temporarily reversed my SMA progression. With it, I felt like I could do anything and everything. Before, I’d been too fatigued to try new things, like public speaking.
But even as the drug’s effects are wearing off after my last dose in early September, the taste of going full speed ahead has me craving more. It’s like how eating one potato chip can lead to devouring the whole bag. That’s true even though I’m thoroughly exhausted without Evrysdi.
New beginnings in November
With all of that said, everything has an end. Or perhaps a pause would be a more apt term.
My job as a virtual personal assistant begins this month. It’s a part-time role and my first job that isn’t freelance. This means I don’t know how well I’ll adapt to the workload yet, and therefore I must stop hustling — at least for a while, as I figure out my new limits.
I must achieve a new work-life balance. I need to learn how to say no to the people I always say yes to. Otherwise, I’ll be overbooked.
Don’t worry if you’re a longtime reader of my column, though. As they say, the more things change, the more they stay the same. I’ll still be here, spilling my guts twice monthly, in the hopes that I’ll be helping someone, somehow — especially if, like me, they need a reminder that circumstances in life can change for the better.
We won’t always have to keep hustling; every once in a while, we might just catch a break.
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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