Looking forward to the new year with more confidence than ever

I had no idea that I didn’t have a “normal” amount of makeup. Despite owning two full bags of products, excluding my brushes, it never occurred to me that I possessed more than the average person. It wasn’t until I brought my kit to a friend to borrow for her birthday last October that I realized the amount of makeup I own might make me look a little obsessed, if not insane.

As my friends pulled out item after item after item from my bags as though I had stolen them from Mary Poppins, I learned that not everyone has an entire collection like mine. Most people own just a few things to make themselves look a little more put together.

It’s not as though I purposefully wanted to hoard makeup like a dragon hoards gold. What I wanted was to make the ritual of getting ready more accessible and comfortable for me. Evrysdi (risdiplam), the oral disease-modifying therapy that halts my SMA progression, has improved my strength and mobility significantly, but not enough that I can do my makeup the way a nondisabled person can. Someone always has to hold and tilt my arm for me; therefore, my tools must be as foolproof as possible.

Unfortunately, accessibility isn’t something the cosmetics industry at large appears to think about. As a result, I have spent way, way more money testing different products than I intended to. I probably own enough to rival a professional makeup artist.

Recommended Reading

July 23, 2025 Columns by Sherry Toh

Finding the beauty in patiently developing a creative project

Time, mystical time

There was a time when I didn’t care about my appearance at all.

Throughout my teenage years, I was acne-ridden, dressed in whatever my mum chose, and found makeup too much of a hassle. I didn’t think anyone would care about how I looked, only that I had SMA and a severe hunchback. Skin care who? Why go through all that effort for nothing?

If only my younger self could see me now. I don’t think she’d recognize herself in me. Perhaps literally.

Seven years into exploring the world of makeup, and after about a year of relearning to apply it with my own hands, I now consider applying makeup as one of my favorite activities. I love it as an art form, how it can enhance facial features and bring self-expression to life. Just the other day, I wore shimmery green eyeshadow that reminded me of my favorite video game character — and I was wowed by how it made my eyes as vivid as brown opals.

It’s also the only hobby I have that’s entirely tactile in nature, no screen required. In a world of digital dominance and companies viewing attention as currency, I’m increasingly looking for other pastimes to calm my brain, but they’re hard to come by if you have a mobility disability like SMA.

Now, I meticulously plan what I’ll wear out (unless I’m visiting the hospital). I look forward to receiving compliments on my technique and color choices, and to discussing them with friends and family.

Hell and heaven on this journey

I don’t believe it’s a coincidence that I gained a mountain of confidence in 2025. It wasn’t just the year I became a bona fide award-winning disability advocate; I also got to enjoy in full the privileges of having Evrysdi, a power wheelchair, job opportunities, money I’d earned as an adult, a psychologist, and a pain specialist to manage chronic pain. I’ve never had the social and medical aspects of my life work in unison before. The combination of all these things gave me a newfound freedom and unlocked aspects of me I never knew could exist.

I feel more like myself than ever, in makeup, rare disease, and all.

Boredom and restlessness were a problem! They hadn’t been a problem for me since childhood. But last year, during lull periods, I’d find myself having too much energy. It’s a good thing I made new friends and got closer to old ones.

“What a wild difference a year makes,” I’d texted a friend in the latter group. I turned 26 in the hospital in 2024. Last year, I turned 27 at home and enjoyed a Japanese buffet that same evening.

Knowing now how life can turn around in seven years, a year, or an instant, I’m energized for the year ahead. 2026 could turn out badly for me. Or it could be great, or a mix. Most likely a mix. Regardless, I’m excited to live it and see what it’ll bring me. I hope you are, 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.