Finding the beauty in patiently developing a creative project

There’s nothing quite like beginning a new project. It’s like falling in love with someone: Your imagination takes you on flights of whimsy, you itch and ache to have your hands on it, and there’s a possibility it will consume your life. At least for a short while.

But then, as always, the honeymoon period fades with the newness, and you discover it’s much more work than you thought it’d be. You must assess how much you’re investing and whether it’s worth the returns. You ask yourself if you should keep going.

This is especially true if you have SMA and you’re easily fatigued, as I am. A few hours of work for someone who’s not disabled is a day or two for you. You don’t have the dexterity to type or draw fast enough, to do certain things without a caregiver’s help, or to maintain the stamina to sit upright.

Unless you mention it, it’s unlikely anyone would know how much effort you put in when they look at the final result. That initial feeling of falling in love could crash into a brutal reality — potentially literally, if you’re not checking in on your body’s energy levels. You could need more naps afterward. More days off. Worse-case scenario, your immune system will fail you and you’ll develop a respiratory infection.

But you have your supplies. You have a setup. You’ve told people about the project. You’ve already invested time and sweat. And if you try hard enough, you can still feel like the results of your dreams are within reach.

So … what do you do?

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Making up the new as I go

I’ve worn a lot of hats on my career path. I’ve been a patient columnist, a journalist, an assistant researcher, a transcriber, a disability advocate, an administrative assistant, and a community moderator. Yet for some reason, I’ve decided to add “beauty influencer” to the list and place myself in the conundrum outlined above.

I blame it on all those months I spent in the hospital last year. Without much to do, I spent my days alternating between watching “Grey’s Anatomy” and scrolling through TikTok, whose algorithm eventually brought me to beauty influencers advocating for more inclusivity for people of color. And that was it: I fell more in love with makeup than I thought I ever would.

I’m sure it also had something to do with wanting to feel pretty in the hospital. Every single day, I wore the hospital’s purple pajamas and cleaned my face with baby wipes. No skin care. No tinted lip balm. Just pajamas, dandruff, and acne.

My sense of identity — and by extension, my sense of feeling beautiful — felt stripped away. As I watched influencers of color advocate for the beauty industry to be more inclusive of them, I wanted disabled people like me to be included, too. Alas, disabled influencers with neuromuscular disabilities were far and few between.

So I thought, “If you can, be the change you want to see in the world!”

Creating TikToks was to be my new project. I thought about it for months before filming something.

But I quickly discovered a possible reason there aren’t many beauty influencers like me. Besides the high cost of makeup and skin care, as well as the necessity of functional hands to open and apply products, there’s the work of filming, editing, and adding captions to each video. Hours of effort gets condensed into mere minutes of one or two videos. And there’s no guarantee people will see what you’ve made, particularly if you’re just starting out and have no audience. It can feel like you’ve done a lot for nothing.

What have I decided to do, then?

I’ve decided to adapt methods to my disability and see how things go. I’m figuring out what works for me and the best way to use my time. Because despite how tired I am lately and the respiratory infection I’ve caught from exhaustion, I’ve indeed been enjoying my new project.

Most importantly, though, I’ve decided that I don’t need to create and post videos as soon as humanly possible. Telling myself to do things according to my own timeline has helped immensely with getting pressure off my back. With how fast the world spins, I think we forget we can do that sometimes.

I posted the first video of myself doing my makeup last week. It was filmed in May.

I hope there will be hundreds in the future, filmed by myself and others. But for now, we can enjoy the one video and use it as a reminder that all projects and relationships take care, kindness, and patience to complete.

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.