Makeup for me has always been something I give myself as a gift of self-care. I enjoy doing my makeup every day and enjoy the feeling I get when looking in the mirror at myself all day after accomplishing a new look.
I do my makeup every day, often in front of a live-streaming audience on TikTok. Since starting Evrysdi, my treatment for SMA, I have been able to do my makeup better than ever before.
New abilities with treatment
In fact, only two years ago, I was at a point in my disease progression where I was unable to hold a makeup brush steadily enough to put my makeup on. I thought of having permanent makeup tattooed on my face and the only thing keeping me from doing it was the cost, since touch-ups are often needed.
Luckily, treatment has given me the ability to hold my brush once more without shaking or dropping it.
I can hold my brush, but I can still not lift my arms onto the counter to reach my face without help. To overcome this challenge, my aide sets up the makeup of my choice on the counter and then puts each arm up so that my elbows rest on the counter and I can reach the brushes and colors I need for whatever look I am doing.
I am able to hold and use my brush with one hand on my strong days, but I still have times of weakness when I have to hold the brush with both hands to use it. I also have days when my art is not exactly pristine or perfect, but I enjoy doing it for myself.
Adapting to new ways as SMA progresses
I have learned the art of adapting in my makeup. Adapting to a new way of using old tools is something that everyone with SMA has to learn how to do if the disease progresses and abilities are lost.
I have been adapting to doing makeup since I was 12 years old when I did makeup like Mimi on the Drew Carey Show with bright blue eyeshadow up to my eyebrows. Even though that look was all the rage in the 90s, my mother had a few laughs at my expense because of it and I have a few cringe-worthy photos to remind me.
I do a few things differently from the norm when I do my makeup because of my own ability. When I put my eyeshadow on, my hand(s) hold the brush from the end several inches away from my face.
I am used to holding the brush that far away from my face because holding it closer is near impossible without the ability to move my elbows on my own.
Cleaning my face without an aide
I also started using Magic Makeup Eraser clothes that I bought from Amazon in order to remove my makeup so that I could remove my own makeup without the need for an aide. I do not use soap with the makeup cloths because my face is sensitive and without the ability to run water over my face to wash the soap off, the build-up can break me out.
I use Cerave non-foaming cleansing wash along with the Cerave moisturizing cream daily to help keep my skin fresh. I also use Cerave moisturizer with sunscreen on the days I am outside to minimize skin damage. With Evrysdi, I am extra sun-sensitive so it helps me stay protected.
Makeup is a hobby and passion
Makeup is more than just making my face pretty. To me, it is a hobby, a passion, and proof that my treatment is working.
Do not be afraid to adapt anything you can to continue to do your passion if you lose your abilities. If you need the help of an aide or adaptive equipment, just remember that the joy is in the process, not in perfection.
Is self advocacy a part of your daily life?