Yesterday Scarlett and I joined some of her friends from school and their moms at the International Hip Hop Dance Fest in San Francisco’s Palace of Fine Arts. The performers—10 different groups—were incredible. Even the youngest ones made it look easy, circling hips and popping shoulders, windmilling arms and feet rarely flat on the floor. There were several acts that made me want to stand up and applaud. But, you know.
I get chills watching people who can dance. I’m not a very good dancer. I mean, obviously, people with severely weakened limbs are probably not tearing it up on any dance floor, but what I mean is, even before ALS took my mobility, I wasn’t a very good dancer. It didn’t really matter. I LOVED to dance.
The only times I’ve ever performed in front of an audience were my days on the high school drill team. This meant football game half times and weekend competitions, flying splits, kick lines, and Vaseline teeth (keeps you smiling.) It was fun to practice routines with the team and to compete, even if it did mean wearing the same itchy and uncomfortable nylon uniforms that other girls had been sweating in for twenty years.
So I did that for one year, and then decided my time would be better spent drinking Boone’s Farm with my friends and underachieving on the soccer team.
Years later, living alone in a Berkeley studio, I would sometimes just crank up the music and dance by myself, a little bit for exercise, a little bit for fun, and a lot for peace of mind. I took dance classes, everything from hip hop to salsa. Actually, it was just hip hop and salsa, but it sounded better the first way I wrote it.
When Scarlett was a baby, and I was still safe on my feet, we had dance parties in our kitchen. I would swing her around, throw her over my shoulders. We would shake our bodies together and laugh. She doesn’t remember any of that, although she did come away with an oddly enduring love of Big Audio Dynamite II’s The Globe.
She also retained a passion for dancing. It is her favorite activity, and the first thing she wants to do every morning. She takes my phone, plugs it into her headphones and spins in a circle for as long as we’ll let her. Her signature move for more than three years has been The Spin. Given her proficiency at this, Rob and I often try to make predictions about her future career path. Astronaut? Circus performer? Public relations?
I would love to dance—really dance—with my daughter. I wish we could try out some of the things we saw yesterday, when we were watching these people whose muscles follow instructions, their bodies doing precisely what they’re supposed to do and then taking it 1,000 choreographed steps further.
When Scarlett spins, I want to pick her up and spin with her…and then maybe introduce her to a few new moves. Ironically, the one move I can do in my wheelchair is The Spin. So sometimes the two of us will blast music in our kitchen and just spin together. It’s not quite the same as those original dance parties, but it’s pretty sweet. We still laugh.
Sometimes when I see people jogging along the bay or walking down the street with a yoga mat, I feel such nostalgia for the time when my body could move like that. It’s always going to be hard for me to believe that those simple things are no longer for me. But yesterday was different. There is no chance that I could ever do what those dancers were doing, even if I were healthy, so I didn’t experience any disappointment or longing for times past. Instead, it was an opportunity to just sit back and appreciate how utterly amazing the human body is. How, when it works, it really works.
Check out one of my favorite acts from the festival here.
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Reading this, I had visions of you and Alison dancing around our living room to the Beach Boys’ “California Girls” on the juke box. The moves were not quite salsa or hip hop but a fine mixture of barefoot slides, dramatic arms and spinning in circles. Heartwarming memories. Keep writing and sharing your “world”. We love you, Sarah.
I had the same image come to mind! And ditto on the “dramatic.” Much love to you! ~ Mari
Reading this piece reminded me of this summer and dancing in your dining room. Dahlia learned how to spin from Scout- she still does it. She also puts on the headband your mom gave her with the two sprouts of red hair. People giggle when they see her bouncing around with it on and she says, ” it’s from Scout!” I love that fun memory. Xx
Sarah, I have been reading your posts for a few weeks now. Like you, I was diagnosed with ALS in 2012. What you write speaks to my heart, my journey, particularly as you write about being a mom with ALS. My boy Will is 11, whenever I feel dark, all I need to do is look into his laughing blue eyes and hear his infectious laugh and my fear evaporates, at least for a little while. Thank you so much for your writing, it’s encouraging, truthful and helps me not feel alone. God bless you my sister.
Thank you, Becky. Love to you.