The ability to participate and say without words that I am here is priceless
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Over the course of three days, I recently had the joy of attending three live music concerts, each with its own distinct setting, energy, and story. I knew the performers, I loved the music, and I was grateful to be there, surrounded by the kind of shared excitement that only live music can create. But in the midst of it all, a familiar ache settled in: I wanted to clap, and I couldn’t.
Because of SMA, the muscle atrophy in my hands and arms makes it hard for me to put my palms together with any significant force or steady rhythm, so I cannot applaud at the end of a song, and I can’t clap to the beat of a favorite tune. I find myself patting my knee with my fingers, just to try to participate on a small level, but it doesn’t seem like enough. The motion and the sound both feel important to a nonverbal expression of enjoyment and appreciation.
Between concerts, I tried to brainstorm possible ways I could creatively solve this conundrum. As I was thinking, I recalled something that one of my friends is infamous for saying: “I bet there’s an app for that.” I decided to follow this hunch and searched the app store on my phone. Mostly, I found apps that allow your devices (like lights) to respond to the sound of a clap. But I kept scrolling and, believe it or not, I found what I was hoping for!
It’s called “Slow Clap.” It has a red icon with two white clip art hands. When I open the app, it’s very simple, with no menu or options. All you do is either shake or tap your phone screen, and it simulates the sound of a clap. I can tap it slowly with one finger to get individual claps, like when I want to clap to the rhythm of a song. (This is taking some practice, though, so I don’t embarrass myself by clapping off beat.) I can also use two fingers and tap quickly, and the longer I do that, the more the applause builds and intensifies, adding calls and whistles and culminating into a stadium-level cheer!
By the final concert, I was using the app alongside the crowd, contributing to the joyful noise around me. Since then, I’ve even used it to cheer on caregivers and celebrate small victories. It may seem like a simple tool, but for me it restored something meaningful: the ability to participate, to respond, and to say without words that I am here, I am listening, and I am grateful.
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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This site 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.
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