With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving hand slips I could quite easily ram someone over with my wheels (by accident of course). Having said that, you’d probably assume I wouldn’t be the top candidate for someone’s dance partner.
Oh, how wrong you are.
I recently went to a friend’s wedding, and while I can be a cocky individual, I’m not exaggerating when I say that I killed it on the dance floor. I may not be able to do much with my own arms, but fortunately, I have a robotic arm mounted to the side of my wheelchair that I can use to impress almost anyone, particularly the ladies.
The evening started off with a lot of pleasant, extremely geeky conversation during the reception. My friends who got married are both hardcore comic book nerds who I met through the student newspaper in college, and they put me at a table with like-minded pop culture gurus.
Amid the chatting about Captain America, “Avengers: Infinity War” and other topics related to the Marvel Cinematic Universe, the discussion turned to real-world subjects. As we were eating, the young woman sitting next to me expressed her fascination with my JACO robotic arm. I mean, it’s not every day that an actual Iron Man is sitting at a table with a bunch of nerds.
As I explained to this woman the mechanics of the arm and what I used it for, this led to a discussion about my having SMA. It was then that this woman told me she had cystic fibrosis, and also used the Vest Airway Clearance System to combat respiratory issues, and she knew about BioNews Services, the company that owns this website.
In my mind, I was thinking: “No way! You have a rare disease too! We use the same medical equipment! That’s awesome!”
In case you didn’t already know, many of us with rare diseases and disabilities have pretty sick senses of humor. Memes such as the ones in this blog post make me laugh hysterically.
We continued talking for a while, and eventually, it came time to dance. Now, this woman had helped to coordinate the dances with the bride and groom, and she was determined to make everyone at the reception get on the floor at least once. She had already gotten an introverted friend of ours to dance with her for the first song, so by the time she came to me I was ready to jump into ultimate show-off mode.
Like most power wheelchairs today, mine can tilt and recline, and it has an adjustable footrest and can raise up. I’m used to having to look up when I’m talking to someone, but anytime I’m on a dance floor I take advantage of the lift feature to get up to my partner’s level.
Once I did this, I really caught everyone’s attention by using my JACO arm to bust some moves. I raised it in the air while my partner grabbed the fingers, and from there we stole the spotlight. We spun around, slid across the floor, moved forward and backward, and all the while she used the hand of my JACO arm to do a few twirls. I don’t have any pictures, but needless to say, we were good.
This isn’t the first time I’ve shown off my hilariously amateur, yet very high-tech, dancing skills. I’ve been to other weddings and dances in high school, and of course the end-of-the-week dance at the Muscular Dystrophy Association camp. I may not know the first thing about dance terminology, but I’m not afraid to pretend I’m on “Dancing With The Stars: The Wheelchair Edition” when the opportunity arises.
It’s easy to think “I can’t/that’d be too awkward/there’s no way that would work” when you have SMA. Our limitations often feel endless and inescapable, and sometimes it’s easier to just bail on an event rather than risk embarrassment.
I get it, but here’s my rebuttal: If I can dance with my practically nonexistent arm-strength with a woman I just met, then there are things you can do that you think are impossible. I had a great time, made new friends, and impressed everyone on the floor with my originality and smooth execution.
After all, I can do the robot like no one else.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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