I went to Barnes & Noble by myself while my mom went to dinner with a friend. I go out unaccompanied quite often, which requires a little extra effort on my part. When alone, I have to make sure I can maneuver my chair and keep my hand close to my phone in case I need something and have to text my parents or caregiver.
In this particular situation, I was trying to juggle keeping my book open on my tray and my control switches in place while I ordered a snack from the cafe. I first had to elevate my chair so I could be at eye level with the barista. From there, I ordered a cookie and hot chocolate, and then I had to explain to the barista to grab my phone so she could retrieve my debit card, given that I keep my cards stored on the back of my phone in a small compartment. It was during this step that the phone knocked my control switch off the tray as she grabbed it.
Hoping no one was waiting in line behind me, I informed the barista that the switch accidentally got knocked off and asked her to place it back on my tray’s velcro. She was very kind and helpful, but the sitcom scenario didn’t end there. When the barista asked for my PIN number, I remembered that I had a new debit card and hadn’t yet memorized that information. I asked the barista to hand me back my phone so I could look up the number. Like any good nerd, I keep all my passwords and important information neatly organized on one file.
Before I could let this barista go, I had to instruct her where exactly to place my phone back on my tray, and to put a straw in my drink with the wrapper removed. All in all, it took me about five to 10 minutes to place my order and get set up at a table in the cafe, but thankfully there wasn’t a long line behind me. If this were an episode of “New Girl,” 10 people would have been impatiently waiting behind me, and I would have broken my cup with my robotic arm and accidentally run over a girl I had a crush on.
This scenario didn’t escalate to that level, but there’s no denying that my life with SMA is a nonstop comedy. Many others with disabilities will tell you the same thing, which is why I believe humor is essential to life with something like SMA. We have many challenges to deal with every day, and humor helps us get through it.
I see people all the time, both inside and outside the SMA community, who take themselves and everything around them too seriously. I get it. When times get tough and you feel trapped in a never-ending spiral of bad circumstances, being serious and frustrated makes more sense than viewing things through a humorous lens.
Nevertheless, many in the SMA community have found ways to poke fun at how we poop, travel, exercise, and hold up lines in coffee shops. I can’t imagine my life any other way, and I love to laugh at the ridiculousness of every crazy scenario I come across.
In the wise words of the psychotic villain Scarecrow in “Batman Begins” as he throws a match at Batman: “You want my advice? You need to lighten up.”
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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