Adventures in the Big Apple (Part 2)

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by Kevin Schaefer |

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Courtesy of Kevin Schaefer)

Kevin Embracing my inner alien

Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we made it into the heart of the city, plenty more adventures were to be had that week.

(Courtesy of Kevin Schaefer)

On Wednesday, my mom and I saw that pretty famous musical about one of America’s founding fathers. The name escapes me, but we made sure to get plenty of sleep the night before.

Hamilton!” That’s the one.

Getting ready that morning was a little more time-consuming than usual. As much as I love traveling, it’s always a little frustrating not having the same setup I have at home and dealing with the confined space of a hotel room. My dad had to lift me throughout the week, given that the ceiling Hoyer lift we use at home isn’t portable.

It was fairly difficult maneuvering my bathroom seat to get to the toilet and shower, but we managed. On a couple of days, I didn’t want to deal with that hassle and instead had my parents wash me in the bed. This reduced the number of transfers and saved a good amount of time. But on the day of the show, I made sure to shower and use the restroom that morning, even though it took well over an hour.

Regardless, my parents and I still had plenty of time to grab lunch and walk around Times Square for a bit. We each got a New York hot dog at a stand near our hotel, which is a requirement when visiting the city. As we ate and watched a crowd of people in the street cosplaying as characters from “Frozen,” “Avengers,” and “Mario,” it was easy to appreciate just how unique this place is.

From there we stopped at a nearby bookstore, where I managed to find a collection of one-act plays that parody classic sci-fi movies and TV shows. “Wow! Mom, dad, look at this,” I exclaimed as I saw the small blue paperback. Yes, I’m still single.

Finally, the time to see “Hamilton” came. It was just my mom and me seeing it, so my dad walked around and talked with about half the people in the city. Arriving at the theater, my mom and I saw a line for people who already had tickets. Yet before we could even jump in, a staff member spotted us and escorted us right inside. We were able to get seated 15 minutes before everyone else!

(Courtesy of Kevin Schaefer)

Heh, remember what I said a few weeks ago about the perks of being in a wheelchair?

Needless to say, it was a breathtaking show. I’ve performed on stage many times in the past, but seeing something so ingenious and gripping play out on the biggest live theater platform in the world is an experience like no other. I also found the story so relatable in many ways.

While Alexander Hamilton was a ragtag orphan forced to fend for himself early on, I was born with a rare neuromuscular condition and spent the better part of my early childhood in hospitals and doctor’s offices. As such, we each learned the importance of dreaming big and not allowing our circumstances to wear us down. When the people around Hamilton ask him, “Why do you write like you’re running out of time?” I was reminded of times people have expressed astonishment at my resilience and ambitions. Seeing this show live is something that will stick with me for the rest of my life.

Over the next couple days, we continued what seemed like an endless feast of New York pizza, bagels, Italian food, breakfast food, and pretty much anything else that we could fit in our stomachs. I also got a chance to grab coffee with my friend Sophie, who I’ve known since middle school and who now lives in the city. Then, on Friday, we met my dad’s cousin and her husband for dinner — because we definitely hadn’t eaten enough that week.

It was a great trip, and also my first vacation since starting full-time here at BioNews Services. Still, I was eager to get back home and not have to fight my way through thousands of people just to get down the street! The Big Apple is a fascinating place to visit with an infinite amount of culture, but I don’t think I could ever live there. I’ll take my quiet town in North Carolina any day, and it’s time for me to get back to reality.

Now, if you’ll excuse me I have a stack of “Superman” comics to get to in order to prepare myself for the release of “Action Comics” #1000 this week.


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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