No Magic Wand, Just Movement

I move back to New York City in one day after being home since January. I’ve finally completed the waiting game, and now—just like that—I’ll be in SoHo, commuting to my internship in Midtown near Grand Central Station, learning the ins and outs of healthcare PR.

It wasn’t easy being hunkered down at the house I grew up in, relying on my parents for rides everywhere and not socializing with people my age. But it turned out to be a really important time for me to learn about patience, anxiety, and being present.

The waiting game actually started at the end of high school, back when I used to say Duchenne sucks, it only gets worse over time, and I wished dating in a wheelchair could be as easy for me as it seemed to be for my peers. But I’d tell myself, It’s okay, I got into NYU—my dream school—and everything will change.

That was the beginning of a really damaging mindset, as innocent as it may have seemed. I believed college was some magical missing piece that would transform my life. And in some ways, it did help: I gained confidence in public speaking, learned to live on my own with a caretaker, and landed an internship I’d been chasing for years—thanks in part to my degree.

But here’s the truth: college isn’t a magic wand. A lot of my life stayed the same. I still felt like a kid compared to my parents. I still hadn’t found romantic love. I still had fears about building a career.

The last four months at home were tough. There were good memories, but also a lot of boredom, loneliness, and journaling. Weekly therapy sessions helped me stay grounded. And while it was often depressing, this won’t be the last time I’m in transition—so I’m learning to roll with it.

Now, I’m setting new goals: I want to do great work, make friends with my new coworkers, build a strong relationship with my caretaker, and be smart with money. But I’m careful not to turn these goals into rigid expectations—If I just do this, then that will happen. That mindset led to disappointment in the past—like when 18-year-old me thought college would be the most epic thing ever. It had its fun moments, sure, but people hype it up way more than it deserves.

So now I’m reminding myself to stay present. This internship chapter is about setting up the future—but also remembering to enjoy the now. Little moments matter: a great movie, a new dish at a restaurant, or even an embarrassing intern mistake you’ll laugh at someday.

A few days agoI was in Boston continuing a clinical trial I’ve been in for two years, and I’m managing my expectations differently in these last few months. If I went in thinking my heart and arm function will definitely improve, no question, that would be high school Charley talking—setting myself up for disappointment.

Now, I hope the trial does what they say it will. But I also understand it might not. Even so, I’ve learned so much: more about my condition, how to navigate hospitals like I live there, and the best corners of Boston (shoutout to Coolidge Corner). I can take any needle jammed into me for bloodwork. It’s all made this trial worth it.

Time doesn’t heal all wounds. But by setting realistic goals and timelines—without chasing unrealistic dream outcomes—you’re essentially putting Neosporin on the wound. You raise your chances of healing. Worry too much about the future, and you risk reinfection with something even more painful.

So take preventive measures. Put effort in. But know you can’t map everything out—some things just happen.

Now, it’s time to pack the car. Back to the city. Let’s see what’s out there—with curiosity and fewer expectations.