A Spontaneous Adventure

As my 27th birthday approaches later this month, I recognize that this year will be vastly different from past celebrations. With the current global health crisis, many of us SMAers are spending a lot of time in isolation. Though I’m able to go to certain outdoor restaurants with family and see some friends in person, traveling and crowded parties are off the table.

In times as bizarre and uncertain as these, it helps me to look back on more pleasant and exciting memories. Though it seems like an eternity ago, my 26th birthday was one to remember. 

Shortly after my friend Jacob and I met actress, writer, and geek icon Felicia Day during her 2019 book tour, I was invited to Boston for a Cure SMA leadership conference. 

This trip was a bit of a spur-of-the-moment adventure. Whereas I normally plan for any travel well in advance and with meticulous detail, this one came together in a matter of weeks. In late September of that year, I received an email from Cure SMA inviting me to this conference, all hotel and travel expenses paid for. 

It was no doubt an enticing offer, but I knew I’d have to figure out the logistics quickly. After my airline fiasco that summer, I immediately ruled out flying as an option. I wanted to ask my longtime caregiver Randy to come with me, but I also didn’t want to have to ask him to drive me and handle all of my care. Thankfully, I have an older brother who loves to travel and is a UPS driver. 

Both Brian and Randy had gotten married three months prior, and thankfully their wives were kind enough to let them accompany me on a little bro vacation. Just like that, we were off in mid-October. 

From left to right: Brian, me, and Randy. (Courtesy of Kevin Schaefer)

Since it was a 14-hour drive from North Carolina to Boston, we split the trip into two days, stopping overnight in Scranton, Pennsylvania. As a longtime fan of “The Office,” I was pretty excited to stay in the town of Dunder Mifflin. Plus, I love long road trips. Contrary to the claustrophobic atmosphere and painfully uncomfortable seats I experienced on planes earlier that summer, road trips offer me much more freedom. Give me a clear view, fresh air, music, books, and plenty of snacks, and I’m as happy as can be. 

Randy and Brian laughed when I struck up a lengthy conversation with a man sitting next to us at breakfast the next morning, but both are well aware of how extroverted I am. From there, we headed to Boston. My only dilemma was that I was starting to experience digestive issues, which I’ve written about previously. I didn’t sleep much that night in Scranton, but I bought some Pepto-Bismol the next day and refused to let my pesky stomach get in the way of this trip. 

View from the Boston hotel. (Courtesy of Kevin Schaefer)

We arrived in Boston later that afternoon and stayed at a hotel that towered over most of the city. At this point, I felt like quite the fancy-schmancy adult, having been summoned to a big meeting and getting all the perks. My crew and I could have used the next few hours to do some exploring, but being three dudes, we headed straight to the hotel sports bar after checking in.

While I spent most of the following day at the conference, during which Brian and Randy probably got into all kinds of trouble downtown, I also made the most of my time in this city. That Friday evening, I met with Juvenile Arthritis News columnist Elizabeth Medeiros and her boyfriend for dinner. Through our virtual company, we had become friends on Skype and social media several months earlier. Once I knew I was going to Boston, I set up a time for us to meet in person. And rather than find a local restaurant that we couldn’t eat at anywhere else, we dined and had a great time at a nearby Cheesecake Factory. 

Two Bionews columnists. (Courtesy of Kevin Schaefer)

Thinking back to when I got that email invite in September 2019, I know I could have easily said no. Traveling with SMA can often be chaotic, and it didn’t help that I had little time to plan. I could have easily played it safe and done something at home for my birthday. 

Yet sometimes life demands spontaneous decisions. Saying yes to this opportunity led to a great trip with my brothers, time with my SMA family, and the chance to meet one of my co-workers in person. In this case, a little spontaneity paved the way for an unforgettable adventure.

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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.