I’m often asked by people how traveling works when you have SMA. The simple answer is that flying is a pain, and it’s much easier to do road trips. Over the years my family and I have gone on road trips to Florida, New York City, Missouri, Oklahoma, Colorado, Texas, and many other places in the country. I could write a book about all the various fiascos that have occurred during family vacations, but the biggest risk I took was last summer on the first trip without my parents.
Granted, I did go to MDA camp once when I was a kid, but it’s hard to call that a risk when there are dozens of certified caregivers serving as camp counselors and tons of other kids in wheelchairs. I’m talking about a full weekend three hours away from home with just a group of my friends and my caregiver.
For years, I had been dying to go to a comic convention in Charlotte, North Carolina, called HeroesCon. My friends with whom I do podcasts go every year, and I wasn’t going to pass on it this time. My dad went with me to an out-of-town convention before, but I was determined to go with just my friends this time. Plus, it’s become much more difficult for my parents to transfer me on vacations when we don’t have all of our equipment and resources from home. So, I talked with my caregiver Randy, who’s also one of my best friends, and we hatched a plan for him to accompany me on the trip.
Fortunately, my parents were both cool with this plan, as long as I was willing to pay for everything, including a room for Randy and his girlfriend Danielle. I saved up money from my monthly SSI checks, as well as anything I earned from the school newspaper, and had enough for the entire weekend. I could not have been more stoked.
The weekend finally came and I was ready with my traveling equipment and all of my comics, which I was eager to have signed by some of my favorite creators. My friend Lucas, who I’ve known since childhood, drove me in my family’s minivan, and we were following my podcast friends Rich and Jordan. Randy and Danielle would meet us at the hotel later that night. We grabbed lunch at Wendy’s, turned on the radio, and allowed the sweet taste of freedom and adventure to brush past us. The trip to Charlotte was smooth sailing.
Now, the first fiasco that usually unfolds on our family vacations is when the hotel gets our accommodations wrong. There is a big distinction between a room that’s handicap accessible and one that has a roll-in shower. It’s vital that I have both. Yet no matter how many times we say this when we make reservations, time and time again we’ve been given a room without the proper accommodations. As my friends and I approached the hotel’s front desk to check in, a sense of dread washed over me as I worried about them getting it wrong, too. If that happened, I’d have to deal with it without mom and dad’s help, while also keeping my friends waiting and being late to the con.
The greatest thing happened: The hotel got my accommodations right. The room was fully accessible, had a great roll-in shower, and most importantly, there was plenty of space for my friends and me to store all the comics we bought that weekend! Once Randy and Danielle made it there safely, all of my concerns were brushed aside. Normally there’s a “but then” component to my vacation stories (just read my last two columns), but not this time.
This was one of the best trips I’ve ever taken. I hung out with friends, ate tons of food, met dozens of comic creators who were willing to let me interrogate them about how they got their careers started, snagged a DVD copy of the original Star Wars trilogy (not the maligned George Lucas special editions) and, of course, bought tons of comics and graphic novels. I even made my robotic arm look like one of Doc Ock’s tentacles and posed for a picture with a Spider-Man cosplayer.
Like any aspect of life with SMA, this trip required extensive planning. In addition to making sure Randy could come, I had to make sure that Lucas was good to drive me there and back, and keep track of all my equipment. Without mom and dad there, I was responsible for making sure I was taken care of. I was 22 at the time, and yes, it took me that long to travel without my parents. Yet for every obstacle SMA creates, there’s a solution right around the corner.
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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