When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way.
Case in point: the majority of my family’s vacations. You could easily replace “Schaefer” with “Griswold” and use our vacation stories as inspiration for the next National Lampoon movie. To give you an idea of how extreme the sitcom scenarios my family and I have gotten stuck in, I’m not even including the time I broke my femur in Maryland during a medical conference on this list.
Before I get to my top three, I’ll throw out a few honorable mentions.
Chicago, 2001: The elevator to the subway station broke down, forcing Dad to carry me through the middle of the city to get to Wrigley Field for a Cubs game.
Fourth-grade beach field trip, 2004: This was supposed to be a great trip packed with friends, an epic boat ride, and other adventures. Yet because the organizers neglected to inquire about any of the accommodations that Mom had requested, it turned into a disaster. Dad and Grandaddy had to transfer me all day, the manual chair they put me in was terribly uncomfortable, and Mom acquired several new enemies.
HeroesCon, 2017: My friends were driving, and as we were getting back to our hotel, we skidded the side of our van against a cement pillar on the parking deck. Fortunately, there was no severe damage to the vehicle, but it did leave a nasty scratch on the side door.
Now for the glorious top three Schaefer vacation stories.
Washington, D.C., 2003: We were in D.C. for the annual Cure SMA Conference (though at that time the organization was called Families of SMA). I don’t remember much from that trip, but I do remember Dad carrying me up the steps to the Lincoln Memorial. Like our little adventure in Chicago, the elevator at this national landmark also was broken. Between the sheer number of steps we had to scale and the enormity of Abe’s statue, the experience felt just like when Sam carried Frodo while climbing to the top of Mount Doom to destroy the ring. If only we could have had an epic Howard Shore soundtrack playing in the background.
Edgewood, New Mexico, 2009: OK, so we weren’t actually vacationing in Edgewood, New Mexico, but we did break down in this town on an out-west trip to celebrate my brother’s high school graduation. This was a two-week road trip in which we saw the Grand Canyon, the border states, a bunch of museums, and even more steakhouses. We were actually on the way to one of these steakhouses when our rental van broke down, and for the next few hours, we became acquainted with the culture and people in this town (the population was about five).
If the middle of nowhere was an actual location on a map, Edgewood would be somewhere in the middle of that. We spent several hours at a repair station on July Fourth weekend, and the only thing on TV there was Sarah Palin giving her resignation speech as the governor of Alaska, over and over again. And if the universe wasn’t already laughing at us enough, we were all starving; but the fact that the vending machine there had frozen sandwiches that were likely expired was a red flag for us all.
Disney World, 2003: Now for the crowned jewel, which also begins with a van breaking down. My parents had surprised us with a Disney trip over Thanksgiving break, and about 30 minutes away from our hotel we broke down in the midst of 5 p.m. traffic. Did I mention that I broke my leg several months earlier and was in the late stages of recovery? The upside to this is that I was in my manual wheelchair, which made it slightly easier for my parents to transfer me out of the van and into another car.
That little stumbling block wasn’t the end of this particular episode, however. Several nights later, we were on the way to dinner at Disney’s Polynesian Village Resort. As Dad drove me in my manual chair, he accidentally took one wrong turn and rammed my foot into a pole. I saw it coming too, but it happened too fast for me to react. Fortunately, I came away without any additional broken bones, but I did remain sore throughout the meal. Then, to cap off the evening, my aunt choked at one point while we were eating. She also came out fine, but I think this was just the universe’s way of putting the icing on the cake of our miscellaneous adventures in the happiest place on Earth.
If I’ve learned anything during my travels as someone with SMA, it’s to have fun and laugh when crazy circumstances unfold. No matter how prepared you are, chaos comes when you least to expect it, and it’s best to just (literally) roll with the punches.
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.