Embracing the obstacles when my SMA is one of the hotel guests
“We have to, Kevin.”
That’s the text my caregiver, Christian, sent me several months ago when he found out that “Star Wars” actor Hayden Christensen would soon be attending a pop culture convention in Washington, D.C. We immediately agreed that we had to go. Logistics of my SMA aside, we knew that this opportunity was too good to pass up. One way or another, we were going to meet Anakin Skywalker.
The first step was to arrange travel plans. I went to D.C. twice last year from my North Carolina home, and I knew the road trip aspect was easy. Christian has driven my van countless times over the past two and a half years that he’s worked with me. With my close friend Rich joining us, I booked a hotel for the three of us and ensured that it had my necessary room accommodations: a roll-in shower and enough space for my wheelchair and electric Hoyer lift.
From left, Kevin Schaefer, actor Charlie Cox, and Kevin’s friend Rich. (Courtesy of Kevin Schaefer)
With these factors in place as well as our convention passes, I prepped Christian as much as possible for what I’d need throughout the weekend. Despite our tenure together, he’d only worked as my nighttime caregiver, when his primary tasks include getting me to and from the bathroom, getting me to bed and repositioning me, and putting on my BiPAP machine.
Not only does my morning routine require additional steps, such as helping me shower, dress, and get positioned in my chair, but it’s also more challenging in an environment outside my home. There I have plenty of space, a ceiling lift that my caregivers know how to maneuver, and a hospital bed. When I travel, I use a different lift and separate bathroom seat, and I adapt to however much space the hotel room has.
Though I didn’t want to deter Christian from going through with the trip, I emphasized that it would include challenges. Yet like a loyal Jedi, he accepted the mission. Just like that, our trio headed out on a late Friday afternoon in March.
Once we got into the city that night, I held my breath as we unloaded our luggage and headed toward our room. If there were any accessibility barriers, I’d be in trouble. My parents were hours away back home, and I couldn’t just turn around. As soon as the door opened, I inspected the room.
All systems go
The space was tighter than I would’ve liked, but it was manageable. My biggest relief was that the requested roll-in shower was easy to access. I breathed a sigh of relief and knew that we were OK.
As the next morning rolled around, I got up early to give Christian and me plenty of time to get ready. Since it was his first time doing my morning care routine, I meticulously guided him through each step. This explanation can be difficult when I’m dealing with morning grogginess, but I had to put that aside. I instructed Christian where to put the bathroom seat, how to maneuver the lift to get me out of bed, and when to reposition me.
The whole process of getting me showered, dressed, and in my chair took a little more than an hour. I could see the mix of exhaustion and satisfaction on Christian’s face. We were past the biggest hurdle, and we were successful. During breakfast when I had to do my business, I whispered to him that the catheter worked. “That’s a subtle way of telling me you just peed,” he replied.
From left, Kevin Schaefer, actor Hayden Christensen, and Kevin’s caregiver Christian at the Awesome Con in Washington, D.C. (Courtesy of Kevin Schaefer)
From there we made our way to the convention center 20 minutes away. Amazingly, our Uber driver recognized me from when he picked me up from a concert last year. Meeting pleasant people like him made our adventure all the more worthwhile.
Then came the big event that afternoon. Before meeting Christensen, Rich and I got a photo with “Daredevil” star Charlie Cox. The guy fist-bumped me and took time to talk with both of us, and this celebrity interaction prepped me for meeting Christensen, one of my heroes since childhood.
When I entered the photo booth to meet Christensen, I was swept up in a sensation of disbelief and glee. I was in the presence of Anakin Skywalker. Not only was Christensen kind and sincere, but he asked to read my T-shirt and smiled. This lifelong nerd left the place happy.
SMA travel is always an experience. Other obstacles we faced on the trip included fatigue, rainy weather, and trying to conserve my wheelchair’s battery. Through navigating these challenges and working together, I was reminded of how disabled individuals and caregivers can support one another. No vacation in my world is easy, but the Force was still with us.
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.
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