A couple weeks ago I was out with some friends from college for a trivia night at a local brewery. My friend Russ gave me a ride, and as we approached our destination the clouds covered the sky, culminating in a stormy display like something out of Neil Gaiman’s “American Gods.” Facebook had shut down for a few moments earlier that day, so the impending apocalypse was a definite possibility in our minds.
“Crap dude,” Russ said. “What are we going to do if it’s pouring when we get there?”
A good question indeed. Being outside in the pouring rain is difficult enough for an able-bodied person, but when you throw an electric wheelchair into the mix, it adds even more challenges. Due to the extensive wiring in my chair and my JACO robotic arm, I can only stand being in the rain for a few minutes at most. Anything more could cause severe damage to my chair’s system, even with an umbrella covering me.
I told Russ to park as close to the brewery’s handicapped entrance as possible, and once I was out of the van I’d sprint as fast as I could while he put our ramp’s van back in place and locked the doors. At this location, there’s a ramp which leads straight to a covered walkway, which then leads to the entrance. If I could just make it to the walkway, I’d only have to be in the rain for just under a minute.
Fortunately, this plan worked out well, as we were able to grab a parking spot just a few yards away from the ramp. Once we were inside the brewery, I had Russ pull a towel out of my backpack to dry me and my chair off. I always keep a towel with me for situations like these, one of the many ways I adapt to life with SMA.
This time worked out pretty well, but there have been others where the waterworks were especially heavy. Back in April, I was seeing a movie with my friend Katherine when the skies opened up just as she was helping me get out of the van. Oddly enough, we were seeing “Singin’ in the Rain” at our local indie movie theater for its 75th anniversary. We went to grab dinner beforehand, and despite our best efforts to stay under her umbrella and move quickly, by the time we were inside the restaurant we were both soaked. I had also not been to this specific restaurant before, so it took a minute to locate the ramp and then for Katherine to grab the door.
My chair and my JACO arm were both fine once Katherine wiped both off, and it was still a great night. Still, situations like these are merely a taste of the extra effort I put forth every day to go places and live my life to the fullest. Rain or shine, going out requires extensive planning.
And if Gene Kelly were still around, I’d have him write a musical about people in wheelchairs in the rain, aptly titled, “Drivin’ in the Rain.”
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.