Wheelchairs are not (that) Scary
For a couple years, my wheelchair was terrifying. Not to me, mind you, I’ve always been, like, whatevs. I’ve got MS and I deal with it. But to my niece Lindsey, who is approaching four, my wheels were a cross between Alien, Pennywise (the clown from It), and that horror movie doll Chucky. A trifecta of terror that could only be made worse with Nickelback songs playing on a perpetual loop. And then Lindsey had an epiphany, as much as a three-and-a-half-year-old can have epiphanies.
For her entire walking life, Lindsey demonstrated her running prowess and her hide-behind-mom’s-legs-and-moan skills whenever I appeared rolling anywhere near her. My arrival would cause that little girl to scatter like a freshly unearthed roach, which at first allowed for some peace and quiet. I was the Roomba, she was the dog—we had a mutual understanding to stay the hell away from each other. At least a generous arm’s length. And then inexplicably she dipped a toe in.
We met up with her family in Chicago this past spring and at first she eyed me warily, suspiciously. But when Lindsey got tired at the Shedd Aquarium, she deduced that riding on Uncle Davey’s lap might—might—be okay as long as Mom was nearby. Nearby as in holding her hand, ready to rescue her from this Mad Max fellow in a yellow wheelchair. A few times the fish distracted her so much (“THOSE ARE NOT PIRANHAS BECAUSE YOU CAN’T SEE THEIR TEETH!”) that she even dropped Mom’s hand for a minute or two. But it wasn’t until July that the thaw started to happen, when I was a thousand miles away…
She started laughing. With me. Not over the phone or on FaceTime, but on YouTube. My video “Laughing with Multiple Sclerosis” started trending in Wisconsin because she was watching it over and over. And over. With Mom vetting other videos for cursing (she knows her brother), Lindsey got to see her uncle in a totally different light, and she loved it.
So when Kathryn arrived for my 50th birthday party a month later with Lindsey in eager tow, I was unexpectedly Mr. Popular. Our roles were suddenly, shockingly, reversed. I couldn’t escape her clutches as she latched onto me like refrigerator magnets on a mission. I also discovered it is beyond challenging to enjoy a beer when you have a squirmy child with all four limbs suctioned onto you all octopus like.
The highlight? On her last day we played bus at our local children’s museum using oversized foam blocks. Lindsey tasked herself as the bus driver (notice the seatbelt, safety first!) and I was, natch, the bus. We could not have had more fun, so much so that she was crestfallen when it was time to go home. I even got smothered with hugs and kisses, completely unthinkable just weeks earlier.
I can’t wait until we get to roll again together. Maybe next time I’ll play Thomas the Train! Or Lightning McQueen! I won’t miss too much the relative peacefulness and quiet of playing the bogeyman, no. But if I’m smart I’ll enjoy a quick beer before she spots me.
I (age 45) was recently diagnosed with MS, and found your blog humorous and inspirational. I'm also a biker, and figure I'll one day have a recumbent like yours. Question: how badly are you affected by heat? After the diagnosis I'm considering moving closer to my family, but they're in a warmer area. Thanks. Nick
SEAT makes perfect sense and is so much what I do except for the T because at my stage (EDSS 8.5) there is no meaningful DMT
Thanks for sharing your special memory!