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.
Comments
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!