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.

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.
17 comments:
Love this 'evolution' of your and your niece. My youngest two step-great-grandkids - two years and seven months - find my manual wheelchair an attraction. The oldest loves trying to push me around the house, or climbing on my lap, while the baby loves chewing the wheels or standing with the chair as support.
Thanks Roland! I can picture kids chewing your wheels right now...
I love this. The cycle to loving wheels. My son became a pro with wheels, he literally is a truck driver now. She will like them since that is your bike 🚲
Love this! I suggest you learn the Little Einstein theme song, or is she past that age?
Kim and Fran, thanks! I have no clue what Lil' Einstein sings. A rapper for toddlers I'm assuming? Gotta investigate.
Sweet story! Glad you shared it....
Thanks Veronica!
Ditto! Kids don't see a handicap & then we don't either ! How refreshing! Kathy
Thanks Kathy! Yeah, kids are good at not realizing how f upped we are. Oh to be a kid again!
Hi Dave!
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
Nick, this disease is so unpredictable. You may never need a trike, and heat might never be an issue. Being close to family is almost always a bonus, though. Well, as long as you get along! Glad you found our gang despite the diagnosis.
I loved laughing with Dave and have a very similar situation here in Australia with one whose name is Elke and is also four.
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
Oh, thanks David! Maybe more Ts will come around for us progressives. We can always hope! Cheers
So why don't you take a look at TrailRider Tales and see my approach...
My husband was diagnosed with PPMS in 2011 and for the first few years rejected any walking aides or scooters. I bought a stroller for our little dog (because I knew it would help him to push it) and even though he adamantly had told me not to buy it, he tried it when it arrived and loved it. Eventually he needed more help and he bought a scooter that looked like a motorcycle which got us back on the trail after 3 years. Last year I bought him a modified Segway with a seat and he was back on the beach. Our nieces (the bravest ones) have always enjoyed a ride on his scooter with him.
Awesome, Shari! Glad he listened. :-)
Great story. Once they get over the fear, a wheelchair can become as popular as Little Tikes' Big Red Coupe. They love to push, ride & wreck.
Thanks for sharing your special memory!
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