Part-Time Wheelchair User

Speed Demon Our daughter is a speed demon in Eddie, her wheelchair affectionately named after her EDS.

She often gives her Dad and I mini heart attacks with her speed, trying to “drift” like she’s in a Fast and Furious movie, and popping wheelies.

On the one hand, we’re glad she can have fun doing anything, including driving Eddie around on errands. On the other hand, give us a break, kid!

Amazingly though, a lot of people don’t realize that everyone in a wheelchair doesn’t have to be in it all of the time.

I guess it makes sense that you probably wouldn’t think about it much if it didn’t impact your life directly. So it also makes sense that you might default back to the idea that people in wheelchairs can’t walk.

However, many wheelchair users can stand, or even walk, for short amounts of time or short  distances, like my zebra. Thanks to her subluxed facet joint, or Z-joint, in her spine, Eddie is a must for outings. With her brace on, she can stand or walk for ten-fifteen minutes depending. No more.He’s not her first wheelchair, though. (Sorry Eddie.)

Two years ago she lifted her leg to get into the back of a car, and her muscle was so tight thanks to imbalances from trying to keep her joints in place, that it ripped a piece of her hip bone right off. That avulsion fracture kept her in a wheelchair for about six weeks as it healed. Holding her leg off the ground with crutches just pulled at the exact area that needed to rest and heal. She “did her time” and then built her strength back up in pt when she was done.

Hopefully this will end the same way. She’s an adrenaline junkie and loves to speed skate, do tricks, and make laps around the rink on Friday and Saturday night with her friends. Needing Eddie isn’t her idea of a good time, but having her keeps her from stuck on the couch completely. Outings like stores, the zoo, and just about anything you don’t sit with support for would be impossible without ol’ Eddie, so he’s definitely friend, not foe.

Sadly, in the weeks since this started we’ve seen no improvement beyond the Flexeril taking away the muscle spasms, so this may be chronic. We’ll have to wait and see.

But whether or not Eddie is an all the time thing, or not, I wish people understood that giving a teen the side-eye because you see her stand up from her wheelchair to get into her car isn’t cool. Same goes for when she doesn’t need Eddie and the stink eye is because people can’t understand why a beautiful young girl would need to be in the handicap spot and assume we (as her parents and drivers) are cheating the system. Granted, when she’s not in Eddie, and not having an acute issue with her hips, knees, ankles or feet – we don’t use her handicap tag and park in a regular spot. When she needs it though, we use it. When she needs Eddie, she uses him. Unapologetically.

 

 

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