In last week’s post, I talked about a new magazine being a fresh reminder of my disability and how it was something of a minor reset of the grief cycle. Fortunately it was pretty minor and I recovered quickly. My recovery probably had very little to do with my own sense of mental fortitude and more to do with a mind occupying family trip to Legoland Florida and Disney World. It was fall break for the kids and after a character building, 8 hour, family road trip, we arrived at the Legoland hotel/resort. Since I might have been a little over dramatic about the magazine thing and because God has a sense of humor, this is what was waiting for me in the pirate ship display outside the hotel.
That nearly life-size buccaneer fosters a sense of inclusivity and reassures visitors with all sorts of disabilities as to the accessibility of both park and hotel, but after 2 days of rolling around and transferring on and off rides, I decided that he is a multiple sclerosis icon. The wheelchair for his mobility issues is obvious, so I won’t dwell on it, but follow my head to toe review of the MS pirate and see if you agree with my assessment.
First, he has his trusty hat because a little shade goes a long way in the battle against heat. It also helps shield light sensitive eyes and when hands are too clumsy and uncooperative for any proper brushing and styling of your hair, hiding it under a hat is the next best thing.
Next, he’s opted for an eye patch to deal with double vision rather than the close one eye method. “Yarrrr, I’m not winkin’ at ye. I’m just makin’ sure ya ain’t twins”.
Keeping one eye tightly closed can pull your mouth into the classic MS snarl….or sneer, but since he’s probably got his eye open under the patch, his snarl is either due to a facial muscle spasm, or some good old MS attitude.
He’s unshaven because some days MS and a razor just don’t mix. You can have a little scruff, or you can look like you lost a fight with a wildcat, your choice. That goes for whatever body part you shave. The MS pirate might have had stubbly legs, but I didn’t check because I respect his privacy.
Moving on, he’s wearing a gait belt over his clothes. We found this to be almost indispensable for transfers in the park and when we weren’t using it to help move me on and off rides, we secured it around my legs to keep them together when fatigue and baclofen caused me to do the MS spread.
Speaking of clothes, his are scrunched up because sitting and shifting in a wheelchair for several hours does that. We can’t see it, but I bet there’s a bare patch of lower back/butt showing where he’s either shifted down and hiked up his shirt, or scooted back and moved his pants down.
One of his hands is curled by spacticity into a semi useful hook while the other, more capable one is wielding an item not intended for it, as a reacher, back scratcher, shoe horn, etc. The proper tool is elsewhere because it’s a wheelchair, not a Swiss army knife and while necessity may be the mother of invention, disability is its irresponsible uncle.
Finally, even though they’re not my thing, his knee high boots are practical slip ons so he doesn’t use a quarter of the day’s energy trying to put on real footwear. I’ll bet there’s knee high compression socks under them too. Those, unfortunately, are my thing.
Here’s my theme park ensemble.
In hindsight, it is October so I could have gotten away with dressing like a pirate. I think he might have a better sense of MS fashion than I do anyway.