I am late with a post this week, but in my defense, I was at the beach with my family all last week and am still in lazy, vacation mode. I thought I’d better post something in the way of explanation, so as not to upset my tens and tens of readers.
I had a wonderful time and though my days of sun worshipping are far behind me*, I was still able to enjoy the beach and frolic…..(yes, I frolic), thanks to adaptive equipment (like the all-terrain wheelchair in the photo) and more importantly the help of my spectacular family.
I was once loathe to ask for help. I’m still somewhat hesitant, but that’s just foolish pride rearing its head. Truth be told, I never even had to ask for help. It came without bidding from the depths of my family’s love and good graces.
I’m not sure what I ever did to deserve it and I hope I make myself just a little worthy of it.
That’s it for this week. An explanation and a weak attempt at expressing my gratitude for family making the inaccessible…..accessible.
* I never really had sun worshipping days. Although it’s grey now, my hair was once blonde and my eyes are blue. We are of Northern European descent and are a pale, non-tanning people.
Not my kitchen. Image courtesy of geappliances.com
We had a small leak under the house that managed to spray a thin stream of water upward in just the right spot to soak a section of subfloor and buckle the overlying hardwood floor in our kitchen. This led to our kitchen floor being replaced, which meant that all the cabinets and appliances had to come out of the kitchen. That would have been bad enough, but since the majority of the bottom floor in our house is hardwood, nearly everything had to be moved out, including us, when they sanded and restained/finished all the hardwood for a nice uniform repair. The silver lining is, we got to make some changes to the kitchen, including improving accessibility. Among other things, these changes involved replacing our aging appliances and for the first time in our lives, we found ourselves researching and considering handicapped friendly appliance options.
Didn’t know there were such things? Don’t be ashamed. Until a month ago, neither did I. Many countries have laws and/or guidelines in place for something to be labled accessible. In the US, it’s the Americans With Disabilities Act, or ADA and apparently there are criteria that make appliances ADA compliant. Most of the criteria are things that I hadn’t considered and found myself saying things like, “Wow, that makes sense.” and, “Hmm, I never would have thought about that.” over and over when I looked up ADA compliant appliances.
I won’t try to copy verbatim the handicapped criteria or endorse any particular brand, since I’m too new at this to really have a valid opinion, but I will provide a link to the website that I found most useful when looking for what exactly makes an appliance handicapped accessible/ADA compliant.
(Full disclosure, none of my new appliances are this particular brand, but their site does a really good job explaining the criteria .)
I use a wheelchair full time and have significant arm and hand weakness. I’ve learned two things so far that are specific to my situation that I’ll pass on to anyone in a similar one. First, use the seatbelt, etc if your chair has one. An accessible oven/range minimizes any reaching you have to do, but there is still some bending and extending involved and being secured to your chair is super helpful, especially if you have balance issues. No, I haven’t fallen into the oven or burned myself yet and I don’t intend to either.
Second, consider your angles. My wheelchair elevates, so I can rise to the height needed so I don’t have to reach overhead and risk dropping things on myself. That may not be an option for you, but consider which angle you approach the stove, refrigerator, etc. For example, my strong side is my left, so I tend to angle that side into the appliance, rather than approach it head on, or from the right. There’s a little trial and error to get this right for the individual appliance or task.
I have always liked being in the kitchen, cooking and especially baking and, in all modesty, I was pretty good at it before multiple sclerosis started taking my abilities. I know my limitations and I grudgingly accept them, I guess, but that doesn’t mean I like them, or that I’m not constantly looking for ways around them. It’s nice that there are appliance options that make it easier to get around some of these limitations.
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.
