Some of the people that have, through the years, been charged with the task of being my care-giver, have not understood the underlying principle of how I work: my body is a complex system of weights and counterweights.
It is frustrating because I must always be in a position of balance to perform tasks (e.g., eating) independently. I have an unnofficial list of positions that I use. Eating fingerfoods requires a position I call “The Praying Mantis.” I stand my arms on the table with my hands propped against each other. It resembles a praying position. I have another position for eating more complicated foods that require a spoon or a fork. I have another for using my computer, playing video games, sleeping, using the restroom, driving my chair, riding in my van, and a host of other situations.
Now I know it’s probably picky to expect someone to have every position memorized, but I think some people I have worked with lacked an understanding of simple physics. The same people usually have trouble following short, specific commands (e.g., slide both elbows toward each other). Some parts of my body are “dead weight,” if you will. So if I’m wanting to stand my arms up in The Praying Mantis position, but my assistant doesn’t prop my arms against each other, they will fall. It takes the weight of each arm pushing against each other to hold them up.
Some of my balancing acts (e.g., eating chips with a fork) are so unusual that one of my friends has dubbed me the MacGyver of eating. I must admit, I’m proud of my enginuity. Sometimes, I wish I could spend a week in an occupational therapist’s office with someone who thinks like me. I might be able to figure out how to play the piano. I’ve written some music, but I haven’t been able to hear it played on a real piano.
To my attendants’ defense, most of them have been good. I know it must be difficult for someone with full use of their muscles to think the way I do. In that context, I suppose I have had some great attendants. But when someone can’t seem to use his or her common sense when helping me, it rubs me the wrong way.
Self-centered? Maybe. Wrong? I don’t think so.
About the author
9 Comments
Very good, Blake. I understand perfectly. My whole life is spent finding that point of balance. If you don’t mind, at some point I’ll take up the subject.
Please do. I am interested in hearing what you have to say.
Blake, if you don’t mind, I’ll be submitting a late entry to the blog carnival. My computer has been in the shop. THANKS! bIG DAY TOMORROW-REST UP!
Suzanne
sorry-day after tomorrow
Suzanne
Suzanne, that’s quite alright. I’m just glad the scare is over. I almost thought I had the wrong date!
Sorry Blake, you can breathe normal. You can get a start if you want, thia is my submission. To late for normal channels.
http://disabilityjourney.com/2008/11/12/to-do-or-not-t…s-the-questionto-do-or-not-to-do-that-is-the-question
Have fun and thanks,
Suzanne
Got it. Thanks for your contribution.
Hi Blake! I don’t think it’s too much too ask that people learn your positions…It may be a challenging part of their job but it’s an important one. Your praying mantis pose made me smile. Excellent description!
I’m really sorry to be a pain but I whipped up a late entry for the carnival tomorrow over on my Disaboom blog. It’s already posted and is a list of giving. Hope you can add it!
http://www.disaboom.com/Blogs/karaswims/archive/2008/11/12/wishful-thinking-what-would-be-on-your-list-of-giving.aspx
Hey,
It’s not only the care givers who need to understand the amazing ways we people with neuromuscular disorders work. It’s the “professionals”.
I had to spent a good 20 minutes yesterday explaining why I, a person with muscular dystrophy, have very different needs to someone with a spinal injury in an adapted kitchen. This was to the head of the specialist adapted kitchen company, and the OT. “Why do you find vertical push buttons difficult but you can manage horizontal ones? You need your oven low down, why on earth? You do WHAT with a light swith?” “I HAVE NO DELTOID” “I FINGER WALK” “I HAVE MD – LOTS OF US DO THIS!!!”
I know we are all different, and we’re not very common either. But I know three or four others with related conditions and we are all masters of advanced physics, using balance, momentum and leverage to achieve things my physio thinks just shouldn’t be possible for someone with as little muscle as me.
Well, the more I explain the more they’ll learn, I guess…