One of the hardest parts of chronic illnesses of any is maintaining one’s self-image. It takes so very little to make us lose what little confidence remains whether it is a comment or a seemingly insignificant failure. For me, it still comes back to a seemingly simple two-step until one tries to dance the jig.
1) Own it. There is a saying in project management, take your pain early and take your pain often. It is true with chronic conditions too.
2) Whenever possible, laugh it off. Nothing is as belittling as being the subject of laughter. I like my failures and inability to seem as small (and few, when I dare to dream) as possible.
Over the weekend, my son was trying to aim a little toy disk launcher at some balloons from a friends baby shower, but he kept missing. Standing from 5 feet away and missing was making my daughter, A, laugh, which was making O ever more upset. Looking on, it became apparent he was missing to the right every time. So I took him aside and told him he needed to stop crying because while his sister should have stopped teasing him when she saw he was upset, it’s hard not to laugh some times. It was funny after all. I told him some of the stories from my humor post, and he liked the stories of why I keep a spare pair of boxers in the car.
Then I told him, he needed to own his missing. Become the super hero, “Old Dead Shot Right O, he of the purple Mohawk.” Then take steps to aim to the left and exaggerate the gesture in a grand theatrical way to “compensate.” He was having fun again because it let him be a ham in a great show for hiss sisters. The best part though was his shocked face when he actually hit the balloons.
As an adult, it is a lot harder some times to own the situations in which we find ourselves. Maybe it is because the world for adults defaults to the serious. We are responsible for so many issues. With each of our legitimate responsibilities comes a host more for which we feel responsible. For those serious times when the pressure of the real world makes my MS unsustainable along the current course, I try to remember this post from a few years ago (2005 or 2006) on an MSworld.com forum:
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Sometimes who we used to be wasn’t really “us” to begin with. Maybe it was not who we really were so much as a collection of roles we played. The hard worker, the soccer mom, the dad who was a rising star at his job, the great outfielder–all those things.
What we are now is “us” stripped of many of our roles. We define ourselves by what we do, not by what we are. When, suddenly, what we do is not possible any more, we are left with something we do not recognize because it has been covered up by all the roles we play.
Maybe the question is not, “Who am I now?” but “Who am I?” We are a go/do/purchase society–when we can’t go, do, or purchase things we want to be identified by (the Hummer, the newest iPod)–holy cow, what is left? Just us. Unadorned, unembellished us.
It is so hard to accept ourselves that way. Our culture is like those old west movie sets–a big facade on a building that is built like a box behind. If a windstorm blows the facade down, we look at what remains and think–well, that is not very interesting. Where is the sign? The architecture? Where is the fun in a boring, square structure?
In reality, what is behind the facade is all that matters anyway. Denuded of our roles, we are left with what we have always been. Who we were was often great (and often not)–who we are now is where all the good stuff came from to begin with.
We’ve lost a lot, but there it stands before us–the opportunity to remake ourselves.”-tejokid
I just hope the stuff behind my façade still brings a few smiles.
Thank you to all who have read this blog. I am still shocked to see 10k views.
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