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:
“ 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.”
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.
Thank you to all who have read this blog. I am still shocked to see 10k views.

4 comments:
Thanks for yet another lesson in this life of mine. Nicole
Nicole, you are way too kind.
This post was just hard because as I thought about it during the week, I see myself having so many of the frustrations I see my kids having. It seems so easy when I talk about what frustrates my kids. It just seems exponentially harder to take those lessons to heart dealing with things I can't do or consistently do wrong.
Realizing I should apply the same logic to myself is just one more thing in the column of things my kids have given back to me. I'd almost swear most of my life's learning could be wrapped up in things learned from sports and parenting...and I don't know if that is a positive.
I do accept as true with all the concepts you've introduced on your post. They are very convincing and can definitely work. Nonetheless, the posts are too brief for novices. May you please lengthen them a little from next time? Thank you for the post.
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Funny or sarcasm, this response made me laugh. I'm usually considered way too wordy. Thanks for the post.
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