GLINDA: Can’t I make you understand? You’re having delusions of grandeur… -Wicked
I’ve been reading all these hopeful, inspirational blog posts recently, and just can’t get behind them. Not that my life is a disaster or anything (far from it, really!) But I can’t get behind the whole “I was a (probably) genetic mix-up for a reason”. I don’t know, maybe I’ve just studied too much disability theory for my own good or am just too damn bitter… but it doesn’t sit well with me.
It isn’t my responsibility or duty, as a human being, to make other people better people. It isn’t my responsibility or duty, living my life, to “teach” anyone anything. Hell, with the amount of mistakes I’ve made recently… please don’t use me as a guide for good life planning!
I see the temptation, though, to make sense of the nonsensical. The one in a million (or thereabouts) chance that whatever happened happened doesn’t make sense. And, for me at least, it doesn’t have to. Unlike some, I can’t wait for researchers to hopefully figure out more about the causes of Moebius syndrome. Why? Because I like to know stuff! And maybe because I approach having been born with Moebius as a purely genetic, random occurrence… rather than anything with any more deeper meaning whatsoever.
What does this all actually mean, though? (and how in the world does it relate to the title of this post?). Well, for me I think the delusions of grandeur can cloud how people interact with the world, and how they expect people to interact with them.
Personally, I feel no sort of responsibility for any kind of social greater good related to the random fact that I was born with Moebius syndrome. For a long time, this wasn’t the case. It ate at me. I thought I should be doing something more, something different, something to help people who for some unknown reason looked to me for answers.
But then I stepped back and realized what I want. And I don’t want that. I am okay living my life to the best of my ability, for me and not to serve as any kind of example. But damn do I feel guilty about that! Which is bad, I know, I need to make myself not as swayed by what I fear people will think.
I hope that didn’t come off as completely bitchy or snobby. But sometimes, preserving a little sanity in this weird, convoluted world of living with a disability isn’t pretty. At all.
You show courage, and self-assurance, to not need to see yourself as a heroine in your life story. Which of course, makes you a heroine.
Or at least sane. It is a form of sanity to see disabilty and pain as sometimes just pain or inconvenience….. not romantic, and not a springboard for nobleness or at least wisdom. Disability and pain can be meaningful and not-meaningful at the same time.