One of my pet peeves is the thought that suffering is inspirational. That handicaps are something that should be laudable simply because they exist. The best person to put this in perspective has been Stella Young, who has a much more challenging life than me, as she highlights in her TED Talk.
As someone who is anything but exceptional, I’m really struggling with the comparison game that goes on in people’s minds. You know, the one that ranks all disabilities or personal situations against each other or against their own health, and discounts your reality because you’re not suffering “enough”. That argument, or the mindset that gives you a participation award for simply showing up, are crazy making for me.
Believe me, my participation with this birth defect and subsequent disease complications is anything but voluntary, so don’t give me an award simply for showing up and trying to make the best of things.
There are many folks who have things worse than me, and better than me. That’s just how life is. But, you don’t get to judge my hardships and determine that I’m “noble” or “pitiable”, or a “goldbricker” because of what you can see in front of you.
I have a choice every day about sitting and contemplating my naval and whining, or getting on with it despite any challenges.
Some days are better than others for winning that battle.
When I’m out in public and trying to do what I can to remain as healthy as I can, please don’t pull me aside to congratulate me on how I’m dealing with things. Seriously.
And you don’t see me in the petty small moments when it’s all I can do to hold on and keep a smile on my face. Or feel my internal cringe when you congratulate me, and I know how unworthy I am for simply choosing to endure with as much grace as I can muster.
I also don’t want to verbally slap you down when you’re trying to be kind.
Because I do get it, that you ARE trying to be kind and complimentary, but it’s truly a slap in the face. I’m tied to this body every hour of every day, and while I am not tied to a wheelchair, or bed-bound and helpless, that may be my reality at some point as this disease progresses, and it’s a pet fear, as well as a reality that I may not always be able to be Suzy Sunshine while I’m dealing with my own frustrations at my failing body.
I don’t like myself when I’m venting my spleen and being sarcastic. I was raised to believe that one says nothing, if one can’t say it with kindness or without accusation. (My mom was a killer about passive-aggressive behavior. “Take that look off your face – your opinion is crystal clear, and I don’t care. Suck it up” or a variation along those lines).