We’re not all “motivational speakers”

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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.

participation award

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.

It’s patronizing.

Aggravating.

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).

2 thoughts on “We’re not all “motivational speakers”

  1. Inspiration PORN? Interesting take, that TED talk. Thanks for sharing and I HOPE I don’t cross the line and become someone who EVER crosses that invisible line and sounds patronizing when I offer advice. My father dealt with much of what the lady speaking in that clip talked about, his whole life. He was ‘different’ and therefore people felt entitled to either treat him as if he were mentally challenged (not true) instead of physically challenged (two deadly childhood diseases at a young age rendered him physically ‘slow’ – it was something to do with his reaction and reflexes time) and it used to make me so very angry to watch people assume (ass of u & me) he was retarded versus doing all he could. I’ve been stared at myself because of how I walk (my gait is weird), and I’ve actually had people come up and tell me maybe I should sit down or ask for a wheelchair next time I’m doing >insert physical activity< because they assume things about me instead of just letting me get on with it. I suspect you'll find more and more people will slip into the 'poor little you – aren't you BRAVE' mode as your illness becomes more and more noticeable. And I know you know what you can do about it. And sometimes that involves NOT being Suzy Sunshine and telling some peckerhead that they're out of line.

    Liked by 1 person

  2. LOL – no, this post isn’t about you or anyone in particular. It’s more about how I’m adjusting to the change in circumstances to be verbal about my handicap, instead of continuing to pass for normal, and people’s reactions.

    I do find other people fascinating to observe, LOL.

    It sounds like you’ve been through a bunch of this stuff yourself, for people wanting to help or presuming that they must jump up to help you, vs. letting you go at your own pace.

    And, wow – I’m sorry to hear that about your Dad. People can be so obnoxious in their personal judgements of others, especially when it involves “appearances”.

    Like

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