A truly inspiring story of not providing inspiration

August 15, 2011

A couple weeks ago I wrote about Stories of Inspiration, which I simply do not find inspiring.  There is an expectation that anyone with a disability of any sort is supposed to rise above any setbacks and accomplish great feats.

There are many ways to look at these stories and expectations.  I was so touched by this woman’s story of her daughter that I just had to share it.  Her daughter is lucky to have such an amazing mother.  I also love her attitude.  She admits to falling prey to these same expectations, as so many of us have.  Then she explains how her understanding evolved.  I can’t possibly explain it as eloquently as she has, so please take a moment to read her story.


Use it while you’ve got it

August 11, 2011

You know how some days are so horrible that you can’t imagine having a good day?  And then a good day comes along?  Maybe it’s a day without pain or a day without fatigue or a day without nausea or simply a day where the symptoms are a bit less horrible than they usually are.  Those days are amazing.  I love those days.

Sometimes it’s easy to miss a good day when it’s simply a day with less-bad symptoms, but it’s worth watching for.  I may never ride a bicycle again, or get to jump out of a plane, or drink alcohol, but I know that I use the good days the best that I can.  I think that if I didn’t use those days, they’d feel like a waste.  I don’t have to do anything much on the good days, just know that they exist and appreciate them and feel happy about them.  Doing that is enough.  So that on the bad days, at least I know I made the most of the good ones.  I may have other regrets in life, but wasting the good days won’t be part of them.


You know what happens when you assume…..

August 6, 2011

There’s a saying about what happens when you assume… I’ll let you Google it.  Why do people always assume that if you look healthy, then you are healthy?  Every time someone makes a comment like that, it hurts twice.  “You’re young, so this won’t be a problem for you.”  First, I have to deal with explaining why it is a problem.  Worse, it’s a reminder of what I should be able to do.  Yeah, “should” doesn’t exist.  I shouldn’t think about it.  But most of us do, right?  The “should” already haunts me.  I don’t need a stranger to bring it up.  For you folks without a CI, please don’t make any assumptions.  Just because someone isn’t in a wheelchair, it doesn’t mean they’re completely physically, mentally, or emotionally able to do everything you think they can.  I’d rather not have to print it on a t-shirt to make people aware.


Stories of "inspiration"

July 30, 2011

Does anyone ever forward you an email about someone “inspiring”?  Do they tell you a story?  Maybe clip out a magazine article?  You know what I mean.  These are the stories of someone with one leg who runs a marathon, someone terminally ill who climbs a mountain, that kind of thing.  I’ve gotten dozens of these personally, and this week I even saw someone post one of these on her Facebook wall.

I always wonder what people expect me to get from this.  I suppose they want me to remember that I can do anything I want to do.  Honestly, I think that’s bullshit.  I can do anything within reason, sure.  But absolutely anything?  No.  It’s stupid for me to think I could, and I could seriously hurt myself if I try.  Can I run a marathon?  Not a chance.  My knees hurt like hell when I try to run to catch a bus.  On a good day I can jog a block or two before they turn to jelly.  My doctor has told me not to run.  So has my physical therapist.  A marathon is just a bad idea.  As for climbing a mountain, let’s see…. there’s the fatigue to overcome.  Then there’s the knee issue – climbing one flight of stairs is tough, 4 is nearly impossible, so a mountain seems unlikely.  And then there are the breathing difficulties.  Climbing a mountain seems about as likely for me as running a marathon.

So what these story-providers are saying is that if these other people who I don’t know and will never meet and who have “worse” conditions than I have can do these amazing things, then I should be able to do whatever I want to do.  There are some parallels missing here.

Yes, their logic is off.  But then, there’s the hidden message, the message that they expect me to be able to do anything I want.  Society expects it.  We look up to people who have seemingly-impossible-to-conquer limitations, who then conquer their limitations.  We learn that this is how we should all live.  It gives the impression that those of us who don’t achieve these amazing accomplishments have somehow failed.

This is a huge burden, and it’s entirely unfair.  I will never run a marathon or climb a mountain.  You know what my great achievement is?  I work at a job, I maintain friendships, and I live independently.  No one is applauding these accomplishments (except for my mother, who is the greatest supporter I could ever want.)  I doubt anyone will want to publish my story.  Society doesn’t think this is so fantastic.  It takes all of my effort every day to do what others take for granted, and for that, I am told, at least in an implied way, that I’m not doing enough.

Well you know what?  Working, having relationships, and being independent is my goddamn mountain.  Deal with it!