i hate when people say things like this.
and the reason actually has nothing to do with the fact that im an atheist at all--as most would
assume. but honestly, when people tell me they are praying for me, etc
that does not bother me at all, quite the opposite. to me, i take that
as "you're in my heart" and who could have a problem with that? someone
taking time out of their day to think about you? that's huge. that
touches me, regardless of my beliefs or anyone elses, it means someone
cares.
but sayings like this, and other platitudes like "oh,
itll get better." "its always darkest before the dawn." "youll get
through it." sound encouraging but are much more insidious if you really
sit and think about it. because what they translate into when other
people say them to you is "you're fine, stop complaining." it translates
to "i really dont want to hear about all this, so here's a bumper
sticker to make you feel better." it avoids the actual conversations we
need to have with the people in our lives. its a way for people to feel
like they "helped" by being "inspirational" without actually having to
help us in the way we need---by having someone *listen* and *care* and
*be involved*.
these little phrases that get tossed around so
often and so easily "you are so strong/brave/inspirational!" they are
designed to allow people to distance themselves from the topic. they
dont even have to think of their own words to do it, they can just pick a
few photos of beaches with handwriting fonts on them to share and call
it a day.
its a lot like "awareness", we all know how much
people love to raise awareness for things we're already aware of. it's
an exercise in self-congratulation--you get to feel like you did
something without actually doing something. (see this brief article for
more on that process: http://stuffwhitepeoplelike.com/2008/01/23/18-awareness/ )
people need to really realize how hurtful sayings like
this are despite the fact that these sayings are totally meaningless and
do nothing to help anyone. and in many cases, the only thing it does
accomplish is making the person struggling feel like they are failing
because they aren't strong enough or brave enough. they're not trusting
god enough. they're not doing enough.
we are constantly faced
with people--friends, family, doctors, strangers on the
internet--telling us how not enough we are. and it adds up. and it
doesnt have to be said in those words. sometimes words aren't necessary.
every time someone loses a central line to sepsis, every time a tube
gets screwed up. every time a surgery doesnt go quite as planned or a
new med doesnt work. every time i reach the breaking point and shut my
feeding pump off. failure. my stomach fails at being a stomach. my
muscles fail at being muscles. my intestines fail at being intestines.
my body fails at being a body. and i fail at slapping a smile on my face
and pretending that everythings OK so people dont get "sad".
a few days ago, my own flesh and blood half-sister took a large piece out of me, and decided it was her job to tell me how my FB posts are
"overwhelmingly negative" and even suggested some "coping techniques" i
could use to get out of that "negative thought pattern" including
singing a favorite song in my head.
well by golly gee
willakers. you mean if i just start singing sara bareilles songs in my
head, i wont be sick anymore?? IF ONLY I HAD KNOWN. the fact that she
even interprets the posts that i make, which, if they are related to my
health at all (and you guys on my f-list know thats far from the only
thing i post about), aren't NEGATIVE, they're simply HONEST. and while
apparently she doesn't give a sh*t about me, there are people that do.
FB is my main method of communication with pretty much everyone in my
life except my girlfriend and my grandmother. i put out UPDATES on my
condition because i assume if someone is on my friends list, they give a
damn. (i am sometimes very wrong about that.)
anyway, these coffee mug platitudes drive me
absolutely batty. its just a way to SOUND like you care without having
to make the effort to actually care. it costs them nothing. and it often
costs us a lot. because its not like most of us don't already have serious
body dysmophia type issues or self esteem issues, its not like every
time one of us fails a feeding trial or gets an infection or has to
think about adding a new piece of hardware to our cyborg bodies we feel
like we're failing at the most basic human level: we cannot even feed
ourselves. after breathing, eating is the most important bodily function
humans need. and as i have sat here over the last two years watching
friends go from eating orally to tube feeds to TPN. as i have sat here
watching friends struggle with one of those other basic human actions of
expelling waste and become dependent on pills and supplements to go at
all, and even further watching them end up with ostomies. as i have sat here and watched all of this, i have also watched people that claimed to be their friends turning away from them, dismissing their pain, and making them feel small and unworthy.
when
you are trapped inside a body that cannot feed itself, that cannot expel waste on its own, that cannot breathe properly on its own, it is
really hard not to feel like a failure. because biologically, we are. (i
actually said this to a friend recently---that ive accepted
that i am just a lemon. im a cosmic mistake, everything is breaking down
and i lost the receipt so i can't go trade this body in for one that
knows how to be a body.)
i wish people would more often sit
down and think about what they're saying and what it REALLY means. and
what it could mean to someone who is struggling, to blow off their
problems with a simple "theres a light at the end of the tunnel". sure
theres a light at the end of the tunnel, but for a lot of us that light
is the headlight of the train that is bearing down on us too fast to
stop. and the platitudes do nothing to help that.
we're tied to
the train tracks with this train bearing down on us, and the people
brushing us off with empty platitudes are basically standing next to us
as we're tied down, bending over, and whispering "there's a train
coming, just so you know. you should probably get out of the way." and
then leaving without bothering to untie us. 
they did their job, right?
they let us know about the train.
the rest is on us to deal with.
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Monday, November 18, 2013
"God Won't Give You More Than You Can Handle!"
Labels:
awareness,
chronic illness,
disability,
gastroparesis,
health,
POTS
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