the skin we're in

i'll be honest... i've been burnt out on blogging for a while now. i've been doing this for ten years. TEN. YEARS. that's a really long time. especially for an aries. our attention spans last about ten seconds.

there aren't that many topics i've not covered. some of them i've covered ad nauseam. maybe this is one of them. but i'm doing it again because of stories like those i found on facebook today.

my posture is horrible for a variety of reasons: i don't eat right; i don't exercise; i sleep on my side with my shoulders curled toward my face; i swam breaststroke in high school, which overdevelops the pectoral muscles; i have cerebral palsy.

i. have. cerebral. palsy.

look that shit up. it's wicked, wicked crap.

the first time i watched the theory of everything, and eddie redmayne acted out the scenes in which his character, the physicist stephen hawking, first learns of his ailment, of its diagnosis... i wept. i wept, people, because i have some understanding of what it means to hate your body. to loathe it. to look at it with such disgust, such great disdain because it won't do what you want it to do. i have some comprehension of the helplessness and the anger. and the fear.

my legs don't work so well. i cannot run. i can't. every time i try, my knees protest.

my eyes don't work so well. crowds terrify me. people move around like gaseous molecules with no concern for each other. i see things in two dimensions, not three, and in crowds, i cannot comprehend where everything is. i'm afraid to take a step, that i might collide with someone else and fall. so i spin around like a top, trying to find some safe place out of the way, and the longer it takes to find purchase, the angrier i become that people can't just stop for one second. just stop and let me get my bearings.

falling terrifies me, too. i fell a lot in my youth, in my adolescence, in my early twenties. in my childhood, i fell because i couldn't see. in my twenties it was because the tendons and ligaments in my knees were weakening. and it hurt. something awful. it hurt to fix it, too. that pain was much worse. i can't recall it well enough to tell you anything more than the first twenty-four hours after the surgeries, i was on a morphine drip, and for weeks afterward, i had a regular prescription for vicodin. i can recall one night waking up to pain so immense that i just wanted the drugs, which were across the house in the kitchen. getting up meant wrapping my knee, putting on my leg brace, and hobbling on my crutches. it would take too long. so i slid out of bed and pulled myself into the kitchen and up to the counter. and then there's the physical therapy. they put you on a stationary bicycle; they put your feet on the pedals and tell you to move the wheels. and it feels like things inside you are shredding. and you maybe moved it an inch. maybe. it takes weeks and weeks before you can make the thing turn one full circle.

then there's the cosmetic surgeries. the ones you have to make you prettier so people won't recoil when they see you because your eyes are so ugly. the doctor works some magic on your face, stitching your eyelids shut for a twenty-four hour period while that magic heals. there's the delusions that the stitches have come undone, and you can see the basketweave texture of the patches he's placed on your face. and then... then he takes the patches off and cuts the stitches. and you look in the mirror, and you want to recoil because your face, which you hadn't much liked before the surgery, suddenly looks like it belongs to frankenstein. and the doctors don't tell you that in addition to being blind for twenty-four hours, you'll feel uglier afterward and that you won't really be able to walk, either, because they're taking muscle out of your leg and putting it in your forehead.

my face feels like a picasso painting.

then there's the spasms. the ones that are more like a constant clenching in your neck, or your calves, or your hands, or your jaw. those are preferable to the others because you can soothe them, to some extent, with a massage. the ones that feel like a fluttering inside you, those are worse. they almost always come just before you fall asleep. they startle you. they make you feel like something's crawling on you or, worse, inside you. they keep you from getting to sleep at night. they wake you up several times throughout it. and in the morning, you don't feel rested.

and lastly there's the knowledge that that fluttering sensation, that spasm could occur in other muscles... like your heart. your heart that has a murmur. one that makes the doctors, who seem to be in such a hurry to diagnose what ails you so they can get you out of their office and the next one in, this murmur makes the world for them come to a screeching halt. everything goes quiet. and you sit there, waiting for the words to come out... the urging for the ekg. just give me my prescription for my z-pack, lady, and let me go... i don't want to think about my heart and how it's breaking.

but even with all that, i've had it easy. it could've been worse. it could've been SO. MUCH. WORSE.

i am five foot seven inches tall. i weigh one hundred seventy-three pounds. i wear large shirts and size twelve pants.

the man i'm seeing wants to take me to victoria's secret and pick out some pretty. there's a part of me--that passionate aries bit, i'm sure--that wants to go. i'd be interested to know what sorts of things he'd pick out. i'd want to see my figure as he does. i'd want to see if there's anything in that store that could make me feel sexy.

he wants to go shopping. the idea excites him. it mortifies me.

sometimes i do like my body. i have to tell ya, i love my rack. i'm quite fond of my breasts. that wasn't always the case. all throughout high school i was pathetically flat-chested, which served me well for swimming but not much else. i was also horribly straight and ridiculously thin. long limbs on a short torso with a ginormous cranium (for housing all that brain power that has been both a blessing and a curse). i don't like that i've allowed myself to get this badly out of shape, but at the same time, i am soft, when for so much of my life, i was brittle and hard. while this is the fattest i've ever been, i feel much more feminine now than i ever have.

still, i haven't worn shorts in years. he thinks i should wear them all the time. i think my thighs are disgusting...

and that brings me to the first story.

the man's quite fond of my ass. and, of course, i am not.

michael buble and his wife, whilst waiting in the lobby of what appears to be a hotel, notice a rather curvaceous woman wearing shorts that are, by most's standards, too short. so buble posed for a photo, and his wife got the woman in the shot as well as her husband. and buble posted it to his instagram where some forty-three thousand people "liked" it.

i admire that the woman was so comfortable in her skin that she would dare wear those shorts, knowing that they would call such attention to herself. i wonder why instead of others being in awe of her audacity and her confidence, we choose instead to focus on the fact that her ass is hanging out. we bash the woman for dressing "inappropriately." we bash the man for having taken the photo and making the comments.

we insist on belittling others' physiques so that we can feel better about our own. and it's not just those, like me, who weigh significantly more than they should. we say the thin ones are too thin. we say the tall ones are too tall, and the short ones too short... no one is free from the criticism. no one.

we shame a person's body because it does not fit some impossible mold (hell, we'd shame it if it did fit, out of sheer jealousy) someone created eons ago and said should be the norm. i don't even know what that is... that norm. i can tell you that any effort i make to get my body to that state would be for naught, because even if i could have that thirty-six, twenty-four, thirty-six figure (i'm assuming that's the norm?), i still wouldn't be tan enough and strong enough to carry it, to show it off. i've too many freckles, my skin is too reluctant to take on color--i know this because i spent the weekends of my childhood and adolescence in the backyard in a bathing suit without wearing sunscreen. my muscles too weak to ever have that kind of tone. also there are the scars--thirty or so--from all the surgeries and all the falls.

which brings me to the second story.

to fourteen-year-old jonathan pitre, whose body attacks him with every breath it seems. i've seen stories like his before. i've heard of the condition he has, due largely in part because of the blogging world. but i don't think anyone's ever managed to bring home the extent of just how awful this particular disease can be. and good god, it's hideous.

oh, dear lord, the things i've taken for granted...

my heart... my heart... it aches for this boy. it aches for his family--for his mother. such hell this must be. i admire his strength for plugging along. for living anyway. fighting when it must seem so unbearable to do so.

the worst part of his day is the three hours it takes to bathe. he must endure this every other day. his mother must administer it. to be him... to be her...

gisele bundchen just took her last turn strutting her stuff on the catwalk in all her golden, toned, feminine splendor. the good lord made her beautiful.

pink took to twitter to defend her choice of donning a little black dress when her figure was, to some, much too shapely for it. he made her beautiful.

he also made the woman in those short shorts and that little boy, wrapped in all his bandages, beautiful, too.