I posted this a year ago to the old site, and it had disappeared. I bring it back not because I particularly want to, but because it's important I recognize that for all the things I do as a caregiver, I can never fully understand the day to day. I hate this poem.- JW
the hospital, one in a hundred they say.
they say you’ll have a normal life.
the lie slips off their tongue as the blood slips off my finger.
of course it happened to me
a fortuitous day i guess.
oh, how fun it is indeed
warring for control
pandemonium traveling through my life
but i've gotten used to it
i’ve had to.
everyone says they’re overwrought
but they stare
the dogma around it is horrible
but you’re not fat
but you’re healthy
how can you have diabetes?
it gets stuck on repeat.
so i count
trying to make a picture
paint this thing beautiful
but it just builds a pyre
waiting to combust at any second
to set me aflame
meticulously counting dots
but they become a blur
i don’t realize i'm crying
until i feel the first drop fall on my leg
they call me insensitive
for telling them about this
how i feel about my life-ruining disease
“stop making me feel bad, i was having a good day”
my last “good day” by your terms was over 5 years ago
blood drips from my finger
it’s become second nature
leaving tiny dots on all my fingers
sometimes i find blood on my sheets
from hastily done checks by my parents
sometimes they wake me up
because of one number
so i count
trying to make a picture
paint this horrible thing beautiful
it seems like i'm indiscriminate
picking a spot at random
but it’s always calculated
sometimes we forget
is it clockwise?
sometimes we make exceptions
it’s a dance weekend, so i must put it on this leg
this one won’t do
“there’s going to be a cure soon”
i've been waiting for years
they couldn’t care less
“have you tried this? i hear it cures diabetes”
that’s just stupid now
there is no cure
otherwise i wouldn’t be carrying a purse bigger than my mother’s
i still celebrate that fateful day
it’s ironic, really
gorging myself on the sweets everyone believes got me here
they tell us about emaciated people
in third world countries
but it’s hard to imagine other people’s problems
when nobody cares about your own
they’re halfway across the world
i'm halfway across the room
and yet you don’t care
you think it doesn’t matter
i wish for liberation
dreaming for a day when i didn’t have to worry
where i don’t have to deliberately bleed out
where i won’t have stares
for the hideous lump on my arm
i'm not the only one that feels this way
millions of others have to deal with it
most without care
because they don’t have proper tools
because a vial of insulin
is almost three hundred dollars
for maybe a week’s worth of insulin
maybe a week of surviving
maybe another week of miserable, miserable surviving
it’s absolutely hideous
my upper arms
covered in bulging red dots
dots that represent three days of life
dots that remind me
they don’t say it
but we all know it
we’re on life support
that’s what this is
anyone could pull the plug
at any time
and we would have a year or two
a horrible, terrible year
that crawls by
wondering when you'll drop dead
because insulin is three hundred dollars
and yet nobody will care
they ignore my cries
they see me pricking myself
“oh you’re such a brave girl”
and they go along their day
i wish they all could see
just one day in my shoes
one day of pokes
and counting carbs
and waking up at three o’clock
in the morning
because my blood sugar is fifty-six
and no desserts after dinner
and nothing but meat and eggs for lunch
because my blood sugar is three hundred twenty-four
and my sister complaining because she doesn’t get dessert either
they see me having to gulp down juice
and they don’t see what it represents
the uncontrollable sickness
at least i'm staying conscious
they don’t know i could die in the middle of the night
because my blood sugar is seventeen
and nobody can see
because the smaller of the lumps fell out in the shower
because “diabeetus” is more well known
than “type one diabetes”
“fat jokes” or “possible death”
because googling diabetes jokes shows
“bob had 50 kitkats. he ate 47. what does he have? diabetes. bob has diabetes.”
since when is it acceptable to make fun
of a life-threatening illness?
every single diabetic is literally dying laughing.
they still don’t care
almost seventy thousand people die a year
and still nobody cares
oh you look fine, stop complaining.
other people have it worse
(who’s insensitive now?)
your blood sugar is high?
doesn’t that mean you need to eat?
so i count
trying to make a picture
paint a disease beautiful
i wish it was as beautiful as everyone thinks
then i might be able to live a normal life
then i wouldn’t have to wake up in the middle of the night
then i won’t have to pretend i don’t see the stares
then i won’t have to hurt myself intentionally
we hear all these stories
a girl who died in the middle of the night
because she wasn’t awake to eat
a girl who knocked herself out
by giving twenty units of insulin
enough for almost one hundred fifty carbs
when she only ate fifteen
probably the most twisted part
is that this is my normal now.
i cannot remember being free.
in two years, i'll have had diabetes for over half my life
i hate the fact that my good days are just good blood sugar days.
i forget that others don’t have to deal with this.
you don’t have to stick needles into you for every meal?
you think i’m unfortunate
you all are elevated to kings and queens
in my needle-filled mind
my fingers have calluses.
my thighs grew scar tissue.
even they’ve gotten used to it.
even if i pretend i haven’t
it’s getting harder to lie.
the needles hardly hurt anymore.
when people learn that i'm diabetic
they always mention
“i couldn’t deal with all those shots. i hate needles.”
you don’t necessarily get a choice.
they ask how i can deal with it.
i always say
“they’re too fast to feel”
that’s another lie.
they hurt at first.
i thought of just refusing to take them
but then i realized
it was pain or death
the clicks used to scare me.
i'd plug my ears
hum a quick melody now.
finger band music.
the needles barely hurt anymore.
when i was seven, i was oblivious.
i didn’t know “chronic” meant “forever”.
i waited to get better.
for the calluses to heal.
now i have a much better concept of the word.
infinity scares me
the idea of something never ending
i’ve had to accept one form of it
the needles feel gentle at this point compared to their words.
it’s not like i grew up in a year
childhood ripped from my hands
from having to deal with
the responsibility of self-care
you make a second grader responsible for her life
and she’ll be scared enough to do it
or else i could go into a coma
i’d cry into my pillows at night. punching or throwing things
i was never able to vent enough.
there was always more
after i was shaking on the bed, i still cried.
they say i act like a high schooler
i had a sixteen year old mind
in a seven year old body
you never hear about this side
because diabetes means
fat, lazy, old
and they want to brand us
they want us to fit their views
but is ninety-nine pounds fat?
but are straight a’s lazy?
but is thirteen old?
but they don’t care.
so why should i expect you to?