Tuesday, August 26, 2008

"i write in red ink that turns blue when the book closes"- saul williams



so this is how it started for me.  this path to learning an advocating for the disease that has been my teacher, my thorn, my rock, and my resentment.  this is how we were introduced.  it was a hot summer day in june, 1984. picture this:  

i was on  a field trip at the brookfield zoo, outside of chicago.  even if i had words to say, they would have lit fire to my throat in the delivery.  there was an unmoving film drying on my tongue.  the sun rays into my skin.  i was shedding. my shoulders peeled, intimidated from the heat.  my body weighed more than i could carry. tom compensate, i slid along the pathway mistaking blurs of heat waves for smoke.  thirst took captive of my five year old body, a dolphin flipped- contorted its body backwards, and splashed cool water aside my face. the May sky and  and clear water shared the same color of blue; one above me, the other below.  one was punishing me, the other relieving me, both antagonizing my dizziness. 

 i felt faint.  i was too young for this.  it was too big, and i was too small. i couldn't get it off of me.   my breathing deepened.  but i kept walking, following my teacher, mrs. messach, and my classmates from the same cage back to the same cage, around a pathway to the same cage, throughout the zoo.  maze like patterns seemingly without end.  this irony would become my life story.  i was tired. i needed to rest.  what saliva  i could make, i savored.  to feed off the bodily juices that would surface every now and again, i sucked my tongue.  my body, 40 pounds or so of flesh and muscle, bone and tired, molded over the emptiness of my thoughts because i was too young to articulate the crime within my body , the loudness of my baby steps.  i was captive within myself.  

"ms. messach, i don't feel good."  it was hot.  she bought me a pepsi. it was about a half liter.  the letter P-E-P-S-I written down the side.  the cup was sweating too.   i drank it within 6 nauseating gulps.  that year we learned how to count, so i remember the exact number of swallows it took to drink.  the pepsi capitalized on my grave condition.  the longer we stayed the shorter my breaths became. the sugar started the process that would later, threaten my life. by the time i made it home, i fell into a deep sleep.  i woke up and have never slept soundly since.  

later that night, doctors whispered to my mother and father.  they told my parents what the blood tests revealed. what the numbers meant.  my mother had inclinations.  she was an ex ray technician, familiar with the language, fluent in "doctor."  they learned the roller coaster that would become our lives would continually turn. good thing daddy had taught me to tie my shoes.  i would need them to run.   

i entered a turning point while my kindergarden class and i were on that fateful field trip trip to the brookfield zoo. my pancreas tired itself and i developed juvenile onset- insulin dependent diabetes. oh and the dolphin i saw earlier that day, well it may not have been a dolphin at all.  delirium os a symptom of extremely high blood glucose levels.   every time i pass a zoo, i get tremendously thirsty and privately sad. 

i missed my kindergarden graduation.  i was in pediatric intensive care unit of michael reese hospital.  presents were sent to my room.  flowers and visitors adorned me.  as i gained consciousness, i did not gain perspective.  i was five years old. five. so, i just lay there.  staring at the women dressed in nurses' uniforms- white, starched.  they were all so nice to me.  they would open the window shades in the morning.  they told me i was a pretty little girl. one told me that i was brave.  i thought that she was the prettiest.   even at that age, never having been hospitalized before, i knew the doctors from the nurses. the doctors didnt smile at me.  they didnt even look at me.  i bored them i think .  they just held on to a clip board, pressed my belly, looked into my eyes with a light pen, and held cold metal to my chest without apologizing or rubbing their hands together to warm them.  then they would write something down on their paper clip and leave. methodical. cold like the metal instruments forced onto my boney chest.  they told my parents secrets in the hallway.  it was as if i werent there.   i was as neutral as the clock on the wall, the remote to the TV, the chair near the window.  

in all this confusion i experienced,   i never cried when they injected me. i didnt mention the field trip.   i just sat there and listened to the click clack of expensive loafers and high heeled shoes pacing the hallways.  never asked ma what was wrong with me.  i didnt know that there was anything wrong.  to pass time, i counted the the brown and speckled beige tiles that lined the walls and the bigger ones that lined the floors.  i peered out into the hall from my bed.  i watched the IV drip into the crevice of my veins.  when they asked me how i was feeling i said "fine" and closed my eyes.  i colored in a coloring book, and waited.  really, i didnt know how i felt.  i didnt know what was happening.  i didnt know where i was or why mommy looked so tired, as if she had been crying.  my kindergarden class meanwhile, marched on without me.  but i was the one that graduated.  

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