11/22/00

i don't think this feeling will ever go away. trembling, twisting, thriving, shaking violently and being too dizzy to even tell. lungs that seem to have shards of glass impaled through them, the last of the air whistling out like a deflated balloon. the cramping protests my body creates, the spirling blackness fighting for control over me. like drowning above water. mouth gaping open, trying in vain to pull in gasps that never get past my bronchial pipes. like a fish flopping on pavement. it fucking hurts, and hurts worse still once i realize i don't have the oxygen to needed to cry.

endless nights, like this one. afraid to lay down, afraid to close my eyes, afraid if i lose to unconsciousness, i'll never wake up. wondering what they'll dress me in at my funeral. (will they remember that i don't wear church dresses?) will this be The One? the one i don't recover from?

this.fear.is.not.irrational.

i'm reminded of being four years old. the living room which stayed a converted at-home hospital for years and years. the ever present smell of vapor rubs and humidifiers. my mother's worried eyes. the soft german prayers she would whisper as she sobbed, stroking my forehead and thinking i was asleep. i couldn't speak german, but i knew she was saying the same thing i was thinking: please, please don't let me die.

the late night hospital visits that were held off till the last minute. four years old and worrying about finances and our lack of insurance and next month's bills. listening to my parents desperate arguments: "we can't afford to take her to the hospital." "she'll die." "she can't afford to live." me, always apologizing.

i'm sorry that my dying is an inconvenience to you. i beg your pardon.

a childhood wasted on hospital rooms, coughing thick mucus until i vomited, an entire wardrobe consisting of a tie-in-back hospital gown, the nurses rushing in all hours of the night as my machines went crazy, filling me up with blue, yellow, orange fluids running through iv's like kool aid through curly straws.

my brother was allowed to visit me occassionally while i was hospitalized; not too often, because my extremely weakened immune system couldn't handle the viruses he carried home from school. he would bring coloring books and my favorite stuffed animals and donald duck comics to read to me. he would sneak toys out of the playroom and bring them back to my elevated bed, swipe orange juice for my always raw throat. during one particularly long visit when i was fourish, he came in with tears in his eyes. he said he had heard the doctors outside my door talking as he waited to come in. they hadn't known he was there. he said they had said i was going to die. we cried together, brushing away our tears before our parents came in to say it was time for him to go. (we always tried to protect them.) once they were out the door, i picked out a big, brave, fat, red crayon and wrote my will there, in the back of a battered rainbow brite coloring book. mom can have all my drawings. dad can have all my ribbons and awards. my best friends can have my my little pony collection. my brother can have all my stuffed animals. except for the ones i've puked on; he probably won't want those.

when i was a little girl, i theorized that when someone died, a chunk of the universe disappeared and a gap would appear in that person's place. and that's where the stars came from: a hole ripped from the sky each time someone lost the battle. i used to spend a lot of time wondering what my star was going to be like. would it be lusty and yellow or maybe a faint blue? would my family be able to see it out their bedroom windows as they fell asleep at night? would they wink up at me? would they make wishes on me?

it's terrifying. it's painful. it's humiliating. it won't go away.

there's a saying, "it's as natural as breathing..." i can barely keep from laughing. do people really take air for granted? is this possible? i can't imagine. there is nothing natural about breathing. it's a struggle; a challenge that i won't be able to live up to one of these days. and when that day comes, i can only hope that my loved ones remember to play "treasure" at the ceremony.