on a darkling plain.

i am the child of the wasteland....a land of haunted houses and monsters i call father. dark talents run in the family, but i shatter the glass to let the moonlight in, not to destroy something fragile for the feeling of breaking beneath my fists. all i can do is scream, crawl out, and keep screaming. but i can hold the sparrow, mend its wing... i am the spring rain and the hurricane... the monsters cower now, not me, not you. *xn*

Monday, Mar. 03, 2003 - 2:48 am

after being summer-like yesterday during the day (well to me at least...) the wind is back and the air cold. the curtains billow out and back and even the furry cats are curled into tight little balls. the radiators are insane. i have to keep at least one window partially open. they make it like a tropical island in here sometimes, and i build up so much heat i can walk outside in the cold and still have enough heat built up in me to last a walk down the block and back when everyone is wrapped up (i only did this once.. and a girl actually asked me "aren't you cold?" probably thinking secretly i was on heroin or something, wandering brainlessly).

i have EB, so my love of winter is also a thing thats happened because when its freezing out and my feet become numb blocks of ice- i can walk and walk and walk...

rick and i had seen an imax film on climbing Mount Everest. i thought it would be "fun" to watch- and it ended up being intense and very sad.

i have often wondered what my life would be like if i was not born with EB. i think i would have tried to climb everest myself. i think i would have been in the peace corps, probably made a habit of climbing volcanoes, and spleunking into bottomless pits in the earth- then i would have written about it... i figure i would have been very paul theroux-esque.

the imac film on everest was tragic because sometimes the climb goes as planned- its hard but its an amazing human victory- but even the most hardened and experienced of climbers can't predict nature. while the imac film crew was doing their project another bunch of climbers also there on the mountain were coming back down from the summit when a storm came up suddenly. they had to hunker down where they were- but this is hurricane force winds and weather so minus its science fiction style cold- the kind that freezes and cracks your body. they were in radio contact with the base camp and as the film crew watched, the people on the base put a climber through to his wife, she was somewhere in her home, somewhere safe and warm, and she talked to her husband as he died on the mountain.

you can't bring these people back. their bodies stay where they fall, i suppose a fitting cemetary for the kind of person who wanted to go as far as a human without wings can go into the sky.

the reason is that when the living are that far up its all they can do to keep moving and breathing and carrying their packs. but i think, they all think the same thing- they would understand if they had to stay forever on Everest.

the next day people made for the summit when the weather had cleared and they saw where that man had finally drifted off to heaven.

i'd still go for it if i could. the problem just isn't my feet- even though i am "lucky" in my form of eb, it does effect all of my skin, i can't get around the block in spring sometimes, i could never do the physical prep work, i could never carry the pack. so i have to be "happy" with having seen an amazing film of it.

as a child i dreamed of hiking the entire appalachian trail and i have been lucky enough to have hiked on large parts of it, gone for casual walks on fragments of it- i think i almost memorized everything in an old national geo book i had as a kid about the trail.

one thing i have done is- even though in pieces- is biked the whole c&o canal. yeah i know its no big deal compared to everest, or really much of anything spectacular in nature like volcanos, but it is to me. my c&o experience started out as what we would call "death marches" forced on us by our father who seemed to like to use riding bikes as a form of torture on his blistering children (yeah we all inheirited EB from him, he also liked to make us run two miles or more worth of laps around high school tracks, in the dead of summer too, and then berate our slow moving limping bandaged bodies the next day)- but i found a way to tune him out there and realize i loved the canal for my own reasons.

i would come back when i was older sometimes and ride or walk at my own pace. i'd hike the side trails too... i guess i am thinking about these things to not feel so crappy sometimes about not doing stuff that i thought i was going to be doing when i was little. if i timewarped all the way back i'd have to break it to lilttle-me that the saying "you can be anything you want to be, you can do anything you want to do"- is not true for everybody.. then little-me would have kicked big-me in the shins and said "i hope i don't grow up stupid and ugly like you!". ahh.. kids.. i guess i have some "natural" victories, but anyway... i would have never met kenny, that means alexandra.. and i would have never met rick... if my body had allowed me to go the way of the world traveler explorer, the peace corps volunteer.... strange to think about.

i wish i could see, like just for a moment- as in the movie "Its a wonderful life" where i would be, what i would be doing- who i would be, if i had been born without EB.

Some things that might be of interest