its been almost 15 years since i met a woman in albuquerque that not only introduced me to the reality of environmental illness, she also introduced me to disability politics and the right to access. That was a life changing time for me. I was so so sick, and my psych stuff was totally unchecked. I immediately felt the benefits of reducing my exposure to the world. The benefits of staying in,of protecting myself.
i changed all my products, threw away my essential oils and incense and began de-scenting my clothing.
I bought a respirator. i remember the profound difference in my ability to detect how bad the air was in traffic or in a theater or store if i wore the mask then removed it just to see....shocking.
I wrote righteous articles about ei and access. My new found clarity. My flexible and bountiful willingness to educate everyone.
but there were other changes being made that would have ripple effects for years. they still do.
i was a painter. so at first i tried painting with the respirator and with fans on me and windows open. eventually though i just had to stop.
I was dancer. so at first i lobbied hard in my dance classes for access, put up signs everywhere asking folks to be scent free. but eventually i had to stop.
in the social arena, peoples indifference and/or hostility began to wear me down. it was so seductive to instead just be alone.
i began walking by the river...spending hours at the river w/ my dogs. i built a fort in the thick bosque so i'd have a place to relax while the dogs ran around.
solitude slowly became my solution.
I stayed in,
I protected myself. i held still.
Solitude slowly became isolation.
so, fast forward to now...its no surprise that after so many years of struggle and loss i went and lived up on a mountain all alone for as many years as i could. claiming my small victory over adversity by obtaining a place to call home and embracing my new life as farmer and weaver. I was determined to stay, to hold still.
Ultimately though it was the poverty and isolation that brought me back down here to where the humans live.
so here i am back where the humans live. theres movement all around me. its bitter sweet.
I've internalized a mountain of shame, doubt and mistrust.
and i find i'm untouchable.
even though i'm brimming with desire and ideas and hope and need, the lack of access still looms large. i'm still chronically ill and sporting a variety pack of psych impairments, the world is still a toxic stew and gone is my fledgling clarity and bountiful willingness to educate.
I'm encased now in protection, caution and bitterness.
I look at people in passing and they look at me. i laugh loud, i'm quick with opinions and a smile. but i'm never touched...or moved...or full from community.
i've made a handful of attempts to connect with people here. Its quite something, its like i'm 7 and we just moved to a new town and i have to be the awkward kid that approaches people to ask them to be my friend. Its hasn't worked so well, and i'm aware that part of it is theres no common ground, no consistency. i don't work with them, or party with them, organize with them or go to the same class, you know , i'm home bound and unemployed for christ sake .i don't really have access to that kind of natural evolution of getting to know people in the communities here since i'm not really in them.
whats tricky is how my isolation has slowly undermined my social skills. and how in some cruel twist, i now undermine myself. being alone has come to wield this incredible inertia. its a love hate thing, its my comfort zone that i've come to loathe...but its still my comfort zone. i can spin and spin and spin (and i don't mean yarn)....full of ideas....yet go nowhere with them.
and i don't know that woman from 15 years ago anymore. I don't know the me from 15 years ago either. flexible and willing.
barring some sort of monumental access revolution, isolation will always be with me. its how i recover from exposures. but i don't want bitterness and inertia to be my life. If it remains this way its like the powers that be have won. they have successfully gotten rid of me and my big smart-ass mouth and my innate ability to create beauty in the world.
no no no.
and in an optimistic breathy sorta moment i think if i'm gonna go down i wanna do it screaming and scratching like the trashy nellie fag that i am.
but i suspect those breathy moments come from watching too many movies. too many scripted dramas, crafted to move our emotions quickly.
i'm thinking real life happens quietly, in small movements. up and down mountains. down icy sidewalks and along railroad tracks. through kitchens, into bedrooms , markets and work.
words that move.
flexible and willing to be touched.