the great decay

i get in these moods sometimes... where all the clutter around/ inside me makes me want to totally freak out. i can look at the massive piles of paperwork, art supplies, journal articles, pieces of fabric, yarn, mixed tapes, clothing, books, etc. and just want to take them out on the lawn and burn them. i hold myself back from doing that. from burning my life clean. instead, i pick an area and begin weeding through. tossing things out, keeping other things that i know certain people will want, recycling, filing. inevitably, by the time i am halfway through a pile, i get tired. moreover, i get frustrated. i lose sight of how/why i am organizing things the way that i am. my criteria for what stays and what goes becomes muddled and i start to panic.

it all sounds very dramatic... and it is. i can’t even begin to tell you how much paperwork i have accumulated in the last 3 years - from human resources, e.i., past employers, doctors, specialists, social services, physiotherapists, lawyers, counselling classes, volunteer positions, visa bills, phone bills, tax forms. i have to keep many of them. but i am never sure which ones. with all the bureaucracy that my life is filled with - i am in constant fear that i will throw out the one document that i need to prove my case, to get what i need, to finalize things and move on. it’s getting more and more irrational by the day.

when people who know me in my personal life catch a glimpse of me in my professional life, i think they are taken aback. my brother especially, who has always been highly organized - and prone to minimalism, would likely have freaked out if he had seen my office when i worked for the opera. in my professional life, it is no stretch to describe me as “highly organized, efficient, attentive to detail”. i guess when there is no emotional involvement, i find it very simple to make use of space, to pair things down, to maintain order and fluidity.

people definitely make judgments as to “what kind of person you are” according to the level of dis/organization of your things, your house, your space. and i guess that i should accept that. my piles of stuff result in people thinking that i am a chaotic person, that i am out of control, that i do not respect what i have. i don’t think that most of those judgments are accurate character assessments - but i live with them anyway.

what i know right now - which has no connection to how others might see me - is that my life is too cluttered, both inside and out. and i will likely need some help. i will likely need people to help me keep perspective on what is important, and what is just plain crap.

what a mess.

pictures of houses

i wrote this today, thinking about a friend of mine. i don't know what else to say.

ALSO THIS

not simply above,
behind,
or beside.

but
inside.

inside.

those permissions that we cannot find a way
to grant to ourselves.
the permissions that we would grant to others
in a heartbeat.

ordained or not
i am empowered to grant
(with all my love)
you permission to feel...
everything.

i would never sign a letter to you,
“nothing but happiness”
for you i want more.

even this.
all of this.

you are a man
who lays the melody
whose presence is a present.

and now i know,
that when i am entangled in those rhythms,
when you turn to face me,
that i also am given:
your grief,
your reverence,
your longing,
your unique and untouchable love - for him.

he is:
not simply above,
behind,
or beside.

but
inside.

inside.

how nothing feels

i remember everything
except who you were

we walked for hours
stopping briefly
for me to climb
concrete and maple

and you asked me how it was possible that i could still care
and i did

i wanted to show you my body
the tricks that i had learned
i wanted it all back
i wanted to take it all back
and i did
both

our reflections in the basement bathroom mirror
full wall
above and behind
you wrapped around me
my flesh protected momentarily by the spines
that you had developed over the years

of walking
for hours
without me

dying in new brunswick

for those of you that have been holding your breath and/or crossing your fingers... i got my call back from the organization that i interview with last week. and i did NOT get the job. this is the third position that i have interview for where my ‘letdown’ call back has sounded like “our decision came down to you and one other candidate. it was really a toss up. and the position has been filled by someone else. we will keep you in mind for any positions that come up in the future. we really enjoyed meeting you and were thoroughly impressed by your resume and your personality.”

um yeah... thanks. i still have no job. whoop-dee-doo!

just tell me that i suck and that i never had a fighting chance. i have never liked being 2nd best.

after a short discussion with a few friends last night, i have decided that i am going to continue to disclose the fact that i have MS to my prospective employers. there is no doubt that it has kept several organizations from hiring me (human rights, shuman rights!) - and is serving to prolong my hunt for meaningful part time employment in the nonprofit/ social service sector. but i guess what it comes down to is that i would not want to work with people that i have to hide my MS from. i don’t want to do it. and i would rather stay on disability for another 6 months than accept a job where i have to fuck myself up by covering the tracks of illness.

i will rant more on the nonprofit sector and disability at a later time. right now, i eat lunch.

anyone, anyone

it’s time. upon encouragement from why-vonne (even after she heard the confused stylings of the jazz-funk fusion band that i was in when i was 17) i think that it is time for me to play some rock and roll.

fusion. never again.

straight up rock and roll. throw in some emo, metal, electronica, or hardcore/ punk for good measure and we are good to go. band practice once a week (how do sunday’s work for you?) any takers? chold? anyone?

pen will hit paper this week. and i have some old stuff that i wrote that can be reworked.

i have never been a good singer... but i am an enthusiastic singer - and that will have to do.

most importantly, let’s brainstorm some names for the band. most of the names that i have been thinking of lately have been math-rock names. and yes chold, most of these are ‘the’ names. you will have to forgive me - i was brainstorming new names for the hoodwinks. enjoy!

the buyers
the find
the seconds
the f(r)action
the binary
the ha(l)ves
the fruition
the finite
the breakwater
the principles
the extraneous roots
the future-present
the furnace
the fore
the entanglement
the remainder
and my personal favorite (inspired by napoleon dynamite)... liger tigon

wow... some of these are super shitty. i guess that’s what brainstorming is all about though.

yeah. rock and roll. apply within.

as serious as your life

before i was diagnosed with MS i was more than hyper. i went to university full time while working full time and still found the hours in a day to volunteer, date people, see my family and friends, and do aerobics/ mountain bike/ go to the gym and do yoga. i had a full schedule and managed to find time out for myself... staying balanced. i was not the type of person who was busy because i was running away from things/ from myself. happy. fulfilled.

as many of you know, the last few years have been pretty slow for me. i have completed my undergrad (i only had 3 courses left when i started to get the symptoms of this neurodegenerative disease) - and completed all of my course work for an additional degree. i have worked some part time jobs under the table (often going for 6 months or more without working a single day) and have volunteered as a peer counsellor and a committee member for the MS society. and that’s it. i can go weeks without meeting a single obligation (aside from various dr. appointments). the biggest commitment in my life right now is getting the laundry done and trying to make it out to d&d once a week.

a friend of mine who i don’t know as well as i would like - but who also has MS and has been diagnosed for over 10 years - recently helped me quiet some of the pains/ troubles that i have been having with my life. i hope that she does not mind me paraphrasing: the first 3 years are the hardest. you feel like you will never be capable of making long term plans - of committing yourself to... anything. having her say this to me leads me to believe that things will change. that i will once again see myself as a capable person, even though my capabilities have changed and my ability to plan for the future will always have to allow for ongoing/ unexpected medical snags.

i recently went for an interview with an organization that i deeply respect. it is a permanent part time position. 20 hours a week. the work itself will be challenging in an emotional sense - but the tasks will be things that i am more than capable doing. the woman that interviewed me will be contacting me mid-next week to tell me if (out of over 200 applicants) they have chosen to hire me. my feelings are mixed. the last time that i was hired at an organization that i respected this deeply (which was at the Holocaust Education Centre - about 2 years ago) things ended badly. the pressure of having to be ‘okay’ when i woke up in the morning made me, literally, ill. i only worked there for 2 months. by the third day, i was waking up in the morning, throwing up, and crying all the way to work. my body and my heart hurt too much. i was not okay.

i wish that i could explain it to people. explain that it is not the same for me as it is for them. i remember when i use to have a ‘crappy’ day, i would grab an orange juice, buck up, and by noon everything would be all right. and now things don’t work like that. if i force myself to do *anything*, it destroys me. the pains race through my body, i become dizzy, disoriented, and nauseous. my whole body buzzes and trembles. i feel like i am drowning or dying.

and i only wish that i were exaggerating for effect. and i wish that it was psychosomatic. but here i am, just approaching the corner into year 3 of living with MS - and it is still hard to see how i will be capable of doing anything... besides laundry.

if i get the job that i interviewed for, i am worried that i will disappoint myself - that i will disappoint others. that i, and people around me, will wonder - why i can’t just buck up and show up for work 4 days a week. to be honest, it all scares the hell out of me.

people look at me and think that i am all right. a lot of the time, i am not all right - and the pressure of having to fake it is just too much for me.

if you hate your friends, you're not alone

sexy paul was right... it works, and you can see for yourself. those of you that have decent computers can wave goodbye to long distance telephone costs: http://www.skype.com/

and the best part, as far as i am concerned - is that it is both mac-friendly and the sound quality is stellar. if you want to do some long distance (or short distance) calling - you can add me to your list - girlxsetsxfire - and that’s all i have to say on that.

***

i wish that i had something else to talk about besides this - but it is on my mind and it is bound to come out. let’s talk a little about dating/ mating.

i have some circles of friends that fuck everyone else in that group. yes, they do. it’s no big deal... it’s all fine and good and people don’t take it too seriously. jealousy and hurtfulness is less a part of the equation because no one is monogamous to anyone else. while the affection is there - the score is not about ‘falling in love’... dig me? these people tend to be pretty upfront about what they are doing and who they are doing it with and how they feel about what’s going on around them.

and then there are other groups of friends. they tend to date monogamously. they aim for long term and for love and they get it on with one human at a time. the funny thing is, that these groups of friends tend to be the groups that do things that are ‘unclassy’. they date each other’s exes without owning up to the hurt that it will cause. they breech the monogamy contracts that they have willingly engaged in and try and pass it off as someone else’s lack of integrity.

i won’t bother picking sides. monogamy, polyamory, bootie call.... do whatever you want. do what works for your life. but my question is always why people seem to be so utterly incapable of just being honest and holding to their integrity.

no matter what people’s sexual lifestyles are - the sexual/ intimate realm is a vulnerable one. and if you are pissing in a gene pool with people who lack honesty and respectfulness - it is bound to bite you (and those around you) in the ass.

in the words of henry rollins “you are who you fuck”.