surgery for the endo is now rescheduled from dec 17th to jan 5th...so now i have one more period left...again. all because this one came early. so another trip to the er...another lecture...accusations that there is no endo, no surgery...even no period. and of course the apartment people have to be bothering us again and i just want to know...WHAT ELSE???? of course it wouldn't be fair to tell me...advance warning would give me time to plan...

25 years. and for what?

from last week's er ("the book of abby") and from the old testament ("the book of job"):why is light given to those in misery, and life to the bitter of soul, to those who long for death that does not come, who search for it more than for hidden treasure, who are filled with gladness and rejoice when they reach the grave? for sighing comes to me instead of food; my groans pour out like water. what i feared has come upon me; what i dreaded has happened to me. i have no peace, no quietness; i have no rest, but only turmoil.i'm not sure where to go from here.

have you journeyed to the springs of the sea or walked in the recesses of the deep? have the gates of death been shown to you? what is the way to the abode of light? and where does darkness reside? have you comprehended the vast expanses of the earth? tell me, if you know all this.

yeah...so i don't know what the fuck is going on. but i can tell you that i'm already sick of it.

so every single muscle in my body hurts after three days on the new job that i had to take because i have to pay off medical expenses and pay for my fall university fees. meanwhile i still have work to finish from the last job and it makes me psycho to think about and how i wish it would just disappear. ugh...but it's amazing how that job is like riding a bike and that is both cool and completely terrifying all at the same time.

brilliant.i first saw requiem for a dream before seattle, back in the days of paul the chainsmoking alcoholic med student who admitted that emma thompson's character in "wit" had moved him to tears so much that it caused him to downward spiral into a depression coma for days.

when i got to seattle -- my detox from all the crap with paul and a few other cast of characters (or has it been the past few years that have actually been the detox from the detox?) -- i remember tom and i having a discussion about how everyone owns the movie but the real question is -- can you ever watch it again? but these days we have shows about drugs every damn night it seems on A&E's intervention that requiem is no longer that big a deal. drugs. lives going down the drain. same old.

the sirens are going off...it's officially tornado season for champaign-urbana. i must say...i don't feel freaked out like i did when I first got here. apparently we're going to get 60mph hail and a whole hell of a lot thunder and lightning in, oh, minutes from now...

not sure if you've been watching the tudors but you know me when i get in one of these moods where i try to find the just in an injust world...and i watch things like "wit" where all we can do is focus on the commas to keep from crying about the lonely life of academics.

i have two months of back work i need to do this summer, along with everything else in the world going on. or is it that the world is going on and i am nothing? i can't easily answer that question.

i can't wait to be finished with this whole degree. but i'm tired and it's getting harder to keep going on like this. so i must move on, i must move toward other things but how do i do that when i lost the will so long ago?

i remember lucia and i once making contingency plans in case we weren't really cut out for this business. she, of course, made it to the end, got married, got a great job at a great university...i don't begrudge her any of that -- she earned it all and earned it via a tough, tough road.

but i'm still here. and it's grim.

ok blogger outage is over. and the 20th was my 7th anniversary of this blog.

i was recently asked, via facebook, to identify the rest of the "terrible ten" that made up the founding of a chapter of a professional music fraternity i and -- go figure -- 9 other people helped found. i was kind of surprised that no one had that written down any place. but, while, sure there was a little disappointment that the history of the chapter has been lost over time. but at the exact same time i was also happy about it. then...worried about it.

we started the group in response to two other music greek orgs -- the two being music "service" organizations. anyway, how it broke down was this: the two service organizations were brother-sister organizations that pretty much did everything together. they were also heavily tied to the marching band at the school. but if you were a music major and you wanted to have a social life, you joined one of them. to join one of them? basically meant that you were going to tank your GPA that semester, expect to be woken up at any time of night (GREAT for roommate relationships), play the matchstick game (more on this later), fetch beers, be the designated driver whenever asked -- even if you were asleep and had no idea where they were at and more than likely you were going to end up with puke on your car -- get yelled constantly, going through more memorization than i have had to do for any class (but i'm not yet certain if it was more or less than what it took to stay in my high school band), oh yeah -- and wear this really large name badge that your pledge pin stuck through EVERYWHERE. by everywhere, i mean everywhere. along with that came the pledge books that were to remain on our person...EVERYWHERE. the funny thing? is while it took such a crazy mental and physical toll on me -- my high school marching band did way more harm.

i know, i know. whaaa. that all sounds soooo inhumane -- will someone call amnesty international? but there's a lot more to this than just what i've mentioned. that's just scratching the surface.

anyway...a few of us did some research about a professional music co-ed fraternity where everything about it was about fostering a community of musicians, helping the underfunded school of the arts usher events, judge local music competitions at high schools near by. so we decided to find out about the starting a chapter -- and back in those days, we had to do it by snail mail (yes i am that old). we founded it to counter the two other organizations and give musicians a chance to be a part of something that did NOT require that you know ever friggin' fact about every pledge class since the dawn of time. we even put that in our chapter's constitution.

anyway, i know things have changed and that there are now tags and books that pledges have to carry...but what had me when she asked me about who we were, i thought that the better question to ask was "why were we?" because i was scared that our names were about to be memorized by a new set of pledges. i'm not dead yet but i'm rolling in the grave we call life...create something with the best of intentions only to learn 20 years later it's just like the other two groups.

you know...a lot of stuff has happened lately that's made me wonder about the role that hazing has played in my life. the odd part of it is that any and all hazing i've been a part of happened within MUSIC departments.

a lot of people like to auto-blame the social greek system at universities. not that it's completely without merit and there aren't tons of examples that lend truth to rumors. my experience in a social greek organization in undergraduate was pretty far removed from anything i'd call hazing.

yes, i am a sorority girl and if you've followed this blog for years without really knowing me or knowing me at a point of my life where it just never came up, you may be very confused as to who i am exactly.

anyway...that's another story. but what's been bothering me lately has been hazing in marching band and marching band "greek" societies. there's a scheduled outage in a few minutes on blogger so i'll continue this later. but for now, let me just say that i'm going to call it out here as i work through it all these years later. you can decide for yourselves if it's hazing or not after i explain things but take my word for it -- while it didn't kill me, it also didn't make me stronger.

i'm so stressed about this whole endo thing. i'm trying to change things, i'm trying to avoid the crushing depression that enters in when i know i'm about to lose the next week and a half or two...just like every month. so far i haven't had to go to the ER but we'll see what the middle of the night or tomorrow will bring. i mean it's hard not to just curl up and cry...like i haven't already done that twice already today. i can't think, i can't do anything but watch stupid shit on tv and knit. yay. knitting. because, yes, my brain is on drugs -- the ones that keep my from losing my mind from the pain.

much like the beginning...here i am, up late at night, with stacks of books from the library, human subjects forms, and thinking about pulling out my hair (although i think i've done a pretty good job so far without thinking about it...don't think...do). less than 10 days until the 7 year anniversary of this blog...crazy, huh? 7 year itch?

if there's a purgatory, i'm pretty sure i've been in it for the long haul and it's time to move on. i've been not writing the book chapter that i need to write all week and now it's friday and, fuck, where did the week go?

chris is in colorado until sunday and i'm running around trying to plan a conference day for early may and i'm almost tempted to drive most of the apartment to our storage unit because i think if i don't...i'll never exit purgatory, this place between heaven and hell. and i'm not sure i've eaten an actual meal all week, yet i have been eating food-like substances.

man...i need a vacation...

yeeech...come on AP...your latest campaign contains some THE ugliest stuff i've seen in a LOOOOONG time. seriously...the green leopard thing? what's THAT about?

i found this letter on facebook in an endo group called (go figure) i hate endometriosis. on there was a letter written by an anonymous source that feels like my mind has just downloaded onto the computer screen. normally i don't go for these kinds of mailings or posts but this one resonated with me 100% and i was glad to read it. march is endometriosis awareness month -- get educated!Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking one last time for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not lazy, we are not a whiners, we do not make the pain up in our heads.

We have Endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our everyday appearances. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our mental state.

When we call in sick, it's not because we need a mental health day or to go shopping. It's because we can't get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are flaky females. It is because we are taking experimental drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no known cause or cure.

When we can't have relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.

When you as our parents can't understand that since you are healthy, we should be but aren't - try harder. We don't understand it either. We need your support more than anyone's.

When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our blood onto our daughters?

When you married us, you didn't know that we meant the "in sickness and in health" part literally, did
you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is normal for a woman to hurt. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't "hang out" and get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with. We have to face a society which doesn't even know the word endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, "it's all in your head", and "have a hysterectomy, it will cure you", and "get pregnant, it will also cure you", when we know that it won't and have been dealing with infertility for the last however many years. We in our 20's and 30's do not wish to give up our organs just yet. That would be like giving in to the endo. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones, we can contribute meaningfully to our work environments. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.

Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...we are asking you to take part in that battle and work with us on doing so. Wouldn't it be nice to have back the daughter, wife, friend or family member you once knew?

Think about it.seriously...i hope none of you ever have to know what this feels like...well...actually it would be nice is some more doctors knew what this felt like...

some major shit is going down but i don't get to know what it is until late tomorrow. a frantic call, asking if it was possible that i could come to the house tomorrow because i'm the only one who will know what to do...

...once you leave a job where you were surrounded by 100s of undergrads every day of the week...it's hard to figure out what makes you feel relevant. there's something about the immediacy of issues that can be nipped in the bud quickly if you take the time to see that you were once them...there's something about that that makes you keep going, makes you feel like you ARE contributing to society in some way shape or form.

sure, i do other things that contribute to society -- but the game accessibility stuff doesn't have that same face-to-face tension since we exist in the virtual. things like this are different and this is the first time in a long time that i've been asked to step up to the role of "adult" for students who have found themselves in a bad place...i hope that i'll know how to best guide them...

i'm in one of those kind of blue modes right now and the memories keep flooding in during the dream and wake spaces both and i don't know how to sort them out...or where to sort them out...and i wonder...i still dream of organon.
i wake up cryin'.
you're making rain,
and you're just in reach,
when you and sleep escape me.memories of my father...i know there have to be good ones in there, right? why can't i remember the good moments?you're like my yo-yo
that glowed in the dark.
what made it special
made it dangerous,
so i bury it
and forget.sometimes all you can do is remain in a coma...but that's not enough, it's not in step with the world that forever changes...and you begin to realize how much has happened while you were away...but every time it rains,
you're here in my head,
like the sun coming out--
ooh, i just know that something good is gonna happen.
and i don't know when,
but just saying it could even make it happen.didn't i know even back then that this would be the way things would go, where they would end up? it seems that i should have...on top of the world,
looking over the edge,
you could see them coming.
you looked too small
in their big, black car,
to be a threat to the men in power.but there was never a chance to change things, to break the cycle of crazy because in the end you couldn't defect either...i hid my yo-yo
in the garden.
i can't hide you
from the government.
oh, god, daddy--
i won't forget.there had been, after all, moments where we almost made it out...now long past...but there were moments...

2:15...knock on the office door. "michelle hinn? we need to secure your computer because something you are doing has compromised the network." yeah one uiuc cop and two sys admins with their laptops rush in, asking me questions about my relationship with EFNet, then they see...yes, i am running a mac irc client. ROFL. christ. they came bursting in like they were nabbing a cyberterrorist and all i was doing was chat. classic. hell, i didn't realize it was even running at the time cause i'd only been there for about ten minutes. i guess jail might be a good place to finish this dissertation.

ugh.

meanwhile i have to stay strong and not cave into the family drama...and lord is there a lot of family drama right now.

there are three letters missing on my vita and i don't even need to buy a vowel to know exactly what they are.

time to go collect my winnings.

this just in! new banned word: wayfinding

uh...why are we so lost? do we need to be found? do we need to fit into a model or framework before we are found? are we all just walking around waiting for someone to put us in a category so we can accept it and move on or rally against it until a new model or framework comes along that makes us feel like we are finally understood because we have a label that feels like home to us, because we have the second part of the note pinned to the inside of our jackets: if lost, please _____ .

296.33

really? does that explain everything or anything at all? wayfinding. is that even a real word? if i remember my dante correctly...at some point, in the middle of our lives, we realized we had lost our way on the path. what path? oh yeah...the one that we are trying to describe with our frameworks and models. now i remember.

levels of heaven and hell and the in between. hell is other robots.

banned words of the day: framework and model

why? because if i have to read one more fucking article that suggests a framework or model for "understanding" whatever it is we are supposed to be informed about, i might implode. seriously. why, why, why must we be bombarded by endless babble about how to group things together and when grouped what we should call them. enough!

the next conference call for papers i get in my email is going to get a proposal from me called "frameworks and models: challenges and realities" that is essentially going to be about nothing at all. the challenge: must we have so many fucking frameworks and models versus actual content? the reality: we don't need to have endless droning on and on and on and on because all that it is is academic head-in-the-sand behavior all about avoiding working on actual solutions. that's right...it's avoidance behavior...overintellectualizing things to the point that whatever it is we are trying to put into a framework or modeling gets lost.

maybe i'm wrong. who the fuck knows. maybe i need a framework for understanding models or vice versa. fuck...maybe i need a framework for understanding myself. hahaha. how many minutes of droning could i get in on that topic (again) before dr. b tells me that i'm avoiding the question?

the thing is...what was the question again?

so i skipped about a month and a half on this thing. sometimes life is just too much to put online...to those of you that think i put everything on here? not even close. but anyway it's now 2008. a new year. a new start. maybe i'll finally figure out who i am and who i want to be. last year was dramatic. today's ok.

i'm doing one of my favorite dissertation tasks (a.k.a. need to procrastinate? read another book!)...the lit review. i wish i had a copy of my quals still...i probably do somewhere but, you know, maybe i should just forget it existed. kind of like my advisor at the time did when he asked me the next week to write up a lit review of what i'd just written a lit review about as part of my quals. did you understand that? don't worry...it's not really that important.no one knows what its like
to be the bad (wo)man
to be the sad (wo)man
behind blue eyes

no one knows what its like
to be hated
to be fated
to telling only lies

but my dreams
they arent as empty
as my conscience seems to be

i have hours, only lonely
my love is vengeance
thats never free

no one knows what its like
to feel these feelings
like i do
and i blame you

no one bites back as hard
on their anger
none of my pain and woe
can show through

but my dreams
they arent as empty
as my conscience seems to be

i have hours, only lonely
my love is vengeance
thats never free

when my fist clenches, crack it open
before I use it and lose my cool
when i smile, tell me some bad news
before I laugh and act like a fool

if i swallow anything evil
put your finger down my throat
if i shiver, please give me a blanket
keep me warm, let me wear your coat

no one knows what its like
to be the bad (wo)man
to be the sad (wo)man
behind blue eyes
with apologies to the who for my letter additions...