hellooo

hello? is anybody out there?

oh, you're still reading this? wow. i love you guys!

sorry i have been gone for so long. don't worry, i am okay. actually, i'm pretty good!

i will turn this blog to private in a few weeks. yes, it's exceeded its usefulness, plus i really like tumblr. also, virtually all my creative-slash-publishing energy these last few years went into grad school and work. ennui and neglect builds a miasma of decay over a blog so bad it can't be rescued. it's like a house that has that killer mold. better just tear it down. or, what's that word? entropy.

please move your links to owlycorps.tumblr.com. careful, it's more personal and could be even more boring than this blog. no cool links or anything, yet. if you want occasional cool pictures i am up at owly.tumblr.com. see ya!

It has to be the saddest thing to see your mom cry over your break-up.


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I am laying in bed as I write this. My joints are inflamed and my leg, hip, and lower back muscles are in incredible pain.

I started to think again, as I do everyday, about the situation I am in and when or if I will (or should) move back to New York.

Since about 6 months ago I began to hate every day of my life. I hate living each day without being able to do what I wish without physical discomfort or pain. I hate being away from my friends and loved ones. I hate postponing my dreams without knowing whether or not I would ever be able to resume them. I hate this because I never chose this. I cry every day. I recall a time when it wasn't like this, so I grieve the loss of a time when I didn't to suffer like this. I grieve what it was like to be unburdened by having to daily meticulously plan paths, meals, rest, treatments, preventions. I grieve what it was like to not worry that deviating from this plan won't cause another flare and lead to living with even greater suffering and even greater loss. This is not what people my age are meant to be doing. I feel old. I feel left behind.

Perhaps I have not adapted to this kind of life. Maybe if I adapted I would no longer cry. Perhaps I would no longer complain. But, I don't think so. Everybody suffers, but suffering is in degrees. In this period of my life, and perhaps for years or decades, my physical suffering is and will be greater than that of most of my peers.

Some say to overcome difficult mental and physical states is a matter of mental and inner strength. I would agree. But I doubt anyone is ever truly prepared for or is able to transcend chronic pain and fatigue and the isolation it brings. I might learn to live with it graciously, but not a single day would I ever have wished for this challenge and what it has done to my life. I would not wish this life on my worst enemy.

With this weight, I feel my earlier love of life has slowly dissolved. I feel, as they say, a mere shell of who I was, empty of dreams and empty of aspirations.

Can I learn to love my life? Can I learn to find greater pleasure in small things? When it seems the big things are beyond my grasp?

I am not without hope. Whatever is happening in me now will bear fruit in some dimension. My values hold it true. That I am alive is the truth. Sight, taste, touch, sound, movement ... thought, memory, word.

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The anguish from starting something, losing energy to continue, then forgetting what it is I was doing in the first place ... My brain and body betray me ...

How does one learn to accept one's failing body when one has been taught success is through willpower over the body? This illness trumps willpower. I need to cede.

Letting go and accepting ... the harder you try, the less it happens.


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Inner resources dangerously low. Necessities:

- to be relieved of all responsibilities in order to heal

- to retreat

- to hibernate in solitude and quiet

Thank you for your patience and kindness, dear friends.


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Lame

People who use fashion as a method of ethnic tourism through American-centric definitions of Otherness, and the illusion of innocence, naivete and preciousness of noble savagery in craft, etc.

People who actually believe in A simpler time, a simpler place -- ie via American heritage collections, "ethnic" dabbling (as described above) which white washes / enforces social conditions and power structures that perpetuate oppression and exploitation.

People who buy into the idea of "charitable fashion," a quite slimy marketing strategy of generating profits.

These are just a few of the really gross things I find in fashion, amongst some of the obvious (crass materialism and culture of consumption, perpetuating self-loathing via idealized body images, perpetuation of the white ideal, perpetuation of gender norms, environmental waste, etc etc).

How to build a collection of works that move beyond and oppose these systems whilst being able to survive and thrive?




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keeping it real

Just when I was about to feel bad about all the bitchin and moanin on this blog, (in case anyone reads it besides myself and maybe my mom -- sorry, mom), I caught word from the twitters of a great entry from This Ain't Livin' blog entitled "Why Disability Matters: Supercrips and Accomodations" (excerpt):

There are a lot of complex issues bound up in the identity of the supercrip, and one of the hazards of it is that, whether you are willing to be used this way or not, you will be used as a weapon to beat other people with disabilities. Some supercrips definitely feed into this, as is evident from the way they talk about disability. They frame it very much as a personal problem that can be overcome with enough effort and they make a point of stressing that they owe their success to not being ‘coddled’ by petty things like accommodations. They suggest that other people with disabilities are not toeing the line, and it’s ok, you can ignore them, really. Tough love.

Other supercrips, though, are just natural outliers who happen to be disabled. Not every nondisabled person can be a star athlete, and we don’t take Olympians as evidence that everyone should be able to complete incredible feats of athleticism. But incredibly accomplished disabled people? They are taken as evidence that other disabled people are failures. If they weren’t, they could be running businesses and sailing around the world and competing in athletic events and doing other fantastic and amazing things ...

The supercrip is used as evidence that people don’t need accommodations, they just need to try harder. That, in fact, denying accommodations is perversely for the good of the person with the disability—you see, if you weren’t coddled along, you’d be able to have some self determination and do something that matters in the world.

And, from the article in Bitch Magazine referenced in this entry ...

Supercrip is the Good Cripple taken to dizzying, perhaps nauseating heights, and chances are, if you’ve had any exposure to media depictions of disability at all, you have been exposed to this trope. Supercrip has been, in his and her various iterations, sunny, kind, overachieving, possesses a “can-do” attitude, and does AMAZING! and INSPIRING! things and can thus "overcome” his or her disability. Supercrip’s personality traits overlap quite a bit with those of the Good Cripple, but above all, Supercrip’s main function is to serve as inspiring to the majority while reinforcing the things that make this majority feel awesome about itself. In short: Supercrip provides a way for non-disabled folks to be “inspired” by persons with disabilities without actually questioning—or making changes to—how persons with disabilities are treated in society ...

Disability activist and writer Lorenzo W. Milam expands upon the Supercrip stereotype in a passage from CripZen: A Manual For Survival: “Less obvious, but more hurtful, is what we call the Roosevelt Syndrome—scaling great heights, smiling…becoming SuperCrip, convincing everyone that there is nothing going on inside, nothing at all.” Nevermind whatever anger, rage, sadness, or less-than-positive thoughts you may have; if you are a person with a disability, you are expected to be just a canvas onto which non-disabled people can project their need for “inspiration.”

Excellent, excellent must reads for anyone feeling that they or their disabled friend/relative/etc are just not trying hard enough to get better or to "stay positive" ...

Just keeping it real.

The trouble with this disease that I have is that no one really sees it. I'm not in a hospital bed (usually). I get around fairly normally, and don't use any visible accessories like a cane, chair, eye patch, tubes. I don't have a crazy cough or things on my skin. I have hair enough on my head. The major thing for me is ... I am tired ... all ... the ... time. I can muster perhaps 3-6 max low to medium energy level hours of work per day. The rest, I'm out, lying down, exhausted, ready to sleep. Another quantitative example -- the other day, I went 17 hours without rest (half of which was just "hanging out" with friends I hadn't seen in a long time) and it took about half a week of zero energy (resting all day, no work) to recover.

The other trouble is that I'm usually so happy and upbeat when I do get to see friends. You see, I am really, really good at hiding any exhaustion. Usually, if I'm exceptionally tired I avoid people (unavoidable at work). But when I can (even though I might be low energy), I will push it up a notch and be quite happy, chatty, friendly. I will hang. Because of this, people make the assumption that everything is great or at least normal-ish and manageable all of the time. SO WRONG. (I'm absolutely sure the long lost friends I met with the other day still have absolutely NO idea how much this illness affects my life).

I think because of my tendency (a kinda life-long one at that) to push it and put on a good face, a lot of the people closest to me have never understood the truth. Because they have never seen the OTHER SIDE. The other side consisting of -- not being able to work full-time; if on a deadline (more often in nyc) and working more than usual, the passing out and the sheer exhaustion from a typical workday; the turning down hang outs and get togethers CONSTANTLY to stay in bed; after a work week, staying in bed all weekend long just to go back to work the next week; and the overwhelming build up of stress from lack of time dedicated to recovering/relaxing from the stress of work and daily life.

And then ... the rest of the OTHER SIDE. Partly of which is: profound fear of the future. Constant worry. What is going to happen when it really gets bad again? If this is as much "remission" as I'm going to get, how will I survive? Will I be on permanent disability? Will I lose my health insurance at some point? Will I have to pay for my $1000+ meds per month out of pocket, plus health insurance payments on disability? Will I ever have the energy or support to have my own family? Is my career on permanent hold or totally dissolving? Will I be financially solvent? What if my "back-up" runs out and there is no more back-up?

The only things I can do seem to be the following: Focus on the present. Treat my body not just well, but as if it were my precious child (when it's tired -- SLEEP, feed her only good stuff, be slow and patient, pace herself, etc). Be exceptionally frugal. Save as much as I possibly can. Get involved only with stuff that gives me joy, and DON'T get involved with stuff that gives me stress no matter how obligated I feel. (Perhaps that means detaching from people and situations that are harmful). Enjoy myself in what ways I can ... and then ... figure out what I'm going to do next to feed, shelter, and clothe myself ...

Anyway, it seems like no matter what is or what will be, because I have so little energy to expend, I spend much more time to carefully calculate every major endeavor before I begin it ...

dear diary, i broke down tonight, thinking of everything i lost. i lost my energy. i lost closeness to my dearest friends. i lost the shape of my future. i lost my dreams. i am a non-contributing member of society; practically worthless, a waste - for all that effort put into raising me, in what would be my peak years, i am useless. i will never work full time again. i have no energy to support others, no energy to support myself. i might never have my own family. i lost a future. all my goals are gone, all my dreams are dead.

my family is alive. my friends are alive. i am young. there are drugs. i have my limbs, voice, sight. there is art. there is nature. there is loneliness, solitude. nothing more. dying. is-ing, breathing.

This morning is one of those strange, placid mornings you know mean something is coming.

The world does not wait for the weak.

This illness has ruined my life.

I do not live a day without feeling pain.

Why would I want to continue living if it will be like this for the rest of my life.

I do not want to be here, I do not want to be here, I do not want to be here, I do not want to be here, I do not want to be here, I do not want to be here, I do not want to be here, I do not want to be here.

There is no cure, there is only management. F-ck you, too.

Anger is not a healthy emotion. It hurts other people to see you sad. Get yourself fixed.

F-ck you, especially.

I know how you feel. Do you have a chronic illness, physical or mental, that impedes your goals, potential, and dreams day after day? But you have a great imagination and can imagine what it's like? Then, I'm sorry, I don't think so. It's one of those I appreciate your concern, but get the f-ck out of my face kind of mornings.

This is a letter that has been anonymously floating around the internet for years.

I have moderate to severe endometriosis, and well here it goes…

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

this chick knows what's up! i also love her voice ... it is like the opposite of werner herzog. ha!

machu picchu

i had a horrible day with cellcept. i stop taking it (i get my kicks from non-compliance) for months off and on. though i have been on 500 mg for almost a good year now, i am not going to get off until the end of the year. (which will mark three years since my last big flare and three years on treatment this time around).

today was exhausting. i seriously got knocked out by this med, and whenever stuff like that happens (health stuff i didn't predict would be so bad and then is that bad), i get super depressed. and all in all feel very lonely and small. i googled "so tired from cellcept" to see who else out there was feeling like this and came up with a lot of links i'd actually been to before, including a forum of transplant patients scared of losing their organs on generic cellcept, people losing hair, people warning each other to get their kidney and liver enzymes checked, fearing brain diseases that the drug makes you more likely to get. after about ten minutes of this i had to shut down that little iphone screen and turn my head away. i forget when you go looking for company / the companionship of shared exeriences on the internet, you often don't know what you will find. beware, it can be frightening.

now, being nice to myself and taking things in perspective and reading my blogs in the quiet of this empty house i am a-ok. added one thing i'd like to do before i die: visit machu picchu. (i got that from the erie basin tumblr). who wants to go?

i love the deformities ...

(from)

(from)

"it's the only way i can be aggresive"

horizon, yes; overstimulated, no.

from unchanging window

Dear body,

I love you, but why do you still produce so many autoantibodies? I tried to run half an hour with you today, but a few hours later you started breaking down. I saw protein in your urine. I felt your excruciating pain, especially in your legs and knees, but most of all a deep profound fatigue, an ache. I knew you were crying. So I tried to get you to rest, but you would not lay down. You were so anxious and agitated. You were so scared this pain and failure to exert yourself will be a permanent fixture.

But I promise it won't. Well, honestly I can't promise anything, but pain is not all there is in life. You gotta remember. I'll keep you distracted. Maybe you want a bite of this? Maybe you'd like some more sips of water? Don't worry, I'll take good care of you.

No, this thing you got ... it makes you needy, but it's not your fault. There's no cure, but there's nothing we can't go through together. And who knows - science might pull through in the end! And to really take it to the final conclusion - there's no cure for death. And that's something we aren't afraid of.

I'll always be here for you. I promise. If you need anything, just let me know. No, actually, I'll watch over you like a hen to a slightly runty, semi-disabled chick. You don't even have to say anything ... I'll know. Well, I'll try my darnedest. Now, you have to get some rest. I love you.

Jean


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retrouver ce média sur www.ina.fr

A NEW TASK 8/?

6/20/2010
day in the life of

Day in the life ... design phase

8:30 am Alarm rings. Snooze.
8:45 am Snooze.
9:00 am Snooze.
9:15 am Fuck My Life, this Fucking Sucks. Contemplate quitting job.

9:45 am
Amble through piles of clothes, trying to put together a decent outfit that somewhat fits the aesthetic of my company (and not be too "edgy"). Don't know why I do this, I am such a fucking square at this point. Wash up and maybe put on some mascara. No makeup otherwise. Pack my work suitcase, which is a black tote bag. Think about best shoes, put them on, then rush.

9:50 am
Grab muffin from Cranberry's. Pumpkin or banana, whichever they happen to have that morning. Catch the A at High Street.

10: 05 am
Roll into work (studio) huffing and puffing (it is a 6 story walk up). Give breathy "hi's" to whomever might be there and throw my bag down on top of plastic bins of vintage shoes. Throw jacket over rolly chair, could be eames, not really sure. Resume whatever I was doing last on iMac (the same big one i have at home ... wow it's like never leaving, i stare at this giant screen so much could i be getting some kind of radiation?). Interns roll in; give interns jobs to do. Work and steadily be interrupted by random convo between all the other employees and boss, phone calls and emails from vendors (print sources, fabric peeps), production suppliers, etc. Random spreadsheets for production. Give boss designs / sketches / discuss concepts and tasks to accomplish at random throughout the day. Pull shoes, pull old collection items, pull images from the web, from books, from magazines. Draw like my life depended on it. Pages and pages of drawings. If i am lucky, i don't have to go to Midtown because it means i won't be back until the end of the day, and will still have more to do at studio.

2:30 pm
Get some random ass salad again from Whole Foods or Amish Market. Walk right back and eat it at the desk while working.

Review random jobs from interns, wonder how much i am exploiting unpaid labor under the aegis of my boss and the entire industry, and keep telling myself "well, if they didn't want it, they wouldn't be here. if they didn't want it, they wouldn't be here." Try to remember when this whole thing was such a fascinating experience and believe it is the same feeling for them. Heh heh. Get a look from my boss telling me to work them harder. 


6/21/2010
i'm really loving this alone time!! i finally get my computer all to myself (no bf hogging it for autocad or some photo editing shit)!! also:

1 i can listen to mariah carey all night really fucking loud!

2 i can leave my makeup all over the bathroom and know exactly where everything is the next day because it hasn't been touched!

3 no stinky boy smell anywhere!

7/12/2010
though crazy muggy, it was all in all a great day.

one thing that really breaks my heart thinking of possibly leaving this job (if it is too hard on my body) is my co-workers, who are all great friends. i don't think i've ever worked anywhere where i can say "i work with a bunch of the sweetest women in the world." of course everyone works like a mofo, but it's also really easy to chill besides. i deem myself quite lucky in that regard.

one of the things i really need to figure out how to make happen (is something probably very simple for a lot of people) is to save up enough energy to go out more. i've really been missing too many trips and hang outs. it's kind of frustrating to think that i'm flaky as pie, but that's the problem with not being able to tell how much energy you'll have by the end of a work week. it's painfully hard to make "plans for thursday," without getting worried that that will be the day i pushed too hard and burned out and really need more sleep, away from having to summon the energy to have lively and engaged conversation or overstimulation. if you haven't thought about it, a lively hang out session is very energy intensive, even if you aren't really doing anything.

11/15/2010
Self-intervention: I have to come face to face with how I am really really bad at responding to calls and emails. Guess my excuse before was I really was loaded with work, and then just exhausted after work, so it was hard to squeeze them in there. (I also have this weird thing where if I am feeling bad physically I find it unbearably difficult to write or socialize -- partly that socializing is exhausting, partly mental fog, and partly I don't want to have to talk about it). But now I have all this so-called free time, what the hell is going on? Now, these last few weeks, I actually haven't had that much free time. With moving, getting settled again (still not settled), working pretty much almost full-time again (almost accidentally), adjusting to a new and weird workplace with new and weird people, at the same time feeling pulled between too much work here and getting assignments from rc, and THEN feeling the residual exhaustion from the ny move ... well, I need to cut myself some slack. So, it still takes me days to respond to emails. So what!

A NEW TASK 7/?

more unpublished drafts from the recent past ...

5/13/2010
privacy

i am so jealous of all those great blogs out there (so fucking many now - i am thinking back to 2004 - oh how the internets have changed)! i don't have any time to cultivate this blog in that way. maybe i could post some items now and then, but since starting work, i feel like anything i pick up relates to work, which becomes information held in confidence. i can't share that work because it doesn't belong only to me anymore. which reminds me i don't do any work for me, myself, and i anymore. not that i have a problem with that, but i guess i feel like my life becomes more and more private every day. i like it!

anyhow, the reason for this post written in this rambling manner is because of an article i read in the nyt (my sole source of information about the outside world still [besides nymag] it seems - not related to movies or fashion). it's about these like 19 year old dudes with a vision of utopia (ok maybe i am putting words into their mouths) - man versus the corporation known as facebook; privacy versus panopticon. their spirit is titillating to anyone with a bit of that rebel in them, and they've riled up more than a few geek libertarians, considering they've surpassed their seed capital goal of $10,000 twelve-fold on kickstarter. i mean, i don't know how much other projects on kickstarter have raised in the past, but it sounds pretty impressive.

i hate facebook only when you're having an extra shitty day and your news feed seems to be nothing but a filthy lot of pollyannas. also, how weird it is to get these one-way communications from people, some of whom you barely know. the usual complaints. however, i do think the crap they do with the privacy stuff is HELLA SHADY. i don't trust them at all. i wanted to "deactivate" my account (since you can't actually delete it - SHADY!!!) but then b convinced me i should stay on it purely for the critical mass

i think i am right to be paranoid about internet security. the side stating non-anonymity-accountability has some points, but still does not seem to overshadow these companies are owned by entities who might not have your best interests in mind.

5/14/2010
weighing myself

i really really really need to cut down on the salt intake.

i am actually underweight for my height (in a positive term: thin), so people tend to wonder why i watch my weight so carefully. i keep an electric scale next to my bed, and i weigh myself each morning and evening. i am far from any sort of eating disorder, as i am a ferocious eater and would never give a shit about my weight if i didn't have to. unfortunately, i have to monitor it closely because it gives me an idea of my water retention.

a dietician told me a persons weight will fluctuate 2 to 3 pounds a day from eating and drinking. when you you fluctuate 5 pounds (ie gain 5 pounds), something's kind of wrong. for me, these 5 pounds usually mean i've been eating too much salt and/or i've been overworking myself and my kidneys want to kill themselves. it's water retention. my base weight is generally 100 to 101 pounds after a nice round of diuretics. the last few days i've been hovering around 105. it seems like small fry, but it is 5% of my body weight, like gaining a i wake up feeling swollen and my ankles are visibly swollen. so -- i will take some diuretics, feel the shitty side effects for a few days (aching muscles, overall flu-ish incoherence, dehydration), and get that weight down.

if i really want to facilitate it, i'd cut out most of my salt intake (no eating out AT ALL) for a week, do sweaty aerobics every day, and take long saunas (that sounds nice). unfortunately, none of the latter happens. so i take diuretics. but at the very last moment (four times last month - a great progress!). i read if you take them for a long time, your kidneys can become dependent, which is kind of scary, but i figure it is better to not overtax my body retaining all this fluid than take a water pill once a week. i think i should ask my doctor about this ... also, HOWEVER, constant weight fluctuation is also bad ... so ... something's got to happen about this.

See why I didn't publish these? These things are horribly BORING to read! This blog is meant to light fare, so once I became incapable of composing levity, it went away.

6/6/2010
something i fear constantly is the

when someone acts uncompassionately, i find it usually means a lack of understanding and a good, clear-headed explanation gives them enough reason to open up. sometimes it takes years and years. and other times, there's no more reason to exert the effort - let it be.

What am I talking about in such vague terms?? Beats me, but it is a nice thought.


7/2/2010

i finally went to a dr's appt (three months since the last)! i've been making excuses and missing past appointments, failing to reschedule, etc etc. each time it's a sordid reminder of something being wrong with me, very specifically, down to the tiny measures of protein and blood complements. however, none of it quantifies actual physical qualities of being sick (or not optimally well). from my blood and urine tests last month, i learn my 24-hr protein's pretty much plateaued around 200 mg, the complements are still low, a-dsDNA is still loopy. on top of that, my nephrologist decides to tell me now i should be careful and see all my other specialists to check for cancers because my meds make em all more likely to grow ... skin, cervical, what have you. i'm almost sure there are millions of little mutating cells throughout my body. i picture my white blood cells getting high and lazying about as the little creeps bandy and riot. it's kind of cute.

i asked my dr if he has nephritis patients who are able to work full time (aka resume normal life). according to my numbas (that god forsaken lab sheet from which we try to wring some clues) i am ok. by all accounts, i should be a fully functioning adult. but why am i not?

now i wonder if it has to do with my sleep quality? i have had crazy insomnia for a long time. i know have completely empty spaces in my memory, and i will not be able to recall timelines. especially when i am fatigued, i will have incredible trouble remembering anything. but trying to reclaim those memories are futile and useless.

A NEW TASK 6/?

The beginning of 2010 really begins with fashion week.

2/12/2010
we found out about the death of Alexander McQueen just as we were entering the show space yesterday. shocking considering he is at the peak, coming out of a spring collection everyone is still talking about. losing this man so early is one of the greatest tragedies to culture.

suicide is a violent way to die. we talked about how people who were stopped before jumping off bridges were grateful to have been thwarted. but suicide is also a way to control the ending of your life.

3/12/2010
it has been a very hectic past few weeks, with more than a few tales of the hospital. i hope for a strong recovery for everyone, though i know it takes time ... i'm happy to say that b and i are managing a mini all-indoors, limited space exercise regimen involving core exercises. i've also thrown some yoga and ballet warm-ups into the mix, and it really gets the energy up.

4/2/2010
since some friends have been having this working for mass-market / high-street conversation for a while, i thought it would be great to get some more advice:

"To add: A friend of mine designs the entire N.D.C. brand that is loved on these boards. He has an MA from the RCA in London

He worked at Decathlon (pile it high sell it cheap) French budget sports brand for a long time, then at Lacoste.

No one will think any less of you for working in the mass market. It won't taint or soil you! It doesn't bother my high end clients. People in the trade know better than that!


absolutely, working for the mass market helps 'grounding' a designer on practical issues like costs, sourcing, co-ordination and deadlines.
it also helps to learn how to work in the speed of light, not too much time to philosophise or take your time..
i find this an excellent experience for young designers who one day would like to move upstream or to create their own line.."

4/17/2010
there are some days i am so exhausted, i like to blame everything on what i am doing, and wonder why i am engrossed in an field so commercial, so narcissistic, etc etc. i like to think how branding everything, branding the Self, starts to create little monsters that are obsessions with persona, and while it's fun and funny to think about all these things, it gets exhausting.

another is, i never thought it very important to accumulate possessions, and sometimes have had great distaste for it, but i see this industry run on the fuel of this, every day. all the playing with codes and identity and it being a form of creation kind of loses its pleasure whenever i see the kind of greed / desire that it encourages and kind of has to happen to stay alive. (i would give some stories here, but maybe another time). perhaps it comes down to, i hate a hard sell and don't have respect for those who lie and call it an image thing.

Of course, this all just one side of the equation. When I delve into the work, words cannot express the pleasure I get from my job.

Anyway, a lot of my posts this year become very long, kind of dreary, and unpublished. As a result of tapering off the steroids? Accepting the magnitude of managing my poor health?

5/1/2010
I might change course on this blog and keep a running log of ailments. I read somewhere that having a disease like lupus is a part-time job. A part-time job all about taking care of yourself -- and I've never been intrigued by the prospects of having a job devoted entirely to the maintenance of my body. It makes me think of overwelming levels of either introspection and self-analysis or treating your body as an object to be utterly controlled. But ignorance is far more dangerous.

And since it fundamentally defines my life, I thought I should be gathering some notes in one place, not in fifteen notebooks and scraps of paper, much of it written in steroid induced manic scrawl. It could be helpful to see some progress and development, track any good findings from research and experiments, and just vent. While I have made some major upheavels in the last few years, the most relevent and important have been matters of health. Not design or politics or ... Career has been thrown into the mix, but oh how I wish I had the luxury to devote all my time to getting healthy. I think I could write volumes, personal encyclopedias.

Here is the blunt fact: I have the most serious form of lupus, type 4. The other fact is science knows very little about it's progression. I don't know if I should be working at all, except that at this moment I can without incredible pain, and loss of livelihood gives me anguish, so I do. I lack a lot of the so-called classic symptoms like skin rashes, arthritic pain and fatigue, but I have inflamed organs that make me at varying times painfully swollen, incapable of organizing thought, have chest pain, and have no desire to feed myself, which then gives me fatigue. My kidneys are wimpy. But I can work! But the other side is I have not reached remission and am still on a ton of drugs and it probably has something to do with the working. I also met briefly a woman who is a fashion designer with the same disease (type 4) and she is on the verge of death. I don't know about her lifestyle and the manifestations of her disease - lupus is a real f'in mystery how it moves - but the thought of dying at 43 scares the crap out of me.

In any case, I am having a bit of insomnia from some of these things, but there are really great things going on in my life as well. The fact is, no matter how great things are going or not going, it doesn't last. I started reading all these Buddhist books (Yes! You might become more "spiritual" when stuff like this goes on, but it's very practical) and I like to think about treating bad stuff that heads my direction in a kinder way. I might not like what's happening but let me shift my mind a little ... And take it as it is. Whereas in another manner I could beat myself up over not having fulfilled any of my goals that I set for myself at this age, feel bad that I can't keep up with any of my friends levels of energy, feel angry that I am sick and it never goes away, and feel ashamed that I am burden on others, etc etc etc. This is my chance to really stop judging myself harshly and by irrelevent measures.

If I don't have physical health, at least try to have other kinds of health. That would be good.

On that note, I will go to sleep.

Ps I am really excited to start this new segment of my blog and I hope you will find it useful too.

A NEW TASK 5/?

Now, these are some drafts composed after my second flare hit (coming out of remission with a vengeance):

1/17/2009
I have to religiously apply sunscreen and care for the health of my skin (which is its own organ, you know!), even though I don't most of the time. I weigh myself at least twice a day to check my water weight. I spend a lot of money on food and spend a lot of time cooking. Lots and lots of things I never gave a second thought to before are a part of my routine now.

This is a good sign. I am starting to do a lot more research on the lupus literature at this point. Slowly but surely ... but after this point, blog posting becomes quite scarce for various reasons. One is juggling school and a serious illness, and acclimating to the curtailed lifestyle of a semi-invalid. The other is the mind-fucking properties of steroids, which I like to equate to one long, continuous horrible drug trip that doesn't end, especially not in my sleep ... for over one year.


Mid-year, things get better. But we are also living in a place we no longer want to live in for various reasons that are too triggering to be divulged at the moment Anyhoo ... the summer of 2009 is quite nice it seems. Come fall, there an unposted reflection / summary:


9/1/2009
i've been in new york for a little less than a year now. in this year, obama became president as a man who tells the truth, american banking was called out as fraud, and in new york, the the summer never came. i also started school again after four years, overworked myself and had a flare in my illness, and (i wouldn't say "braved", but maybe ...) got dished my first really snowy winter without coming prepared with adequate boots.

it takes time to adapt to a new environment, but this was more of a jolt than living in a country where i couldn't read the written word. (sometimes living in a place so familiar but is new to you is more jarring than finding yourself in another country where you are obviously an outsider, right?) ah ... being an outsider! of course, starting school again after four years has something to do with it. and, it's also that i haven't found much time to relax. this town managed to call forth a number of my vices (working obsessively, not eating, among all sorts of misogyny and self-misogynies). well, i got it out at the start (let's hope it's purge before the really good stuff starts happening)! being in fashion, a place rife with people insecure about themselves based on really stupid things (to an attenuated degree) - another maze to navigate? (can't really find the right metaphors anymore) ... if anything, i've been super lucky to figure out a lot of things about ... things ... purely by contrast. at the same time, i have found some friends and have been able to work with absolutely awesome people who i deeply admire.


October finds me deep pining again for San Francisco / California in general. And then we zip ahead to the following year, when I am on break ...

2/3/2010
after being fucking exhausted pretty much the entire time i've been back from california, i decided to let today be a day of unabashed internet surfing, one of my true pleasures in life. and, i hate the feeling of left-hanging after leaving all those entries in my google reader checked "saved" for later. there's nothing like the delight of unearthing cultural gems to wash away the numbness you've developed from over-exposure to fashion chaos (and mixing metaphors). if i see another person acting chipper when they're mean or talk about editorial dressing, i will heave my body out the nearest window!!

Save Now

A NEW TASK 4/?

And more drafts to ponder:

7/24/2008
FIN!

Friends,

Counting down: I have a little over seven days left at a job that I despise. Perhaps the most wretched job I have ever had in my life (which really says a lot about my lack of work misery in general -- thank my lucky stars). All's I have to say is: FREEEEEDOM! I CAN ALMOST TASTE IT!

As they say, what doesn't kill ya makes you stronger. If suffering's inversely correlated with strength, then I will have enough muscle to lift a three story building after I get through with this job. Being treated as if I were an idiot, being totally unable to use any creative muscle, and working with divas and slackers simultaneously are among the choice joys of this position. On the other hand, I picked up a knack for fitting variously shaped things onto tiny shelves. Also, I'm pretty impervious to screaming bosses now as well as bugging the crap out of people to get work done, which might prove handy in the future.

I'm so happy to have this five month period come to a close, not a second too soon. A few days afterwards, I think the emotional numbness will melt, and slowly but surely, a sense of levity and pleasure in activities I once enjoyed will return. So, let's grab a drink (or an ice cream cone, if you prefer)! And let's go dancing!!


6/22/2008
i know this might not be the correct time to think about jackets, what with all this abominable climate change, but i am a sucker for dolman sleeves. looking at long coats and layers also serves as a popsicle for my mind; it can transport me to a cooler season ... or better, a cooler planet.



Just saying, I am glad I did not publish this.



9/18/2008
fun!

first day of internship!

(soho) showroom -> bank -> fedex -> manufacturing -> (garment district) lining warehouse -> manufacturer -> stock warehouse -> jewelry manufacturer -> 2nd manufacturer -> stock warehouse

in between, i had few minutes to stop by olive's for a corn muffin and picked up all my bobbin stuff at panda trim for sewing class. woot!

congrats to d on opening ceremony!!!


I am happy to come across this one. I forgot how exciting it was to be introduced into this world, and how it did not ever feel like drudgery, since I was learning so much and seeing so many new things. Recently I am always reluctant to send interns out on massive tasks like this because i don't want them to feel exploited, etc etc.






10/17/2008
to do

mail absentee ballot application
install fcp

cut samples for croquis (due: 3 days)
buy oil pastels, etc

move auntie's furniture to studio (due: end of month)
work on rc studio design

assemble bike
mail gifts
frame prints

find good to-do app on itunes that doesn't cost $9.99!

11/24/2008
things and solitude

some good things lately:

jonathan's birthday (happy bday, baby bro)
'taking over' - danny hoch at the public
bookbook brooklyn
steven alan massive sweater accumulation
figuring out the right bundled-up to wind chill ratio to stay warm outdoors


not so good things lately:

it irritates me when people complain about things that are not any form of suffering at all. if they would stay quiet, the world (or at least, i) would surely appreciate the reduction in noise pollution.

on the other hand, i read in the huffingtonpost (which i am actively starting to wean myself off of, post-election) this lifestyle article explaining that we exhaust a lot of energy in restraint (ok, no matthew barney references) -- whether it's pretending to be nice to those we would rather tell off, or making ourselves cut back on the calories. i suppose deciding between self indulgence and respect for others is the fine balancing act of a socially functioning individual. or at times, for those like myself, hermetitude (not a real word) is a more enticing and even necessary alternative.

solitude. karl lagerfeld does it.

Is this the point at which more and more posts become "lists"?

A NEW TASK 3/?

continued, excerpts from drafts never published:

4/11/2008
i came home and found out ringo can open doors himself!

Ringo is my german shep/lab. Having been abandoned by his family at age 1 (we adopted him from the SPCA) but possessing an above average canine intellect, I would say he is a tormented genius.

5/13/2008
buffalo stance

http://www.slamxhype.com/blogs/d/Adam/2007/11/30/ray-petri

http://www.nytimes.com/2007/03/11/style/tmagazine/11tpetri.html

http://niwde.blogspot.com/2006/12/ray-petri-buffa-style.html

Paying respects.

3/28/2008
catch-22's :

exercise makes you stronger, but too much makes you sicker.
eat meat to revive your energy, but don't because it'll hurt you.

there are fine lines between everything. they're finer when you're fucked up like i am.

all i fucking heard there was: you can't, you can't, you can't. it's fucking ingrained in my conscious like a perverse mantra.

but

saying no to things doesn't mean you say no to everything.

fuck it. fight it. turn the anger into something bigger. because everything they say means nothing. you make it what you want -- anything you want. fuck anyone else's idea of you -- you can make anything out of anything. no fear, all glory.

Wow! That's pretty embarassing. But I guess everyone has "those voices" now and then, hm?

6/12/2008
i found this dope little site called "friends of p." it's put together by graphic design buddies, inspired by their friend "p," who has lupus. so perfectly, it also comes with a tokyo police club cover of the rentals' "friends of p." (oh weezer!)

"our friend p has lupus, an autoimmune illness which causes her body to fight against its own organs rather than foreign substances. it affects over 1.5 million americans and there is no cure. as friends of p, we hope to raise awareness and funds with the lupus foundation of america for continued research."

what else? there's a tote bag! what!

well, this just made my day when i saw it drop into my google reader via the style press. what would i do without the internets? it makes me so happy to know that even if i'm down, in a quiet room on my laptop, i'm never really alone. (more at lupus & humor, lupus livejournal)

A NEW TASK 2/?

more snippets from the recent past:

1/23/2008
I've been going through months long phases replacing text with images and images with text.

Not sure what that even means.

2/21/2008
recollections

my first bound print portfolio:

pages: 16, incl cover
paper: neenah classic crest, 80 lb cover, 80 lb text
dimensions: 8" x 10"
binding: black tape bind

Okay, got it.

3 /23/2008
the burden of history is weighed in memories and guilt of unreconciled offences. it's the unspoken and nostalgia you find scrawled in a notebook and an image i imagined pure that is now so tainted i want to destroy it any way i can.

i can't destroy them. i must release them and return them to the time in history they belong --kept, , in the past, no longer able to incapacitate the present.

That's embarassing. Good thing I read "The Piano Teacher" since then and feel fine about being horribly traumatized. (That's hyperbole btw).

3/29/2008
her trove was not just a collection of personal favorites but a work of erudition, having lived through the scene in the early 90s.

Who is this??

A NEW TASK

i was debating whether or not to shut down this blog permanently, since it started taking a truly personal turn and could be mistaken for some passive aggressive therapy sessions slash just get disgustingly exhibitionist. what about all those weirdos reading this blog out there who know me? but now i think, what the fuck, let my life be fodder for their projections or sick fantasies or whatever. i will just say whatever i feel like on this thing and if it rubs you the wrong way so be it.

first thing i will do is give you some honest updates. obviously i have tried to keep up some sort of appearances at some point, but no more. it's all or nothing now!

ok, nevermind that. first thing i will do is give you some recaps. first, will be some drafts that i never ended posting, from some smidge of hesitation or full blown doubt and embarassment after writing. well, it sounds juicier than it actually is. here are a sampling:


3/23/2011
Things I've learned about myself the last year:

- Dry shampoo is a wonderful wonderful invention, especially for the icy throes of a unheated apartment in winter.

That didn't get too far.

3/5/2011
i have to say i am fuming at a certain apparel/lifestyle corporation popular amongst a youthful hipster demographic that starts with u and ends with -fitters. i designed shoes and handbags for a thing with them and they completely knocked the ideas off for their own label. for some styles, they didn't even bother to change the name! i know in the past we have come across some of their private knock-off contractors in midtown and seen their pattern-makers with OUR garments in hand.


i understand it is a given these mass market corporations thrive on knocking off up market work and on these 'cachet-endowing' collaborations, but it hits too close to home when you see your sketches and ideas being blatantly stolen without any sort of compensation for the small, independent company you work for. well, dog eat dog, i guess. sigh.


Not sure if I am really allowed to write this. Hopefully no one sues me?


8/26/2010
whoa, i never thought i would think about a life decision and hear the theme from bone thugs "crossroads" playing in my head and then think about how relevant it is.
See you at the crossroads, crossroads, crossroads/So you won't be lonely
so, i basically have this crazy opportunity to become a head designer at a fucking awesome label, design entire collections, work with such great coworkers and a hilarious boss, tons of growth, and have things i draw out in pencil become real objects within months.
but, there's a fork in the road. i have this other thought of moving home. back to california.
yes, leave nyc, and this thing i worked at these last two years, and getting to this spot where i am doing what i love, designing everyday, and learning something new - and more importantly, interesting - everyday. on top of that and so, so crucially, away from a bunch of the greatest friends, and all the times to be had.
why? this lifestyle ain't sustainable. i see myself down the line on dialysis and shit. i have a lot of pressure to stay healthy, and at this time, healthy and fashion generally don't mix. it is long ass hours and no vacations. crazy people, politics, frustration, more crazy people, and creation fueled by lots of caffeine, carbs, and well, cigarettes (but not for me!). and sacrifice.






Now you understand how some of these are better to sit on and be edited several months later, but then lose their relevancy somehow in the delay? I am just talking to myself.


6/21/2009
'memba?


lilly and derrick coming to visit
david byrne at prospect park (thanks em)
just hanging out
setagaya with mel and george
someone newly in loooooove ... wink
christmas all over again

i can't remember half the things that happen any more ...

i also missed a lot of stuff, but i guess that's the m.o. these days.


Wow, I don't remember pretty much half of these things. Lilly and Derrick, I do remember you. But the rest fails to be recalled. And that is why I need to update this thing. It is a journal after all.



More up in the next days.