wockerjabby!

saturday, june 30

I.
I am holding his twelve-month-old brother in one arm and spreading peanut butter on saltines with my other hand.
him: are you going to be pregnant soon?
me: what? do you think I should have a baby?
him: no... you're not old enough to have a baby!
me: so why did you ask me?
him: you're old enough to be pregnant!

II.
I am coming down the front stairs, having just bathed the baby and put him to bed. the five-year-old is sitting on the couch, watching his allowed half-hour of cartoons.
him: rabi are you over eighteen?
me: yup, I'm nineteen.
him: good! then you can call this 1-800 number!

III.
we are sitting on his bed, with the lights out, and I am pushing his socks onto his feet.
him: do you have a big bed like mine?
me: actually, I don't really have a bed here, but my bed at college is skinny and longer than yours.
him: why do you have a bed at college?
me: because I live there most of the time.
him: but my mom told me you live at school!

little kids are so great.
22:42 ++

hot today with just the slightest breeze to nudge the dangling vines of my philodendron back and forth. sitting here and looking up at my hanging plants so that I see the half-color undersides of their leaves, curled around themselves for protection against the oven of afternoon-warmed air, I wish for that sort of buoyancy, to live suspended and feel the wind move with me instead of just past me, to let the sunlight touch me inside and out.

but still I am heavy and solid and opaque and flesh and water and blood and thought and human.
15:19 ++

friday, june 29

I walked a lot yesterday, and I'm feeling it today. the thing about rheumatoid arthritis is that a localized trigger can turn into a systemic flare, and so this morning my face was as swollen as my ankles. it's not a big deal, really, since my morning medicine will reduce moderate inflammation to just a bit of pink puffiness and the accompanying pain to little more than a faint throb and a sense of unsteadiness. but now, as I sit here chewing on a nectarine and contemplating the dull ache in the back of my jaw, I can't help but feel a little funny about it.

my dad has reinvented himself from a journalist into a muckraker, and for the past few years he's been coming home with horror stories about the nimh and the things that have been done to schizophrenia patients in the guise of treatment. I know he doesn't like me being on so many medications (of course, the biggest threats to his health have always been incidental injuries or situational circumstances, so I don't know how fair it is for him to think that). I did decide completely of my own volition, several years ago, that I would never let anyone give me drugs that affected my brain chemistry unless it were a matter of life and death (and once, in one of my romantic-nihilist moments, I decided I would rather be dead than have a drugged brain), but I don't think that really excuses me from my dependence on all my other drugs.

it's no huge secret that clinical trials have become completely corrupt and inaccurate, and that "double blind" is a misnomer on the order of "the hitchiker's trilogy," but all that does is leave people stuck between a rock and a hard place. so the fda is approving things based on trials conducted with profits rather than safety in mind. so the pharmaceutical companies are launching massive marketing campaigns without bothering to make sure they contain accurate information. so the doctors are being paid by the drug companies and are handing out prescriptions left and right based on propaganda rather than fact. so we know all these things. what are we supposed to do? say screw it and hope for the best? run our own clinical trials? go the christian science route? die?

there is, of course, the freedom of information act, but even knowing all the dirty little secrets isn't necessarily helpful. the drugs I take fall into three basic categories: the disease modifiers, which are supposed to help prevent permanent damage; the anti-inflammatories and immunosuppresants, which keep me up and about on a short-term basis; and the painkillers, which, while they rarely actually kill the pain, at least keep it sedated for most of the time. and my absolute favorite one is celebrex, a member of the third category and one of the most aggressively marketed and widely prescribed drugs in recent medical history. I've been taking it since I was seventeen, when it was brand-new. I have a lovely and very responsible rheumatologist, who is just as concerned with reducing my dependence on medicine as he is with making sure my joints and my brain and my eyes will still work in ten years, and he was very up-front with me about the potential benefits and inherent dangers of the drug.

at that point, it had only just been approved by the fda for use in adult onset rheumatoid arthritis, and it hadn't been approved for treating children under the age of eighteen. (aside from the problem that children are more at risk for long-term complications from daily medications, juvenile rheumatoid arthritis often runs a slightly different course than adult ra.) it had been shown to interfere less with platelet function than most nsaids, which was important since I was becoming increasingly thrombocytopenic. it was supposedly less likely to cause serious gastrointestinal problems (and it was later marketed as the "side-effect-free drug," which is utter bullshit), but there was no hard evidence backing that up. there still isn't, really.

but when you're a medical mystery, experiments are a way of life. I tried it. I liked it. it is the one pill I actually look forward to taking. it's little and smooth and flavorless, and it makes me feel better in a way that no other drug has ever managed to do. you can cry placebo effect, but I'm pretty sure that's not it. sometimes I fly in the face of good judgment and good patient behavior and stop taking it altogether, out of some sort of misguided optimism and convenient selective amnesia. I can go a few days before I start to feel sick, and in those few days I will have myself thoroughly convinced that this medicine-dependence is all in my brainwashed head, but then there will be the morning when I simply cannot walk and all I want is my little blue-striped pill to turn me from a cripple back into a rabi.

so. no matter what else this drug might be doing to me, it has done wonders for my quality of life, and it makes it possible for me to do "normal" things on a daily basis. I rely on it for normalcy, and it delivers. period.

and still, and still... there are bound to be long-term side effects that no one knows about; how could they, when there is only a three-year history? I know it's a bad idea to change my body chemistry, since most of my medications are actually interfering with the way my physiology functions and not just compensating for some sort of deficiency, which is why I was willing to go through all that biofeedback training to try and make them less necessary. I know pfizer doesn't give a damn about my health as long as they're getting my insurance company's money; if they did, they'd leave the feel-good yoga-lady commercials behind and start trying to actually inform their patients. maybe if I were a stronger person, I would see that I'm just buying into a short-sighted culture obsessed with quick fixes and easy answers, and I'd find some way to deal with pain that doesn't involve shutting down a bunch of my perfectly normal enzymes. I'm not sixty-five with an arthritic knee. I'm nineteen and thoroughly opposed to the idea that the best way to fix a problem is to chemical-bomb it into submission, and yet still chained to my own set of chemicals that I keep in their little plastic bottles, maybe chained as well to my own hypocrisy.

there are always a billion decisions to make when you're trying to deal with any sort of chronic condition, and there are never perfect solutions. but somehow it seems that being informed only makes those decisions harder, my convictions shakier, and the inadequacies on all sides more apparent.
12:49 ++

hint of planet-sized drifters bewilders hubble scientists.

I love press release headlines. poor hubble scientists, all bewildered! and somewhere out there, a bunch of giants wandering through space, beards and scraggly hair floating around them, wishing their dirty backpacks were actually jetpacks, looking for their next job or maybe just their next meal...

who was it that let me be an astronomer again?
10:37 ++

thursday, june 28

there was a rodeo on the boggle board. alison held up the brick wall and all the ants with a bookmark. ryan stood inside the fountain without getting wet. I do not smell like tuna fish.

I don't really mind being alone, but people remind me to miss having friends nearby. and I do miss it.
23:43 ++

I am feeling spectacularly incompetent today, between my inability to properly convert right ascension and declination into pixel values and my uncharacteristic inarticulateness. not understanding something doesn't usually make me feel stupid. not knowing how to ask for an explanation really does.

so it was nice when my advisor came down to look at the image I've been blindly poking at all day and got really excited about all the stars he could see. he was standing there tipping his head back and forth, closing one eye and then the other, looking at it from all different angles, and it made me remember that if I take a step back from all the point spread functions and deconvolution models, the stars look awfully beautiful to me too. and all these little pokes are bringing me that much closer to knowing something real about these stars and the surrounding nebula.

and hopefully I'll be more competent tomorrow.

meanwhile, if the radio is to believed, apparently some guy somewhere in europe has invented a machine that can give women sixteen orgasms in one minute. does that sound dangerous to anyone else?
16:39 ++

wednesday, june 27

all I wanted was a fork.

well, that's not entirely true. first I wanted food. usually I bring my lunch to work with me, but today I didn't because I had a dentist appointment at 1:30 and I knew if I had food sitting around I would end up eating it and getting it all stuck in my teeth.

in retrospect, maybe no one would have noticed if I had shown up with my teeth full of food. the dentist's office was pretty surreal today, thanks mostly to my punchy hygienist, who noticed my unusual medical history and tried to engage me in a conversation about kidney disease, of course while my mouth was full of mirrors and pointy things and her purple-latex-covered fingers. later she danced around the receptionist's desk in an overzealous demonstration for a violently blushing thirteen-year-old of how to seduce a boy at a school dance and how to gently squeeze toothpaste from the tube.

I don't remember this, but apparently when I was two years old I fancied myself quite the expert on toothpaste. one night when the next door neighbors' (much older) daughter was having a sleepover with me, we were brushing our teeth together and I thought I would share my knowledge. I was holding out my toothbrush, waiting for her to squeeze toothpaste on it. she was holding the tube, waiting for me to say "please." apparently I thought the problem was her cluelessness, not my lack of manners, so I told her in all seriousness that "a good idea is to tip it."

anyway, aside from my nutty hygienist and the proclamation that yes, my wisdom teeth do indeed have to come out this summer, it was a pretty typical dentist visit, complete with the flouride treatment that requires abstainance from food and drink for thirty minutes afterwards. I walked a few blocks to the porter exchange, which is one of the oddest buildings around, a combination of japanese stores, fitness centers, the smithsonian astrophysical observatory's business offices, and lesley university's administrative department. I poked around in the japanese grocery store looking for lunch (this is always an interesting exercise in good veganism, since I don't read japanese, the employees barely speak english, and even seemingly benign things like rice cakes often have shrimp powder in them).

even though I am a vegan, I'm not an especially sentimental one. I don't like watching animals get killed, of course, but I don't think most omnivorous humans like it much either. and while I find myself somewhat repulsed by the idea of putting a piece of steak in my mouth, it doesn't bother me at all to watch other people doing it, even though I know exactly where the steak came from and how it went from being a cow to being a brown slab covered in a1 sauce. but today while I was perusing the fish department (looking for seaweed salad, which I eventually found), I came across a little package of flying fish roe and I felt honestly distressed at the thought of them being eaten. caviar is ugly, but flying fish roe are little glistening orange spheres, and they look like something that belongs in the land of oz. the thought of someone scooping them up and chewing them into oblivion made me want to cry.

so after I bought my seaweed salad and peach jelly cup and this other weird thing that I think is made from red bean paste, I needed a fork.

you would think that in a building with nine little restaurants, there would be a spare fork somewhere. but. no. apparently the local philosophy is that if you are going to eat japanese food, you are going to eat it with chopsticks. even if the food in question is a bowlful of slippery udon noodles. whatever.

I still had a little while left before my thirty minutes was up, and I wasn't in a huge hurry to get back to my computers at work, so I went for a walk in search of a fork. it was 95 degrees and humid, very summer vacationy, and I thought being outside would be a nice change of pace.

first stop: pizzeria uno. the guy gave me a dirty look when I said I didn't want to sit down. I left.

then: mcdonald's. I haven't been into a mcdonald's in almost a year, and I haven't actually walked into one by myself in probably four times that long. is it me or do all mcdonald's restaurants smell like dirty grease? anyway, there were straws, coffee stirrers, about two thousand little ketchup packets, even those weird cylindrical salt packages with enough salt for at least fifteen ears of corn, but no forks. not even a knife.

then: cvs. I had no expectations of finding a single plastic fork in cvs, but I figured it would be okay to buy a box of utensils, since all my old ones at school are pretty much on their last legs at this point. the smallest box I could find was a party pack containing 100 forks, knives, and spoons in assorted colors. no.

finally: I gave in and went to star market, which is silly because if I had known I was going to end up there I would have just bought my lunch there in the first place and probably spent about a third as much money. strangely enough, I found the plastic forks next to the make-your-own-stir-fry bar, which also supplied paper-wrapped chopsticks for the people who can't stand to eat fake chinese food without the proper chinese utensils. there were no forks at the salad bar.

when you come right down to it, star market is a pretty decent name for a grocery store. it's more than just a name, it doesn't have any stupidly misspelled words, and it doesn't sound like something you would name a cheap children's toy. and it doesn't have a scary logo. when we lived in upstate new york and price chopper was the grocery store with the biggest stranglehold on the local food market, I was upset by the big teal quarter with an axe through it that decorated every store. it looked to me like betsy ross was being decapitated. so that made grocery store trips an oddly rollercoasterish experience for me, because first I had to look at the icky head but then I got to run around with coupons and hunt for the food in the right-colored boxes, food that didn't come from a garden or the woods or the one of the neighboring farms! and sometimes if we were really really lucky, we would get to buy our own little individual single-serving size dannon yogurt cups! but then I would have to look at the icky head again on the way out.

star market doesn't have a head, just a star. but before I made it as far as going inside I was accosted by a very tall guy with a very big afro. "yo excuse me," he said, "can you give us some money?" and that, frankly, is not the right way to get anyone to give you anything, so I shook my head and kept walking. sad but true fact: if I gave away a penny every time I got asked to part with my spare change, I'd lose around fifty dollars a year. of course you can't give someone just a penny, because that's an insult. anyway, once I had ignored him, the afro boy said loudly to the air and everything else in the vicinity, "that's just ignorant." I bit my tongue. maybe I shouldn't have, because when I passed him again on my way back in the opposite direction, he was throwing coins at an old woman to try and get her attention.

I did end up giving money away though, to another boy, who was standing just outside the doors. he wanted to sell me a candy bar or a scented candle to help buy new baseball uniforms for the high school team, who apparently made the state playoffs or something. that really makes no sense, since school isn't in session so I don't know why they would need new uniforms now, but hey, whatever. I had two singles in my pocket, and he was being nice, and being the rugby treasurer last year taught me a lot about the kind of money and hard work it takes to run an underfunded sports team. so I said, "sure, I'm a graduate of that school," and handed over the money with the sudden realization that this kid could very well have never shared the high school halls with me.

the gravity of the situation was apparently lost on him, because he took my money with a polite but distant thank you, and left me to stand there feeling a little stunned while he moved on to his next target. at what point is it that you keep getting older even though you stop feeling older? when I turned sixteen I know I felt like I was getting older, even though I told my dad that being sixteen felt just like being fifteen, for the sake of tradition, but now the only way I have to measure my aging is by the speed at which the people around me grow up. my brother will be as tall as me in a few years, I think. and about a month ago I saw the first little girl I ever babysat running down the street, taller than me, on the threshold of highschoolerness. I used to lie in bed next to her, rubbing her back in even little circles, singing along to her lullabye tape. I was younger then than she is now.

being a parent must be mind boggling.

at least I got my fork. the seaweed salad was fantastic. the shock of growing up I can maybe do without.
15:08 ++

tuesday, june 26

7 things that scare me

1. the cover of that twiztid album that keeps showing up in all the used cd stores.
2. betting my future on the medical industry. (which is exactly I am doing.)
3. big heavy strong guys who walk with a tiny bit of swagger.
4. the stitching around the soles of doc martens. (I used to look at it when the girls surrounded me on the school courtyard as a prelude to beating me up.)
5. my capacity for inventing things.
6. the smell of cherry trident chewing gum.
7. the thought that someone, somewhere, probably knows one of my secrets, and there's nothing I can do about it.
23:19 ++

my research advisor (aka my boss, although that sounds unbelievably weird to me) has a little rubber hippopotamus living on top of his computer monitor. it could possibly be the world's happiest hippo. its mouth is open in a gigantic toothy tonguey grin, its eyes are dimpled at the corners, and its ears are perked up at attention. it is colored peachy-pink around the neck and under its chin, as if it were once an entirely different hue that has been rubbed mostly away through love and whatever other affections a rubber hippo must endure, to reveal the plain grey underneath.

(oddly enough, if the little imprint on its underside is to believed, the hippo is from germany; I know from reading his papers that my professor was a fellow at the max-planck-institut fuer radioastronomie before he came to massachusetts, but I never thought of hippos as particularly german, so it was still a surprise.)

today the hippo has been playing on the keyboard, romping across the spacebar and up and down the number pad. this does make it a little difficult for me to type, but that's okay, since I'm mostly looking at images and zooming in and out to examine individual pixels. the hippo thinks all of this is wildly entertaining, and it likes to climb up on the back of my hand to get a better look at the stars on the screen.

besides, what would become of me if I could no longer be inspired to play by the joyful smile of a happy little toy hippo?
14:50 ++

so I promised you all some longwinded salespitch for this blogathon thing, and here it is in all its low-fi glory. seriously, please do read it and consider sponsoring me. it doesn't matter if all you can afford is a dollar; something is much more than nothing, and just as seemingly meaningless little letters can add up to novels and individual notes can add up to symphonies, little bits of something can add up to a whole lot.
00:23 ++

monday, june 25

the children have dispersed.

last tuesday was the final day of school for cambridge public kids, and all week I watched through the giant window as they played in the church parking lot next door, wearing brightly colored swimsuits and sunglasses and little else, sometimes chasing each other with plastic buckets full of hosewater, sometimes pelting the surrounding brick walls and occasionally each other with tennis balls, sometimes jumping down the painted-on hopscotch court, heedless of the actual rules of hopscotch that require pebbles and good balance.

watching them made me vaguely envious because it seems so long ago that summer was meant for playing and not for resume-padding and money-making -- although, while I clearly remember everything I did in the summers since eighth grade (computers; websites; quintet camp; biology; childcare; astronomy), most of the others run together except for individual memories (the day I panicked and failed my red cross intermediate swimmer test, even though I was completely capable of crawling the entire length of the pool; my second-ever rollercoaster ride on my tenth birthday; the afternoon my twice-my-age cousin took me to an indoor wave pool in london and offered me a cigarette on the walk home, cheerfully congratulating me when I refused in disgust but leaving me not at all reassured that he wouldn't have been equally cheerful if I had accepted), so perhaps there is something to be said for filling my days with more than tree-climbing and bike-riding and swimming pools and libraries and streetgames and ice cream trucks. probably not much, though.

today there are no children, and though I've been attentively watching the aquamarine honda that's parked outside, it's been significantly less lively than the children were. in fact, I haven't seen any people at all since I closed the office door a few hours ago, unless you count my boss's wife staring at me in full wedding-day regalia from the custom-made photo-printed mousepad, which I don't because I make it a point to park the mouse directly on top of her (not unattractive, but disturbingly frozen in a look of where'd-that-camera-come-from--shock) face. and I find myself missing the children, their colors and motion and antics; their absence has forced me to imagine them playing outside, and even when my imagination replaces them with my twelve-years-younger self, complete with sun-bleached hair and cotton sundress, watching imaginary children is rather like looking through an imaginary kaleidoscope: the colors are there, but the edges lack clarity and the motions lack fluidity.

maybe they've all gone on vacation, or off to summer camp like my brother did yesterday with his two duffel bags full of necessities and one shopping bag full of candy, but it feels as if they've been taken away as some sort of bizarre punishment for me and the trees and buildings who watched and reveled quietly in their presence. the emptiness leaves us out-of-time, undefined, limbo-ing with nothing to remind us of passing seconds except gentle, persistent winds and words strung together in run-on sentences.
14:02 ++

sunday, june 24

travis was in cambridge today, doing a set and signing at newbury comics, so I went but I purposely left all my cds at home so I wouldn't be tempted to stand in the signing line for hours. they were doing a studio interview in boston beforehand, so I listened to them on the radio while I walked to the train station, while the band talked in charming soft scottish accents about their first-ever baseball game at fenway last night; at the store, the invisible band and the man who were on interminable repeat while the techies set up, so by the time the band arrived at the microphones I had been listening to them for about five straight hours.

the store was full and I am short, so I watched for pieces between the crowd: andy's fingers on the banjo and his blond hair curling in deference to the humidity; dougie's shoulder underneath the bass strap; the brand-new navy red sox cap hiding fran's diminuitive mohawk, his bare arm slipping out of its faded green shirtsleeve; the guitar case reflected in the overhead mirrors, travis upside-down and backwards in white labeling paint just below the handle. not quite invisible, but almost.

fran healy has a beautiful voice. I am feeling better.
17:31 ++

I don't know why I do this, really.

I could blame it on the emotional fallout from yesterday's would-be disaster, or on being sleep-deprived, or on hormones, but really all of those are copouts because I know it is just me being me.

I used to wonder: is this who I am, this weepy shrieking creature living behind a lachrymal curtain, only pretending to possess even a thimblefull of equlibrium? is the world mocking me behind my back after leading me into my false belief that I could ever cope with all its spinning and all its mirrors? will I end up curled around my penguin in the corner of a white room, my hair cut away for my own protection, with my eyes closed tight against everything to keep too much of us from leaking into each other?

now I wonder: am I doing this to remind myself that I will very soon no longer be a teenager? that inevitability is by definition intolerant, and whether or not I'm ready to cope I must, because inevitably I will end up in the world where histrionics cannot excuse self-pity? when did being out of control turn into something so unfamiliar?

I can't forgive myself for who I am now, but I do know that this is not who I will always be, nor even who I usually am. fight it.
01:44 ++

a funny thing that happens if you bandage a skinless knee and deprive it of oxygen: it gets very, very hot. so now my knee is not only ugly, it's also cooked. however, if you don't bandage a skinless knee, it gets junk stuck to it and oozes various liquids all over the place that dogs want to lick off, so all things considered I think the mini-oven is better.

also. yes, I am blogathon-ing, which is still a bit surprising to me because I thought I wouldn't but today has been strange and so now I am. and you can sponsor me and help raise money for the mr. holland's opus foundation. more later if you're one of those people who likes a good story before you'll shell out any money.

many things later, actually, though I'm not sure how much later. I've managed to get myself into five or six projects all at once and even I don't know which one is going to emerged finished first at this point. I guess that's what I get for spending eighty percent of the day crying. eesh.
00:02 ++