Monday, June 28, 2010

showtime

well i have to get up at 4am and head to the hospital. for some reason i feel very nervous. when you're worried about something, you become hyper-aware of anything related to that something, thereby perpetuating the paranoid-ness. i guess a better word would be paranoia. i'm not superstitious, i think. but:

1.) the first thing i saw on the news today was a report on hospitals fucking up, specifically a woman's windpipe getting ripped open by the insertion of a breathing tube (which i'll be getting). her entire body became bloated with oxygen and she died.
2.) i got a letter in the mail last week from AARP, thanking me for requesting information about will-making, planning to leave my assets (LOL) to my loved ones, planning for funeral expenses, etc. i requested no such information, obviously, so this was creepy.
3.) i read craigslist missed connections sometimes, because they're alternately cute, poetic, disgusting, hysterical, etc. today someone posted something about death not being final, but rather being a portal to another dimension, etc. also creepy and not a missed connection.

in short it's easy to feel like the universe is reaching out to you in morbid ways when you're being subconsciously morbid. i might be a little superstitious. my chances of actually dying during the surgery are equal to the chances of a woman dying during childbirth. so, pretty slim. the risk lies primarily in the anesthetic, and that's what scares me. it's the idea that they put a needle in my hand, and then five seconds later i'm in a coma, breathing via a machine, and if i die, i won't even know it.

having said that, it actually helps immensely when people say "you'll do great." i was laying in bed last night at 3am and all i wanted to hear was a "you'll do great."

today i had lunch with brianne, and that lifted my spirits. she gave me stuff for the hospital: waterless shampoo (genius), chapstick, antibacterial wipes. it was very sweet. we're going camping in august down the cape, and this is the main thing i'm looking forward to. if i have the line out by then, i can even go swimming. the last time we went camping, we took a little blow up raft out on the lake under the stars. then shields got in the water naked and snuck up on us and tipped us over. it was awesome.

i think i'll do great.

Saturday, June 26, 2010

things that are good

1.) having someone else wash your hair in the kitchen sink
2.) making plans to go back to school
3.) dan warren baking me lots of peanut butter/chocolate chip cookies
4.) receiving really sweet letters via snail mail
5.) hearing that the boy in my last post is doing amazingly well post-transplant
6.) showing up for my last plasmapheresis treatment before the transplant to find my bed decorated with balloons and a "good luck" banner / being given a purple sparkly crown for the occasion, as depicted:
7.) forcing alby to wear said crown, as depicted (i can't figure out why this is linked):


8.)

Sunday, June 20, 2010

humbling

i'm feeling roughly 123483958 times better than i was earlier this week. the swelling's gone down and i can move pretty comfortably now, despite the perpetually raised right shoulder/hunchback i've developed from tensing my shoulder all week so as to not feel like my chest was ripping. i'm feeling pretty optimistic. friday was the first plasmapheresis treatment where i didn't encounter any complications with my blood pressure. there's a boy in the bed across from me who has to go through a few hours of dialysis directly after a couple hours of plasmapheresis. i can't even fathom this, but he seems to take it in stride. on tuesday he's getting his second transplant (his first one recently failed), and he's only 18. i am really, incredibly fortunate to have come this far without needing dialysis or a transplant. it sounds cliché, but i think it's true that there's always a reason to be grateful, even if that reason isn't always clear. and i like to feel grateful. for example: five years ago, to make a long story short, i wasn't very close with my father. and now, jackie and i are taking him out to dinner for father's day, and a week from tuesday he'll give me one of his kidneys.

Tuesday, June 15, 2010

boston below me

(in preparation for the transplant on the 29th, i have to get this thing called plasmapheresis for the next two weeks, and for a few months afterward. plasmapheresis is similar to dialysis. from what I understand, my blood is tunneled out through my jugular and into a centrifuge, which separates the plasma in my blood from the red blood cells. the plasma is the part of the blood that carries all the nutrients and stuff, the stuff that my kidneys can’t filter. I get the red blood cells back from the machine through the tube, but my plasma is replaced by albumin, which is basically protein, which I’m lacking. by removing the plasma, the main goal is to attempt to eliminate the antibodies produced by my immune system which attack my own kidneys, and therefore potentially my father’s (the donor) kidney, decreasing the chances that the FSGS will recur in the new kidney. to do this they had to implant a dialysis catheter in my chest, which is a tube tunneling from my jugular vein up into my neck and down through my heart. this happened yesterday.)

I get up at 5:30. I don’t want anyone to go with me. huge mistake. I feel pretty enthusiastic, even while running on one or two hours of sleep, which has been the norm since I’ve come back from school. my grandmother brings me to the commuter rail station. I take note of an advertisement for a new frappe at mcdonald’s. I wonder why mcdonald’s put an accent aigu over the ‘e’ in frappe, i.e., frap-ay. I listen to music on the train, and watch a man fall asleep holding his newspaper in the air right in front of him. I watch him until he wakes up. I watch the reflection of the man in front of me doing a crossword puzzle, shaking his pen whenever he’s in deep thought. I get off the train at south station, walk to tufts. china town is messy. tons of food on the ground, an old man using a metal rake to collect it into a neat pile of wilting produce. the cynic in me observes that the american dream is all around me. I get to tufts, check in. I’ve brought a backpack with books and a writing journal. I picture myself three hours in the future: reclining, still mildly sedated, at ease, recovering and writing things in the journal, getting ready to be discharged.

I ask if they’ll be using a heavy-duty anesthetic, I have some weird anxiety about anesthetic since the death of Michael Jackson, odd, and the doctor laughs and says “no jackson juice here.” they give me a benzodiazepine and some local anesthetic, which they shoot into my neck using two needles, but it’s not as bad as it sounds because the benzodiazepine has me in a nice dumb trance, staring at the shelves of boxes that say “SILK” on them for some reason. they make the incision and I feel the pressure of the tube being snaked through my chest, there’s an audible clicking sound and a clicking sensation as it goes in, like the adjusting of rollerblades, but it doesn’t hurt, it just grosses me out, so I look at the boxes some more and with every click I hear the word “SILK” in my head, until they just push the thing in and I hear SILK SILK SILK SILK SILK. after that they wheel me into the plasmapheresis place. the nurses are nice. I’m still pretty doped up. they start the procedure, and I watch two tubes of blood run out of me and into a fast-clicking machine and then back into me again. I can feel the tube in me, carrying the moving blood. about ten minutes into it I feel this unsettling, very palpable, cool vibration throughout my entire torso, and the room gets kind of hazy. I begin to panic, tell them how I’m feeling, then there’s doctors and nurses all around me and I hear that my blood pressure has plummeted to 60 over 40, which is exactly half of what it should be. they ask me if I took my blood pressure medication the day before, and I say yes, because nobody told me not to. they were supposed to tell me not to, but nobody readily admits this. they hook me up to an iv of fluids and calcium, but my blood pressure doesn't stabilize for another twenty minutes. they say something about it being due to my being a small person. a nurse in American flag scrubs tells me I have gorgeous hair, did I get it from mom or dad. mom, I say. am I going to be okay? I say. my doctor says he wants me to stay the night. the plasmapheresis session lasts ninety minutes, and the drugs wear off soon. I find that I can’t move the right side of my body, cannot lift myself up, lift my head, turn to the side. the tubing becomes heavy and swollen and painful, and I cry for an hour, squirm. there’s a man getting dialysis in the bed across from me, and I can see him watching me, and it irritates me. the tubing pulls, like there’s a tightened drawstring holding the right side of my chest together that might burst if I move an inch. all the doctors and nurses think my tattoo is a marking from a TB test. my tattoo is supposed to make me feel strong. I look at it and I feel nothing but the urgent need to exit my own body. i have to come in and do this treatment every Monday, Wednesday and Friday for “at least a few months,” my doctor says. but i can't fathom this, not even now. i'll be there again in ten hours.

when I’m in my room for the night, doctors and nurses come to ask me the same questions over and over again. one doctor comes in and I tell her I’m not sure this is all worth it, I’m not sure I want to do this and I’m not sure I care anymore about what happens, about anything. she says well what else would you do, meaning die, and I say that’s a whole other discussion, after which she sends in a young grad student who asks me if I’ve considered counseling, prozac, sharing things with people in a non-blog format. he means well. he gets very touchy feely. he tells me he loves my hair. he tells me he appreciates his health, and I really appreciate this. I want people to know when they’re healthy. I want to know when I’m healthy. I want to appreciate this, even this. the thing i said about not caring about what happens is a lie. he tells me it’s easy for him to tell me to be optimistic. I’m trying. it dwindles. sometimes I feel angry at healthy people if I feel like they take it for granted, or if I feel like their lives are too trivial, which is very presumptuous of me and which is not the right thing to feel. little things. like today, on the radio, I heard katie perry’s “california girls.” I fully expect radio pop to be mostly inane, but even so, to hear the lyric “california girls we’re unforgettable / daisy dukes bikinis on top” when my chest is exploding and bloody, I can’t help but think to myself, man, fuck katie perry.

and later, as I’m paralyzed in bed, unable to open my salad dressing and growing increasingly frustrated, the inevitable thought descends: the things we do to keep people alive. this past semester I was having a conversation with my boss in the dish room about pharmaceutical companies and modern medicine and how terrible it all is that patients don’t have more holistic options, more options in general. but then, I don’t have any holistic luxury. I can’t just change my diet (as he suggested) and get acupuncture and subvert my kidney failure. my life is entirely dependent on artificial medicine, which begs the question of whether or not I’m “meant” to be alive. but this thought assigns some kind of divinity to things that aren’t artificial. as someone who does not necessarily believe in divinity, I often find myself subconsciously subscribing to it, simply because it is engrained into my being from a religious childhood. and out of desperation, because of the illness. that morning I went home early from work, upset at the thought that what is natural is what is right, and so my life is not right, I am defying the very order of nature, whatever that means.

and if there is a god mandating this natural order, why would I pray for life to the very entity/force thing that wanted me dead years ago? everyone says I’m praying for you, and I’m obligated to thank them, and i am thankful for their thoughts, but I’m simultaneously secretly furious at these people and at their god. my grandma prays every night, with cards, rosary, the whole thing, my mother sends out prayer requests, has entire churches mumbling my name under their breath, and it makes me furious. it makes me sorry for these people, for my grandmother, my mother. I am wasting their time. their god is wasting their time. and yet when I’m at some threshold of uncertainty or fear, when my blood pressure is plummeting and I feel the odd wave pacing in my reacting body, I’m reduced to a desperate machine, and I find myself engaging in some form of prayer, whether it be SILK SILK SILK SILK or just a profound but mute please. i don't know.

I’m sitting up at eleven, pulse monitor wrapped loosely around my index finger, leads on my chest. I move a quarter of an inch, and the machine starts beeping wildly, again, apparently I’ve flat lined. I buzz for the nurse.
“can I help you?”
“yes, hi, apparently i’ve died again. also, I can’t sleep.”
the nurse comes in the room and gives me something to sleep, fusses with the machine, leaves. I get out of bed, drag the machine behind me, wait for the drug to kick in. I stare out the window at boston below me. seven floors up. people will be awake all night and I like it. I fall asleep and dream that I meet a nice guy at a mother and father convention, which is a convention of young people who congregate to discuss their appreciation for their parents. then I dream that I’m back at umass, and there’s a tornado warning. everyone runs to the campus center, which, in the dream, goes fifty floors deep into the ground. we’re running downstairs, thousands of us, only I’m being carried by a girl, a fellow student. I’m in great spirits. my arms are wrapped around her neck and I’m facing her, straddling her like a child as she races us to the fiftieth underground floor, and I’m singing to her, over and over again, how difficult could it be / we’ll live in a house by the sea!

Tuesday, June 8, 2010

today

today i got a minimalist tattoo (first/only) that everyone hates except jackie, then i went to marshfield and met up with friends for dinner. brianne and i walked out to the end of the jetty where we sat on dried bird poop, caught up and watched large blocks of rain happen in the distance over the ocean. the sun setting made the clouds and their rain pink. we made plans to make s'mores on friday night. today was really great.

this was a toy truck submerged in a small pool of jetty goo:


this is one of the many pictures i took of the pink rain:


and then this:

Sunday, June 6, 2010

sick hero

an inexperienced midnight phlebotomist using a larger needle than is necessary, misses the vein and has to reinsert the needle several times, moving the needle around inside the vein, and meanwhile i'm supposed to hold a meaningful conversation with my assigned doctor who is in scrubs that have neon cats all over them, and she reminds me of my American identities professor, the conversation being about whether the salsa i ate was mild or medium or hot, she’s not doing a very good job distracting me from the reality of the crook of my right arm. all I can think about is wanting to yell fuck, and really yell too, tell it like it is. I wait to fuck until they leave, I don’t want to offend the inexperienced midnight phlebotomist with the caked-makeup face, I knew when I saw her she was going to leave me with a big red thing on my arm, a sore vein, even after she tapped around, tourniquet on, and said nice vein. I get this a lot: nice vein. thanks. reminds me of the time my gynecologist said gorgeous cervix in the middle of the exam. I just laid there, really. I didn’t know what to say. I think I said: yeah. in my experience a dentist will never compliment you under any circumstances. dentists like to make you feel inadequate.

going to meet the man, by James Baldwin. we read that in American identities. my doctor is not my American identities professor. I keep forgetting. the mantra becomes I need this thing out of my fucking arm, and mom says shhh there’s a little boy next to us. there is, and he has bug bites all over his body from what I understand. his mother is wearing black loafers that move back and forth beneath the teal curtain, and they both fall asleep when the nurse leaves to do some things. I know this because after they wake up, she says to her son mommy fell asleep too. I’m hooked up to some machine that won’t stop beeping when I go to pick my cuticles, and that’s all I want to do, and move my arm so I don’t have to know there’s something in it. sometimes I think being squeamish is all mental. tonight with the plastic tube in my arm I think again. something in my body rejects this thing, fills me with a violent anger, like I have an itch that I can’t scratch or I need to stretch but I can’t move, I fantasize about ripping it out and walking out and going home and continuing to fail to sleep, resenting the indifferent lines that rearrange themselves to confess the time on my digital alarm clock, and they do it so quickly, I think, it is impossible to masturbate in the presence of any cat, or else the phone vibrates wildly on the night stand (“you awake?” “yes”), or else a sibling starts hissing into his microphone in the next room, recording in the wee hour, high. back to the hospital. my mom tells me about a dream she had, there was a fish tank teeming with fish and frogs. my grandmother takes the tank and dumps it out in the woods behind her old house. my mom is on her knees, collecting the fish from the dry leaves, stuffing them into her denim pockets. fish on dry leaves. I remember there was a time I went to the ER for something or other and there was a man behind some other emergency curtain screaming that the ER staff was plotting to kill him and that they were all insane.

a few days have passed and I’m making the long trek back from western Massachusetts. three hours through mountains and then nothing but the darkness opening before me, some lightning ahead, a wonderful playlist. then I’m at a gas station/burger king. there is a small child on the sidewalk, alone, furiously spraying an upside down june bug with a bottle of windex. i've never seen someone want something to die so much, and just for existing in a close proximity. the bug's legs plead in an upward motion, it's futile but i feel disappointed. back on the road, thinking why am I so shy, awkward, sometimes not at all but then ultimately regrettably shy. back on the road, trying not to think about june 29th, and so, naturally, thinking about june 29th. people want to visit me. I don’t want them to. people want to visit me and I won’t want them to leave. people want to visit me and I won’t be able to entertain them. and people want a sick hero. people want you to be lance fucking armstrong. maybe i will be. a phrase comes into my head: more spiders for your buck. instant kinship; I write it down in my little book. but where can I possibly use this line. are there any circumstances in which this would be an okay thing to say, and why not, and so are there better circumstances to be had? I can do nothing with this line except hear it over and over, imagine variations (more spiders/ur buck), fit it at the end of a blog post.