this is the end of my blog. i think i'm done with writing and/or thinking about my body, because instead of providing an outlet for venting frustration, it increases frustration, makes me a crazy hypochondriac and causes extreme anxiety over what the future holds. and i didn't get the transplant so i could live less, i got it so i could live more and live better. the past month has admittedly been the most depressive, anxiety-ridden month of my life, and i'm ready to move on. good things are coming. thanks for reading.
i leave you with a link to this inspiring fellow: http://www.noob.us/humor/i-think-i-love-this-man/
Saturday, July 31, 2010
Monday, July 26, 2010
Tuesday, July 20, 2010
in no particular order
-got my staples out, didn't hurt
-got the jp drain out, weirdest sensation ever, like a snake being pulled out of a part of your body you didn't know existed
-there's a goddamn piano in my bedroom! as of this afternoon. so awesome.
-i went to a pool party at my aunt's this past weekend, spent time with jackie and chris, my dad and my dad's side of the family. first real outing since the surgery; it was very nice.
-i have $460 in food stamps. the possibilities are overwhelming. which is good, since i can't stop eating.
-blonde redhead is playing at the paradise in november, where dan, jackie, matt z and i first saw them in '07. one of the best shows i've ever been to. we're going to replicate that experience.
-i think i have a crush on / affectionate appreciation for my 40-something-with-two-kids transplant surgeon. he talks to me about books and poetry and his love of toy story, mostly. or maybe i'm just spending way too much time at the hospital, and he's the only male i've seen in a month that isn't my best friend or related to me. of course, it's also endearing that he saved my life. and that he encouraged me to go see inception without wearing a protective face mask.
-i can walk a little better every few days. i'm a little bit closer to being able to drive, and being able to escape the television, although now that i have the piano i think i can retire from the living room couch. i've happily gone four and a half years with no t.v., with the exceptions of last summer and now. i can't watch 95% of commercials/shows without making some snide sociological/feminist comment that probably irritates my mom.
gonna go2bed and walk better tomorrow.
-got the jp drain out, weirdest sensation ever, like a snake being pulled out of a part of your body you didn't know existed
-there's a goddamn piano in my bedroom! as of this afternoon. so awesome.
-i went to a pool party at my aunt's this past weekend, spent time with jackie and chris, my dad and my dad's side of the family. first real outing since the surgery; it was very nice.
-i have $460 in food stamps. the possibilities are overwhelming. which is good, since i can't stop eating.
-blonde redhead is playing at the paradise in november, where dan, jackie, matt z and i first saw them in '07. one of the best shows i've ever been to. we're going to replicate that experience.
-i think i have a crush on / affectionate appreciation for my 40-something-with-two-kids transplant surgeon. he talks to me about books and poetry and his love of toy story, mostly. or maybe i'm just spending way too much time at the hospital, and he's the only male i've seen in a month that isn't my best friend or related to me. of course, it's also endearing that he saved my life. and that he encouraged me to go see inception without wearing a protective face mask.
-i can walk a little better every few days. i'm a little bit closer to being able to drive, and being able to escape the television, although now that i have the piano i think i can retire from the living room couch. i've happily gone four and a half years with no t.v., with the exceptions of last summer and now. i can't watch 95% of commercials/shows without making some snide sociological/feminist comment that probably irritates my mom.
gonna go2bed and walk better tomorrow.
Thursday, July 15, 2010
update
i haven't wanted to write in here because there's so much i need to begin to say and express that cannot be expressed in writing, not yet anyway. the week of my surgery exposed me to a kind of suffering i didn't know was possible (largely mental) and so was not expecting, which sounds overly dramatic but that's the only way i could perceive it at the time. after six days in the hospital, six days of not really moving at all, gaining 16 pounds of fluid in 3 days, hallucinating on myriad combinations of drugs and painkillers, my transplant surgeon came in one morning to see how i was doing and i started crying hysterically and told him i had "lost my fucking mind," so they sent me home, where i've begun to regain it/lose it less.
they had me on a heavy dose of steroids for a few days (used for antirejection). the steroids made me very angry. it's a terrifying thing because you know it's the drug but you want to kill people regardless and you can't (or i couldn't) rationalize my way out of it. being 90% physically paralyzed (i.e. unable to sit up in bed without assistance) and filled with rage is a weird combination, because all you can really do is writhe and cry and swear and pull your own hair, and then when you try to sleep you have the following dreams, which are unprecedented in their vividness:
1.) i'm in a video game, jumping down the floors of a very tall building, on the outside of the building, landing on slim ledges that extend from each floor. a friend is with me, jumping too, but he misses a ledge and falls many stories. when i reach the bottom, i find him, and he's alive but his skull has broken into many pieces inside his head. i hold his head in my hands and it feels like putty, and i try to piece the pieces back together, telling him he's going to be okay, lying, and he's staring into my eyes like he trusts what i'm saying, and then he dies in my hands.
2.) i'm sweating (in real life), so instead of waking up and removing blankets, i dream that i'm writhing in scalding sand in a desert, and then on blistering pavement in a city.
3.) i'm on the subway in boston, and there's an obese woman laying naked on the floor of the train. she has what appears to be ground beef oozing from her stomach at an alarming rate. nobody seems to notice. the oozing makes some kind of urban music, which is kind of enjoyable, but the enjoyable sound juxtaposed with the upsetting image makes for a highly unsettling feeling.
i also had one really nice dream though. i was performing at the flywheel with a homemade instrument. it was kind of like a harp but it was strapped to my chest, and it was really beautiful, black and silver, and the music in the dream was beautiful and lasted a long time. i had a boyfriend in the audience, and after the show we were walking through umass hand in hand back to our dorms.
i wrote this while i was in the hospital and on drugz:
not sure what to write about. it's 12:53 and i'm sitting up in a hospital room. in the reflection of the window i can see nurses pacing back and forth, sometimes. i feel like i don't know anything about the world. being here with a long scar across my lower abdomen and a little drainage tube protruding from my side. it fills with a pink fluid, the same fluid that makes its way through the stitching anyway, through the bandage, onto my bed. the nurse tells me when they get rid of the drain, they just pull it right out. "it'll hurt," she said. i can't even fathom this, i'm not sure why she told me this. if you could see it, see the hole it comes out of, it just seems like something that would be done in a saw movie. i've decided that i will never see a slasher movie again. i think they are inherently wrong, and i think that anyone who has ever been physically vulnerable/had surgery knows why. also, desensitization to violence, etc. real horror doesn't need blood and guts, appeals to something else. i've been in this bed since tuesday, about, with the exception of a few walks, trips to the bathroom. i feel like i've lost my mind. the nurse finds me in a stupor, hallucinating, says she's there if i need to talk, but there's nothing to say. what can i possibly say. a void where health should be is the most isolating place in the world. it's your own, single cell, and no visitor can attempt to fill it. you are alone in your body. i hate the drugs. i want the sun to rise immediately. night is like a death sentence. silence, darkness. i need to get out of here tomorrow. if i buzz for the nurse, i can hope that she'll arrive in half an hour. she'll give me a pill and i'll get empty rest, the kind of sleep that brings more restlessness. it's just a period between bridges, bridges that bridge more periods of healing and waiting to live. there is no way to not be completely and horrifically conscious. the tremors. something moves my head in my sleep; it's a surge of the drug, and my brain imagines a child out there, kicking me. i say to it: why would you do that? you keep kicking me, nudging me, sloshing me back and forth. something is radiating in me. what can i possibly say to a nurse whose eight hours is almost up. she brings me a tooth brush. my hair is grease. they give me a cartoon pamphlet called realistic expectations (for kidney transplant recipients). i don't understand. do they want you to be happy or conscious, do they want me to be optimistic or cautiously optimistic, because there is a difference. the very thought of food is greatly upsetting to every facet of my physical and mental consciousness. my sanity stares into the mean eyeball of the low bacteria hospital menu. everything sounds like scabs, scabs with salty condiments, scabs in the form of a low grade, low sodium meat, carbohydrate, a muted sweet, a pale vegetable scab. even the sight of the bottled water fills me with dread. can't cough, can't laugh. tried to laugh at something dan said, felt like there was a knife punishing me from the inside out. every angle of movement is calculated and plotted in advance, is braced for, every error accounted for, or attempted. every error is deeply significant. one small unexpected cough can fill you with a balloon of pain that leaves you groping for something i can't articulate. god, or something. in my flea market meditation book, there's a meditation called I AM NOT THE BODY. i have been chanting this at every turn. i am not the body, i am not the body when there are a dozen tubes coming and going, trafficking strange intravenous cargo. i am not the body when: i look down and see forty staples casting a half moon over my lower abdomen, when i consume thirty pills, when they pull the catheter from my neck and tell me to breathe deep. but at some point, i must confess that whatever i am is attached to the body, has a loose finger caught in its jar. if i just keep writing the sun will come up eventually. a few more hours now. i can sleep when it's light out, when people are awake. [end]
this experience has made me think about sick people, specifically about sick people who don't have support systems. it makes me feel deeply grateful, but in this gratefulness i feel like there's some culmination i'm not achieving. like it's not enough anymore to just be grateful, like i have to do something, because i can't stand the thought of suffering people not having support systems. it's a highly emotional kind of gratefulness, which i've never experienced before. i haven't been able to walk without being in a lot of pain, so i've been largely immobile since the surgery. so i've been thinking a lot about legs, too, about mobility and how incredible it all is. when i can walk again i think i won't sit down for a month. i had a dream two nights ago that i was running alongside cars on the highway, and it was the most exhilarating dream, and it was my subconscious responding to and protesting having to sit on the couch and watch america's got talent night after night. i've also become extremely grateful for other things. like, my roof. which sounds cliche, but i was always quick to not appreciate my house, because it's more like a trailer and less like a house, and it's in a crappy, embarassing park/neighborhood. but i fell in love with my house at 4am the other morning ago when it was thundering and i could hear the rain bouncing off the air conditioner dan has so generously donated and installed for my comfort, and i fell in love with it simply because i wasn't outside, and i also fell in love with the ugly gaping hole in the crawl space because i knew there were cats underneath my house staying dry.
i don't feel the need to complain about much of anything anymore (unless it's being in pain, or anticipating getting that drain tube thing pulled out of me next week) because i'm so happy to be in better shape than i was two weeks ago, and so happy to not be in a hospital room. before the surgery, i was concerned about all kinds of stupid things, like, will i gain weight after the surgery? will i be able to smoke the occasional joint? will i have a bump where the kidney is? i haven't gained any weight (i lost the 16 in less than a week), but i do have a weird bump that's noticeable when i lay flat, and i couldn't care less about that or the big scar i'll have. brad has informed me that i can brew marijuana tea (i can't smoke it anymore), although getting high is the last thing on my mind right now; i think being able to walk will be a high in itself. viewing the surgery as a second chance at a better life puts everything into perspective, and i hope that i'll retain this perspective even after i'm fully recovered. i hope that i'll continue to appreciate my family like i appreciate them now. my mom waits on me hand and foot, and jackie brings me movies and has taken time off work to bring me to my appointments in boston. and i can't even begin to articulate my appreciation for my dad, who has handled this whole thing so well and who never thought twice about donating his kidney. i'm just in awe of how lucky i am.
they had me on a heavy dose of steroids for a few days (used for antirejection). the steroids made me very angry. it's a terrifying thing because you know it's the drug but you want to kill people regardless and you can't (or i couldn't) rationalize my way out of it. being 90% physically paralyzed (i.e. unable to sit up in bed without assistance) and filled with rage is a weird combination, because all you can really do is writhe and cry and swear and pull your own hair, and then when you try to sleep you have the following dreams, which are unprecedented in their vividness:
1.) i'm in a video game, jumping down the floors of a very tall building, on the outside of the building, landing on slim ledges that extend from each floor. a friend is with me, jumping too, but he misses a ledge and falls many stories. when i reach the bottom, i find him, and he's alive but his skull has broken into many pieces inside his head. i hold his head in my hands and it feels like putty, and i try to piece the pieces back together, telling him he's going to be okay, lying, and he's staring into my eyes like he trusts what i'm saying, and then he dies in my hands.
2.) i'm sweating (in real life), so instead of waking up and removing blankets, i dream that i'm writhing in scalding sand in a desert, and then on blistering pavement in a city.
3.) i'm on the subway in boston, and there's an obese woman laying naked on the floor of the train. she has what appears to be ground beef oozing from her stomach at an alarming rate. nobody seems to notice. the oozing makes some kind of urban music, which is kind of enjoyable, but the enjoyable sound juxtaposed with the upsetting image makes for a highly unsettling feeling.
i also had one really nice dream though. i was performing at the flywheel with a homemade instrument. it was kind of like a harp but it was strapped to my chest, and it was really beautiful, black and silver, and the music in the dream was beautiful and lasted a long time. i had a boyfriend in the audience, and after the show we were walking through umass hand in hand back to our dorms.
i wrote this while i was in the hospital and on drugz:
not sure what to write about. it's 12:53 and i'm sitting up in a hospital room. in the reflection of the window i can see nurses pacing back and forth, sometimes. i feel like i don't know anything about the world. being here with a long scar across my lower abdomen and a little drainage tube protruding from my side. it fills with a pink fluid, the same fluid that makes its way through the stitching anyway, through the bandage, onto my bed. the nurse tells me when they get rid of the drain, they just pull it right out. "it'll hurt," she said. i can't even fathom this, i'm not sure why she told me this. if you could see it, see the hole it comes out of, it just seems like something that would be done in a saw movie. i've decided that i will never see a slasher movie again. i think they are inherently wrong, and i think that anyone who has ever been physically vulnerable/had surgery knows why. also, desensitization to violence, etc. real horror doesn't need blood and guts, appeals to something else. i've been in this bed since tuesday, about, with the exception of a few walks, trips to the bathroom. i feel like i've lost my mind. the nurse finds me in a stupor, hallucinating, says she's there if i need to talk, but there's nothing to say. what can i possibly say. a void where health should be is the most isolating place in the world. it's your own, single cell, and no visitor can attempt to fill it. you are alone in your body. i hate the drugs. i want the sun to rise immediately. night is like a death sentence. silence, darkness. i need to get out of here tomorrow. if i buzz for the nurse, i can hope that she'll arrive in half an hour. she'll give me a pill and i'll get empty rest, the kind of sleep that brings more restlessness. it's just a period between bridges, bridges that bridge more periods of healing and waiting to live. there is no way to not be completely and horrifically conscious. the tremors. something moves my head in my sleep; it's a surge of the drug, and my brain imagines a child out there, kicking me. i say to it: why would you do that? you keep kicking me, nudging me, sloshing me back and forth. something is radiating in me. what can i possibly say to a nurse whose eight hours is almost up. she brings me a tooth brush. my hair is grease. they give me a cartoon pamphlet called realistic expectations (for kidney transplant recipients). i don't understand. do they want you to be happy or conscious, do they want me to be optimistic or cautiously optimistic, because there is a difference. the very thought of food is greatly upsetting to every facet of my physical and mental consciousness. my sanity stares into the mean eyeball of the low bacteria hospital menu. everything sounds like scabs, scabs with salty condiments, scabs in the form of a low grade, low sodium meat, carbohydrate, a muted sweet, a pale vegetable scab. even the sight of the bottled water fills me with dread. can't cough, can't laugh. tried to laugh at something dan said, felt like there was a knife punishing me from the inside out. every angle of movement is calculated and plotted in advance, is braced for, every error accounted for, or attempted. every error is deeply significant. one small unexpected cough can fill you with a balloon of pain that leaves you groping for something i can't articulate. god, or something. in my flea market meditation book, there's a meditation called I AM NOT THE BODY. i have been chanting this at every turn. i am not the body, i am not the body when there are a dozen tubes coming and going, trafficking strange intravenous cargo. i am not the body when: i look down and see forty staples casting a half moon over my lower abdomen, when i consume thirty pills, when they pull the catheter from my neck and tell me to breathe deep. but at some point, i must confess that whatever i am is attached to the body, has a loose finger caught in its jar. if i just keep writing the sun will come up eventually. a few more hours now. i can sleep when it's light out, when people are awake. [end]
this experience has made me think about sick people, specifically about sick people who don't have support systems. it makes me feel deeply grateful, but in this gratefulness i feel like there's some culmination i'm not achieving. like it's not enough anymore to just be grateful, like i have to do something, because i can't stand the thought of suffering people not having support systems. it's a highly emotional kind of gratefulness, which i've never experienced before. i haven't been able to walk without being in a lot of pain, so i've been largely immobile since the surgery. so i've been thinking a lot about legs, too, about mobility and how incredible it all is. when i can walk again i think i won't sit down for a month. i had a dream two nights ago that i was running alongside cars on the highway, and it was the most exhilarating dream, and it was my subconscious responding to and protesting having to sit on the couch and watch america's got talent night after night. i've also become extremely grateful for other things. like, my roof. which sounds cliche, but i was always quick to not appreciate my house, because it's more like a trailer and less like a house, and it's in a crappy, embarassing park/neighborhood. but i fell in love with my house at 4am the other morning ago when it was thundering and i could hear the rain bouncing off the air conditioner dan has so generously donated and installed for my comfort, and i fell in love with it simply because i wasn't outside, and i also fell in love with the ugly gaping hole in the crawl space because i knew there were cats underneath my house staying dry.
i don't feel the need to complain about much of anything anymore (unless it's being in pain, or anticipating getting that drain tube thing pulled out of me next week) because i'm so happy to be in better shape than i was two weeks ago, and so happy to not be in a hospital room. before the surgery, i was concerned about all kinds of stupid things, like, will i gain weight after the surgery? will i be able to smoke the occasional joint? will i have a bump where the kidney is? i haven't gained any weight (i lost the 16 in less than a week), but i do have a weird bump that's noticeable when i lay flat, and i couldn't care less about that or the big scar i'll have. brad has informed me that i can brew marijuana tea (i can't smoke it anymore), although getting high is the last thing on my mind right now; i think being able to walk will be a high in itself. viewing the surgery as a second chance at a better life puts everything into perspective, and i hope that i'll retain this perspective even after i'm fully recovered. i hope that i'll continue to appreciate my family like i appreciate them now. my mom waits on me hand and foot, and jackie brings me movies and has taken time off work to bring me to my appointments in boston. and i can't even begin to articulate my appreciation for my dad, who has handled this whole thing so well and who never thought twice about donating his kidney. i'm just in awe of how lucky i am.
Saturday, July 3, 2010
also
i know things will get better. jackie did this really sweet thing a couple weeks before the transplant. she contacted some of my friends on facebook and had them send her letters/cards/words of encouragement via snail mail, and she brought them in to me yesterday, and it lit up my whole day. things can only get better.
hi
i'm on perx in the hospital, tubes every which way, still can't really walk, feels like a fat man in a papoose is strapped to my chest. i've gained 15 pounds of fluid in four days. they have me on steroids for the first week to help prevent rejection. i don't know why they wait til night time to start the eight hour drip, because i started hallucinating and was hot and sweaty then freezing and very angry, couldn't move or find the nurse button, started yelling and then crying and the nurse came in and said oh, this is steroid psychosis. thanks for the memo. aka roid rage. she gave me a benzo and i woke up at 1:30pm. i need physical therapy to get me out of bed, i don't know where they are, they never come. no appetite. blood sugar too high from steroids, they have me on insulin. at night when the window is closed and it's dark i feel like i don't exist. i hate the television. i don't want my friends to see me. dan came last night and brought me a life sized cardboard cutout of the handsome vampire from twilight. he's been in the corner of the room because he scares the shit out of me and the nurses. dad is doing well, he went home today. i go home on tuesday, somehow. steroids are very, very terrible drugs.
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.
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.)
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!
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:
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.
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.
Monday, May 31, 2010
some things
today was a good day. I wake up every day with nothing to do and then I do whatever I want. it’s liberating. I met up with alex, pat and teddy for lunch/fruit smoothies in boston. gorgeous day, even with the eerie, invasive cloud of smoke from Québec, even though we didn’t stick around long enough to see dave the street magician deep throat a three-foot balloon.
the bp oil spill is really upsetting me. the people who like to defend big corrupt corporations (republicans; I don’t care who I’m stereotyping/offending) are attempting to blame the EPA for forcing oil companies to drill so far offshore, since the spill would be easier to contain if it weren't 5,000 feet beneath the ocean's surface. this logic makes no sense. if you break a rule, you don’t blame the outcome on the existence of the rule, unless the rule isn’t justified, and I’m sure this one is, for obvious reasons. the fact of the matter is that bp had hundreds of violations that they ignored in the interest of saving money, at the expense of the employees who died, and also at the expense of the entire eastern seaboard, potentially. and I don’t understand the logic behind this “cap” plan. putting a “cap” on the well sounds a lot like putting a “dome” on the well, which they already did, which failed. think about it: cap. dome. see what I mean? (maybe it’s the companion underwater robot that distinguishes the cap from the dome!) also, I think a more viable option would be to block the well with all of bp’s cash and ceos. also, also, also. I can’t even think about it, it fills me with the type of anger I can’t do anything with.
so...
old fav.:
the bp oil spill is really upsetting me. the people who like to defend big corrupt corporations (republicans; I don’t care who I’m stereotyping/offending) are attempting to blame the EPA for forcing oil companies to drill so far offshore, since the spill would be easier to contain if it weren't 5,000 feet beneath the ocean's surface. this logic makes no sense. if you break a rule, you don’t blame the outcome on the existence of the rule, unless the rule isn’t justified, and I’m sure this one is, for obvious reasons. the fact of the matter is that bp had hundreds of violations that they ignored in the interest of saving money, at the expense of the employees who died, and also at the expense of the entire eastern seaboard, potentially. and I don’t understand the logic behind this “cap” plan. putting a “cap” on the well sounds a lot like putting a “dome” on the well, which they already did, which failed. think about it: cap. dome. see what I mean? (maybe it’s the companion underwater robot that distinguishes the cap from the dome!) also, I think a more viable option would be to block the well with all of bp’s cash and ceos. also, also, also. I can’t even think about it, it fills me with the type of anger I can’t do anything with.
so...
old fav.:
Friday, May 28, 2010
single engine
one day a couple years back. Jackie and I were parked at the seawall in the winter, the ocean to the left of us, gray, heaving, wholly unwelcoming. I’m sure we were eating sandwiches, I imagine we watched the bored seagulls and wondered if their beaks really were perpetually bleeding. the guard tower stood towering (imagine that!) a ways before us on the shore, surrounded by vacant, shingled beach houses. people really love warm weather, neglect the atlantic in the winter. the tide always seems so high in the winter, like it’s reaching out to all the summer people who’ve fled inland for the cold months.
we were eating sandwiches, I’m sure, jackie’s without mayonnaise and mine with, when we saw a single engine Cessna approaching the coast, low, it was so low we immediately sat up in our seats, alarmed. it wasn’t going to clear the houses, the tower, there was no way, it was heading straight for them. we gasped in horror at the crucial moment. we heard nothing, saw nothing, the plane never reappeared anywhere at all, not over the houses, in the houses, or back out over the sea. but there had been nowhere else for it to go. we discussed the event at length for weeks. we don’t know what happened to the small ghost plane.
that was one day a couple years back. the day I’m talking about now is a different day, a day a couple days ago, a day when the summer folks were warming up once more to the ocean. here’s the scene: I’m wearing a one piece my mom wore in the early nineties. the legs are cut too high up, like the red bathing suits on Baywatch. there’s a loud flower pattern all over my body, gripping every weird angle. jackie’s wearing a green and white bikini, we’re on the old beach, and no one’s in the water. it’s only may. two guys walk by. they say: “dick tease.” we briefly probe into the likelihood of the phrase “vagina tease” being used (by females) in a similar context, decide against it, I’m not sure why.
down to the shore. the water is cold, as cold as I remember it being as a child. Jackie says we can’t do it, but I know we did, we can. I work myself up and go under, a million pins jolting me, electrifying molecules, I think about the BP oil spill, touching this water somewhere somehow, I feel incredible. we go back to jackie’s new apartment and I swivel in her new swivel chair, eat a whole cheese pizza while the grease from the cheese seeps through the thin box and discreetly touches the freckles on my thighs.
I’m driving home in mom’s car. not even a tape deck, just the radio. I haven’t heard the radio in years and years. relentless disappointment or bewilderment (kesha?) until ace of base comes on, and I can sing to this, word for word, j- and I used to press play at the same time through our bedroom windows, second floor, adjacent but not perfectly, always a small delay but we strove for excellence anyway, two radios attempting to coo the flawless alignment of “she leads a lonely life /oooh / she leads a lonely life!,” those being the good old days. which reminds me, I had dinner with my dad a couple months ago. I love to hear him talk about what he feels were the good old days, and we bridge the gap between his good old days and mine when he quotes Carly Simon: these are the good old days, he reminds me, this one before us, with our bright salads before us, 2010, and I agree. still has flashbacks from an acid trip he had when he was 17. when I see him stoic, stern, conservative to his very core, I like to summon the image of him with long hair, the world around him feigning a superior paisley skin, and now revisiting him slyly between consciousnesses in the twenty-first century. I wonder how different I’ll be, how stoic, when I’m older. I wonder if my worst drug experience will be dormant but stirring still, I wonder if the thought of it will still make me curl into a ball, wonder if I’ll remember the poem I wrote about it that I posted on a “serious” poetry forum, little to no feedback.
when I get back from the beach/jackie’s, this happens later in the day, roughly:
“whatcha reading?”
“bukowski.”
“blue husky?”
“yes.”
“I saw the grossest thing today, at betty’s. there was cat shit all over her floor, and her dog just came over and ate it. then there was a little bit left, and betty came over, took it up in a paper towel and just put it on her kitchen counter. I tell ya, if I was an easy barfer, I woulda barfed all over the place, it was just disgusting.”
“yeah? that’s pretty gross.”
“yeah. disgusting. did you make a therapy appointment yet?”
“I tried. they were having some problem with my insurance. some kind of bureaucratic nightmare.”
“it always is.”
“yeah. did I show you the graduation photos?”
“no. I hope I’m not in any of them.”
“check them out.”
“there better be none of me.”
“there’s only one. here it is.”
“oh. oh, no. I look like a rock and roller. I look like fucking ozzy osbourne.”
and then something about a pinched nerve in her back being like a toothache from her ass to her knee; I’ll remember that one. I check facebook, which alerts me to a friend liking Gullah Gullah island. me too; fond memories of a giant yellow frog dancing with children in a yard, and of course the jubilant theme song. I click: “Like” and suddenly I’ve joined the Gullah Gullah island group, a commitment I’m not ready to make, I thought I was just liking the fact that she liked it, wonder briefly if facebook will ever allow me to like the fact that someone else likes a fact, and so on and so forth. tomorrow is the final appointment in boston where we talk about my kidneys and whatnot, their failing, and everyone wants to know: “are you scared?” and when I tell them yes, they tell me I shouldn’t be quite so scared, so I stopped saying “yes,” and when I say “no,” they recommend that I anticipate it at least a little bit so as to prevent the sudden onset of a harsh reality, etc. so, I’ve become kind of indifferent, consistently. at first it was a “fuck you” indifference, but now it’s just true indifference. as far as I’m concerned, one day at the end of june I’ll be living like any other 23 year old in the middle of nowhere, dutifully wiping the pollen from my cat’s yellow spongy nose with a damp facecloth even though I think it is really quite precious, and the next day I’ll wake up with a morphine IV, a new organ, a freshly annihilated immune system, some red jello.
so, we go into boston the next morning, my dad and me, meet with the nutritionist, pharmacist, social worker, phlebotomist, transplant surgeon, transplant coordinator, I mention to my dad that I’m interested in phlebotomy, the delicate art of probing crooks of arms with butterfly needles and otherwise. nutritionist reiterates high protein low sodium diet, I’m not eating enough, transplant surgeon says I should feel much worse than I actually do, it’s kind of miraculous. I’m asking him questions about plasmapheresis and outpatient treatment (can I go back to western mass? please?) when he interrupts me and says “what did you major in?” with a knowing smile, like he knows suddenly that I’m an English major, probably because I ask what I will require instead of what I will need, I tell him I like wordsworth even though people think he takes himself too seriously (he might) and he likes wordsworth too. he says I will experience a sudden mental clarity after the transplant. neurotoxicity. the blood becomes so dirty it affects your ability to focus, think, which would explain why I sought out ADHD medication last semester (never got it) and was often content to be completely inactive, mentally and physically, hard to go to work, hard to wake up, hard to do schoolwork and hard to be with people. my surgeon says I am accustomed to this lethargy, so I’ve ceased to experience it as something abnormal. it’s become normal, the only way of being that I know, and so I’ll feel good in ways I don’t even know are possible. I feel like this a present of sorts, like the rush you used to get from opening a Christmas present. I anticipate this rush, this wanting to do things or finish things, being able to. pretty neat. for the first time in this whole process I feel like I have something to gain, after all the intense anxiety over immunosuppression, reduced life expectancy, cancer. I don’t care anymore, mostly because I simply can’t. truth isn’t always the best thing to focus on if it negatively affects how you live your life. I’ve always been obsessed with truth, whatever that means, and now I’m learning that the pursuit of life is greater than the pursuit of truth (they aren’t necessarily synonymous), and insofar as the latter interferes with the former, the only option is to fuck it. the truth is useless if all it does is produce fear. and all that stuff. dan said last night: cliché things are cliché for a reason. how true. if I learned anything in college it’s this, and some other things maybe, but that’s for another post, and I still have one more semester to go. we were parked at the Plymouth beach at midnight last night, dan and me, talking about houseboats, grandmothers, having love to give. i thought, I want to live on a houseboat. this is still true tonight. I want to live someday where I can always hear the lazy slapping of the shore. he said his grandfather had a big sailboat with four beds below the deck, and on the fourth of july they’d take it out and watch the fireworks overhead, sleep on the bobbing boat, wake up early and go fishing. this is the goal.
we were eating sandwiches, I’m sure, jackie’s without mayonnaise and mine with, when we saw a single engine Cessna approaching the coast, low, it was so low we immediately sat up in our seats, alarmed. it wasn’t going to clear the houses, the tower, there was no way, it was heading straight for them. we gasped in horror at the crucial moment. we heard nothing, saw nothing, the plane never reappeared anywhere at all, not over the houses, in the houses, or back out over the sea. but there had been nowhere else for it to go. we discussed the event at length for weeks. we don’t know what happened to the small ghost plane.
that was one day a couple years back. the day I’m talking about now is a different day, a day a couple days ago, a day when the summer folks were warming up once more to the ocean. here’s the scene: I’m wearing a one piece my mom wore in the early nineties. the legs are cut too high up, like the red bathing suits on Baywatch. there’s a loud flower pattern all over my body, gripping every weird angle. jackie’s wearing a green and white bikini, we’re on the old beach, and no one’s in the water. it’s only may. two guys walk by. they say: “dick tease.” we briefly probe into the likelihood of the phrase “vagina tease” being used (by females) in a similar context, decide against it, I’m not sure why.
down to the shore. the water is cold, as cold as I remember it being as a child. Jackie says we can’t do it, but I know we did, we can. I work myself up and go under, a million pins jolting me, electrifying molecules, I think about the BP oil spill, touching this water somewhere somehow, I feel incredible. we go back to jackie’s new apartment and I swivel in her new swivel chair, eat a whole cheese pizza while the grease from the cheese seeps through the thin box and discreetly touches the freckles on my thighs.
I’m driving home in mom’s car. not even a tape deck, just the radio. I haven’t heard the radio in years and years. relentless disappointment or bewilderment (kesha?) until ace of base comes on, and I can sing to this, word for word, j- and I used to press play at the same time through our bedroom windows, second floor, adjacent but not perfectly, always a small delay but we strove for excellence anyway, two radios attempting to coo the flawless alignment of “she leads a lonely life /oooh / she leads a lonely life!,” those being the good old days. which reminds me, I had dinner with my dad a couple months ago. I love to hear him talk about what he feels were the good old days, and we bridge the gap between his good old days and mine when he quotes Carly Simon: these are the good old days, he reminds me, this one before us, with our bright salads before us, 2010, and I agree. still has flashbacks from an acid trip he had when he was 17. when I see him stoic, stern, conservative to his very core, I like to summon the image of him with long hair, the world around him feigning a superior paisley skin, and now revisiting him slyly between consciousnesses in the twenty-first century. I wonder how different I’ll be, how stoic, when I’m older. I wonder if my worst drug experience will be dormant but stirring still, I wonder if the thought of it will still make me curl into a ball, wonder if I’ll remember the poem I wrote about it that I posted on a “serious” poetry forum, little to no feedback.
when I get back from the beach/jackie’s, this happens later in the day, roughly:
“whatcha reading?”
“bukowski.”
“blue husky?”
“yes.”
“I saw the grossest thing today, at betty’s. there was cat shit all over her floor, and her dog just came over and ate it. then there was a little bit left, and betty came over, took it up in a paper towel and just put it on her kitchen counter. I tell ya, if I was an easy barfer, I woulda barfed all over the place, it was just disgusting.”
“yeah? that’s pretty gross.”
“yeah. disgusting. did you make a therapy appointment yet?”
“I tried. they were having some problem with my insurance. some kind of bureaucratic nightmare.”
“it always is.”
“yeah. did I show you the graduation photos?”
“no. I hope I’m not in any of them.”
“check them out.”
“there better be none of me.”
“there’s only one. here it is.”
“oh. oh, no. I look like a rock and roller. I look like fucking ozzy osbourne.”
and then something about a pinched nerve in her back being like a toothache from her ass to her knee; I’ll remember that one. I check facebook, which alerts me to a friend liking Gullah Gullah island. me too; fond memories of a giant yellow frog dancing with children in a yard, and of course the jubilant theme song. I click: “Like” and suddenly I’ve joined the Gullah Gullah island group, a commitment I’m not ready to make, I thought I was just liking the fact that she liked it, wonder briefly if facebook will ever allow me to like the fact that someone else likes a fact, and so on and so forth. tomorrow is the final appointment in boston where we talk about my kidneys and whatnot, their failing, and everyone wants to know: “are you scared?” and when I tell them yes, they tell me I shouldn’t be quite so scared, so I stopped saying “yes,” and when I say “no,” they recommend that I anticipate it at least a little bit so as to prevent the sudden onset of a harsh reality, etc. so, I’ve become kind of indifferent, consistently. at first it was a “fuck you” indifference, but now it’s just true indifference. as far as I’m concerned, one day at the end of june I’ll be living like any other 23 year old in the middle of nowhere, dutifully wiping the pollen from my cat’s yellow spongy nose with a damp facecloth even though I think it is really quite precious, and the next day I’ll wake up with a morphine IV, a new organ, a freshly annihilated immune system, some red jello.
so, we go into boston the next morning, my dad and me, meet with the nutritionist, pharmacist, social worker, phlebotomist, transplant surgeon, transplant coordinator, I mention to my dad that I’m interested in phlebotomy, the delicate art of probing crooks of arms with butterfly needles and otherwise. nutritionist reiterates high protein low sodium diet, I’m not eating enough, transplant surgeon says I should feel much worse than I actually do, it’s kind of miraculous. I’m asking him questions about plasmapheresis and outpatient treatment (can I go back to western mass? please?) when he interrupts me and says “what did you major in?” with a knowing smile, like he knows suddenly that I’m an English major, probably because I ask what I will require instead of what I will need, I tell him I like wordsworth even though people think he takes himself too seriously (he might) and he likes wordsworth too. he says I will experience a sudden mental clarity after the transplant. neurotoxicity. the blood becomes so dirty it affects your ability to focus, think, which would explain why I sought out ADHD medication last semester (never got it) and was often content to be completely inactive, mentally and physically, hard to go to work, hard to wake up, hard to do schoolwork and hard to be with people. my surgeon says I am accustomed to this lethargy, so I’ve ceased to experience it as something abnormal. it’s become normal, the only way of being that I know, and so I’ll feel good in ways I don’t even know are possible. I feel like this a present of sorts, like the rush you used to get from opening a Christmas present. I anticipate this rush, this wanting to do things or finish things, being able to. pretty neat. for the first time in this whole process I feel like I have something to gain, after all the intense anxiety over immunosuppression, reduced life expectancy, cancer. I don’t care anymore, mostly because I simply can’t. truth isn’t always the best thing to focus on if it negatively affects how you live your life. I’ve always been obsessed with truth, whatever that means, and now I’m learning that the pursuit of life is greater than the pursuit of truth (they aren’t necessarily synonymous), and insofar as the latter interferes with the former, the only option is to fuck it. the truth is useless if all it does is produce fear. and all that stuff. dan said last night: cliché things are cliché for a reason. how true. if I learned anything in college it’s this, and some other things maybe, but that’s for another post, and I still have one more semester to go. we were parked at the Plymouth beach at midnight last night, dan and me, talking about houseboats, grandmothers, having love to give. i thought, I want to live on a houseboat. this is still true tonight. I want to live someday where I can always hear the lazy slapping of the shore. he said his grandfather had a big sailboat with four beds below the deck, and on the fourth of july they’d take it out and watch the fireworks overhead, sleep on the bobbing boat, wake up early and go fishing. this is the goal.
Sunday, May 23, 2010
suddenly, the world is my oyster
so i joined okcupid earlier this month at the suggestion of my roommate and BFF, ashley. i figured i'd be able to meet some cool local people, but i'm not very serious about it now, especially after receiving a message from a 45 year old married lawyer who is clearly going through a midlife crisis wants to be my "sugar daddy." also, messages from a very pretentious man who "can't tolerate people who don't exercise."
i got this email from okcupid today. please note the subject of the email.
on another note, i can't stop watching this video:
i got this email from okcupid today. please note the subject of the email.
on another note, i can't stop watching this video:
Saturday, May 22, 2010
first post: HI
hello!
this is a blog that i am using to help get me through the summer. what i mean by this is that i'm living at my family home for the first time in five years, basically in the middle of nowhere, at least 2 and a half hours from most (not all) of my friends (but even the ones that are close are 30 minutes away). life is currently weird and somewhat lonely, and i need a place to write about things i'm interested in, write about things that i observe, write about anything, since i'm relatively alone and far from my friends. also, i can't work, because i'm getting a kidney transplant at the end of june, and plasmapheresis before and after the transplant. it's not something that most people can relate to/want to talk about as much as i do, understandably, so i figure this is the best place i can vent about it and whatnot.
i hope to make the best of the summer despite these things. i hope to do this by having a piano in my room, and by having at least one of the four available cats on or near the piano at most times. i'm getting the piano from craigslist. a regular old upright. it's incredible how many people are looking to get rid of perfectly good pianos that just need to be tuned. i also hope to make the best of the summer by having a netflix account, and by listening to music, and by reading new books, and by jumping on the giant trampoline my little brother and his friends have transplanted into the woods behind my house, and by walking through these woods. i'm reading bukowski right now, tales of ordinary madness. i like bukowski a lot, aside from his almost incessant degradation of women and his obsession with the word "rape." aside from this, he's pretty funny. if you have any book/music suggestions, please, by all means, suggest away! until next time.
this is a blog that i am using to help get me through the summer. what i mean by this is that i'm living at my family home for the first time in five years, basically in the middle of nowhere, at least 2 and a half hours from most (not all) of my friends (but even the ones that are close are 30 minutes away). life is currently weird and somewhat lonely, and i need a place to write about things i'm interested in, write about things that i observe, write about anything, since i'm relatively alone and far from my friends. also, i can't work, because i'm getting a kidney transplant at the end of june, and plasmapheresis before and after the transplant. it's not something that most people can relate to/want to talk about as much as i do, understandably, so i figure this is the best place i can vent about it and whatnot.
i hope to make the best of the summer despite these things. i hope to do this by having a piano in my room, and by having at least one of the four available cats on or near the piano at most times. i'm getting the piano from craigslist. a regular old upright. it's incredible how many people are looking to get rid of perfectly good pianos that just need to be tuned. i also hope to make the best of the summer by having a netflix account, and by listening to music, and by reading new books, and by jumping on the giant trampoline my little brother and his friends have transplanted into the woods behind my house, and by walking through these woods. i'm reading bukowski right now, tales of ordinary madness. i like bukowski a lot, aside from his almost incessant degradation of women and his obsession with the word "rape." aside from this, he's pretty funny. if you have any book/music suggestions, please, by all means, suggest away! until next time.
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