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!