Tableaux vivants,
living paintings, were planned for a winter gala at the Fogg Museum. I was part of a Monet painting and had to wear a pink gown with a plunging neckline. The tube showed. I pulled the bodice up. The top of the bandage still showed. A square of gauze and a frightening bump. I let it show. One girl saw it backstage and turned white and said my name as if she felt she had to.
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The way someone says your name when you're making love and you know it's the only time you'll ever make love, and you aren't thinking about your partner's name, and you wish he hadn't said yours.
Except for the very richest and a few others, Harvard upperclassmen live in one of twelve residential houses.
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When a large group of homosexuals from my class were assigned to live in a historically preppy house, it was decided that the group would attend the notoriously conservative Eliot House Spring Fête in drag. A friend to the downtrodden, I had to find a tuxedo to wear.
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Through a network of teenaged idealists, a tuxedo appeared. It belonged to a classmate whose family's roots predated the American Revolution and who had attended an excellent private school in New York.
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The jacket was navy blue and double-breasted and had gold buttons, and it had belonged to my classmate's uncle, an admiral.
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Though a few times that year I smoked marijuana with a clique of elite private school alums, in their dorm rooms that were nothing like mineâI remember a freestanding antique silver ashtray, and I remember some of the richest students had had
their suite condemned for its filthâI knew our lives were already irreconcilable and that I would only ever be a tourist in theirs. And because I knew I was a tourist, I quietly gathered my small knowledge of the natives' ways and left scant trace of myself.
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The lending of the tuxedo was a gesture of superb faith that weâthe awake and living of the class of 1996, whether we had come from privilege or notâwere, at least for a moment, of one voice. The lending of the tuxedo was a favor by a stranger, an intimate gesture made to benefit the general welfare of homosexuals.
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Three years later, my suitemate, who had both kinds of friends, from both private and public schools, asked me whether I would be willing to help the admiral's nephew.
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The nephew had enrolled in a video-making course, and his assignment was to make an edited movie of a process that involved the body. My suitemate had already watched me flush and dress my line by then, and she knew a picture of that would make a better movie than a picture of someone shaving his head, or putting on or removing clothing.
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I don't like it when we refer to anything other than a corpse as
the body
.
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But when my suitemate asked me if I would permit the admiral's nephew to videotape me flushing and dressing my line, I said yes.
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While I had my central line I wore athletic bras because they were the only ones that didn't squeeze the wound site, and it
was easy just to shrug out of one side of the bra before making the sterile field and changing the dressing.
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I was less concerned that a handsome rich boy was going to see part of my right breast than I was ashamed he would see the hump of fat on my pimply shoulders and think I was a girl who not only had gone to public school but who had acne and was fat.
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I wanted to tell him that the steroids had given me the acne. The steroids had made me fat. And the steroids had made me go to public school.
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But in the end I just told him I had a rash on my shoulders and that it was from the medicine I had to take. He asked me if I'd like my face omitted from the final edit, and I said yes.
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He gave me a copy of the tape but I've never watched it.
After I began to understand the difference between public and private schools, and after I knew about the social register, and after I determined that class is determined not by schools or money but by family, and in spite of understanding that nothing I could do would ever deliver me from the middle class, I wanted to join the Signet Society, a social club for Harvard students that wasn't officially affiliated with Harvard and had a separate endowment and a private clubhouse.
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It was a practice club for the exclusive Boston and New York social clubs the men and some of the women would join after graduation.
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I came from a public school with GED tutors and auto shop, but I was elected to the Signet Society, and for my initiation, instead of shimmying up the pillar drunk while the officers held it at its wooden base, they laid the pillar on the ground and I stepped over it with my cane.
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I wore a lavender gown and a twenty-inch tube that never clogged as long as blood thinner was shot into it every two
days. From one direction it went into my right breast, under the collarbone and straight up, just under the skin, then into my jugular, so that halfway up my neck you couldn't see the shape of it anymore, and then it went into my subclavian vein and reached toward my heart. On the outside it hung like two white drinking straws, six inches long, with one red clamp and one blue one, like a piece of jewelry, and it was nothing like the expensive pendants the other Signet girls wore.
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All spring I sat in my wooden chair like the others, and when it was my turn to ladle the soup at lunch I stood up proudly on my legs and did it. One girl wore a gold pendant shaped like a whale's tail. Her parents kept a summer house on Nantucket. I was proud to be as good as she was.
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I already knew I could syringe the blood out of the tube in my chest and pick off the scabs where the tube went into me, and lie still while the doctors took fluid from my spine, or pierced my muscles with electrodes and turned on the juice, and for a long time I would not admit those things had been anything but an interruption in what seemed my life's larger project, which was to infiltrate the upper class and to be as good as those rich girls, and not once in the next ten years did I consider that the project of my life was not to wonder that I could pick up a ladle at that exclusive table, but that I could pick up a ladle at all.
Before the diagnosis I had had intercourse with only one person, the man I call
my college boyfriend.
Which sounds as if we loved each other all through college, but we didn't. We slept together for eleven weeks, and then he broke up with me.
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I was very sad, but I enrolled in five classes the next semester and made a list of goals including
run at least twice a week and avoid all time-wasting social engagements.
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Two months into the semester, I got sick. And for a long time, I regretted I might die having had intercourse with only one person.
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Like many freethinking college students, I thought intercourse was the greatest thing in life. And it just about killed me to hear of everyone's rambunctious affairs while I was in the hospital.
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So when a medical student came into my room alone, after his rounds were over, with a book to lend or a mix tape he'd recorded, I thought about which medical students I'd invite to
have intercourse with me if I got to the end of the road there, in the hospital.
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But I went back to college still sick, with my central line, not having had intercourse with any medical students, and every month or so I went back to the hospital to sit in the Oncology Outpatient ward to have my plasma replaced or to have a bag of gamma infused. And the only people there were the hem-onc nurses, who were women.
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My line was implanted in June 1995, and in May 1996, after eleven and a half months, it was pulled.
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I wasn't well yetâI was taking steroids and gamma globulin. But those treatments kept me healthier than plasma replacement had. Those treatments actually slowed down the rate at which my immune system secreted the poisonous antibodies.
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I would still relapse, but it was clear that the steroids and the gamma would keep me at least as well as apheresis would, so it was decided I wouldn't have my plasma replaced again. The gamma from March had already lasted three months. My neurologist believed I'd turned a corner.
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I believed, though, that I would stop secreting antibodies forever only after I had intercourse. And though I looked worse than I ever had in my lifeâthanks to the steroids I was fat and swollen, covered in acne, and had a gruesomely round faceâI knew I would have to go through the humiliation of finding a man who would agree to have intercourse with me.
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I thought my friend Victor, who was legendarily promiscuous and who had shown interest in me shortly after my college boyfriend dumped me, might still be interested.
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So I called him and invited him to have a drink with me that night. We had our drink and walked back to our dorm and sat down in the courtyard, just talking.
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It was two days before Commencement. Early June. He was graduating, and I was graduating, too, sort of, but the envelope I was getting wouldn't have a diploma in it. It would be empty, because I had another semester of classwork to complete.
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Since it was two days before Commencement, only the seniors were left at school, and everyone was awake, and most of them were in the courtyard with us. It was a party that had been going on all week.
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And so I felt exposedâI felt too shy to seduce Victor in front of the entire senior class of Dunster House, even though I knew no one would notice or care.
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Finally, Victor said,
Your place?
getting up from the bench we'd been sitting on.
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And we went to my dorm room, which was a single suite I had all to myself, with my own living room and my own bathroom, because my neurologist had written a note to the university explaining I needed my space.
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And we sat on my futon, taking turns drinking out of a plastic bottle of cheap vodka.
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I was still unable to put the plan into motion.
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Eventually Victor said,
Do you have any other rooms in this places
and walked me to the bedroom, and lay me on my bed, and had intercourse with me.
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Then he asked me about the scabs on my chest from where the line had just been pulled out of me, and listened to the things I told him, and held me very tightly.
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Two mornings later, when we were in the courtyard again, seated in rows, about to receive our diplomas, he was wearing a buttoned shirt and sweating, because his neck was covered with bright red marks.
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Almost seven years passed. Victor and I wrote every day. I lived in New York and he lived in Chicago.
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He told me some of his secrets, and I told him some of mine.
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Our letters were intimate, but I didn't get around to explaining to him that I'd recovered from my disease only because he had selflessly had intercourse with an ugly version of a girl he'd once had a crush on.
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A little less than seven years after I was cured of my disease through the mystical power of intercourse, Victor had an aneurysm and died.
I remember three things about the gamma globulin infusions.
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The first is that when I was in Emergency for the fourth or fifth time, and my breathing had become shallow enough for Triage Level 1, and I needed another central line implanted right then, I begged for gamma instead of apheresis.
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But my blood was already too poisonous to leave as it was, and the doctors said they had to replace my plasma in order to remove the antibodies that were there already, or I might stop breathing.
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So even though I was sobbing and begging not to be implanted with another line, I knew it would be implanted. I was too agitated to have the surgery right at that moment, so it was decided I'd be given a half milligram of lorazepam, which is what I was given when I had a panic attack.
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Because of an administrative error, I was given four times the amount of lorazepam I was usually given. And I knew it. They gave me four pills instead of the usual one, and I didn't say
anything. I was hoping I would pass out, but I didn't. Not quite. I was sedated just enough. The regular dose wouldn't have worked.
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The second thing I remember about gamma is that during a later hospitalization, I was hooked up to a small pump, much smaller than the almost car-sized machine used for plasma exchange. At last we would see whether gamma would work.
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It didn't do a thing except slur my speech for a few hours. And so for months afterward I continued with my tedious rounds of plasma replacement to clean up the poison that I still, despite the gamma infusion, continued to secrete into my blood.
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And the third thing is that in March 1996, I had another infusion, of a much higher concentration than the first two, and received the infusion while lying in a meditative state in the Outpatient Oncology ward, and felt fine, maybe a little tired, and was driven home, and by the time I got into bed my head hurt so much I vomited. And I was sick for the next couple of days, too sick to think about the gamma.
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But after that week was over, the tingling and numbness in my limbs wasn't any worse than it had been before the infusion, because the gamma had worked. Sort of. It didn't cure me, but I didn't relapse for four months.
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The way I see it, gamma gave me three months, and Victor gave me one more after that and then some.
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I didn't tell my doctors about Victor.