The Two Kinds of Decay Read online

  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.

  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.

  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.

  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.

  My line was implanted in June 1995, and in May 1996, after eleven and a half months, it was pulled.

  I wasn’t well yet—I 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.

  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.

  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 life—thanks to the steroids I was fat and swollen, covered in acne, and had a gruesomely round face—I knew I would have to go through the humiliation of finding a man who would agree to have intercourse with me.

  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.

  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.

  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.

  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.

  And so I felt exposed—I 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.

  Finally, Victor said, Your place? getting up from the bench we’d been sitting on.

  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.

  And we sat on my futon, taking turns drinking out of a plastic bottle of cheap vodka.

  I was still unable to put the plan into motion.

  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.

  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.

  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.

  Almost seven years passed. Victor and I wrote every day. I lived in New York and he lived in Chicago.

  He told me some of his secrets, and I told him some of mine.

  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.

  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.

  Cured

  I remember three things about the gamma globulin infusions.

  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.

  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.

  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.

  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.

  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.

  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.

  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.

  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.

  The way I see it, gamma gave me three months, and Victor gave me one more after that and then some.

  I didn’t tell my doctors about Victor.

  The Dump

  After my third gamma infusion, my mother and I drove to the town dump on a weekday. Our town dump was not so much a dump as a futuristic recycling station with three kinds of glass, six kinds of plastic, two kinds of paper, compost and mulch and firewood, a book swap, and a section labeled Recycle, which was where you could get a pretty good pair of skis and where my parents got most of the furniture on the first floor of our house, including an antique Shaker chair.

  My mother and I brought three of my canes there, and two walkers, including the one with the racing stripes.

  And that day we ran into a neighbor, which was not uncommon. People went to the dump weekly, at least, to take a treasure hunt through Recycle. There were stage lights there that day, and I wanted to bring them home. Maybe because they were the heaviest things I saw there, and I wanted to see if I could lift them.

  Our neighbor told us her mother had died just that week and that she was at the dump with some of the things from her mother’s apartment. Alzheimer’s, she whispered.

  And my mother told our neighbor we were sorry, and that her mother, my grandmother, had had Alzheimer’s, too.

  Then the neighbor saw the pile of canes and walkers we’d just left on the ground, and looked at my mother, and indicated she understood how sad it was that my mother’s mother had used those things until she couldn’t walk anymore.

  How sure our neighbor was that her suffering was the only kind of sufferin
g.

  And how sure I was that mine was worse.

  1996

  At some point after the year 2000, I read my journal from beginning to end and saw I had recorded nothing of consequence in 1996 and threw away that year in disgust.

  So I don’t know what happened between my fake graduation and my real graduation.

  I remember feeling bereft that my class had graduated without me. One of my suitemates moved to Romania, the other to Borneo. Everyone’s life seemed better than my life.

  In the class picture, shot in June on the steps of Widener Library with a rolling camera, for which at least a thousand of us were present, I stand between two handsome friends, one of whom later worked as a catalog model. In the photo my face is absolutely round. It is one of only a few photographs I allowed anyone to take of my steroid-poisoned body.

  In the fall of 1996 I enrolled in my final semester of college. I was in love with someone I’d met in New York and rode the Greyhound bus from Boston to New York and back at odd times. Once I took an early bus back from New York on a Tuesday morning and made it to my Tuesday afternoon poetry class on time.

  After college I moved to New York and lived in the obligatory small apartments full of friends and friends of friends, knowing I’d be leaving in six months for graduate school. I had the usual adventures people have when they move to New York.

  Calendars

  My mother keeps her monthly desk calendars. They’re compact: one month per page, one square per day, two inches by two inches. Once in the 1980s I saw her take down a few from the 1970s, from her closet shelf, and look through them.

  I called her today, in 2006, to ask if she’d send me her calendars from 1995 and 1996, but she’s thrown all the old calendars away. Last month she did it.

  Why should I save them? I’m never going to be famous! she said.

  Secrets

  One day in 1997 I was at Mars Bar, on the Lower East Side, with the man I was having an affair with. The man had a girlfriend. We played chess at the Thompson Street chess store and went out to dinner and made out in cabs. I was twenty-three and had everything I wanted.

  I was still taking steroids, but my excitement at having got well enough in two years to graduate college and move to New York had made me furiously happy.

  I was an intern at a magazine, second shift, three or four nights a week. Afterward I’d go to Pravda with the man I was having an affair with, and we’d drink chocolate martinis, which were a fashionable drink that spring.

  So one day we were at Mars Bar with a friend of the man I was having an affair with.

  The friend seemed manic. He was funny and verbal. We all took turns telling our best drug stories.

  Then the friend of the man I was having an affair with said, The best drug I have ever taken was steroids.

  And I said, Me too! Do you have MS? I knew that multiple sclerosis and its sister diseases, like mine, were commonly treated with high-dose corticosteroids.

  The bar was very loud. The man I was having an affair with didn’t hear. By then a few more people we knew had shown up.

  The friend of the man opened his eyes wide and said No! but didn’t mean it. I took him aside and apologized, but I wasn’t surprised when he began to weep. He said, I’ve never been able to tell anybody that, and I hugged him.

  His tears seemed fake, though, and I wasn’t surprised when he became an actor.

  Iowa City

  In August 1997 I moved to Iowa City to go to graduate school. I brought a letter from my hematologist noting the concentration and rate of the gamma globulin infusion I’d need if the disease relapsed again.

  I loved Iowa City. It was small enough that I was able to know it thoroughly.

  I didn’t bring a car. I didn’t like driving. I’d loved living in New York and walking everywhere.

  And so even though Iowa City wasn’t as pedestrian-convenient as New York, I walked everywhere.

  I walked all the way up Gilbert Street to the Asian grocery store where I could get Korean noodle bowls. The kind I liked was called I’m Hot.

  I liked cooking the oily noodles, draining them and mixing them with a can of tuna, then tossing everything with the contents of the spice packet and a couple of tablespoons of water.

  I went to the Korean grocery every two weeks.

  On maybe my fifth trip to the grocery, I noticed a small building just past it, on Gilbert.

  It was a plasma donation center!

  The rates for plasma donation were posted in the window. I think it paid $45 per liter.

  One day a woman in my graduate program told me that she donated plasma twice a month, which was as often as they’d allow it. And I remember how excited I felt, the moment before I told her how much plasma I’d used, plasma that had been gathered at donation centers like the one on Gilbert.

  Before and After

  When I turned twenty-two I thought my life, which had already been relatively easy, would get even easier, since at twenty-one, I’d already done the hardest thing I’d ever have to do.

  The only hard thing I’d ever done had not left me compassionate.

  I remember the first friend I made who met me after the diagnosis, but I don’t remember when I stopped thinking, when I met new people, This person, whose hand I am shaking at this moment, is another person who never knew me before the diagnosis.

  The only hard thing I’d done in my life was recovering from a disease. My self-image had been highly susceptible to that event. It constituted most of my identity.

  When a friend or a stranger mentioned anything about a difficult or noteworthy event, I chose one of countless hospital vignettes from recent memory and told the little story in a way that prevented further conversation about it or any other subject.

  Though during the bad relapses I knew I was a better person temporarily, in general the disease made me furious, jealous, resentful, impatient, temperamental, spiteful. My sense of entitlement grew enormous. I knew the steroids had triggered what is now called a mood disorder, and I didn’t care.

  The hardest thing I’d ever done, the hardest thing I’d ever have to do, had made me a worse person! That wasn’t how it was supposed to work. Tribulation is supposed to make strong people, people who radiate mercy, leaders of their kind.

  I’d have to do harder things before my self-regard lost the mean air that had inflated it.

  The Price

  Prednisone’s long-term side effects include depression and mania, weakness and fatigue, blurred vision, abdominal pain, infections, painful hips and shoulders, porous bones, acne, insomnia, weight gain, stretch marks, facial swelling, and nervousness. There are others. Those are just the ones I have.

  Textbooks refer to the side effects as premature aging of the body.

  The sore spots below my cheekbones make it hard to lie down without a soft pillow. I can’t lie on my side on a flat surface. I lie on my belly and rest my skull on the tip of my nose and lift my head for periodic breaks.

  When I hold a long melismatic vowel, my facial muscles tire. That is, if I sing Ahhhh for a few seconds, all the little muscles around my mouth start to twitch.

  I gobble calcium supplements to keep my osteopenia from turning into osteoporosis, but someday it will. I’ll break a hip and it won’t heal, and I’ll become bedridden and develop pneumonia and suffocate.

  In San Francisco I met a man who was missing a big chunk of his jaw. The conversation turned to a certain type of hospital visitor. Have you considered herbal remedies? this visitor asks. Both the man and I had entertained this visitor.