The worst hour was the hour between the moment of deciding I should be taken to Emergency and the moment I got in the car.
I used that hour to call the bookstore manager, my thesis adviser, my physical therapist, the home nursing coordinator, and anyone else I’d made plans with before admitting to myself I wasn’t going to stay out of the hospital—not this time.
I could have gone to the hospital without making any phone calls—everyone would have understood—but I preferred pretending I had chosen to quit everything. Chosen to get sick again. That it was all part of my plan.
I lied into the telephone receiver as I sat in a wooden kitchen chair, my aluminum walker leaning on the table next to me.
I’d covered the plastic grips of the walker with bright green pressure gauze and, over the gauze, a thin stripe of black electrical tape. Racing stripes.
Attention
My three temporary central lines had been precarious and depended on my staying in bed, supine, because if I moved too much, they would fall out and I would bleed. They went in pretty close to my heart, so I wouldn’t bleed long.
After my permanent line was implanted, I could go to the hospital for treatments without having to stay the night.
Along with plasma replacement, I was now trying a treatment that a new study had shown to be more effective: a massive infusion of gamma globulin, a molecular component of the immune system.
The study showed that gamma globulin seemed to make the immune system stop forming rogue antibodies.
Each of my gamma infusions was less than a quart of liquid, but the infusion of that quart lasted from eight to twelve hours because the human body cannot take concentrated infusions of that particular protein any faster.
A liquid flowed from a machine into my heart. The mechanism was very simple.
After the first infusion, the insurance company sent the bill to my father by mistake. The infusion cost the insurance company thirty-five thousand dollars.
Eight or ten times during the infusion I walked myself carefully to the bathroom, dragging the machine and the bag and the tubing, the end of which was sewn to the outside of my body.
And I walked back again, to the blue reclining lounge chair in the small room.
Sometimes another person was there. We all wore appliances in our chests. The tubes were sewn to us and connected to the tubes of the machines that moved the liquids into us.
Before then, if I had to ride a train for half an hour or stand in a line at a shop for five minutes, I picked something up, or turned to someone, or ingested something, so the time would be filled with what I picked up or took in.
And also since then—but maybe not quite so much.
I say “the time would be filled,” but the time was not so much filled as overfilled.
The time was already full before I put the new thing in. I overfilled my time, I think, to hide what was already there.
Some things are so horrible they need to be hidden right after they become visible. They are too horrible to be seen except very slowly, or in very small amounts. Or they are too beautiful.
There was a television set above my chair that received fifteen or twenty channels.
Here is a logical sequence of things to do in that small room. You arrive. You sit in the chair. You unbutton your shirt or take it off and put on a hospital gown that opens near your heart. You take the tubes in your hand and give them to the nurse. The nurse connects your tubes to the tubes of a machine that some fluid has been put into. The pump is turned on. You button your shirt around the tubes as best you can. You arrange yourself in a blue reclining chair. You press the button on the control that lights the television screen. You press it again until the screen changes to an agreeable picture. And you watch it. You get up and go to the toilet once every hour or two, pushing the pump on its casters. Once or twice, food arrives, and you eat. But mostly you read a book you have brought, or if you have not brought one, you watch the television, or you sleep.
After the first long infusion I felt different. Of course. The medicine was new. The experience was new. I was still in my first year of Latin, used to thinking hard before the meaning came. My parents came into the room to wheel me outside to their car and take me home. And they asked me what I had read and what I had watched on the television.
I had lain there in the reclining chair for ten hours, but I hadn’t read anything or watched the television.
I was going to say I had lain there for ten hours, waiting. But I hadn’t been waiting. I hadn’t been anticipating the next moment. I think it was the first time in my life, which had lasted twenty-one years so far, that I hadn’t done that.
I didn’t know it at the time, but I was paying attention. I was not hoping I would learn how to do it, or despairing that I might not learn how to do it. I was unaware that I was learning or practicing or doing anything.
I was unaware I was doing anything except nothing.
Intimacy
One day in Oncology Outpatient, I sat with a woman who was having a bag of blood transfused. She beat me diseasewise—she had cancer—but I beat her linewise, because she had a slim little Hickman and I had my double-lumen monster.
She showed me her bald head under her brown wig and said she liked to shampoo the wig in the shower as if it were her hair.
Her husband had planned to buy her a mink coat on the occasion of their twenty-fifth wedding anniversary, but when she got cancer, she got the coat. She called it her cancer coat. It was dark and glossy, like her wig.
And she shared that she had lost her hair four times and been in many kinds of pain, but she agreed with me that the worst part about being sick was not having enough energy to feel powerful and fast. Not enough energy to run away.
After we’d been talking for an hour or two, the woman asked me what my name was. I was glad I hadn’t suggested it first. We were ready to do it now.
Her name was Barbara.
Supplies
In December, eight months after the diagnosis, I decided I’d learn how to flush and dress my line. I still needed it. I was on my sixth month of periodic plasma exchange.
So I looked at the entry site with the bandage off, for just a moment, and that was enough progress for a few days.
But I got better at looking at the site, and my visiting nurse made me a booklet of three-by-five cards, tied together by a white string in the top left corner, that explained in steps how to flush and dress the catheter.
Even if I learned how to do it, my nurse would still have to visit me at school each week and look at the line, just to make sure nothing was wrong that I hadn’t noticed.
I was as excited about learning how to care for my central line as my nurse was about visiting me at Harvard.
On my Nursing Visit Summary from December 21, 1995, Fran wrote:
Pt uses excellent sterile technique for flushing line. She also uses excellent technique for dsg Δ. Has some difficulties c applying Tegaderm. Pt continues to feel stronger. One or two more f/u + pt should be independent c care. Next visit 12/23/95.
On December 23, a different nurse wrote:
This visit to f/u apheresis care. Pt performs flushing + dsg Δ s error. She is very meticulous. Can be independent c dsg Δ.
I’d go back to school with enough medical supplies so I could care for my line whenever I needed to. This is what I brought:
1 large red biohazard container; 10 cc syringes; 5 cc syringes; 3 cc syringes; saline vials; heparin vials, vial spikes; needle covers; interlink caps; injection caps; adhesive patches in three sizes; gauze pads; nonsterile rubber gloves; individually wrapped “sterile field” kits, each of which included 1 sterile waterproof paper sheet, 1 pair sterile gloves, 1 sterile surgical mask, sterile gauze patches, alcohol swabs, iodine swabs, adhesive compound swabs, 1 roll sterile plastic surgical tape.
I’d meet each week with my nurse and three times a month with a representative from the company that delivered my medical supplies and fetched my
biohazard container when it was full. It was a lot to do in addition to my treatment schedule and my classes, especially since I was feeble and couldn’t walk far.
Every couple of days I made a sterile field on my college desk in Dunster J-22 and flushed and dressed my line. Once my two suitemates, who are still my friends, sat on my bed and watched me do it. They watched and asked questions and listened.
I saved most of the flip-off caps from the vials of saline, heparin, and other solutions I infused. Each vial of solution was covered by a sterile bladder that could be pierced by a needle that drew the solution into a syringe. And each sterile bladder was covered securely with a plastic disc, its lip covering the lip of the vial, and each disc was stamped with raised letters that spelled FLIP OFF, because you were meant to press under the lip of the disc with the top of a thumbnail until the disc flipped off onto the floor or some other nonsterile area, so that nothing touched the vial’s sterile bladder.
The FLIP OFF discs were chartreuse, pink, red, black, gray, white, or another color, depending on the solution in the vial.
I stuck the discs on my stereo and on every light switch in my suite. And I gave a lot of them to friends, who stuck them, with putty or with a small rolled-up piece of surgical tape, on their own light switches and on the switches of their electronic machines. Or in the middle of a wall.
I threw out at least a thousand discs. I wish I’d saved more of them. My old suitemates both still have a few.
Tableau Vivant
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.
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.
The Admiral’s Nephew
Except for the very richest and a few others, Harvard upperclassmen live in one of twelve residential houses.
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.
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.
The jacket was navy blue and double-breasted and had gold buttons, and it had belonged to my classmate’s uncle, an admiral.
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 mine—I remember a freestanding antique silver ashtray, and I remember some of the richest students had had their suite condemned for its filth—I 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.
The lending of the tuxedo was a gesture of superb faith that we—the awake and living of the class of 1996, whether we had come from privilege or not—were, 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.
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.
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.
I don’t like it when we refer to anything other than a corpse as the body.
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.
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.
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.
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.
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.
He gave me a copy of the tape but I’ve never watched it.
The Signet
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.
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.
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.
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.
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.
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.
More Medicine
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.
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.
The Two Kinds of Decay Page 7
