I generally try to schedule appointments during lunch or right after work. I seem to have so many appointments with so many doctors that I fear I’ll use up all my sick time on regularly scheduled checkups. I also like to keep a little flexibility for those ubiquitous demos I just can’t stop myself from going to. And it would be nice to have an occasional vacation. I’m saving those days off from work for a rainy day, and I fear the extended weather forecast is ominous. If I hadn’t moved from that hellhole in Hell’s Kitchenette and done the yuppie co-op thing, I wouldn’t have to worry about time off at all: I’d probably be on disability. Edmund White himself, the reigning queen of gay literature, according to Time magazine, where he mysteriously grew to six feet (I’m sure I was mistaken, due to his bad posture), even asked me why I was still working and not just writing before some benefit where we were reading a few months ago. I don’t know. Fear of poverty, I guess. Maybe an element of mortal terror of the standard health care in the U.S. for the underprivileged.
I can schedule infusions at home, after work. That means three fewer days a month at the gym. Not that I’m compulsive or anything. The gym thing has sort of gone to hell this past year. Three times a week is a reasonable goal now.
As usual, I bring my anal-retentive self to the Hemasuction office five minutes early. There’s no way to go cross-town with public transportation. I have to rush through the jackhammer-filled streets of Manhattan on a balmy afternoon.
It’s April 21, Secretaries’ Day, which means the entire support staff is out for lunch indefinitely. My nutritional counselor ushers me into her office at twenty minutes past one. I’d be fine if I had eaten something since nine-thirty, because I’m slightly hypoglycemic. My friend Glenn Person always carried an apple in his backpack. But then, he was a triathlete who burned up to 4,000 calories a day. He died of AIDS back in 1987, half a year after completing the Ironman in Hawaii.
Nancy L. (R.N., M.S.) hands me an easy-to-read booklet about nutrition for people with HIV. It’s written in basic English. No Proustian memoirs here. Patiently, she goes over the information in the booklet, a health teacher giving a watered-down lecture with slides for the benefit of the slower members of the class. Surely she’s not addressing her concerns toward me? I’ll listen out of politeness. She seems to be talking to someone who’s already on death’s doorstep. I look around and realize it’s a class of one.
Am I deluding myself? Am I really sick? Is this stage fifteen of denial? Should I continue the ruse of working and working out? Why waste these last few remaining years, days, hours, in a heinous job, when I could be devoting all my time to writing? Perhaps because I seem to write only about AIDS, and that would make it that much worse, more present.
I lie about my general eating habits. Well, I stretch the truth. I pretend I have been following the American Association of Dietary Fiber and General Roughage’s Minimum Adult Daily Requirements religiously. I always eat a well-balanced combination from the seven food groups. I don’t eat more than two eggs a week. I have pork only on alternate Tuesdays. I go crazy for big, leafy vegetables. I chew on birch bark to aid digestion thrice daily. But I throw in some snacks just so it will sound plausible. An oatmeal cookie at four. A brownie before bed. And Nancy likes this, even more than my hypothetical well-balanced meals.
Instead of orange juice for breakfast, she suggests one of those nectars loaded with calories. Eat at McDonald‘s, she continues. Eat your favorite foods. Maybe put on five or ten extra pounds. It’s always better to have that margin of safety.
Make foods more caloric. Try Carnation Instant Breakfast. Add milk powder to beverages. Carry around a few granola bars. Use blue cheese or Russian dressing.
To my chagrin, I find that not only is sushi outlawed (I knew that: deadly toxo lurks in raw fish), but so is brie. Soft, runny cheeses are on the list of no-nos. Hysterical, that afternoon I call up my very best friend in the whole world, John Palmer Weir, Jr. “How can I be a card-carrying homo without brie?”
“There’s still quiche,” he points out. “We’ll always have quiche.”
“Thank God,” I say. “I thought it was Paris,” I mutter to myself.
“Check your weight once a week. Watch out for wasting syndrome,” warns Nancy. Sure. I’ll do my best to keep on the look-out. And I promise never again to get anxious or think of the word elephant.
Gamma globulin can take up to four hours; pentamidine can take up to two. I schedule my first two infusions for 5:30 P.M. on successive days one week after my nutritional counseling, which means I have to leave for work at precisely 8:30 A.M. because it takes exactly thirty minutes to walk to work, including a stop to pick up breakfast (poppy-seed bagel with butter, orange juice) and the newspapers
(The New York Times, New York Newsday).
I’m a little nervous. Binky will be there. He was on his way to Florida for a four-day vacation when he remembered that tomorrow was Davey’s first infusion and he decided to come back. I could have asked him, but asking is so difficult for me, because I have heard the word no too many times, for the silliest of favors. I asked him if he could take the day off when we moved, and he didn’t see why it was that important. “What do you need me for? We have movers.” Well, he was in a bad mood because he had to teach a masters’ class the day before the April 25 March on Washington and couldn’t fly to D.C. because everything was booked and he didn’t enjoy crowds in any event. So that Sunday he took off to Florida to visit some friends, who hadn’t returned his phone calls because they were still in D.C. I returned from D.C. to see a note on the table. Binky said he would be away for four days. I mentally adjusted my schedule. When the boyfriend’s away, the mice will play. I started planning a toga party for Tuesday, and a pool party in the Jacuzzi for Wednesday. Then I remembered I had infusions scheduled on both those nights. He called later that night and told me he was coming back on Monday.
Our latest knock-down drag-out concerned our housewarming. I know we should have discussed it before Binky was faced with the absurd image of my alphabetizing the ninety-five invitations on the floor. I invited everyone that I’ve fantasized not exchanging bodily fluids with in the past five years, and a few women, too. Binky wanted to invite only those he would feel comfortable donating ten pints of blood to if they were in a car wreck. We should have had separate parties: one for those who reside in Chelsea, another for ACT UP members, another for pseudonymous drag columnists (both were on Fire Island that Sunday, of course), another one for writers, and another one for HIV-POSITIVES.
Nurse Perry calls me at work, apologizing. He doesn’t want to disturb me on the job, but he’s running late today.
Perry comes rolling a steel IV holder down the hallway at ten minutes to six, with boxes and boxes of gifts and exciting new houseware products. Only this time it isn’t Hanover House, UPS, or International Male: It’s Hemasuction. It’s my lucky day! Seventy-five booklets filled with S&H green stamps, and I’m getting my own IV Should I name it Iman or Twiggy?
“This is yours to keep.” I’m so excited. “We try to respect your privacy. The neighbors, and all. We’ll only be wheeling it in once. Some people use a nail in the ceiling instead of the IV pole.” I figure that might cause a crimp in terms of mobility.
“Is it sturdy enough for a sling? I’m sorry, I guess I need two. Binky, would you mind signing up? You’ll get your free IV pole, too, and then we can experiment.” It’s too tall for the bathroom shelves. I have to stick it in the dark, deep recesses of the closet in the bedroom. Can one hang a chandelier from it? I guess it will be useful for Maypole dances and tetherball games.
My visceral reaction is the same a property owner would have after finding out that the city was planning on opening an outpatient methadone clinic next door. NIMBY: Not in My Backyard. I never wanted to have a PC in my apartment; they remind me too much of my loathsome nine-to-five job, which involves data-processing equipment. But after my boss was fired I bought one, assuming that I was next in line, or that I would valiantly quit in protest of his firing. That was more than five years ago. Now my apartment is suffused with pills, prescriptions, pharmaceuticals, and prophylactic devices, medical and otherwise. The mirrored bathroom cabinet is nearly bursting with salves, ointments, and drugs. It’s a good thing that Binky isn’t a hypochondriac. Mercifully, he has escaped the homosexual addiction to expensive skin- and hair-care products that so many are afflicted with. There just isn’t any room. If he were HIV-positive, perhaps we could share prescriptions as well as tank tops.
Perry gives me an allergy kit filled with decongestants, antiinflammatories, hydrocortisones, and steroids. The supplies come in a box with the Hemasuction insignia. Unfortunately for me, the insignia is on the top and the bottom of the box, so when I flatten it out for recycling, it shows no matter on which side I turn it. Instead of putting it in the compacter room on my floor, I stash it downstairs after midnight with the rest of the recyclables. Thank God for my housewares-supply shelves. I rhapsodize once more on the miles of tiles and endless storage space that Leonard, the former owner of this apartment, has bequeathed me. The infectious-waste container will be stored on the floor of the supply closet, in the back.
“Now, which one of you is David?” asks Perry.
“He is,” we say, pointing at each other.
Perry and Binky manage to pry me from the ceiling a good twenty minutes later. I leave claw marks in the paint.
Perry has a British accent. He may or may not be a repressed or closeted homosexual. He’s a bit stuffy; he seems to have mild vestiges of that class thing going on: the neighborhood deteriorating, the slightly stiff and superior poise, and all. But I feel no prick when he sticks me.
I look away as he sticks me. I don’t like the sight of blood, especially my own. I used to stare as my doctor took my blood, and watch it fill the tubes. “It’s quite warm, people don’t expect that,” he said as he handed me several tubes to drop off with the receptionist. I imagine it’s the image of an icy-cold test tube. Blood comes out bright crimson and then bleeds to wine-dark red. I avert my eyes. They remain averted for a long time. Finally, Binky can’t resist telling me in a sarcastic voice, “You can look now.”
Perry comes to the rescue. “You’re next.”
I want to be in the ads in
The New England Journal of Medicine
for trouble-free infusion: riding a horse, swimming, at the discotheque, even having my period. I want to be photographed by Annie Leibovitz dragging an IV pole with fluids behind me as I water-ski in the latest Gap wear. I live for publicity. But at the last moment I lose my nerve and tell Binky I’d rather he not take a photo for the album delineating my decline and fall: Davey’s First Infusion, smiling ever so bravely, fighting against tears, one arm held high in mock strength: For those of us who are about to infuse, we salute you.
During the infusion there are questions to answer, there is paperwork to sign. Perry is my personal flight attendant, armed with a mélange of items and busywork to keep me amused during the flight. I wait in vain for a first-class upgrade to a pump infusion, or at least for my complimentary soft drink and foil-wrapped peanuts.
I have one pathetic moment: dragging the IV behind me as I go to the bathroom. In that moment I feel like all my friends who’ve ever been in the hospital. Many never got out. I feel like my grandmother in the Jewish Home for the Aged.
I am left with a bruise on my right arm on the inside of my elbow. I’ll just say that my boyfriend and I are exploring our sexuality in new directions that involve electrical cables and bludgeons. I consider marking the sites of future infusions in a connect-the-dots motif so after six months I will have a serviceable tattoo or at least a minor constellation.
Perry warns me that I may be peeing a lot with all this extra fluid. I wake up the next morning with an erection, which, alas, dissipates after I urinate. I used to wake up almost always with an erection (preferably not my own). This hardly ever happens now.
Some people report a huge boost of energy after gamma globulin. With me, it is less a burst of energy than a lack of utter exhaustion. For the past few months I would drag myself home after work and desperately need to lie down for a half hour. I feel more as if I’ve stabilized to something close to normal—perhaps what I’ve been missing the past two years, without even realizing it. Okay, so I scrubbed the tiles in the bathroom for five hours—is that unusual? Perhaps for me, who finds a scrub brush as alien as a clitoris. I have been exclusively homosexual for the past thirty-six years, and am not about to break a perfect record.
The following night I get my first pentamidine infusion. It is over in an hour. Everything tastes a bit rank and metallic after the pentamidine, for a day or so.
I stuff my gym clothes and towel into the plastic bag with the Hemasuction logo and force myself to take it to the gym. I want to accept this next stage as soon as possible.
“Be prepared” is my motto. Which is why I rushed home after work—I didn’t want to miss my infusion—and stacked the six new CDs on my CD player, including the new super-air-brushed Lulu, which looks as if she uses Wite-Out instead of makeup, made sure I had enough reading material and letters to answer, and then I sank into the futon couch, and of course I could not leave without assistance. Wayne came over in the middle of the infusion with the wrong brand of ginger ale and mandarin-orange flavored seltzer water. (Is it possible to be allergic to mandarin-orange flavor?) At least he didn’t get peach. So we sat and giggled and looked at photographs in my album, and I apologized for not walking him to the door, since I was encumbered, and he left, and then of course he came back five minutes later because he forgot his sunglasses, which were right on the table, and I had to drag my fucking IV to the door, and it got caught and twisted, and I made faces like the eleven-year-old girl in the movie
Airplane
whose IV keeps getting dislodged when the singing nun strums her guitar and swings it for the entertainment of the plane. I love Wayne. I guess he should have my keys. Binky gets angry whenever I give keys away. I guess that’s because that’s how we got together. I gave him my keys too early.