Queer and Loathing: Rants and Raves of a Raging AIDS Clone (27 page)
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Authors: David B. Feinberg
Tags: #Biographies & Memoirs, #Memoirs, #Gay & Lesbian, #Nonfiction, #Literature & Fiction, #Essays & Correspondence, #Essays, #Politics & Social Sciences, #Social Sciences, #Specific Demographics, #Lesbian; Gay; Bisexual & Transgender eBooks, #LGBT Studies, #Gay Studies
BOOK: Queer and Loathing: Rants and Raves of a Raging AIDS Clone
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I gave him a scandalous calendar for his thirtieth birthday. Expecting the party to be composed strictly of gay males, I came armed with some fag version of a Sports Illustrated swimsuit calendar. His lover, Wayne, catered. There was a wonderful mix of people, men and women, including his sister Susan. Embarrassed, I sneaked out before he opened my gift. Next week at work he told me the calendar was a hit. Everyone watched as he paged through it, month by month.
David had bizarre gastrointestinal problems for years before he was diagnosed with AIDS. He was in and out of work for quite some time, as doctors ran exhaustive and inconclusive tests to determine what the problem was.
I don’t know how he was able to handle it when Wayne got sick. They were two heroes, caring for each other in the face of inhuman adversity. Is it worse to die or to survive your lover’s death, knowing you will go through the same hell he went through?
Wayne didn’t have many friends. Four of us from work drove upstate to the funeral. The service was in a beautiful rustic church. Wayne’s mother lived nearby. At the cemetery, David stood silently behind dark sunglasses. Susan helped him back to the car afterward, as if David were a movie star ready to collapse at any moment.
Eventually he had to quit his job.
David stayed on, working part-time, just long enough to cover the insurance payments and stay on disability. We would meet for dinner at the Little Mushroom Cafe in Sheridan Square. David told me about, the knitting group he was in, organized by GMHC. Six men would be quietly knitting in a room. Then simultaneously, six pillbox alarms would go off. Everyone popped his AZT tabs, then resumed knitting.
Through the months the group got smaller and smaller. Meetings were skipped when the instructor had to go to the hospital. Eventually they stopped meeting when they had dwindled down to two. The instructor died shortly thereafter.
David would visit his parents in Florida. It wasn’t pleasant. His father, an alcoholic, would pretend that nothing was wrong. His mother would weep.
I took a long lunch and went up to Lenox Hill Hospital to see David. David had pneumonia again. Jim Bronson had died there three years earlier. Kathy, the personnel director at work, couldn’t see him. She had problems with hospitals. She had masses said for him.
Terry from work was visiting David and they both saw a former employee sauntering up the street one evening at around six o‘clock. David planned on inviting me at the same time the following evening so I would see her, too. We didn’t get along. I was terrified at the prospect of ever seeing her again. Luckily we didn’t cross paths.
David moved to Montclair, New Jersey, that fall. I took a bus from Port Authority one Saturday afternoon to see him. I was paranoid I would miss the stop and be lost in New Jersey. One of his kitties hid in the closet. I recognized the poster of different species of fungi in the kitchen from his apartment in Brooklyn. We went out to the movies and then went for a drive through the neighborhood.
David was supposed to die three years ago. He was visiting his sister in Philadelphia when he fell ill with an infection. The personnel manager and her boss took a train to the hospital one afternoon to say good-bye. Miraculously, he recovered. When Brian at work heard David was dying, he said with resignation, “He’s been sick for so long. Perhaps it’s just as well. He’s suffered long enough.”
I wanted to slug Brian. “You fucking coldhearted gay Republican. Damn you!” I muttered to myself. “Don’t be so cavalier with someone else’s life. I bet you feel you’re doing the right thing with your life. Sure, you occasionally send a check to GMHC. You buy a ribbon once a year for the PWA Coalition. You attend the Gay Pride parade if it isn’t your weekend at the beach. You worry that the straights will get the wrong impression from drag queens. Damn you, you stupid selfish pig. Damn you to hell!”
I’ve never forgiven him for this.
David’s neuropathy grew worse. He couldn’t continue living alone. He moved in with Susan and her husband in a suburb of Boston. I saw him more often in Boston than when he lived in New Jersey. We drove out to Boston the weekend before the New Hampshire primary for an ACT UP demo. My friend Wayne dropped me off at Harvard Square and I took a bus to David’s house. He and I sat in the living room and talked the usual trash. He couldn’t button his clothes without assistance. He liked his home-infusion specialist. He could grip a glass only with the assistance of a thick polystyrene container.
David was on foscarnet for years. He was one of the first patients on the experimental protocol. Foscarnet was to stave off CMV and is so delivered intravenously through a Hickman catheter in the chest. Each drip took several hours. David had a few infections at the catheter site. David was already practically blind in one eye. His arms and legs were as skinny as twigs.
David loved his kitties. They gave him strength when his lover, Wayne, died and he moved to Montclair, New Jersey. They nourished his soul when he moved in with his sister in Cambridge. Perhaps the hardest thing of all was leaving them when he decided eventually to move to a hospice in Boston.
Each step he made was difficult: quitting his job, moving to Montclair, moving in with his sister in Cambridge, and now moving to the hospice. Susan was going back to school and her husband was teaching in another state. Suppose he fell down during the day and couldn’t get up?
He found a boyfriend the last year of his life. His buddy from Boston’s AIDS Action Council fell in love with him. It was a gift for both of them. They both thought carefully and seriously about a relationship. It was inadvisable from the point of view of AAC. Clients are not supposed to get involved with their buddies. There should be a distance to prevent the unbearable pain of loss. But how could they deny themselves this pleasure?
And so it was that much more difficult for David to enter the hospice. He felt he was letting Mike down. He told me that if not for Mike, he would have gone more easily.
A few months later I went to Boston under some pretext. It was really just to see David. I got my friend Neal to drive me to the hospice. It was a nice facility. But people were dying all the time. That was the worst, David P. told me. It’s so depressing.
He always brightened up when I saw him.
I was a pallbearer at his funeral. Never wear long shoelaces if you are to be a pallbearer. You will trip. His lover, Mike, sat in the front row at the memorial service. I ran into Mike a few months later, at a bar in Cambridge. He was doing fine. He missed David P. a lot.
After David died, Mary the office manager said, “Promise me you won’t get sick. I don’t think I can go through this again.”
Mary was everyone’s second mother.
How can you say this to me? I’ve gone through this so many times I’ve lost count. Of course I’m going to get sick. Don’t be absurd. But Mary is the mother we’ve never had. With mixed emotions, I lied. “I promise.”
On the Drip
My regular doctor is in Palm Springs, Wyoming, or at some international conference. I see his charming solicitous partner whose overly concerned demeanor sometimes gives me the creeps. Reading my chart, he recommends that I should consider IVGG: intravenous gamma globulin. Gamma globulin is a protein active against cancer and viral and bacterial infections. It’s another part of the immune system, along with T-4 cells. I would make an excellent candidate for this protocol: I have fewer than 100 T-cells and have a history of susceptibility to bacterial infections. His patients on gamma globulin have all managed to stave off CMV infections. I don’t particularly feel like getting strep or Hemophilus again, especially after that penicillin nightmare in January 1993.
I tell him I’ll think about it.
I think about it.
I am completely terrified.
But if it keeps me off a catheter and daily infusions of ganciclovir or foscarnet, fine.
According to Paul Monette, ganciclovir is now commonly delivered with a pump, not a hanging IV First toothpaste got the pump, then sneakers got the pump; now it’s used for CMV prophylaxis.
I don’t mind needle pricks, but an infusion is another matter. I’ve always had good veins. Back in college, I used to donate large quantities of blood for purposes other than clinical tests. The nurses would always compliment my veins. It’s no big deal for me to give two, three, or four test tubes of blood every time I see my doctor. Once my friend Chris, terrified, got me to go with him to the clinic for some complicated protocol. I took the afternoon off from work and waited with him in one of those molded-plastic chairs used in health clinics, fast-food restaurants, and waiting rooms for visiting incarcerated felons in medium-security facilities. Eventually, Chris was called. I joined him as he underwent the procedure. The physician stuck a needle into Chris’s arm and took some blood. Big deal.
I decide to wait until I see my regular doctor again.
A month later, my doctor concurs. He also recommends pentamidine infusions, twice monthly. The best prophylaxis against PCP is Bactrim, available in tablets; unfortunately, I’m allergic. I don’t feel like going through the desensitization procedure that my doctor suspects won’t work on me anyway. I’ve been inhaling pentamidine for a few years. I tried, it at home for a few months, but didn’t feel comfortable with it. I would constantly put off doing my inhalation: I would always be a week or ten days late. It didn’t feel right. I didn’t get that same bitter taste in the back of my throat.
I tell him I’ll think about it.
I ask my friend Wayne, the relentless top and control queen who giggles incessantly. Wayne works for the PWA Health Group, which sold me those underground ddC pills that ended up being variably dosed. He says it might be a good thing. The Health Group is selling Kemron (a formulation of oral alpha interferon developed in Kenya); although it is almost assuredly ineffective, it is Wayne’s duty in his capacity of guaranteeing quality control that their Kemron be a placebo of proper strength and chemical derivation.
A billion years ago I recall protesting with ACT UP against the pediatric protocol for intravenous immunoglobulin. Infants were getting four-hour drips of IVIG once a month to see if this would help their immune systems against bacterial infections. However, to be scientifically objective, some scientist had decided that in order to avoid the placebo effect, where, given any drug whether useful or not, the patient feels psychologically better, half of the infants received a four-hour sugar drip once a month, putting them at risk of infection from the IV This was barbaric.
Eventually IVIG was approved for infants and children.
Insurance companies balk at paying for gamma globulin because it’s so expensive and it’s currently approved only for children. The home-care nurse will be around $400; and the actual substance is around $1,500. There are other infusions for which a nurse can drop off the equipment, set you up, then go to a diner or a matinee performance of the latest Bruce Willis disaster and then return to unhook you. Pentamidine and gamma globulin are the only two infusions that require the presence of a nurse for the duration of the infusion, to monitor for possible allergic reactions.
Gamma globulin is the same thing as immunoglobulin.
Those poor kids suffered so I could try this. I feel guilty. I’m just another overprivileged gay white male with a cushy job and private insurance. Suspicious of the high prices, and slightly taken aback by my doctor’s enthusiasm, I wonder if kickbacks are part of the deal. Is this another insurance scam? I don’t know anyone else on this protocol. I have a feeling you couldn’t get gamma globulin on Medicare. But it’s not as if everybody can gain access to d4T, which is still in phase-three trials. Am I just wallowing in Jewish-liberal guilt combined with survival guilt? Should I continue to wallow in it? Better to wallow alive than dead.
Before my first infusion, I have to undergo a nutritional counseling session at Hemasuction’s office. I schedule it for 1:00 P.M., during my lunch hour. What could be more appropriate? I had been planning on seeing a nutritionist for the past three years, but I never got around to it. I was a little leery of the ones my friends recommended, especially the vegetarians on kelp diets. Well, one less item to check off from my “to do” list.
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