Hold Tight Gently (40 page)

May 29: The nobility of sweetie’s spirit makes me feel achingly close to him. He is sad and quiet, but entirely uncomplaining. He never expected life to go right for him, and then, just as it seemed it might, he’s been brought back to what he all along assumed would be a suffering fate. Perhaps he never felt entitled enough to a good life to get angry over the prospect of its being withheld or withdrawn. I
worry that that could lead to resignation, and last night talked to him about how good his odds were, how much I love him, how good our life together will continue to be . . .

June 7: Volunteering at PWAC has taken on a different meaning. I used to read the materials, field the phone calls and proof the
Newsline
with grateful distance. Now I read the memorials and the personal accounts of how HIV-positive turned to ARC turned to AIDS with a churning stomach, a gloomy sense of immediacy.

July 4: I have to fight off the fear (I tell myself I’m being literary—the 19th-century sentimental novel) that goodness such as Eli’s can only be a visitation.

Oct. 9: Dr. “Bigelow” says that Eli might stay free of major infection for years, and by then Bigelow expects a combination of drugs will have reduced AIDS to a chronic, but no longer life-threatening disease. I had been sunk in gloom before the results came back, convinced Eli looked thinner & pale, certain the news was going to be bad.

A year later, Eli’s T cells had dropped by half, yet Bigelow’s prediction would ultimately prove accurate. No one knew, of course, that in 1995 the protease inhibitors would arrive and dramatically change the AIDS prognosis, so when Eli’s numbers continued to drop, Bigelow for the first time suggested that he enroll in an experimental GP120 trial at the Deaconness Hospital in Boston. It would entail fifteen trips over eleven months, and Bigelow (who we trusted completely) assured us that there was no downside to participating—no side effects, no immunity created to future drugs, no negative effect on T8 cells. My friends at PWAC told me that a comparable study had shown a T4 cell decline of 6 percent in those getting the drug versus a 23 percent decline in those not getting it.

Eli decided to go ahead. For the first few trips to Boston I went with him, thinking we could minimize the trauma by “making a kind of weekend vacation” of it, dropping in casually for a few minutes to get an injection while “cavorting” from one touristy good time to another. It didn’t work. Eli decided that the best strategy for denial was to fly back and forth to Boston as rapidly as possible—without me. He continued to make the trips, and his T cells (and weight) continued to fall. After his count went down to 240, Bigelow put him on AZT, but
he couldn’t tolerate it—nausea, exhaustion, anemia—and Bigelow stopped the drug after two months. I administered daily shots of Epogen for the anemia. Then came night sweats and fevers, and Bigelow added Bactrim as a prophylactic against PCP. But Eli’s T8 number rose, and one new theory was that for some lucky people T8 cells replaced T4 cells, and were the new marker of stability . . . and on it went . . .

June 18, 1994: My poor sweet boy is so amazing, he carries this awful burden every minute, yet moves bravely through his day, even extracts some joy. In his place, I would whine away my life, and probably be dysfunctional. But now & then his underlying grief bursts through, and he sobs and sobs . . .

Aug. 3, 1994: The decision has been made to drop everyone from the Boston protocol with fewer than 200 T-cells, and Eli’s are now—70 . . . Bigelow will tell Eli
casually
that the study is over and that there will now be a pause to analyze results . . . it turns out Eli was the one out of six who was on a placebo . . . Bigelow thinks my own level of anxiety needs some attention; he gave me the name of a psychopharmacologist . . . If I don’t keep myself in decent shape, I won’t be there for Eli when he most needs me . . .

June 30, 1995: Eli’s again running a low fever. It’s happening with more frequency. I loudly ascribe it to an “ongoing Bactrim allergy,” but inwardly quake.

And then, when Eli’s T-cell count fell below 10, came the unbelievable release of the protease inhibitors . . . and he’s reacted well to them down to the present day. In the end, we were among the lucky ones.

Despite Mike Callen’s remarkable resilience, by 1990 he was having more difficult health problems, and they were accompanied by greater mood swings and deeper periods of despondency than he’d known before. “I only hope,” he wrote, “that those who claim to represent the best interests of those like me who
have
AIDS understand the tremendous responsibility they have taken on. . . . I strongly suspect that the current rush towards virtually total deregulation of drug testing in this country is a disaster of immense proportions.”

Though Martin Delaney of Project Inform had done seminal work
informing AIDS patients about treatment options, Mike again singled him out to blame for championing the latest “hot” drug being hyped. The official study of Compound Q (trichosanthin), which derived from a Chinese cucumber, had been a small one, and Delaney initiated his own study but without (in Mike’s opinion) sufficient safeguards to secure it against contamination. Sonnabend agreed with Mike; he accused Delaney of swallowing anything the authorities told him, though in Sonnabend’s view they often held racist and homophobic views. When two people in Delaney’s study went into comas, Sonnabend was horrified and declared that Delaney should be arrested. Sonnabend was nearly as hard on the activists of ACT UP, feeling that in their rush to expedite the approval process (“drugs into bodies”) they were dangerously diluting needed safety procedures. Alas, when people are dying, out of options and nearly out of hope, taking risks on untested treatments becomes the least of their worries.

Mike was more understanding. He realized that in the absence of properly conducted treatment research on a variety of promising therapies, people would become instantly excited over rumors that an effective new drug had surfaced. When the FDA refused to stop Delaney’s “illegal” Compound Q trial, Mike felt it signaled the end of any effort to apply testing standards.

The history of Bactrim suggested to many that to wait for trustworthy trials was literally to court death. A double-blind study as far back as 1977—four years before the outbreak of the epidemic—had conclusively proven that two double-strength Bactrim tablets a day could essentially prevent PCP. Yet after AIDS emerged, the federal government made no effort to urge doctors to use the drug as a prophylactic against PCP. The result? By the beginning of 1989, 30,534 Americans had died of AIDS-related PCP. By the time Compound Q came along, some people with AIDS weren’t willing to enter federally sponsored trials unless there was demonstrable evidence that the drug being tested offered more hope than those already widely available, though of unproven efficacy. Mike—and Joe Sonnabend—put some of the blame on (in Mike’s words) “the plethora of treatment newsletters and the relentless PR of groups such as Delaney’s Project Inform urging what is referred to as ‘early intervention.’ ” The result was that some PWAs, given the lack of alternatives, were still “injecting, ingesting and imbibing” any new substance that came down the pike.

Marlon Briggs and Essex Hemphill in
Tongues Untied
, 1989 (photo courtesy of Signifyin’ Works)

Essex Hemphill at the San Francisco Out Write Conference, 1990 (photo courtesy of Lynda Koolish)

Essex signing
Brother to Brother
following his reading at the Lambda Rising bookstore, 1991 (photo © Sharon Farmer/sfphotoworks)

Essex and Dorothy Beam, Philadelphia, 1991 (photo © Sharon Farmer/sfphotoworks)

Essex, 1991 (photo courtesy of Richard Marks)

An exhausted Mike soldiering through a Flirtations sound check, 1992—left to right: Aurelio Font, Jon Arterton, Michael Callen, Jimmy Rutland, and Cliff Townsend (photo courtesy of Richard Dworkin)