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)
Hyde Street Studios, San Francisco, June 1993, rehearsing for the Legacy album—left to right: Michael Callen, Chris Williamson, and Holly Near (photo by Patrick Kelly)
“An Evening with Essex Hemphill,” The Center for Lesbian and Gay Studies (CLAGS), CUNY Graduate Center, New York, 1993 (photo courtesy of CUNY)
Michael in a theater lobby surrounded by well-wishers, 1993 (photo courtesy of Richard Dworkin)
Essex the poet, 1985 (photo © Sharon Farmer/sfphotoworks)
As a result, it had become nearly impossible for the government to fill its clinical trials. Besides, it had become widely known that federal studies were being sabotaged by various forms of “cheating”—patients, for example, would have their pills tested by a lab to see if they were getting a placebo or the drug. At CRI Mike had found out just how “damned difficult” it was to run good clinical trials, but he continued to feel that, properly designed and regulated, they still held out the best hope for finding treatments that worked. He believed most people with AIDS would be more likely “to cooperate honestly and altruistically” with community-based trials than with federal ones.5
Mike felt that he, too, bore some responsibility for the current lack of effective drug oversight; he had, after all, helped (in his own words) “to foster the atmosphere of rabid anti-expertism” that fueled the drive to put “any drug into any body.” What he’d intended was to open up the definition of “expert” to include the lived experiences of people with AIDS. That had gotten twisted, he felt, “into the absurd notion that all opinions are of equal value—that when, for example, one must evaluate some highly complex pharmacological and toxicological question, the opinion of a PWA who may or may not have finished high school is just as valid as someone who has studied these issues for 20 years.”
Despite all the buyers clubs and the ingestion of a wild assortment of untested drugs, the progress against AIDS had been agonizingly slight. By 1990 there had been modest increases in median survival—that is, for middle-class white men, 18 percent of whom were now living on average eighteen months after a diagnosis of full-blown AIDS—as opposed to one year for IV drug users and a mere six months for African Americans and Hispanics. Mike believed that the improved statistics for white men were primarily due to Bactrim and aerosol pentamidine as preventatives against PCP, as well as to a general improvement in patient management—but the prospects for effective treatment were no more promising than when he’d been diagnosed a decade earlier. He agreed with the activists of ACT UP that the failure could be assigned largely to the federal government’s slowness and lack of urgency in its response to the disease. But he didn’t think that the best antidote was widespread deregulation.
His reasons were multiple. Reliable “surrogate markers”—like CD4 counts—had not yet been established; in fact, a high-powered meeting convened by the National Academy of Sciences had, in late 1989, failed to reach consensus on precisely that matter. It had been Mike’s personal experience, and that of many others he knew about, that T cells “bounce all over the place, varying from lab to lab and day to day.” He also disputed the common notion that an HIV-positive diagnosis was inevitably a death sentence, and pointed to his own decade-long survival as a case in point. He attributed his survival to having followed Sonnabend’s a
dvice not to experiment with whatever drug was currently being touted. In this regard, Mike rejected the widespread assumption that a drug either worked or it didn’t work. He insisted on a third alternative: taking a given drug could actually harm you, could hasten your death. Mike believed that he and other long-term survivors had rightly taken “a wait-and-see attitude about experimental drugs.”
That conclusion was difficult for someone like Mike to reach, since his politics were libertarian (that is, he was against blindly obeying authority instead of relying on individual choice). But he’d come to the painful decision that “there are in fact experts better able to assess the risks and benefits of a particular course of action than I.” He might have reached a different conclusion if Joe Sonnabend—whom he’d long credited with keeping him alive—hadn’t been his doctor, and if all PWAs had access to disparate data and to physicians and scientists willing to take the time to explain the complex implications of any potential drug therapy.
Instead, a “carnival atmosphere,” in Mike’s opinion, currently prevailed, the result of the pharmaceutical companies’ outrageous promotion of their products for the sake of making money, and the unearned certainty of some doctors and scientists bent on promoting their own careers. “The order of the day,” Mike wrote, “is anarchy. . . . The stage is thus set for anybody to test any drug, regardless of its toxicity, based on any fucocta theory. . . . The AIDS activist movement has joined with the drug deregulation movement to score a knock-out victory. . . . Federally designed AIDS research has become irrelevant . . . thanks to a plethora of treatment newsletters and the relentless PR of groups such as Project Inform urging what is referred to as ‘early intervention,’ ” which in Mike’s view encouraged desperate PWAs to medicate themselves with useless drugs.
Even if all PWAs had full access to the research literature, they would have found it rife with contradictory conclusions and advice. This was true both for recommended drug therapies and for definitions of “safe sex.” Mike may have been the founding father (he preferred “Queen Mother”) of the latter subject, but not even Mike could evaluate with certainty recent all-over-the-map studies about cock sucking. One such study found that oral sex without a condom carried “significant risk” of contracting AIDS, while another concluded that any top in anal sex who failed to use a condom was at greater risk of getting AIDS than someone who sucked unsheathed cocks. It had reached the point where, depending on your preferred sexual activity, you could probably find a study that confirmed your favorite option as the safest one. Questionnaires about sexual behavior, moreover, were notoriously unreliable. Asking someone whether they played the top or bottom role in anal sex, for example, not only encouraged an either/ or answer but failed to control for ambiguity, role reversals, memory lapses, fear of discovery, and distorted self-images.
The unreliability of self-report data had been clearly revealed at least as far back as Masters and Johnson’s 1979 study Homosexuality in Perspective. The two researchers had studied the sexual fantasies of four groups: homosexual men and women, and heterosexual men and women. The heterosexual men during face-to-face discussions and interviews had described same-gender sex as “revolting” and “unthinkable.” They reported no incidence at all in their histories of homosexual experience. As a result, Masters and Johnson had understandably designated them Kinsey O’s—that is, exclusively heterosexual. Yet when the two researchers studied their subjects’ fantasies they discovered that the men had “a significant curiosity and anticipation about same-gender sex”—and even worried about how effectively they’d perform. (The men’s fantasies also revealed, incidentally, that they envisioned themselves more frequently as rapees than rapists—as victims of “groups of unidentified women.”) The moral, I suppose, is something like “you can’t believe people are who they say they are”—they may well be reporting a vision of their ideal selves rather than their actual ones.6
Essex wasn’t naturally belligerent—that is, someone who invented slights in order to stir up trouble. But he was a person of intense feeling, and when he believed a genuine injury had been done to him, he could be fierce in defending himself. Twice in the summer of 1991, on quite different fronts, he became militantly contentious. The merits of the first dispute seem clear; those of the second, somewhat less so.
Essex had a gift for meticulously detailed work and proved his own best publicist on Brother to Brother. Diligently, he sent press materials to some sixty review outlets and then made follow-up calls to make sure that the books and assorted press releases had arrived in the proper hands. When he contacted an assistant editor at Book World, the review section of the Washington Post, and was told no such material had arrived, Essex sent a second round to the same editor. When Essex again followed up, the editor again told him that no material had arrived. But Essex wasn’t easily put off. He had the UPS shipping bill pulled to verify that the book had been sent (twice), and he had firsthand testimony from another employee at Book World who’d overheard the editor telling someone that he wasn’t interested “in reviewing gay and lesbian literature.”7
That did it for Essex. He accused the editor of homophobia, and the editor in turn insisted that “to suggest that we exclude books based solely on an author’s sexuality is not only absurd but personally insulting.” The lie heightened Essex’s anger. He sent the editor a blistering four-page letter in which he first made it clear that he’d never accused Book World itself of being homophobic—but rather the editor. Essex reiterated what he’d said from the first: he had a high regard for both the Washington Post and Book World and was not accusing either of being antigay. He had, moreover, checked again with his firsthand witness and she’d reconfirmed the editor’s homophobic words.
Secure in his position, Essex opened up with both barrels: “You should be accountable for your statements and your actions,” he wrote the editor. “That’s what I respect. Accountability . . . just because you don’t agree with a given sexuality it does not mean you have to trade in your integrity and credibility for lies and shabby denials in order to maintain a heterosexist hegemony that can easily find you expendable at any moment, and dismiss you as excess baggage or yesterday’s news.” Essex closed with this zinger: “I leave you with my best wishes that you will be able to manage in a changing world.” And he did his bit to ensure that the editor would not be able to manage: he sent a copy of his letter to the head of Book World. The bottom line? In general, Essex was a sweetheart, but on some issues you didn’t want to cross him.
At almost exactly the same point in time, August 1991, Essex took on Phill Wilson, the African American AIDS coordinator for the city of Los Angeles, and in 2014 still a prominent, well-regarded AIDS activist. Wilson invited Essex to come to L.A. under the auspices of the Black Gay and Lesbian Leadership Forum (BGLLF). The visit did not go well. Essex had been invited to offer three public programs under BGLLF’s sponsorship. On arriving in L.A. he read, with his usual attention to detail, a number of the free newspapers available to the gay community—and found not a single mention of his upcoming appearances. When he stopped off at the gay bookstore A Different Light, in West Hollywood, the clerks on duty expressed surprise that he was in town.
When Essex confronted Wilson with the absence of publicity, he replied that notices had been sent out to the black press. Not good enough, Essex felt. Since the appearance of Brother to Brother (and Tongues Untied as well), he’d been drawing “very diverse audiences” to his public offerings. His primary commitment was to black audiences, but “when it comes to moving products and building coalitions,” Essex expected his sponsors to make “general outreach efforts” to draw in audiences.
He also expected a reasonably accessible site. But Phill Wilson and BGLLF had selected a facility that had no running water or working bathroom (should nature call, patrons had to go across the street to use the bathroom in a restaurant—and deposit a coin to get access to a stall). Essex himself had to piss outside against the wall of the buildin
g minutes before he was to go onstage. In his protest to Wilson, Essex drew a devastating comparison between his receptions in San Francisco and in L.A. In San Francisco he spoke to nearly seven hundred people and sold more than 250 books. In L.A. he spoke to thirty-six people and sold “maybe thirty books.” Though the San Francisco/ Oakland programs were organized by individuals, without “the luxury of an organization or a board of directors to help in the planning,” they succeeded in drawing large crowds because they sent notices to the newspapers and generally circulated the flyers, photographs, and bios that Essex had sent them in advance.
As far as Essex was concerned, his one bad experience with BGLLF was enough to warrant an overall condemnation of the organization. He held Phill Wilson, fairly or not, directly responsible: “You are quite accountable for this travesty and unfortunately your board has to suffer my loss of faith through an unknowing complicity, though they are not totally to blame.” (Essex copied each member of the board and told Barbara Smith that two of the members had called to thank him “for raising the issues that they have been trying to raise with Phill regarding the structure and running of the organization.”) To Phill Wilson himself, Essex wrote how tired he was “of seeing us fail to do the simple things that convey our respect for one another.” Then he acidly added: “I don’t want my name or my image associated with any of your future activities. NONE.” Nor would he attend the group’s upcoming retreat—not, that is, “unless I was coming wearing a hockey mask and carrying a chain saw.”
Hold Tight Gently Page 29
