Hold Tight Gently

by Duberman, Martin

  Mike was even more adamant (as was Sonnabend) about rejecting the antiretroviral drug AZT when it first became known in 1985. Sonnabend read the study reports on AZT and was immediately suspicious of it. Among other things, he was struck by the number of deaths during the trial of participants who were on the placebo, not on AZT. What had in fact happened was that some participants in the study—by now sophisticated about trials—had been able to discern the difference between the AZT pill and the placebo, had sent their pills to commercial labs for analysis, and had gotten those taking the actual medication to share it. Despite the unreliability of the trial, the FDA proceeded to approve AZT in 1987.

  Hailed for its ability to prevent HIV from replicating, AZT was widely prescribed and earned millions of dollars for its manufacturer, Burroughs Wellcome. Along with having potentially disastrous side effects, like anemia, it showed a short-term increase in T-helper cells for some—but did not extend life. Mike read deeply in the medical literature and concluded that the Phase 2 trials of AZT had been inept, the research conducted by “amateurs.” He pointed to a French study published in 1988 that concluded that the benefits of AZT were limited at best to a few months of additional life, and also to a Veterans Administration study that suggested AZT actually shortened life span.

  Besides, Mike had begun to deplore the slogan—and actuality—of “drugs into bodies, meaning any drug into any body.” It was predicated, he felt, on what he called “the conveyor-belt conceptualization of AIDS”—on the cruel (and, he felt, unsupported) notion that once a person is infected with HIV, death became inevitable and therefore any experimental drug was worth taking even if the odds of it having any efficacy were low. To Mike that was the “equivalent of resorting to thermonuclear warheads to rid their homes of roaches, rather than starting first with less extreme measures”—like reducing risky sexual behavior.

  Mike welcomed the birth in 1987 of the group ACT UP. “The blunt truth,” he felt, was that up to that point “the familiar cast of AIDS buffoons in charge of the federal AIDS response are third-string scientists: lethally arrogant, ignorant and inept; and in several cases, probably actionably corrupt. Those in charge of AIDS . . . have botched it hopelessly.” ACT UP, through militant direct-action protests, Mike felt, might well force the powers that be to speed up the drug approval process. Nonviolent direct action was decidedly in the American grain; it had been successfully employed both in the black civil rights struggle and in the protest against the war in Vietnam, and it had been a staple during labor struggles as far back as the late nineteenth century. During 1987–88, ACT UP’s first year of existence, it managed to mount some two dozen civil disobedience actions that effectively mixed anger and theater, put direct pressure on NIAID and the FDA—and achieved some notable results.

  But Mike’s active opposition to the use of AZT put him at odds with many of the most prominent members of ACT UP, as well as several other notable figures in the AIDs struggle: the federal AIDS czar, Dr. Anthony Fauci, who predicted that eventually all of the 1.4 million Americans with AIDS would need to take AZT; John James, the prestigious editor and publisher of the San Francisco–based newsletter AIDS Treatment News, which was the bible for many in the AIDS community; and Martin Delaney, founder of the respected Project Inform, who acknowledged “some problems” with AZT but nonetheless stood by it. As early as the May 1986 issue of AIDS Treatment News, James had written, “The general public, and even most AIDS organizations and activists, do not yet realize that we already have an effective, inexpensive, and probably safe treatment for AIDS”—namely, AZT.15

  The controversy over the drug would drag on for years. When Mike published his book Surviving AIDS in 1990, his publisher, HarperCollins, “begged” him not to include the chapter titled “The Case Against AZT,” but Mike held out against the pressure. It would only be with the rigorous “Concorde” study in 1993 that the efficacy of AZT for extending life was disproved and the position taken by Mike and other dissenters validated. When the results of the Concorde trial reached him, Mike deplored the “nauseatingly shameless recent attempts to rewrite history” and reminded people that “a majority of AIDS activists joined with federal researchers in brutally suppressing doubts about AZT and aggressively promoting so-called ‘early intervention’ ”; their advice had been to “get tested, and if you’re HIV antibody positive, and if your T-cells happen to fall below 500, get on AZT right away!”

  The troubling questions that Mike, Sonnabend, and others had raised from 1987 to 1993 about whether AZT might actually shorten survival by destroying bone marrow and causing lymphoma had been shunted aside and those raising the questions denounced as uninformed fools. Mike’s detractors included those he called “key AIDS activists”—his allusion was to those members of ACT UP’s Treatment and Data (T&D) Committee who vigorously defended AZT and to its “star,” Mark Harrington in particular. The T&D Committee members had coalesced around the need to develop additional AIDS drugs but who in Mike’s opinion had settled “for being near the center of power instead of questioning whether the powerful person’s scientific output justified the power in the first place.” Mike had come to believe that “the obvious and simple notion of PWA self-empowerment” had “mutated into the absurd belief that one opinion was just as good as another. Desperate and confused people with AIDS,” he wrote, “facing life and death treatment choices have been duped into believing that the opinion of a Marty Delaney, a Mark Harrington or a Michael Callen is just as good as the opinion of someone who has spent 20 years tending the sick and studying virology.”

  As Mike himself came to acknowledge, his own early insistence on self-empowerment and his view that AIDS patients were the experts on the disease “had a hand in fomenting rabid anti-expertism,” had helped to influence the Harringtons and Delaneys to highlight their own considerable expertise and to emphasize getting “drugs into bodies.” As he put it, “I realize, looking back over my collective writings, that by excoriating establishment AIDS-think, I created the impression that there wasn’t any such thing as true expertise.” He felt that somewhere along the road, “the self-evident truth that the opinions and experiences of people with AIDS had value got twisted into the absurd notion that all opinions are of equal value,” whereas in fact the typical PWA could not evaluate complex pharmacological and toxicological questions.

  In the years before the release of the 1993 Concorde study, Mike took a great deal of abuse—not only for his early stand against AZT but also for his disparaging reaction to what had become a burgeoning number of New Age nostrums. Given the lack of viable treatments for AIDS, it was understandable that some patients, most of them young and desperate to go on living, would resort to magical thinking and clutch at the robes of assorted spiritual gurus. The most prominent of these was Louise Hay, the self-proclaimed “author, lecturer, and metaphysical teacher.” She originally established her Church of Religious Science in New York City but then moved to the more receptive environment of Santa Monica, where she established Hay House. It came to have a staff of twenty-two, an office complex for which she paid $11,000 a month rent, and a storage warehouse for her books and materials that extended for several blocks.16

  Hay’s philosophy centered on the two-prong doctrine of “positive thinking” and “personal responsibility,” and her substantial group of followers took weekly “Hay Rides,” a mix of colonics, reflexology, nutritional supplements, and “visualizations.” She also wrote and sold pamphlets and audiocassettes in which she urged people to forgo self-criticism of any kind and to substitute self-love and responsibility. In 1984 she published a full-length book, You Can Heal Your Life, subsequently appeared on countless national radio and television shows, and held seminars across the country. Central to Hay’s “philosophy” was the insistence that those who had a terminal illness had self-consciously chosen that illness—and needed to learn how to un-choose it. One prime technique was “mirror work”: seated before a mirror, one repeated over and over, �
��I love you.”

  All of which made Mike (in his words) “curl my lip uncontrollably.” With Western doctors frequently sending their AIDS patients for radiation and interferon injections—all of it harmful, none helpful—Mike had enough contempt for Western science to at least sympathize with those AIDS sufferers who believed that at a minimum Hay’s techniques made them feel more hopeful and relaxed. He had been, after all, one of the earliest advocates of “self-empowerment.”

  Yet he found Hay unbearably pretentious and mocked Hay House as “The Church of the Happy Face.” He also thought it outrageous for anyone to preach about “keeping the right attitude.” The implication of such an injunction was that those who got depressed about the death sentence hanging over them had only themselves to blame if they fell ill and succumbed. The further implication was that the thousands (it would soon be millions) who’d already died somehow hadn’t lived “correctly.” Not that Mike advocated whining—far from it. When he heard someone bemoan their fate—“Why me? Why me?!”—he was more likely than not to say “Come on, girl! You had to work to get this disease. It’s not like it tapped you on the shoulder one day while you were standing in line at the grocery store. Yeah traumatic, but let’s get on with it.”17

  From his many conversations with other long-term survivors, some of them taped, Mike concluded that the one characteristic common to all of them was grit. As he put it, “These people were all fighters, skeptical, opinionated, incredibly knowledgeable about AIDS, and passionately committed to living.” He was of course describing himself as well. Like most long-term survivors, Mike was all but uniformly skeptical about experimental drugs—and they kept surfacing, both in the underground and in doctors’ prescriptions. Year by year, as the number of those infected multiplied and then multiplied again, one “miraculous” drug or treatment after another was invested with magical healing power: interferon, AL-721, rifabutin, catnip enemas, horse urine therapy, amino acid combos, Ayurvedic medicine, carrot juice, quinolinic acid, macrobiotics, NMDA, intravenous penicillin or ceftriaxone, Compound Q, trichosanthin, suramin—the list went on and on, as did the mounting desperation. By the early 1990s, various studies showed that 52 percent of all HIV-infected patients were on one kind of “unapproved” therapy or another.18

  Mike himself wasn’t entirely unsusceptible to a bit of experimentation. Tired of the government’s limited response and the sluggish bureaucracy that required seemingly endless lines to join a treatment trial, he and a friend, Tom Hannan, decided they couldn’t “wait any longer in the hope that good old corporate greed will speed up finding treatments,” and they co-founded, with Sonnabend, the PWA Health Group. At the moment, the AIDS grapevine was abuzz with rumors that an egg yolk lecithin extract had shown “remarkable” benefits for many AIDS sufferers. Unable to obtain the substance commercially or through research trials, a number of people started whipping up homemade versions in their blenders. The PWA Health Group found a company, the American Roland Company, on Long Island, willing to sell them large quantities of an egg yolk lecithin substance. Mike and Tom made it absolutely clear that the Health Group was “not making any claim for efficacy. . . . We are merely acting as middle-persons to make available a safe food substance which many PWAs and researchers believe could extend” their lives. Mike himself tried the egg lecithin mixture for some three months, but when he failed to note any improvement he gave it up.

  Mike understood that behind the widespread grasping at straws was really a grasping at hope. And he shared the belief that hope was necessary to survival. When he learned that his Methodist mother had organized a prayer group that met regularly to pray for his recovery, he was “simultaneously deeply moved and horrified.” He had no use for religion, or for any form of belief that referenced a “higher power.” Yet he was intrigued enough to research the literature on psychoneuroimmunology and found a few double-blind studies that fascinated him without producing any sustained conviction. “The idea that I’m alive,” he wrote, “because a well-meaning group of Midwestern housewives include me in their prayers just makes no sense to someone as rabidly, rigidly rational as I am. I’m more comfortable just calling it luck—the atheist’s noun of choice to explain the unexplainable.”19

  Mike’s outspoken opposition to alternate therapies, and his general stance as a maverick—in his criticism of GMHC’s “paternalism,” for instance—turned him into a target for criticism, and even abuse. Early on, the first head of GMHC, Mel Rosen, had been anonymously taped referring to Mike as “a loony, and part of some cult, and not to be taken seriously.” GMHC had resented his disapproval of fund-raising based on the premise that AIDS was “a threat to everybody,” gay or straight. Accusations against him accelerated after he openly advised people against taking AZT. Even those who agreed with him about the drug’s ineffectiveness nonetheless attacked him for “stealing people’s hope.” If anything, Mike was “guilty” of encouraging people with AIDS to believe that “survival probabilities are expected to double by 1993.” More than one gay man even berated him for talking about survival “because it was bad for fund-raising.”

  The longer Mike survived, the more the rumors spread that he didn’t “really” have AIDS. Even as early as his 1982 hospitalization, three doctors had gotten into a shouting match—in front of Mike—about whether he really had AIDS. One of them insisted that he “only” had “crypto” (cryptosporidiosis)—not yet PCP or KS (which he eventually did get)—and therefore didn’t qualify. The second doctor insisted that “technically” he did, since crypto was on the CDC list. The third suggested that if he died from the crypto, he would posthumously qualify.

  The charge was further leveled that Mike was an “AIDS carpetbagger,” in it for the glory, and not “really” ill, an indictment that caused him (and his friends) great anguish. He ascribed the smear campaign to a number of factors: the controversial stands he’d taken (about AZT, for example), the fact that he was still alive, and the way in which he’d openly talked from day one about his, and by inference many other gay men’s, sexual practices. Fed up with the accusations, Mike finally wrote a piece for Newsline in 1989 to say “once and for all, I have AIDS,” and “by whatever definition you want to propose.” He’d decided, he wrote in the article, to retell his story one last time, and proceeded to itemize his history—from the high fevers and bloody diarrhea in 1982, to landing in the hands of Joe Sonnabend, to his recent diagnosis of KS. He even included a photocopy of his biopsy report. He concluded with a signed statement from Sonnabend to the effect that “Michael Callen has AIDS.” Sonnabend expressed his dismay “that people say he’s lying about a matter as serious as an AIDS diagnosis, and I hope this ends such speculation.” Sadly, it did not.

  Mike viewed the debate over his status as an interesting conflation of epidemiology, a sporting match, and astrology. He took some comfort from reading the history of other movements, deciding “it was ever thus: Charges of personal aggrandizement, turf battles, personality clashes, in addition to profound, legitimate, philosophical disagreements over strategy and purpose.” Mike may have looked like a “sissy” to some, but he had a forceful personality. Exceedingly articulate, his rational views were often unpopular but always stated clearly and cogently, and difficult for opponents to counteract.

  If “I had died that summer of 1982,” Mike mused, “no one would have questioned my ‘right’ to an AIDS diagnosis. It is the fact that I refused to die that makes me suspect; and the fact of my survival apparently threatens some people’s image of AIDS as invariably fatal.” But he didn’t die, and the hurtful rumors continued. After Mike returned to music, the attacks would expand to include the view that he was an egotistical poseur eagerly glamming on to the AIDS crisis in order to further his singing career.20

  I was born more than a generation earlier than Mike, had sown my wild oats before the onset of the epidemic (a heart attack in 1979 had put something of a period to that part of my life), and in 1986 had met the man with whom I’ve been
living ever since. Mike—and Essex, too—had started to lose friends to the disease within the first few years after it surfaced, but the epidemic was nearly five years old before I knew someone well who died of AIDS. “Davey” was only twenty-eight years old. We’d originally met in a hustler bar, where he’d picked me from a lascivious circle of admirers to take him home.

  We hit it off on a level beyond the cash nexus pretty quickly, and we saw each other with some regularity. Not only was Davey a beauty, but he also had a shrewd intelligence and was actively involved in gay politics. Following my heart attack, severe enough to require a six-week hospital stay, Davey visited me in my Greenwich Village apartment. After catching up on this or that, he nonchalantly announced that a blow job would do my sagging spirits a world of good, and promptly fell to the task. To my own surprise, it worked. I’d lost confidence in my body, and my libido had hiked off the map. Davey’s ministrations—a product of his generosity, not lust—did wonders to revive it. We lost track after a few years, but when I learned that he’d succumbed to AIDS, I was horrified. He’d been such a gifted, sweet-souled person that I felt the loss as if I’d been recently and steadily in touch with him. As I wrote in my diary when hearing the news of his death: “What is there left to say about this gruesome, senseless killer? Except that the wrong people are dying, those who gave themselves incautiously to experience, to life: the risk-takers, the inventive ones. The fearful ones who literally sat on their asses still sit.”