Hold Tight Gently (25 page)

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.”

Mike Callen, himself a risk taker, kept saying over and over again in the mid- to late eighties (including in a 1986 speech to the American Public Health Association) that if he could challenge one assumption about AIDS, it would be that it’s “an automatic death sentence—that AIDS has a 100 percent mortality rate. There are a handful of us—estimated variously at ten to eighteen percent—who happen to be quite alive more than three years after our diagnoses and who intend to be alive for many more years.” But Mike’s percentages might have been somewhat inflated, and besides, three years of survival was hardly the equivalent of a normal life span, never mind the quality of life involved. Even for those who’d managed to get through three years, as one researcher would later conclude, “there might be nothing ‘special’ about long-term survivors . . . [it] could be pure luck.”

Mike himself included “luck” whenever asked for an explanation—that is, “Luck, classic Coke, and the love of a good man.” Richard Dworkin hated it when Mike cited him as crucial to his survival because that implied that if he ever left Mike, he’d die; or, if Mike died, that Richard hadn’t loved him enough. In the spring of 1988, Mike wrote a piece for the
Village Voice
in which he insisted that “the best-kept secret of the epidemic” was that not everyone died (by then it had been six and a half years since Sonnabend’s original diagnosis). Mike argued that “there are very few infectious agents with a mortality rate of 100 percent for the simple reason that, from an evolutionary standpoint, any disease that killed all its hosts would die out itself.” A
New England Journal of Medicine
study concluded that the rates of survival
varied with different risk groups. The worst prognosis was for female IV drug users, most of whom were black and Hispanic.

Mike himself did some two dozen interviews with long-term survivors and concluded that what they had in common was that they were all fighters; passionately committed to living, they worked hard to stay alive. And they were all involved in the politics of AIDS—an involvement, Mike felt, that “can be an antidote to the self-obsession that comes with AIDS.” One finding that surprised him in his study of long-term survivors was that a majority of them had experienced a rekindling of religious sentiment. He explained it as part of the will to live, “when rational systems offer no hope, we turn to those systems that do. In our culture that means religious systems that speak of life after death” and of “a caring, paternal god who will take care of you.” As for himself, he wrote that he’d filed away a signed, notarized document indicating “that any request I might make for religious assistance is to be taken as prima facie evidence of dementia.”

Mike also argued that the definition of “luck” needed to include one’s race, income level, and access to health care. As the number of people infected continued to rise throughout the 1980s, it became ever more clear that minority groups, particularly blacks, Latinos, and IV drug users, were significantly underrepresented in federally sponsored clinical drug trials—despite the fact that at least some gay activists had been calling more and more attention to the social demographics of access. In 1989, for example, blacks and Latinos accounted for 42 percent of adult U.S. AIDS cases, yet were only 20 percent of the participants in current research trials. The same disproportion was true of women and children of all races.
²¹

Late in 1987, Mike’s prominence had led to his being appointed to the newly formed New York State AIDS Advisory Council, and he used his new position to make a special effort to arouse sympathy and treatment for IV drug users, whom many viewed as willfully self-destructive. Writing directly to Dr. David Axelrod, New York State’s commissioner of health, Mike expressed his concern that the state was “completely unprepared for dealing with the complex problem of AIDS and IV drug use. . . . If sympathy cannot be generated for the IV users themselves, then sympathy must be extended to the sex partners and children of IV users, many of whom are at risk for AIDS.” Given the disproportionate number of people of color among IV drug users,
Mike put the blame for government indifference squarely on racism. He denounced as “nonsense” the argument many officials used to reject the call for free, clean needles on the grounds that such a program would encourage or suggest approval of illegal IV drug use.

Along with four others, Mike even traveled to Albany to plead directly with Governor Mario Cuomo for a clean needle exchange program. Cuomo opposed the idea, citing the same tired argument about not wanting to send a message that drug abuse was acceptable. When Mike said something about Cardinal O’Connor’s “mean-spirited” attitude toward people with AIDS, Cuomo responded, “I think you misread him. . . . In terms of helping people and reaching out to them, I think he has been extraordinarily generous.” Realizing that Cuomo was a Catholic, Mike decided not to respond to what he viewed as a gross misreading of the cardinal’s character.

A year on the New York State AIDS Advisory Council was enough to convince Mike that he could better use his energy elsewhere. He thought individual members of the council, like Episcopalian bishop Paul Moore, worked hard—usually behind the scenes—to get more accomplished, but as Mike said in his letter of resignation, “We’ve certainly
said
many of the right things; but I’m not sure we can take much credit for delivering.” New York State, after all, had the largest concentration of people with AIDS in the United States, yet had dragged its feet in funding AIDS education, prevention, and clinical trials. Had it not, Mike felt, “we might now have treatments that would keep me and others like me alive.” The root problem, he concluded, was that neither Commissioner Axelrod nor Governor Cuomo had ever taken the council’s recommendations seriously; AIDS policy was “formulated elsewhere and where it comports with what the council may decide, good; but where it does not, too bad.”

While most white gay men were clamoring for admission to experimental drug trials, some African Americans were reluctant to enter them. Thanks to the notorious Tuskegee experiment (1932–72), distrust of government was deeply entrenched—to say nothing of its prior historical support or indifference, on both the federal and state levels, to slavery and its successor, segregation. Just as some white gays feared quarantine, some blacks feared that AIDS was a deliberate genocidal
plot—“just as the introduction of heroin had been”—to decimate minority communities.