Hold Tight Gently (10 page)

He worried, too, that despite his efforts at risk reduction, he was paying more frequent visits to Dr. Sonnabend’s office to get treated for this or that STD. Rich knew, after all, that he was basically “a germophobic, hygiene-obsessed Jewish boy.” After he finally came down with a severe case of hepatitis, Sonnabend quietly read him the riot act about further changing his behavior and gave him a pile of medical papers and journals to take home and read. “I need to get the message out,” Joe told him. “I have another patient interested in helping. Perhaps you should meet him.” As it would later turn out, Rich had a sky-high T8 cell count that—despite a nasty spell with crack cocaine in the mideighties, from which he eventually recovered—kept him free of opportunistic infections until 1995; he remains very much alive today and in 2003 published a memoir,
Stayin’ Alive
.

Rich jumped at Joe’s suggestion, eager to lend a hand in getting Joe’s findings published. A significant number of medical articles had been appearing since the initial CDC and
New York Times
accounts,
including a series of detailed reports in the
New England Journal of Medicine
. It seemed increasingly clear that the most important marker in these strange cases of immune suppression in gay men was a decline in “helper” (or CD4) cells, though the reason for the deficiency remained unknown. The picture became additionally confused when a few cases were discovered among heterosexuals, including one woman. They were mostly intravenous drug users and their partners. As far back as 1979, moreover, a Bronx pediatrician had reported a number of “inexplicable infections among the children of drug users.” Nonetheless, clinicians and researchers continued to speak of the spreading
gay
disease—to the point where, by early 1982, the label GRID (Gay-Related Immune Deficiency) had become affixed.
⁵

This was tantamount to declaring that homosexual behavior was the key risk factor; the more one engaged in it, the greater one’s chances of contracting the disease. There was no disputing the fact that it was mostly gay men who were falling ill. But the
equation
of homosexuality with disease ignored the diversity of current gay male “lifestyles”—to say nothing of the near total absence of the “gay” plague among lesbians. Yes, some gay men had hundreds or even thousands of sexual contacts, but many others were either monogamous or, for varying periods, celibate. The comparatively small subset of gay men who came down with STDs or with GRID were not inherently “immoral”—was it the number of orgasms or the number of partners that critics objected to?—nor was this statistically small group synonymous with
the
gay lifestyle. (In fact only one of the first four cases seen in L.A. had a sexual history that might accurately be called “promiscuous.”) Besides, promiscuity among heterosexuals, ever since the pill had become available, was hardly unknown.
⁶

What did become clear early on was that the country in general, and the federal government in particular, was simultaneously bent on ignoring or condemning GRID and those who had it. The pious Jerry Falwells of the land were quick to raise their gleeful voices in praise of God’s judgment against the “wicked practice” of homosexuality, while the Reagan administration bent its energies not to expanding health and social services to the afflicted but to cutting them. Diseases relating to sex have long been viewed in Western culture as the result of divine retribution. As Peter Lewis Allen has demonstrated in his splendid comparative study,
The Wages of Sin: Sex and Disease, Past and Present
,
the link between “debauchery” (variously defined) and punishment has a long history in the West, with “unbridled lust” widely cited by physicians and clerics alike as attributable to everything from leprosy to syphilis to bubonic plague.
⁷

Allen makes the additional and crucial point that the latest plague would be marked—as none had been previously—by the afflicted banding together and beginning to see themselves as “a group of people defined by their illness and entitled to rights because of it.” In the same way that Mike Callen, Joe Sonnabend, and Rich Berkowitz were on the verge of combining their resources, others, too, were beginning to realize that they need not sit passively by while their country abandoned them. They could unify and become proactive in their own behalf.

In San Francisco, a group of activists formed the Kaposi’s Sarcoma Research and Education Foundation (which later became the San Francisco AIDS Foundation). In August 1981, following President Reagan’s proposal to make sharp cuts in the budgets of both the CDC and the National Institutes of Health (NIH)—even in the face of the growing likelihood that a significant epidemic was in the wings—eighty men gathered in the New York City apartment of the gay writer Larry Kramer to hear Dr. Alvin Friedman-Kien describe the crisis and to try to raise funds for researching the new disease and possible treatments for it. That night they raised a little over $6,500; the Gay Men’s Health Crisis (GMHC) had been born.

Rich read through the materials Joe Sonnabend had given him and promptly contacted Mike Callen. His initial impression was that Mike was “queeny,” but after they talked, he found in him “a calming thread of sanity.” They agreed with Sonnabend’s emphasis on a multifactorial model for explaining what would soon be called AIDS, though none of the three ruled out the possibility—which other researchers, including the CDC, were beginning to lean toward—that a single new killer virus, as yet unidentified, was the culprit. Even if that view was confirmed, Mike and Berkowitz felt that Sonnabend’s ideas should be circulated widely in the community and debated. And the best way to do that was to write an article for
New York Native
, one that would eschew the technical language of the medical journals and be understandable to the average gay man.
⁸

That was the task Rich and Mike set for themselves. Every gay man they met who’d come down with the syndrome turned out to
have a sexual history similar to their own: namely, multiple partners followed by multiple STDs. Both agreed with Sonnabend’s view that sexually transmitted diseases had a cumulative and weakening effect on the immune system, and both were determined to become active in their own behalf. Mike, while in college, had begun to read and be influenced by feminist literature, including early critiques of the health system (“just because somebody says they’re looking out for your best interest doesn’t mean that they are”).

And both, finally, were determined to change their own behavior. When drawing the connection between repetitive sexually transmitted infections and the weakening of the immune system, Joe Sonnabend insisted that he was drawing a
factual
connection that he’d found among those of his patients who came down with the disease. But, he also insisted, “it’s got nothing to do with judgment” of the behavior involved. Sonnabend explicitly separated himself from the disapproving view Larry Kramer had taken in his notorious 1978 novel,
Faggots
, in which he’d deplored and deprecated the promiscuous sexual behavior of the fast-track gay male lifestyle. Sonnabend was widely and wrongfully accused of sharing Kramer’s moral disapproval of multiple, anonymous partners.

Mike, nonetheless, decided on temporary celibacy for himself, and Rich decided to kick out his S/M clientele. Mike also vowed to get on with his career—or with his hopes for one. He became a soloist with the New York City Gay Men’s Chorus and told himself that “however much time I have left to live, what I really want to do is be openly gay and sing gay music.” He managed to get a few solo cabaret dates, but then decided to try to form a rock band.

To that end, he placed an ad in
New York Native
looking for musicians. Pam Brandt, a lesbian musician who’d been in a somewhat successful all-women’s trio called The Deadly Nightshade, and a drummer named Richard Dworkin, formerly with the San Francisco–based band Buena Vista, responded. They met in Mike’s studio apartment at Jones and Bleecker Streets, which had a small kitchen, wall-to-wall carpeting, an upright piano, a small Yamaha sound system—and no furniture, except for two fold-up director’s chairs and a typing table. Mike made sherbet, then they ordered Chinese food, chatted pleasantly for a while, tried out a little music, and soon agreed to work together. They subsequently named themselves—after considering
The Amoeba Farts, The Scandells, and Take Back the Nitrites—Lowlife. Mike insisted on gender parity for the group and guitarist Janet Cleary soon joined them. Lowlife, for some two years, would play various clubs, blending an infectious variety of styles with between-the-songs banter that, as one critic put it, “never loses sight of the group’s gay roots.”

That first night, Pam went home after their initial discussion. Richard knew he was interested in something more, and stayed.

Mike sensed it too. Never reticent, always direct, he told Richard that same night that he had “it.” Richard shrugged. Years later, Richard thought that he’d never have become involved with Mike if his own father hadn’t committed suicide when he was ten years old—it had given him the double sense that all deep relationships were transient and that the death of a loved one was familiar and could be survived. Besides, he found Mike charming, warm and funny, big-hearted, genuinely interested in people, and gifted with a remarkable capacity for drawing out almost anyone within half an hour into a sort of “conspiratorial intimacy.”

Richard had an unorthodox background. His parents—so different from Mike’s—were confirmed atheists, and when he was barely out of his teens, Richard had helped run a failed city council campaign in Minneapolis. He’d then lived on a commune in rural Minnesota and spent most of the 1970s in San Francisco, where he attended the Conservatory of Music and played free jazz with various gay musicians, including Blackberri, Steven Grossman, the Angels of Light, and the gay male rock/soul band Buena Vista, which was featured in the pioneering documentary
Word Is Out
. He also met Jim Fouratt—well known in the 1980s as the co-founder of Danceteria, which became one of the most popular downtown nightclubs in New York City—who encouraged Richard to move east and for a few months gave him a place to stay. Richard felt that his whole time in San Francisco somehow contributed to his willingness to get involved with Mike—some sense about the wildness and spontaneity of life, about following unexpected impulses, about valuing the inconclusive, the impermanent.

A week after the two met—in late June 1982—Mike was hospitalized with cryptosporidium, formally diagnosed with GRID, and told that he had six months to live. From the time Mike’s T-helper cells had first been tested in 1981, he never had a count of more than 200,
and he had consistently high levels of CMV, which was known to be immunosuppressive. Sonnabend immediately put him on two double-strength Bactrim tablets daily to prevent Pneumocystis pneumonia (PCP). It was a crucial decision: Mike would never develop the often-fatal pneumonia. Yet more than thirty thousand would die of the preventable disease in the years to come, simply because the CDC and the medical community failed to prescribe Bactrim as a prophylaxis. Many could have been saved had federal agencies formally announced—as the CDC finally did in 1989—that a daily dose of Bactrim should be the standard of care for patients at risk.

There was no excuse for the seven-year delay: Bactrim was hardly an unknown, recondite, or expensive drug. It was readily available as a cheap generic product in 1981–82 and had been frequently used to prevent PCP in other kinds of immunocompromised hosts—for example, in kidney transplant patients. (Sonnabend, when part of the infectious diseases service at Downstate Medical Center in the 1970s, had had experience in its renal unit.) The CDC and the NIH’s failure to recommend it for GRID/AIDS patients seemed to both Joe and Mike, in Joe’s words, “a glaring example of a discriminatory response—that is, its selective denial to gay people . . . of the brutal indifference of federal health officials.” Many years later, he would express “bewilderment” at “the trust placed in authorities representing institutions that had such an abysmal record regarding concerns for the health of minorities.”

Many AIDS patients, out of understandable panic to do
something
, would increasingly grasp at a variety of rumored cures. As underground networks and buyers clubs began to spring up to get hold of any drug thought to be effective, the list would grow long: ribavirin (which had been used in Europe and Mexico against various viral diseases); suramin (which produced no rise in CD4 cells but led to unintended and dangerous adrenal insufficiency); HPA-23, acyclovir, imuthiol, and dextran sulfate in various combinations. All were equally ineffective. Other patients underwent chemotherapy and full-body radiation, submitted to bone-marrow transplants and high-dose regimens of interferon, attached themselves to spiritual guides, or swallowed vast quantities of herbal compounds. Mike stuck to Sonnabend’s advice: except for taking Bactrim, which was known to work against PCP, avoid all the touted drugs du jour.
⁹

During his June 1982 hospitalization, Mike was surprised to get a visit from the undemonstrative, reserved Richard Dworkin, the new drummer in his rock group. The visit meant a great deal to Mike and cemented the two men’s initial attraction to each other. After Mike’s release from the hospital, they began to date and soon became lovers. It was one of those miraculous cases of “hooked atoms.” Richard was as dependable and principled as Mike, but far less histrionic and verbal. Taciturn and forceful, he was Mike’s ideal version of a “top.” As he once put it, “Richard never had the history of self-torture for feeling different that I, early a sissy, always felt.” He would bring a solid strength to Mike’s life, much-needed ballast for the storms that lay ahead.