* * *
In 1983, two long years after the first patients began trickling into Sonnabend’s office, the disease’s cause was isolated. In 1984, the American government announced that that cause was a virus, and in 1986 that virus received a name, the Human Immunodeficiency Virus, known as HIV. With research came understanding about how it spread, calming the rumors unleashed by misunderstanding and panic: Could you get it by kissing? shaking hands? touching contaminated sweat? drinking out of the same glass?
No one was sure. And no one could be sure if they had it, since there was no commercially available test until 1985. Until then, every cough, every cold, every bruise could be the harbinger of a horrible death. And the spread of reliable information was rendered more difficult by politics. Both main causes were taboo, linguistically speaking. The first cause was contaminated syringes used by intravenous drug users. But to warn against sharing needles ran up against the rhetoric of the “War on Drugs” that the Reagan administration was vigorously prosecuting. Needle exchanges to curb the spread of HIV were, in most cases, illegal.
The second cause was unprotected sex. With the country governed by the religious Right—a disparate group bonded primarily by hostility to feminism and homosexuals—“you couldn’t say certain things,” Dr. Sonnabend remembered. “You couldn’t even talk about condoms.” Meanwhile, in the gay neighborhoods of major cities, men walked the streets with fear in their eyes. In 1990, Michael Musto, a writer for the Village Voice, described the terror of the words one had, and the terror of those one didn’t:
You remember when it was called “gay cancer” and might have been caused by poppers. You remember when they said 10 percent of those with the virus came down with the disease. You remember thinking you were in the clear if you hadn’t had sex in three years. You remember when Rock Hudson was the first famous person to die of AIDS. . . . They avoid the word—on death certificates, in conversations, in the media—but the word won’t go away. You’re bored with it, mad at it, terrified of it—but it won’t go away.4
In Illness as Metaphor, Susan had written that “a surprisingly large number of people with cancer find themselves being shunned by relatives and friends and are the object of practices of decontamination by members of their household.”5 Many gay people were shunned, told that their sexuality was dirty, even before AIDS; and AIDS, like cancer and tuberculosis, was strongly linked to sexuality. Cancer was “considered to be de-sexualizing.” Tuberculosis “was imagined to be an aphrodisiac, and to confer extraordinary powers of seduction.”6 But if cancer and tuberculosis were linked to heterosexuality, AIDS was linked to homosexuality—and homosexuality, Michelangelo Signorile would shout a few years later in one of the all-caps columns that made him notorious, was “SOME SCANDALOUS SECRET, THE NAME OF WHICH WE CAN’T INVOKE.”7
* * *
This tissue—of things without names, of scandalous secrets whose names could not be invoked—made up “The Way We Live Now,” which Susan published in The New Yorker in November 1986. The story is a chain of people talking about an unnamed patient who has come down with some unnamed disease, none of whom can quite say what is going on: “Ursula said, and the bad news seemed to come almost as a relief, according to Ira, as a truly unexpected blow, according to Quentin . . .”8 Things can only be known according to so-and-so, according to someone else, and the characters go through the motions of their lives, oppressed by an all-pervading fear: “Well, everybody is worried about everybody now, said Betsy, that seems to be the way we live, the way we live now.”9
Susan had opened Illness as Metaphor by dividing the sick from the well:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.10
But in “The Way We Live Now,” the nature of the disease blurs the boundaries between the two citizenships. Anyone could slip, without warning, to the night-side.
My gynecologist says that everyone is at risk, everyone who has a sexual life, because sexuality is a chain that links each of us to many others, unknown others, and now the great chain of being has become a chain of death as well.11
Twenty-six characters—one for each letter of the alphabet—define themselves in relation to the disease, and to the patient: whether he likes seeing them, whether they are visiting him, what they know about his condition, and what they do not. They all know where he is headed, and they all try to push that knowledge aside:
There must be a way to get something positive out of this situation, he’s reported to have said to Kate. How American of him, said Paolo. Well, said Betsy, you know the old American adage: When you’ve got a lemon, make lemonade.12
Platitudes, gossip—meaningless words—follow these people, persecute them, all the way to the grave: “The thing I can’t bear to think about, Tanya said to Lewis, is someone dying with the TV on.”13 In the absence of real knowledge or effective treatment, the afflicted cling to their worn-out language, to their metaphors. Without hope, even the dullest words offer some comfort—however temporary, however ineffective.
* * *
Over the thousands of pages of the nearly hundred volumes of Susan Sontag’s journals, a few leap out as particularly bloodcurdling. This is her list of AIDS deaths: page after page, name after name after name, offered without comment, as on the Vietnam Veterans Memorial, inaugurated in 1982, just as the crisis began. There are the artists Susan knew—Peter Hujar, Robert Mapplethorpe, Keith Haring, Jack Smith, Michel Foucault, Bruce Chatwin—and the others whose deaths brought the disease to broader attention: Rock Hudson, Halston, Liberace, Perry Ellis.
Only one name appears twice: Paul Thek. This was the man to whom she twice dedicated a book: Against Interpretation, and then, in 1989, AIDS and Its Metaphors. She had been out of touch with him since 1978, since the letter in which he accused her, following her cancer, of being a “manipulative harridan” and trying to make him heterosexual:
I deeply resent, DEEPLY, that effort on your and Davids part to mold ME in HIS image, as it were, all that bit about those damn cowboy boots, etc., etc. . . . trying to “update” me, etc., very boring. Very tacky. You both seem cornily determined to “make a man out of me” (shall I “make a lady out of you”!?) That is, YOUR version of what a “man” is. How would you know? . . .
And I didn’t FEEL good when you and David went thru your lets-wake-Paul-up-teach-him-to-be-a-“man” routine. He actually even used those words to me!14
Susan had been attracted to Paul’s unforced, unintellectual brilliance, and to the spontaneous warmth that she had missed as a child. When she was comfortable enough to let her guard down, Susan could be girlish; Paul, all his life, was boyish. “If he wanted to tell you something that might surprise you, he would put on big expressions of surprise himself,” said Stephen Koch. “Paul was one of the few people with whom I saw Susan be physically playful. It was not unlike the way she would be physically playful with David. Lots of hugs, kidlike voices, giggling. When Paul came by, which in those days he did often, Susan anticipated fun.”
Yet—rather like Alfred Chester—Paul grew increasingly unbalanced. He once came to visit her “with one ear, Van Goghish, painted blood red.”15 Susan was upset by his drug use. One day, in a restaurant, he began looking around: “You see, Susan, all these people are dead.” She said: “No, they’re not, Paul. They’re not dead.”16 He became convinced that any woman who expressed even the mildest interest was sexually obsessed with him and would take revenge if he failed to reciprocate. And he pursued Susan, Koch remembered.
Paul would call up, ask if he could come by, and be given some (probably transparently false) excuse. He would then try again, pester her, and struggle to negotiate time with her. Though she remained nominally loyal to their friendship, she plainly saw hi
m as a burden. Not a bore, but crazy. She was rather interested in his later almost fanatic Roman Catholicism. I remember him telling me that he often heard the devil chattering in his head.
In the letter in 1978 in which he accused Susan and David of trying to “make a man out of him,” he had—with unquestionably awkward timing—implored her for a loan. Soon, beautiful, brilliant Paul was so poverty-stricken that he was bagging groceries. Exhausted, depressed, and mentally disturbed, he could no longer work on art.17 Susan never responded to his request for money. Then, on January 15, 1987, weeks after she published “The Way We Live Now,” he sent news. He had been calling FSG, trying to get in touch with her, but she had never returned the calls.
I’ve been told by my doctor that I have, of course, AIDS. I’d felt psychically that SOMETHING was drastically different, my disillusion, my total boredom with the “art” world, etc., was all really too extreme . . . and now I know I was right. They say the illness brings on newly deep awarenesses, and that is surely true! Word has it that you see a good deal of Robt Mapplethorpe these days, and word also has it that HE too has been “very ill.” I don’t know at all how much truth there is in these bits of news . . . but, if it is true . . . then you already have more than enough problems of this sort.
In the letter, he said that he wanted to ask her to take care of a storeroom full of art that he would be leaving. “Without a widow . . . chances are all these things would just be THROWN AWAY! All that work.” He mentioned her failure to help him when he needed her, but added at the end: “I hope you’ll forgive me . . . as you know I have forgiven you.”18 They eventually reconciled, and before long Paul lay dying. A hastily sketched log of his final days survives, written by a friend, the artist Ann Wilson:
August 5: “Susan (Sontag) came—and Paul asked us to leave them alone together. Susan said Paul requested her to read him Rilke (Dueno Elegies) she went and got a copy and read to us all from about 3–6 . . .
August 6 . . . 2pm Susan brought priest writer IVAN ILLYCH to meet Paul and they had a discussion, he had a big round lump in his cheek
August 7 4PM returned to find Shala [Sheyla Baykal] and ED very upset because Susan Sontag wanted to move Paul into the care of Barbara Starett at St. Vincents hospital and had apparently been setting up this move
August 8 I called Priest for last Rites at residents suggestion—
August 9 . . . DR. Brown “Paul is sick with HIV disease. He has colitus. Paul is living. Paul has been sick for one month with severe intractable diarrea. Last week Shala and Paul called. I was informed that he had dirreha for three weeks. He was so week he could not get out of bed and feed self. Admitted to hospital. We found him severely dehydrated. He was very weak. . . . it was my understanding it was irreversable-His arm had swollen up-it was causing it great distress-he would have died in two days if he had not gone to the hospital-its irrelevant-Theres no bringing him back-nothing except to keep him comfortable-
. . . Susan Sontag called Dr. Sterrett-Paul was near death and getting morphine-What your evaluation?
Dr Brown “She doesnt have time.”
. . . 10pm Susan (Sontag) reads-all night vigil-all of us reading-Susan and Ed left around midnight. Susan asked me to call her if Paul died.
AUGUST 10 . . . Paul stopped breathing at 1:45 AM
The wonderful Jamacan practicle nurse had wrapped Paul in white guaze and placed the flowers which Bob Money had brought from Pauls roof garden down the center with his rosary-Shala called me back in to see this—he was his own image.19
* * *
To read “The Way We Live Now” alongside the chronicle of Thek’s death is to see how Sontag transformed the powerlessness of words—the friends whispering in the corridors, the doctors hopelessly mumbling, the priests and poets fumbling with pretty phrases, the patient deprived of any voice at all—into an indelible portrait of terror.
This makes it all the more bizarre that Susan was adamant that the story, which is obviously about AIDS, was not about AIDS. In 1991, she collaborated with the British artist Howard Hodgkin on a book version, to which Hodgkin contributed six paintings. The copyright page announced that the proceeds were “given to AIDS charities in the United Kingdom and the United States.” But Susan “didn’t want it to be an AIDS story,” Hodgkin said. “She was very firm about that and would deny that it was about AIDS. She wanted it to be bigger than that.”20
The insistence on being “bigger than” something that was killing her friends by the dozen, on refusing labels, on being universal—on giving, in Bob Silvers’s phrase, “no idea of the status of the connection” between artist and subject—had the ironic effect of distancing her from her subject, of undermining her story, by turning something real into something abstract. This was the very thing for which she had indicted the metaphors of illness in two impassioned polemics.
In 1984, six weeks before Silvers sent Susan the letter about her Sartre essay that contained the above phrase, Adrienne Rich delivered a speech called “Notes Toward a Politics of Location.” Rich had come to believe that a writer ought to “begin with the material. Pick up again the long struggle against lofty and privileged abstraction,” speak from specific experience:
Perhaps we need a moratorium on saying “the body.” . . . To say “the body” lifts me away from what has given me a primary perspective. To say “my body” reduces the temptation to grandiose assertions.21
This essay dates from the beginning of the age of AIDS, when denial of that most personal experience, of sickness and death, was reaching farcical proportions. The obituaries attributing deaths to “a sudden illness,” people falling “very ill,” the funerals at which it was forbidden to mention the cause of death, are far too numerous to recount: eerily reminiscent of the silence around cancer that Sontag had earlier denounced. A refusal of names—“the body” rather than “my body”—provided false comfort, and added to the gauzy atmosphere of silence and shame.
Michael Shnayerson, a journalist at Vanity Fair, was assigned to cover the epidemic toward the end of 1986, in the weeks surrounding the publication of “The Way We Live Now.” “It was like covering a war that was going on all around you, right in New York City, invisibly.” Shnayerson, who was heterosexual, lived on Bedford Street, in the heart of the gay community of Greenwich Village. “Even in that neighborhood, I didn’t have much awareness of AIDS,” he said. “It was invisible to the broad readership of Vanity Fair, and it was probably invisible to a lot of New Yorkers.”22
His piece, for which he interviewed Susan, focused on the devastation in the art world. This was controversial: “a political risk,” he said, “because it was based on the premise that people in the arts were dying disproportionately, and was it somehow politically incorrect to suggest that there were more gay people in the art world, and that gay people were getting AIDS far more than straight people.” Six long years after the “gay cancer” had first started spreading fear, it was not being written about in the mainstream press. “It was one of the first pieces in a venue that prominent that was talking about the epidemic in those terms”: in the terms of naming names.
The silence around AIDS meant that people who suffered from it were invisible. The editors borrowed a concept from one of the great pieces of Vietnam-era photojournalism, a Life cover story from 1969 entitled “The Faces of the American Dead in Vietnam.” This showed page after page of boys next door, 242, killed in a single week. This simple tactic—showing the victims’ faces—had a powerful impact on the war debate. “We must pause to look into the faces. More than we must know how many, we must know who.”23
Because of the shame surrounding AIDS, its victims were not being seen. “The culture was in the closet,” said Michelangelo Signorile. This was the culture in which people were surprised to learn about the homosexuality of Allen Ginsberg or Gertrude Stein. “Gay sexuality was so unspoken. There were old ladies who were shocked that Liberace was gay.”24 Many people had not acknowledged that they had AIDS, ma
ny people had not acknowledged that they were gay—and so, said Shnayerson, “it was actually much harder than the words, getting the pictures.”
Many people had not acknowledged they had AIDS, many people had not acknowledged they were gay. What did you do? Did you just put them in that spread anyway? Did you talk to their lovers and families, and see what their sentiments were? As I recalled, each case was its own issue. There were many pictures, probably fifty or more. . . . We were essentially outing all those people. Some were out, but many weren’t. I think the debate just turned on what was more important, and it was more important to get the story out, make people aware of the devastation, and draw the government’s attention, and do something.
This was the conclusion Adrienne Rich had reached. As in the age of Vietnam, a political response to AIDS would have to be forced. The anti-gay Reagan ignored the epidemic for years. He shielded his brutality behind Warholian “sound bites”—a term invented for Reagan, who depended, like so many politicians, on the most cynical function of metaphor: to sever the connection between language and reality. Sontag was certainly right that abuse of metaphor could keep citizens from making the connection between clichés and bodies. That is why—as Life did in the sixties and Vanity Fair did in the eighties—activists realized that “we must know who” was speaking, who was dying. “The Way We Live Now” was published into a context in which it was essential to name names—particularly the name of AIDS.
Chapter 29
Why Don’t You Go Back to the Hotel?
The Way We Live Now” appeared in The New Yorker on November 24, 1986. Six days later, the Hawaii International Film Festival opened in Honolulu. Susan was on hand as a jury member, participating, as she had for several years, in order to visit her family. Despite the palmy location and the opportunity to see movies from around Asia and the Pacific, Susan could not stand the visits. “There were these beautiful trips,” said Steve Wasserman, “but it was like a horror show.”1
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