When My World Was Young 1945-56 The Yellow Brick Road 1956-60 What a Wonderful Town 1960-61
Wonderful Town (pt. II) 1962-66 The Gay Sixties 1966-70 The Juicy Life 1971-76
Juicy Life (pt. II) 1976-80 Losing Alexandria 1981-87 The AIDS Spectacle
Losing Alexandria (pt. II) 1987-1990's Personal Epilogue
CONTINUATION: Part II of Losing Alexandria (1987-1990's)
Front page of NY Post Oct. 6, 1987
THE MAN WHO NEVER WAS: THE MYTH OF "PATIENT ZERO"
There was a growing climate of fear and hatred across the United States born of ignorance and government lethargy, and it was eagerly fanned into hysteria by hate mongering political and religious conservatives and extremists in no small supply, then as now, in the U.S. population. The wildest exaggerations and lies were circulated concerning the ease of HIV transmission, draconian measures were called for against gay men, infected persons should be quarantined or tattooed or both, infected children were thrown out of school and their homes attacked, funeral homes refused to take the bodies of deceased persons who had died of AIDS or demanded exorbitant fees and on and on and on it went wherever one turned and the mills of hatred, financed largely by the followers of evangelical Christian groups, disseminated an endless virulent spew of distortion and lies in the media and on the Internet. [Yes, there was already an internet in these years with a thriving series of news groups.] However, the Roman Catholic hierarchy's pronouncements on the topic were usually intolerant, as well as systematically obstructive toward measures promoting HIV infection prevention. And this negativity encouraged Catholic laypeople in behaviours virtually as hostile and ignorant as those of evangelicals.
The Reagan administration's official distaste for the topic of the AIDS epidemic and the timorous attitude of mainstream denominations of the Protestant majority, meant that hatred of HIV-infected people and of all gay men swept the United States. The mainstream AmericanProtestants, like the "Good Germans" of the 1930's, chose not to see the abuse being visited upon persons an unpopular minority. And the Reagan administration disdained to take a leadship role for fear of antagonizing the conservative Christians who had become part of its core support.
The nation boiled with fear, misinformation and hate.
Into this climate was born a beast more terrifying than Bram Stoker's invention of Dracula, with the publication of Randy Shilts' And the Band Played On in 1987. Shilts gave a name to "Patient Zero," the supposed central patient in the HIV crisis indeed, perhaps the first or index case in the epidemic it was claimed. He was Gaetan Dugas the world was told, a French-Canadian airline flight attendant, and he was a monster: Dugas was diagnosed in 1980 with "gay cancer," and had been charming but uncooperative with medical authorities, and he had then crisscrossed the United States with a fiendish mission to infect as many men as he could.
This demon Shilts crafted had died in 1984...which conveniently allowed for no direct refutation of the book's scenario.
(right) Gaetan Dugas
If the media became obsessed with Shilts' "Patient Zero" Gaetan Dugas the gay man who brought the AIDS virus from Paris and ignited the epidemic in North America, and then went on a killing spree before he died the hate mongers embraced him with the wild enthusiasm they usually reserved for the Anti-Christ or Communism. Here was all the "proof" anyone would need to accept their most extreme attacks on gay men. The hatred was volcanic now, and then too, "Patient Zero" was a great moneymaker all around St. Martin's Press, Shilts' publisher, pumped up sales by emphasizing the shock value of "Patient Zero."
A large ad ran in the August 23, 1988 New York Times and in the leading advertising industry trade paper, Ad Week promoting California Magazine's publication of an excerpt from Shilts' And the Band Played On," dealing with Gaetan Dugas, "Patient Zero." Illustrated with a photo of Dugas, their ad claimed, "The AIDS Epidemic was not spread in America by a virus. It was spread by a single man." The magazine crowed, "While everyone was searching for a cure for AIDS, we found the cause." It also credited Dugas with infecting "up to 250 men a year."
None of these statements were true.
Gaetan Dugas was not "Patient Zero." There was no "Patient Zero."
In 1984 Drs. William Darrow and David Auerbach Centers for Disease Control (CDC) published the results of a study they had conducted in The American Journal of Medicine. This epidemiological study from San Francisco purportedly showed how 'Patient O' ("oh," the letter, for "Out of California") had given HIV to multiple partners, who in turn transmitted it to others and rapidly spread the virus (Auerbach, Darrow et al in The American Journal of Medicine, No. 76, 1984, pp. 487492). At least 40 people of the 248 diagnosed with AIDS by April 1982 were thought to have had sex with him or with someone who had. The article did not claim that Gaetan Dugas was its source in the U.S., and, in fact, it did not even use his name. The press mistakenly interpreted the designation as Patient 0 (i.e. zero) rather than O. Shilts used this information, naming Gaetan Dugas, as the basis of his sensational creation in ATBPO, though Dr. Darrow asked him not to identify the man by name. Evidence for Gaetan Dugas' career as a premeditated killer intentionally infecting other men - which is how Shilts painted the man - was never produced by the author.
Follow-up re-examination of the clinical data by Dr. Andrew Moss, Dept. of Epidemiology and International Health of the Univ. of California, a few years later showed that some of the data had been misinterpreted and much of it was partial. It was virtually impossible for Dugas to have been the core infected individual of the forty-couple cluster at the center of the study.
The belief at the time the data for the study had been gathered was that the period from infection to the manifestation of the disease was one year. And on the basis of that belief the cluster was constructed which had Gaetan Dugas as its center. But an incubation period of less than two years for the manifestation of AIDS was, in fact, known to be rare by 1987. None of those for whom data were given in the study could have been infected by Dugas, and there was no grounds for assuming that those for whom no data was presented had been infected by him either. These facts were available to Shilts as he was finishing his book, but he did not revise his original scenario in light of them.
In addition, an article in the Journal of the American Medical Association in 1986 reported that in 1980 over twenty percent of the Manhattan gay men in a Hepatitis-B experiment were HIV-positive. This 20% infection rate was discovered after the HIV blood test became available in 1985, and after the stored blood at the New York Blood Center was retested for HIV antibodies. Clearly, the retrovirus was already well established in New York by 1980. This was published in the year before Shilts brought out his book, and it totally blew the theorgy of Gaetan Dugas as "Patient Zero" out of the water. HIV infected men existed in the New York City gay population by the hundreds (at least) in 1980. But Shilts, a lay expert supposedly up to his ears in the latest AIDS research, was clearly more concerned with preserving the drama of the evil demon he had built into his book around than he was in accuracy.
A 1983 study of about half of the first five hundred cases among San Francisco men had produced the fact that about one-third of them had had sex in New York City in the late 70's. Any one of them, or many of a number of them, could have brought the disease to their city. Another debunking of "Patient Zero."
As for Gaetan Dugas, the sociopathic man intent on what amounted to a murder rampage as depicted by Shilts, Dr. William Darrow, who conducted the study upon which Shilts based his character and characterization, found a very different person than the man encountered in the Shilts' book. According to Darrow, "He [Dugas] felt terrible about having made other people sick. He had come down with Kaposi's sarcoma, but no one ever told him it might be infectious. Even at the CDC we didn't know that it was contagious." [Emphasis added.]
Like myself, and millions millions of other people, Dugas had been educated to understand that cancer is not contagious.
Dr. Moss pointed this out when he said, "It is a general dogma that cancer is not transmissible. Of course we now [emphasis added] know that the underlying immune-system deficiency that allows the cancer to grow is most likely transmissible." One needs to remember that Dugas died in 1984, and the discovery of the HIV retrovirus was not announced until April of that year. He hadn't a clue, any more than I or any other person outside of those doing the research.
Gaetan Dugas's panel from the Canadian AIDS quilt, he also has a panel in the U.S. quilt.
Shilts' book ignited a wildfire of hatred, but neither he nor his publisher repudiated the "Patient Zero" label assigned to Dugas in light of the clinical evidence or historical facts that had been available before its publication. St. Martin's Press continued to capitalize on the Gaetan Dugas furor to promote the book.
Shilts was lauded by reviewers at the time, and religious conservatives and hate-mongers adored him, here was the good homosexual giving the lowdown on the tribe of bad gays who had wilfully caused this horrible plague.
No gay person caused more harm to gay men with AIDS, and to gay men in general during these years than Randy Shilts.
He did not, of course, make his own activities in San Francisco's baths and sex clubs a part of his book. And Shilts despite being a gay man, and one infected with HIV, though he kept this latter fact private for some time never made a high profile statement in an effort to put a halt to the horrific train of damage he had set in motion, nor did his publisher. He, thus, remained Mr. Squeaky Clean investigating gay reporter, in a world of depraved "gay clones." And, thus, Randy Shilts kept his own very profitable band playing on. Shilts did not die until early 1994, by which time all of the above information had been available to him for years. But he never repudiated nor apologized for using already dubious data when finishing off his fictional creation of Gaetan Dugas as the monster "Patient Zero." Nor did he ever repudiate the savage unattributed remarks in his book that Dugas was supposed to have made to his "victims." And ATBPO never got the major revisions in subsequent editions which the truth demanded; thus it lives on spreading its misinformation and outright lies, and still generating hatred and shame.
However, as long as that band played on its author was an AIDS celebrity and he and his publisher made a ton of bucks, so why give a rat's ass about anyone else?
During the late Eighties, when the negative impact of the Shilts' book was at its height, I was working as a volunteer with PWA clients of GMHC, taking care of three friends while they died, and spending enormous amounts of time in hospitals and in AIDS-related activities, including the Usenet newsgroup sci.med.aids. In those years it was not unusual in any of these situations to be faced with Shilts' "Patient Zero" several times a week. If the Beatles had been better known than Jesus in the Sixties, as they once claimed, then the fiendish "Patient Zero" was better known than the Devil in the final years of the Eighties. Even at work, I had well-disposed but upset straight people quietly bring up this monster for discussion. The Shilts' portrait of the non-existent "Patient Zero" was a curse that dogged gay men for years.
In calmer times ATBPO would be reappraised, and Shilts would be criticized sometimes deserved harshness for omissions, slanted writing, invented conversations, and the factual errors (and omissions) in the book. But the damage had been done, and Shilts himself was now deceased. To this day, however, his portrait of "Patient Zero" is quoted as fact across the Web and is a standard weapon in the Religious Right hate arsenal...and is even received knowledge among younger gay generations. Shilts was a opportunist author, and the impact of his book was horrendous. Randy Shilts' AIDS quilt panel
In 2016, almost three decades later, the public got a final wrap-up on the non-existent "Patient Zero." October 6, 2016 the BBC featured a story "HIV Patient Zero Cleared by Science." The New York Times followed on October 26, 2016 with a story, "HIV Arrived in the U.S. Long Before 'Patient Zero'," and on November 29, 2016 with more coverage, "The Ethics of Hunting Down 'Patient Zero'."
There is savage irony in the fact that the Publishing Triangle presents an annual "Randy Shilts Award" to honor outstanding books of non-fiction relevant to the LGBT community. If that isn't totally inappropriate and puke-inducing, what is? The man was an opportunist, his book larded with fiction.
At the turn of Fortune's wheel, one is deposed,
another lifted on high to enjoy a short exaltation.
Fortuna Imperatrix Mundi,
THE WHEEL OF FORTUNE
Although I had resigned from an active role in my CIW team at GMHC when Chuck's illness reached crisis proportions, I remained as team secretary. After the death of John, my first client, I had also trained to do clinical intakes of new clients the number of people looking for services had become like a tidal wave. The numbers were so great that limits had to be set on the number of new people that could be seen each week. Almost everyone who called GMHC for help got an in-depth intake interview, which was intended to allow the person to talk about his needs and consider possible future situations, and for the interviewer to explore how GMHC might be of help. These were usually done at GMHC's new quarters on several floors above a bar on the corner of West 19th and Eighth Ave, or if necessary at the person's home or in the hospital. I continued to do these regularly until 1995. During those years I met with gay men, of course, but also lesbians, straight drug users, drag queens, women who had been infected by their husbands, and even a blood-drinker (I swear this is true).
When doing volunteer work as a CIW or CMP I was sometimes bothered by feelings that things were not going well that somehow I wasn't making the right connections. But the intake interviews were something that I just seemed to have a knack for. They were the best work I ever did for PWA clients at GMHC, and the most consistently good work I ever did in my life. I still have vivid memories of some of those many people. And even now, more than two and a half decades later or more, some of these people appear in my dreams once in awhile. I can remember times at the end of a three hour "interview" conversation when the client and I stood up and put our arms around each other as we said good-bye moved, emotionally exhausted, sad and happy both feeling that something good had happened. And this was not an experience limited just to the gay interviewees.
Doing intakes meant that I was at the GMHC offices more often than in the past, and I got to know some of the staff members in Client Services better. Bob Cecchi (who was now the clients' Ombudsman at GMHC) and Gino both worked in the administration and through them I met more GMHC staff and volunteer team leaders. So, while I had experienced the changes at GMHC in these years from the viewpoint of a volunteer on a team a position at quite a distance from the formal administration, of course now I was aware of the concerns and feelings of the men and women on the staff who were closer to the personal conflicts and organizational upheavals at GMHC in those years.
Just how badly some GMHC departments needed to be overhauled was tragically illustrated by something that happened on our team during 1987. One of the CIW buddies had as a client, Sam, an immigrant to the U.S. who had had a series of low paying jobs, and had no insurance nor savings. He was referred to the Financial Department, whose job it was to analyze what benefits a client might be eligible for ( e.g. Social Security Disability, Medicare, Medicaid, NYC welfare, etc.) and to prepare the complicated application forms, check to be sure any required backup was included, and then send the application package to the proper agency and follow up if problems developed. It was the most utilized service that GMHC provided as persons with AIDS were often quickly pauperized by the cost of medications and hospitalizations.
Problems were being encountered more and more often in dealing with GMHC headquarters as the number of people seeking services increased. However, the Financial department had become notorious among volunteers and clients for foul ups.
Sam had completed his paperwork and left it with the Financial department. He heard nothing from any government agencies, but inquiries with Financial produced reassurances that things had been taken care of, help was on the way. Sam's lover, fortunately, had a good job and savings and he began footing Sam's increasing frequent medical bills. There were more inquiries, and more reassurances from GMHC Financial. Sam had more serious complications, requiring more medications and hospitalizations. Months had gone by, the inquiries from Sam and his CIW got more frequent and more insistent. Sam became sicker, the CIW and the team leader appealed to the Financial department head. The problems weren't with GMHC she assured them. The costs to Sam's lover had become staggering, he and Sam were torn with anxiety about their financial situation, in addition to worry over Sam's increasingly poor health. Sam died. It was over a year after he had gone to GMHC for assistance in getting his financial entitlements. Sam, his CIW and the CIW team had received a stream of reassurances from GMHC's Financial department, and they had meant nothing. The team felt humiliated and betrayed.
Our team leaders complained, and Sam's lover sought legal advice. And then it became apparent that yet another client assigned to the team was encountering similar problems and he had the same financial advisor in the department as Sam had had. Stories began surfacing about other problems with this same person.
The members of our team decided that only a desperate act of brinksmanship would bring the situation to a head. They agreed that as each team member's client died, moved or for whatever reason was no longer assigned to the team, that volunteer would decline to take another client. The time would come, of course, when none of the team members would have a client, and at that point the team would resign from GMHC as a group, citing the crumbling level of service. (It is worth emphasizing that this was not a group of hot-head "kids going off half-cocked," but adult men and women who were deeply, even passionately, devoted to GMHC and their work as volunteers.) At the next team leaders' meeting at GHMC headquarters our team leaders informed their peers and the GMHC administrators who ran the meetings of our decision.
Nothing like this had ever happened before and coming as the epidemic was cresting it was a sure sign that the honeymoon was over.
There was some very fast footwork the head of Financial was shunted to another post and immediately replaced on an interim basis by another staff membe; the financial advisor in question was fired. Our team was informed that he had had eighty complaints lodged against him during his first six months on the job, and yet the former supervisor had protected him. Furthermore, in his work space were found many financial application packages that he had never completed and sent out, and unresolved problems just shoved aside.
The new broom swept furiously and well. Over time a relatively short time considering the backlog and problems the new supervisor had things running far more efficiently.
I have no recollection now of hearing what Richard Dunne's reaction was to this the extreme level of incompetence and ass-covering on one hand, and the active and dangerous (in regard to bad publicity) loss of confidence on the part of an entire volunteer team. But it could only have spurred him on, I assume. He had already embarked on a campaign to "professionalize" GMHC. He created a bureaucratic structure staffed with credentialed recruits that replaced the existing grassroots gay leadership at GMHC, though unfortunately this began to isolate the GMHC administration from those they represented as well as from many of its volunteers.
Under Dunne's direction GMHC seemed strangely insensitive to the fact that events within the organization reverberated through the morale of the gay male population of the city. Staff and volunteers certainly talked to their friends about what was happening at GMHC, and I remember that PWA clients of GMHC were very vocal about their experiences. Their news and opinions spread through the gay male population of the city to a surprising degree. Somehow in my estimation there was a puzzling failure to appreciate that many gay men had a very emotional attachment to GMHC. It was their hope, it might even be their salvation and at the very least it was a kind of psychological touchstone in frightening times.
Three specific occurrences, which I wrote down in a journal, aroused concern from friends or acquaintances outside the circle of the formal GMHC organization.
The first concerned Diego Lopez, who was the Clinical Director, or perhaps he was called Director of Client Services. In any case, he was a Vietnam vet and had been one of GMHC's earliest volunteers. He conducted part of the training session which I took part in and it has been my understanding that he designed the training program, which became a model for other AIDS organizations. Diego was certainly at this time one of the more recognizable names/faces of GMHC.
I'd met Diego socially through my friend Bob Cecchi. The last time was in the Pines in '85, as I recall. I found him to be a very self-confident guy with a lot of energy and a sometimes overwhelming sense of humor. He made a strong positive impression on me at the training, and Bob said that Diego was deeply committed to the issues that affected the clients. I also heard from a couple of people that he and Richard Dunne were often at loggerheads, and that Diego was inclined to stick to his guns where the clients were concerned and not defer to Dunne.
Diego became ill with AIDS. The next thing I heard was really shocking news, which came from several staff members. Diego had been hospitalized, and when he returned to work he found that his things had been moved out of his office. It was not long after that he was out of GMHC. The interpretation that I got was consistent no matter who did the telling, and it was that he was being given the message that it was time to leave whether he thought so or not.
The story that traveled on the grapevine was terse and ugly: Diego was a longtime GMHC member who was sticking up for the clients. Dunne was a ruthless "outsider." He used Diego's illness to get him out of the way. (Many people seemed to know of Richard Dunne only as someone who came to GMHC from city government, and had forgotten or were unaware of his long association with GMHC.) A gay neighbor from down the street, David, who knew I volunteered at GMHC, asked me if it was true what happened to Diego, and he repeated the story. I was dumbfounded that it had come through the grapevine to David, and not from someone who was in the administration of GMHC. The effect of the story, whenever it surfaced, was poisonous. Diego died in late September 1986.
I would have rather believed that perhaps Diego really had not been physically or mentally capable of doing his job as a result of his illness, and had been eased out for those reasons. However, a couple of years later something happened which supported the assertion that ill-will had motivated Diego's ouster.
Someone who admired Diego's work and commitment asked Van Riblett, a professional artist to do a painting to memorialize him, which he would then donate to GMHC. (I knew the artist at the time, and saw the painting as it progressed.) Instead of doing the usual portrait, the artist painted a still life of objects, each one representing a segment of GMHC's client population gays, women, blacks, etc. Among the objects was painted a framed photo of Diego. The finished work was beautifully executed, and a tribute to the PWA clients of GMHC as well as Diego. The organization was notified of the intended gift and asked to come and see it. However, no one ever contacted the artist. More calls were made over months; finally someone did appear, who allowed as how the painting was indeed very nice. GMHC would be back in touch to arrange for receiving it. That never happened.
The painting was finally offered to Bailey House, which graciously took it. Perhaps it may still be there. I would like to think that Diego is still being appreciated, even if only passively by a painting hanging on a wall in Bailey-Holt House on Christopher Street.
The "professionalizing" of the GMHC staff was a more complex affair of re-organization. Ostensibly the goal was to fill positions which became vacant and new positions with individuals with credentials from the fields of social work, health, psychology, etc. There were two unpleasant hitches in this process which caused demoralization among many of the staff. I was volunteering at the time, and I knew people who were full-time staff members, and in my opinion the criticisms were totally justified.
First, was the issue of what is usually called "grandfathering." What this term means is that existing personnel/practitioners are excepted from the impact of changes in rules and requirements that would otherwise prevent them from advancing at work or practicing in a field of endeavor in which they were already active. As far as I heard, nothing was articulated about this when Dunne's goal of "professionalizing" was announced. And I can clearly recall the profound negative effect this had on many staff members who did not have the degree requirements or previous experience in social work, psychology but had been serving effectively at GMHC for years. As one employee put it when I bumped into him at a coffee shop, they were going to end up being "squeezed out." Another staff member sitting beside him said, "A polite way of saying dumped."
Second, some of the initial new hires in this drive to "professionalize" looked to be far less qualified than staff members who were passed over. Several, while having the desired academic credentials, had had only one or two post-college jobs and these did not involve AIDS. They would for all intents and purposes be performing at a trainee level while in positions superior to the proven veteran employees who were passed over. Three of these (now "not qualified") veteran staff members that I can recall found positions with other organizations or hospitals and left GMHC taking their first generation experience and spirit away from the organization, and creating a sense of loss and uneasiness among the volunteers who had known and worked with them.
How much unpleasant stories filtering out from the ranks of GMHC staff and volunteers disturbed the general gay male public I cannot gauge. But in regard to each of the incidents cited above I did have gay men who knew I volunteered at GMHC ask me about them. However, there was one event which did have an unequivocal highly negative impact on gay men.
GMHC had donation cans in every gay bar in town, I think. And these cans if Boot Hill and other Upper West Side gay bars are indicative were an emblematic connection many gay men had with the organization. Maybe you knew someone who used GMHC's services, maybe you knew a volunteer, maybe you read something about it in the Native - maybe - but nobody could miss the collection cans. The collection cans stood for GMHC, they were in an actual sense, I think GMHC sign posts in the neighborhood.
How much money was collected from this source I have no idea, certainly not enough to fund the organization by any means. And the job of collecting the cans and counting the money must have been labor intensive, even with coin counting machines. These statements are just conjecture on my part, but they might explain why the new GMHC with the growing demands on it for services decided to do away with them.
Whatever the case, one day they were gone. "Where's the GMHC donation can?" was asked over and over again. There was no official GMHC explanation offered at the bar level that I ever heard about. The bartenders were left to parry with some very surprised men. I remember the disbelief, and then the resentment and hurt. It was like a light went out. "They took them away!" And GMHC headquarters as some remote They was a gauge of gay men's feelings of betrayal. In our neighborhood, which for a time had the second highest rate of AIDS in Manhattan, this was an ugly slap in the face. "What's the matter, didn't we give enough" In a real visual sense GMHC had withdrawn from the neighborhood. Now it was "me" and "us" - and somewhere downtown a "them." The stupidity of not at least posting official notices in the bars thanking people for contributing was grossly ignorant and ungrateful.
The feeling tone (and the illusions) in everyday gay male life which had grown since the early days of the epidemic were running head on into the reality of mainstream demands for formalism and hierarchy and the need for Big Bucks. The people who had founded, volunteered and staffed GMHC in its first half dozen years were disappearing at the same time. Organizational needs and deaths were producing a new GMHC.
Regrettably, it was and remains my impression, that Richard Dunne never seemed to sense, or maybe didn't wish to address, the disillusion developing at the grassroots level. Dunne without a doubt increased the efficiency of the organization in the face of the rapidly growing epidemic, but the manner in which changes were effected showed an incredible lack of understanding of the gay male community and its supporters and how much the grassroots origins of the organization mattered to it. Unfortunately his previous career in the NYC government while it may have honed his administrative skills, seems to have also inclined him to a bureaucratic aloofness
In the closing years of the '80s there was a growing sense of disaffection among those volunteers who were paired with PWA's. And this was communicated to the organization, I know, by the network of team leaders. The "us" and "them" perception in regard to the GMHC headquarters was most pronounced among those men and women who had been volunteering since the mid-Eighties or earlier, than among those who had joined and trained under the changed organization. Gino made the remark, "Next they'll take the G out of GMHC." I thought the comment was his, but I soon heard those same words expressed off and on by many people in the closing years of the decade. On the other hand, the organization was gaining support from outside the gay community. It was around 1987 that real estate mogul, Donald Trump, donated $25,000.
But in one of our team meetings at a low point in August '87, a
volunteer had declared, "We dont need them for anything but client referrals!"
And his remark was well received. It was a hyperbolic assertion, of course the
one-on-one volunteers did need the GMHC headquarters for more than being
assigned to client PWA's and then going on their own way with them. Without the resources
of 20th Street volunteers would have wasted a great deal of time
hunting for the information and leads which allowed them to help their clients
resolve a multitude of problems. Nevertheless, the PWA client's primary bond
with GMHC was the relationship with their own personal, and for longtime
least, the relationship with the client was more meaningful than their
identification with the organization. And it was not unusual, in my
observation, for the PWA-volunteer pair to share a latent or
low-keyed adversarial perception of GMHC headquarters. The view on the volunteer
teams that they were semi-autonomous islands was pervasive by this time in my
observation, and expressed in exactly that geographical metaphor.
It is undeniable that GMHC's overall efficiency had improved under Richard Dunne's administration after its early slump, but at the price of an atmosphere of increasing formality and distance, which became substantial after the organization moved to slick new quarters in 1988 in a six-story building on West 20th Street. The sense of GMHC as a place mutated into GMHC as a space. Anyone who remembered the reception room on 19th Street - and William who worked the desk - knew when they encountered the reception area on 20th Street with its grey industrial carpeting and a receptionist behind a formidable counter that it was a whole new ball game.
West 20th Street building.
A new atmosphere of carping and disappointment was often in evidence at 20th street. Some staff members derisively accused others of using GMHC as a rung on their "career ladder." Standing talking to someone in the Client Services area and looking over a roomful of cubicles each with its occupant bent over a desk, it was a clone of the university computer center where I worked. And the cynicism in the air was familiar. I had been surprised, sometimes even shocked, in my early days working at the CUNY Central Office at how prevalent pettiness and feuding were at all levels there. It seemed a long way from its lofty ideal: Education. However, it was a part of it, and what I had in mind as Education still did occur on the campuses and in the classrooms, despite what I saw at the Central Office. (Perhaps it doesn't need saying, but for someone who had been "around the block" in the NYC work world more than a few times, I was still sometimes inexplicably naive in my expectations of people and institutions.)
In 1989 I wrote after a visit to 20th St. to do an intake interview: "See and hear too much when hanging around 20th Street. Must disengage myself from that kind of contact and stick to doing intakes and leaving. I have reached the point of wanting to know nothing of what is going on there."
GMHC headquarters had taken on the appearance of the classic white collar factory. But changes had been inevitable and necessary, and there is a virtual certainty in the growth of organizations which includes the development of a from-the-top-down attitude and an increasingly ham-fisted management style. And, yet, the volunteer teams managed at the same time, even if very stressed by these changes, to maintain and communicate the spirit of personal compassion, of people caring for and about people. This experience was parallel to that which I saw in the CUNY Central Office as compared with the real work of education which took place on the campuses and in the classrooms.
(Way back in my college years at Syracuse U., I had taken a course in the area of Industrial Sociology. Looking at these years in GMHC now with what remains of the insights I gained from that course, this transformation of GMHC seems quite typical and unremarkable from a textbook viewpoint.)
It is lamentable, though, that the organization seemed to lose respect/confidence in the value of its grassroots and they for it. A more reflective (and humble) look at the spirit of gay comradeship of the early years would have been salutary during this era of change. And something as simple as a cadre of a dozen volunteers doing informal and no-bullshit style PR and spreading information on the streets and in the bars might have made a positive impact too. However, time is an inescapable steamroller, and as the earlier ranks of volunteers thinned considerably from death, burn-out and the need attend to personal commitments, the later volunteer recruits who replaced them accepted the changed organization as they found it. In part this may have been due to the fact that a larger number of the new volunteers were straight women unfamiliar with the earlier GMHC.
In the mid-Eighties City officials had been publicly saying that they shuddered to think of what would have happened in New York if gay men had not formed the Gay Men's Health Crisis and other organizations to care for the sick, educate the public and lobby for attention and funds. And under Richard Dunne's leadership GMHC had developed new approaches in response to the changing nature and scope of the epidemic. It expanded services to provide recreational opportunities and an in-house meals program for clients, and to inform them about experimental therapies and promote these therapies. It also developed a more active public face in a big way. GMHC began to lobby city, state and Federal agencies often to good effect, and it was very active in creating and disseminating accurate information about HIV/AIDS particularly important in light of the virulent homophobia and fear of AIDS unceasingly manufactured by political and religious spokesmen.
Richard Dunne resigned as Executive Director at the beginning of September '89, and he died of AIDS-related causes at the end of December the following year. His obituary in the New York Times gives very specific information on the great changes in the organization during his leadership.
THE AIDS SPECTACLE
The charnel house atmosphere that had settled down over gay life in New York is what I remember most clearly the nauseating stench of shit and puke combined with the piercing, tear-inducing odor of chlorine disinfectants, a shaded light next to someone sitting a death watch, ravings of the demented...closed bars, closed stores, empty apartments...ravaged faces and corpselike bodies...the unceasing spew of Evangelical Christian hatred from television and Usenet, and the homophobia and obstruction of New York's Cardinal O'Connor. And then on the other hand, there was a tiny fringe of HIV-deniers, a handful of medical people who continued to maintain that HIV was not the cause of AIDS, and then the the conspiracy theorists (still around) who ferociously maintained that the government had introduced AIDS into the gay male population as an experiment during the research for a Hep B vaccine.....and the incredible weariness of trying to not give up and fold in the face of what seemed like a madhouse. "Seemed", bullshit. It was a madhouse.
The crucial political battles and the desperately needed medical breakthroughs, and the pivotal, transforming activism of ACT UP in Washington sometimes seemed like bulletins from a distant front coming back to a city under a blitz.
17th cent. "plague doctor"
It was a kind of midway of desperate hope, bizarre promises and outright charlatanism The AIDS Spectacle of researchers, activists, conspiracy theorists, demagogues, good guys and bad guys, gurus and poster boys...chemical cures, talismans, herbs...creeds and messages, and healing crystals and books...and tapes, tapes, tapes cranked out by every channeler of spooks from other spheres and self-anointed healers. Empowerment and quackery were hawked with equal vengeance. And it must have been to some of the public as entertaining and mind-boggling as the public tours of Bedlam madhouse were in the early 1700's.
My life during these years was taken up with
caring for friends, and being a Crisis Intervention Worker (CIW) volunteer for GMHC. These activities
became a second job, and my contact and involvement with other organizations was
minimal. As I said above, what else was going on in this era often had
the quality of news from another front. For that reason I have put
information and anecdotes about these groups together on a sub-page, and here
and there in the main pages there are internal links that will take the reader
to sections of it. If you wish to check out that page from the beginning
(it has material about the PWA Coalition, Michael Callen, Louise Hay, Marianne
Williamson, ACT UP, "innocent victims" - the Ray brothers, Ryan White and
Kimberly Bergalis, etc.) the following link will take you to the top of that
page (use your browser's Reverse arrow to return to this point):
The AIDS Spectacle.
CHUCK - 1987
This human form, his friend's....was foundering under his eyes in the dark flood of pestilence, and he could do nothing to avert the wreck.
My best friend Chuck and a mutual acquaintance, Billy, who was a close friend of his were working together in '83. Both were "not feeling well" with similar complaints; finally they bolstered each other's courage and went to an HMO on West 79th for an examination and blood tests. (There were no tests specific for the HIV anti-body at this point.)
The doctor assured them both that there was no reason to believe that they had "it." However, both continued to be bothered with various symptoms. Billy decided after a while to go to another doctor, Chuck wasn't interested. This time Billy was told that he was definitely symptomatic for AIDS. Chuck angrily refused to see a doctor, and seemed to resent Billy's second visit and what it disclosed. When I saw Billy in October '84 he looked good. Billy was sometimes called "Billy Sunshine." He was quite tall and had a head of thick, very curly golden blond hair I could always spot him on the crowded rush bus we both took across 79th Street and although he was sometimes a bit shy, he had a wonderful grin, which reflected his disposition.
Billy left the city and went back to the Boston area where his mother and sisters lived, and where he could get medical treatment as good as he could get in New York. He was down on a visit to Chuck a year later, and I stopped over. He had lost weight and was pale, but most startling to me was the Hickman line hanging out of his chest. (The Hickman central line is a tube or catheter placed into a large "central" vein close to the entrance to the heart for patients who need repeated and long term IV medications) He was sitting on the couch, I knelt in front of him and held him. A month later he was dead.
His mother and sisters came down to New York at the middle of the month for a memorial service in Chuck's apartment. The number of people crowded into the place must have pleased his family, and that fact that many of them were not younger people Billy's age (he was in his late twenties), but middle aged people that he had worked for or known. I had made a music tape Chuck asked for, and the "service" consisted of people recounting anecdotes about Billy, or reading selections that reminded them of him.
One man read ee cummings' poem on Buffalo Bill, which ends with the line:
Several people gasped.and what i want to know is how do you like your blueeyed boy Mister Death
When everyone who wanted to had spoken, one of his sisters talked about a notebook that Billy began keeping after he returned home. I had not known him as a studious sort of person or even very introspective, but his journal showed a curious and courageous individual looking at his life and oncoming death. Some of what he wrote suggested he may been reading about Gnosticism and the Persian Muslim mystic Rumi. She read one of the last entries, perhaps it was the very last. I have unfortunately lost the copy I made, but it was similar to this translation from Rumi that Karol Szymanowski used for the vocal part of his Third Symphony: Song of the Night.
I and God, alone together in this night!
What a roar! Joy arises,
truth with gleaming wing is shining in this night.
In the months after Billy's death Chuck became almost a recluse and very unwilling to talk even on the phone. It was impossible to know how much was "not feeling well," and how much was depression. Finally, one day late January '86, he surprised me when he telephoned to say he was dropping over, and when he showed up he was in a much better mood than he had been for a long time.
By early June he was full of his usual piss and vinegar again, and out of the blue he gave me what was nothing less than a glowing tribute for "all your support for a year and a half." I was really flummoxed by this! Much of our contact during that time had consisted of telephone calls or visits marked by long, excruciating periods of silence, during which I desperately wanted to be anywhere else but where I was. I had come to fucking dread getting in touch with him. I certainly appreciated what he said, but I felt a bit guilty because what he had felt as "support" I had experienced as something I had dreaded...a feeling that I was, in fact, failing him.
In late July he went on a short selling trip to the Hamptons, when he came back he said he was feeling horrible again. After six weeks of delay seeing a doctor, he had an appointment and was diagnosed with chronic active hep and anemia in late September. My life became frazzled. My first GMHC client, Kevin, was declining at this time, and Chuck's health continued to get worse. Just as my Kevin died, Chuck had to go into the hospital. Once back at home his life shrunk to his apartment again. He was often overcome by lethargy and nausea, but then sometimes he had brief periods of feeling better or at least "better" relative to feeling shitty. (Having experienced a prolonged period of what was diagnosed as autoimmune hepatitis, I did not question the diagnosis he received for his symptoms.)
The bottom fell out in February '87. I had accompanied him to the hospital for a test he was diagnosed with CMV (cyclomegalovirus,) a member of the herpes family which can attack the linings of internal organs or the optic nerve. To me this had to mean AIDS. He was hospitalized, and the next day he emerged from a discussion with the doctor looking horror-stricken. The doctor had said it AIDS.
Chuck was in the Co-op Care unit of NYU Medical Center. This is a special facility where you stay in a hotel-like room, eat in a common dining room and go to a treatment floor for many of your procedures providing you have a live-in care partner or partners with you during your stay.
(right) NYU Medical Center
Wayne (a friend Chuck had taken as a roommate to help stretch his money), Matt (an old friend of Chuck's who just kind of showed up out of nowhere) and myself took turns staying with him. Several weeks later he was released and had to have daily visits from a nurse from the Visiting Nurse Service (VNS.) His nurse, Barbara, was terrific, and she clicked with Chuck immediately.
When he was released and back home, he called me over one day. He abruptly announced that he had given me his general power-of-attorney, as well as his medical power-of-attorney, and I was to be the executor of his will. Furthermore, he wanted to take any cash he had in the bank and open a joint account in both our names so that I could write checks to cover his expenses if he could not. I was used to Chuck's peremptory way of dealing with people, and his streak of almost indomitable stubbornness. This time, however, I sensed he was springing things on me without any discussion out of fear I might refuse rather than from bossiness.
I accepted, of course, though I started to say that I wasn't comfortable about the joint bank account aspect of his plans. But he suddenly leaned toward me and grabbed my hand, and tears ran down his face. "Please promise me ," he pleaded. "Keep me at home."
Tom, my roommate, asked me to ask Chuck if he could come over to visit. They had once been good friends, until Tom had caused a rupture in their relationship by walking out on a job with Chuck's boss without saying so much as a kiss-my-ass as soon as he got his first pay check. It was Chuck who caught shit for this stunt, of course. Tom had never apologized, and they hadn't spoken for years. Chuck was quiet for awhile before he answered my question, then he said, "Tell him no, the time for him to talk was three years ago."
It was mid-April when I realized that I couldn't juggle physically or emotionally my GMHC client at the time ( Ralph + his crackhead girlfriend) and Chuck. I took a leave of absence from being an active CIW volunteer.
Two days later Chuck was back in the hospital: pneumonia this time the lung-shreddng pneumocystis carinii. After almost a month things are looking up; they are telling him he will be able to go home in a couple of days.
When I go back the next day catastrophe! Enormous changes at the last minute. Instead being homeward bound, they are going to remove his left eye! Like what? The CMV had infected it, and since he would soon be totally blind in that eye they want to remove it ASAP in hopes that the infection will not travel up the optic nerve to the other eye. His vision had always been lousy, and he wore a very strong prescription, so this meant that his remaining vision would be very poor.
This is probably the appropriate time to mention Chuck's doctor, the thus far unmentioned man I shall call Dr. X. He was a specialist at the hospital who had been called in on consultation early on; and by virtue of his area of expertise and the fact that he had an office on the Upper West Side, Chuck picked him to be his personal physician. The nursing staff were very contemptuous of Dr. X and their demeanor was so cold when he engaged them it was like watching the iceberg approaching the Titanic. One of the nurses told me that when Dr. X had first begun dealing with AIDS patients he used to stand in the patient's doorway in full hospital drag, including a mask, talking to the patient from a distance, while all the time nurses pushed past him, going in and out to deal with the patient's needs. I found him very remote the two times I saw him with Chuck. The woman who was Chuck's personal GMHC volunteer took him to Dr. X's office for his rare visits and was present during the consultations, she told me that the visits were extremely brief, and that he never discussed Chuck's treatment with him but simply gave him terse orders and dismissed him. I suggested to Chuck that he should consider changing physicians. He angrily refused to even discuss his relationship with Dr. X.
Why, when there were many doctors gay and straight who were well thought of by their patients did he stick with this "uncommunicative" man? I never really found out, but over the time of Chuck's illness some things came out which may have pointed to why: For one thing, medical information seemed to terrify Chuck, so the less the better. (And this had been his attitude, though not Billy's, when they both first went to a doctor together.) And then one day, out of the blue, he began sobbing when we were in his apartment talking. He said that he had been never appreciated how much Billy had suffered until now, he had been unsympathetic and hard on him when he was sick! I got the message that Chuck might have felt that his misery was a kind of pay back. (I had had just a couple of fairly brief visits with them together after Billy had become ill, but nothing I saw or that Chuck said to me during that time prepared me in the slightest for Chuck's "confession.") I have continued to think that under the pain and pressure of his own illness he might have been misjudging things with Billy very badly. Finally, there was the fact that Chuck was strong-willed and could be a bully. One prolonged standoff between Chuck and I several years before had shown me that he would only get hold of his overheated emotions when he was faced down with an iron will. Maybe he needed Dr. X's brusque, authoritarian manner to keep a grip on himself just shut up and obey.
Except as the occasional dispenser of prescriptions, Dr. X. really was a non-player. I thought of him more as the asshole in absentia.
The one thing Chuck had held onto between his aborted release and the loss of his eye was the offer by a friend to use his room in a house in the Pines for a week, if he was able. Chuck had vowed he would be able, and I had promised to go with him if he was...convinced that it could never happen. He was released in late May, and in a month at home he slowly regained some vigor. Now it's D-Day, and we are heading for the Island.
Chuck has a Hickman line implanted in his chest by now, and we are carrying more IV bags than luggage. But we go. And a voice in my head is saying, "I don't fucking believe this. Who do you think you are? The Lone Ranger?"
After we arrive, while Chuck is resting, I sneak off to the doctor to check out the lay of the land in case of an emergency. (The community customarily gave doctors the use of a house for vacation time in return for their holding office hours while they were out there.) I go in, we shake hands and I sit down across the desk from him. This particular doctor was so straight he smelled like a yardstick. As soon as I mentioned being there with a friend who had AIDS, he gets up from the desk and goes to stand on the other side of the room, leaning against a file cabinet. I sniffed under my arms, certain that I must have suffered sudden and massive deodorant breakdown. All I wanted was info on emergency resources, in the unlikely event something super-bad should happen; all he wanted was for me to get off the Island with my friend - NOW! Now, please...now, now, now, he urged. He was obviously terrified that he might be called upon. The visit was obviously pointless; so I left, with our medical stalwart on the verge of pissing his pants.
This visit did make me a bit contrite, as I considered that Chuck's doctor in the city was possibly not the biggest asshole with an M.D. after his name.
However, there was an angel waiting. The house was large, with a pool, and was shared by two owners and two (or three) other guys. Plus there was an additional roommate, Mike, who had a room for the summer in return for being a sometime "houseboy." He was a good-looking, well put together guy just under his mid-twenties and he had never spent any time with someone with AIDS I was to learn later. Except for Mike, the other occupants had already departed to the city for the week. Aside from introductions Chuck and I spent the evening alone the first night. The next day Mike came in to talk while I was in the kitchen making sandwiches the poor guy was clearly walking on eggs, not sure what to do, what to say...etc. At some point I went for a walk, and when I came back Mike was sitting and talking with Chuck, who had moved to the living room to lie next to a heater. He watched while I hitched up the IV, and was (understandably) taken aback when Chuck lifted up his shirt and he saw the Hickman line hanging out of Chuck's chest. The next time, he said, "Show me." The fucking doctor can't get far enough away, and this young guy is saying, "Show me." I felt a pain in the gut like I was going to burst out crying. And from then on, except to sleep, he hardly left Chuck's side. Chuck was not holding up well, and stayed on a chaise lounge in the living room by the stove, even sleeping next to it.
A few times when I got up in the middle of the night to check on him, I heard him and Mike talking. Mike insisted on taking us out to dinner. Shortly after the meal began, Chuck vomited the food he had just swallowed into his napkin. He ceased trying to eat, Mike and I finished quickly with awkward conversation. Late Friday afternoon Mike saw us off at the ferry, and we waved to Chuck's friend who was just arriving for the weekend. We boarded the ferry. It chugged around and headed slowly to the entrance of the harbor, as we passed out into the bay Mike was standing alone at the harbor entrance, waving goodbye.
(Even now, decades later, I could cry when I remember this guy. I hope that he has lived a long, happy life.)
I have said that 1985 was the last of my years twenty-five years of going to the Island. And it was. In no way was this week a part of those years that preceded it.
I was still doing Client Intake interviews for GMHC (one of the interviews was with a guy who had been a Sunday night dancer at The Saint like myself), and I was acting as team secretary. But these activities seemed like a furlough from what was now my "real life." For the rest of the summer Chuck was better than he had been on the Island. Tom came to his terrible end in July, and I had to tell Chuck. Chuck sat down and with some help was able to slowly and carefully write a note to Tom's sister, whom we both had known, even though he could now barely see with his remaining eye.
Late in the spring Gino had gone with me when I stopped in to see Chuck, despite working for GMHC he didn't see people in Chuck's condition coming into the office. He began to cry on the stairs as we left. As Chuck took up more time in my life, I sensed a change in the relationship with Gino. Sometimes I felt that he was treating me with a strange kind of "politeness." In August it became clear why: he ended our relationship because he had started one with someone else he met on a holiday shortly after I had gone to the Island with Chuck.
Chuck began to slide rapidly down hill. He said the light bothered him, and he had Wayne nail black cloth over all the windows now once you entered the apartment there was no outside world. Chuck was practically blind in his remaining eye, he developed a huge ulcer in his mouth, and at one point he didn't even have the stamina to take the entire four units of blood he is scheduled for at the hospital.... On one visit we could only hold each other. Another day when I thought he was too tired to talk, he said, "I am weak not tired I can listen." He was no longer always aware when he was urinating or defecating. I got plastic sheeting and diapers from Alan, who had been a neighborhood pharmacist as long as I could remember. A fine man, and a kind one to many gay men in these years.
October 18th, coming home late from Chuck's, I wrote:
"At last I see Chuck dying, and I feel in myself his dying for me. He is in pathetic condition: practically physically helpless, devastated with fever attacks, too weak to be able to take care of his basic needs, BUT totally free of any outside concerns or hassles, no anger now. Clinging and filled with gratitude for the smallest things."
One Saturday morning, just as his sister from the suburbs arrived to visit, Chuck pitched into a crisis. Barbara the VNS nurse and I had to call an ambulance when his doctor didn't answer our emergency call. Chuck and his poor sister and I had a Wild West ride to Beekman Downtown Hospital at the bottom of Manhattan. He rallied. In two days Chuck checked himself out of the hospital, and the doctors called me at work, telling me he's dying, there's nothing they can do for him that the three of us can't do.
I had started hiring home health care workers just two days before this happened, and swung into high gear on that again. I told the agency that a "candidate" had to pass three tests: Chuck had to like them, they had to be able to deal with the turnstile appearances of the three of us, and they had to be willing to let Chuck do absolutely anything he wanted that was not going to cause immediate harm or pain to himself. The acid test turned out to be sitting on a kitchen chair in front of the open refrigerator door with Chuck for an hour, while he held your hand and rhapsodized over the beauty of ketchup bottles, tuna salad leftovers, yesterday's soup, Chef Boyardee spaghetti cans, etc. a kind of Andy Warhol meets Steven Levine approach to death and dying.
And such people did exist: first, Ruth full of razzmatazz and good humor (Chuck called her "Pearl" because she reminded him of Pearl Bailey, and sometimes I think he thought she was her); then Betty solemn, agreeable and imperturbable. And, finally, the woman we were waiting for, the magical if somewhat far-out Rosa. With these three incredible black women the day was covered. Wayne lived in the apartment, and Matt and I started staying overnight off and on too. One Tuesday night he toured the apartment, as if in a trance, sometimes seemingly not aware of us at all, picking up objects talking aloud about what they were, sometimes talking to them.
"He's saying goodbye to his home," Rosa said.
From that night on he was delusional most of the time. Thursday he said at one point, as if it were a comment about the weather, "I'll last two days." Late on Friday night, the three of us were there and Rosa too. His bedroom opened through an arch onto the living room. He asked for music, Keith Jarrett's Kφln Concert. In fact, he insisted on it it played all night on auto-reverse; every time we stopped it, thinking he was asleep, sooner or later he would say he couldn't hear it. He got up, carrying his pillow. He wanted all the lights out. We lit a couple of small votive lights to be able to see each other. Later he went and lay down on the floor, blocking the front door of the apartment. We covered him with blankets and gave him a pillow, for awhile we lay down beside him and then we and let him stay there. Not too long after he woke up, and we got him back in his bed.
Rosa had seemed a most unusual person with a very streetwise manner in some ways and she handled Chuck perfectly, no matter how sunk in delusion he was. She had asked a lot of peculiar questions of each of us and had made some disturbing observations, all of which seemed to point in the direction of something psychic, for lack of any other appropriate label. I found out she had a "sanctified church" background, but had left to be out on the street where she found less "calling down" of people and more "teachers" in unexpected persons. Several times during the night she began to tremble violently, and spoke in an awed voice of powers coming and going in the room. I sat beside her, thinking, and decided that I had failed Chuck: I had been postponing the natural and merciful end that I had promised he would have. Tomorrow, after the nurse came, I would stop all IV medications and hydration.
At that very moment Rosa seized my hands in hers, and shouting, said, "Your hands are going to do great things!"
It scared the piss out of Wayne and Matt, and I really could have used a cup of Valium just then.
Waves of incredible tension and calm alternated all night and that fucking music never stopped. From time to time we would creep over to the door to see if Chuck was still alive, and then hold his hands for awhile. At dawn it was Halloween he abruptly got up, walked into the living room and lay down on the couch.
The Visiting Nurse, Barbara arrived, she did her stuff, and then I called her into the dining room to talk. I was "taking over" the medical decisions, I told her, as I had the Medical Power of Attorney and Chuck was clearly not competent. I told her that I had decided to terminate all mediation and hydration. Rosa left, Betty came and we sent her to the laundry with the last of the sheets. I asked Barbara to call the VNS supervisor, who could not have been cooler and nicer, I asked VNS to call Chuck's doctor (as I hated his guts, though he seemed to have none.) Chuck was completely incontinent but it was all blood and tissue, he was lacking platelets. Barbara said goodbye. I unhitched the IV, and we sat there. After awhile I took his pulse. There was none. When Betty came back we asked her to come and look at him. She stopped at the doorway and looked in. "He be dead."
After some time to collect ourselves, we got busy. Then the phone rang. It was Chuck's sister calling from the airport, where she was meeting her parents who had come up from Florida I had to tell her that her brother had just died. Wayne went from window to window, pulling off the dark cloth coverings that had been stapled to the frames, and throwing them open. The funeral home had to be called, and then the doctor, who had to agree to sign a death certificate before they would come to pick up the body. Wayne and Matt crawled out the living room window and sat in the sun on the roof over the building entrance. Barbara, the VNS nurse, called to see how Chuck was doing. Rosa called she said, "I knew he would go today."
I heard Wayne shouting my name from the other room at the top of his lungs. I ran in. He was horrified. We had not pulled the blanket up over Chuck's hands and face. Flies had come in through the open windows while we were doing other things, dozens of them covered his face and were crawling into his ears and nose.
A month after Chuck's death on October 31, 1987, all of the busyness that comes with death the funeral, paying bills, lawyers, breaking up a home was pretty much out of the way. I had moved out of the old Upper West Side neighborhood earlier in the year after twenty-seven years there a part of the gay attrition caused by the death and disruption of the epidemic. Matt lived north of NYC in the country, and Wayne had decided to move up there with him, these were the two other guys who had helped take care of Chuck. I was now in a furnished studio apartment on the top floor of a (literally) crumbling Federal house right off Stuyvesant Square, just a bit north of the East Village.
View of part of Stuyvesant Square.
It was a historic and very pretty patch of the city, though after dark the park was populated not only by dog walkers, but addicts and dealers too, and some nights you could hear burglars walking across the roof and testing the trap door on the roof which opened onto the top floor.
Anti-gay graffiti had popped up around town after the "Disco Sucks" riot. On my rare daytime trips to the East Village I had thought there was more there than elsewhere, which I attributed to the fact that the neighborhood attracted many young white visitors. "Hate gays" and "kill fags" seemed to have become the latest graffiti fad. With the epidemic, scrawlings about "AIDS fags" had joined the hate parade. Now that I lived in the Stuyvesant Park neighborhood I was often in the East Village, or I often went down Bowery to Chinatown.
I saw that the homophobic graffiti was thickest around the area of CBGB, a famous rock club on Bowery I used to wonder how many of the punk rock customers would have liked to bash me. Each time I passed that area it felt like the place made bad juju!
CBGB punk rock club
Gino made attempts to be supportive, but his new relationship was already proving a contentious one, and by nature he was very fearful of any emotional deep water besides. Our phone calls and occasional visits really hadn't much substance. I was rapidly drifting into psychologically bleak terrain. I was physically and emotionally lethargic, sleeping or just lying under the covers in a numbed out state of mind, as often as I could.
One weekend late in November I thought a lot about Chuck, not the time he was ill, but the many years before. I wrote down how much he had helped me, and ended by saying, "He is the person I would go to now, but that is part of what I have to come to terms with."
A few days later I wrapped up a half dozen things in brown paper and put people's names on them, just small things I'd had for the past few decades. The next night I took out a large bottle narcotic painkillers, plus some stomach tranquilizers, that I had taken from Chuck's place when we cleaned up. I called up Wayne in the country, and in the course of a wandering conversation, we suddenly fell into the middle of what had been going on with me. And though I didn't say exactly what point I had reached that night, he hit on the right on track and provided enough impetus for me so that I put that stuff away when I hung up. I lay awake all night; there were no great changes with the sunrise, it just seemed a matter of having the will to plug away with what was at hand. But I still did not have that will.
However, what was most "at hand" was obvious.
I told GMHC that I was ready to take another client. In truth, I was probably no more "ready" for that than I was to be midwife to a whale. But I was relatively healthy and able at a time when thousands of gay men were dying; it seemed shameful now (even evil, perhaps) to throw that away when so many others around me were perishing.
For a little while I did feel better about where I found myself, when I had thought I might read myself out of it. I started by returning to the Meister Eckhart book I'd bought a decade and a half ago, and then that seemed to point to another Medieval mystic, Hadewijch the Beguine.
Beulah Witch, not Hadewijch
(Her name almost always conjured up the image of Beulah Witch from the 50's Kukla, Fran and Ollie TV show!) And from there briefly to a fellow named Ruusbroeck, until I lit on an anthology of Friends' writings. John Woolman and Thomas R. Kelly may have had something to say that I was really capable of grasping. And then something there pointed me toward Ouspensky a difficult read, to say the least, and I only made it about a quarter of the way through one book. (Good grief, please don't blame the Friends for this. I have been at a loss for years to find what it was in that reading which led me to Ouspensky.)
But this "uplifting" reading wasn't really doing me as much good as I wanted. Of course, what I wanted was a "magic pill" that would make me feel "all better," and I was working a con, trying to make myself believe that this esoteric reading would produce an equivalent effect. However, I wasn't together enough to realize (or admit, probably) that I was resorting to this spiritual reading program with a hokus-pokus attitude more appropriate to astrology.
I had neither the aspirations, nor the grace of these people I was reading and in the case of the Medieval mystics, especially, not their belief in a God either. All too often I found myself, particularly with Hadewijch wilfully twisting meanings to fit my own dealings at a very mundane and selfish level.
And yet I didn't doubt the truth, whether it was about Divine Love or human love, that one is only fully committed to the beloved if you are ready to give him/it up. That struck a resonant chord, at least, in that whether it was Chuck with AIDS or the port-in-the-storm relationship with Gin: this was at the crux of the matter. I did ignore with determined effort, though, the acceptance of desolation which mystics were also emphatic about. Hadewijch was particularly annoying in this respect, and I finally decided that she was entirely too smarmy to deal with and needed to be put in her place which was back on the bookshelf! But then, she and the rest of the Medieval cohort were having ecstasies over an ineffable Divinity; whereas, truly, I believed in the substance of these not at all. Clearly, I was not in their league in more ways than one.
However, I wasn't ready to give up on my spirituality-for-an-atheist reading program. I had gotten bogged down with Ouspensky, who while interesting, was a pisser to read. In discussing his own thoughts, he made remarks several times to the effect that the Buddhists had gotten it almost as right as he did. Finally after one tough read, I thought, well, if they only "almost" got it, maybe they are only almost as enervating to read. I browsed around the old Weiser's book store on Lex and 24th, and picked up a copy of what looked practically like a Buddhist primer, What the Buddha Taught by Walpola Rahula.
Turned out this book has never been out of print since it was first published, and had become something of a perennial beginners book. I read it, and for me, it was okay, the train stops here. A great deal of it made sense to me, and I felt I'd gotten ahold of something that just maybe I might turn myself around with or maybe just go ahead with as I was.
There were several Buddhist centers near my neighborhood, and at the first meeting I ventured to I met Liudas, a gay Lithuanian-American guy, and we hit it off as friends. He was deeply attracted to the Tibetan tradition of Buddhism, though I was not it was too far from the simple Theravadin tradition which originally struck me in Walpola Rahula's book. Nevertheless, about a year later I did later accompany Liudas upstate in July '89 to stay at a Tibetan monastery for the weekend, and I scattered part of the ashes a friend, there. I also "Took Refuge" while I was there, which is a simple rite of commitment to attempt a Buddhist lifestyle, perhaps the simple equivalent of joining a Christian religion without such rituals as baptism or being Born Again.
Later on I began attending a Korean Zen center which was close to my furnished digs at Stuyvesant Square. I liked meditating with a group, and the people all American whites, Hispanics and blacks, no Koreans were totally accepting of me as a gay person. I was a member for a couple of years, and participated in most of the activities of the center. I found the people very warm and friendly, which certainly helped turn things around for me.
The Zen traditions and ceremonies, like the Tibetan, did distract from what had attracted me in the beginning, and in late '91 I began to meditate on my own and attended a couple of retreats at a "plain vanilla" center in Boston. Finally, the journey that may have begun with buying the Meister Eckhart book to read on my lunch hour many years ago seemed to have found a direction, if not an end.
1988 - 89
MARK AND JAMES - AND WELCOME BACK TO THE AIDS EPIDEMIC
In mid-January '88 I was assigned a client, Nessim, a very self-possessed, sophisticated young man of Coptic descent. He had a lover, Erik, a handsome Swedish model, who was recognizable as having been the billboard and magazine face for a famous vodka. Erik was often busy with work, and my role seemed to be mostly to run a few errands before the stores closed and listen to Nessim, who could hold forth intelligently on almost any topic it seemed and would then quiz me afterward. It was an enjoyable and not very demanding relationship. I think it was probably as good for me as it was for him.
Being committed to seeing Nessim and helping out kept me putting one foot in front of the other. Chuck's sister and I were in touch occasionally, and so were Wayne and Matt, and these contacts, even though they were from a distance helped a lot. A "friendship," with increasingly less substance, sputtered along with Gino, and when he moved to another city with his boyfriend I found, not unsurprisingly by that point, that it didn't leave much of a hole in my life.
At work had been moved out of our pleasant, modern quarters at the Computer Center on West 57th Street to some grotty windowless space at Baruch College created out of former storerooms. This was great for me as the college was located only about fifteen minutes from the Stuyvesant Park area where I was living now. However, the move was an indication that our department had fallen out of favor, and my boss (the head of Management Information Services) was summarily dropped after years of service to the University, with hardly as much as a kiss-my-ass. The department was in a state of turmoil; I was without a boss and had lots of free time.
The newsgroups on the Internet were beginning to be in a furor over the AIDS epidemic and some groups, sci.med.aids in particular, were full of important information provided you had computer access. And in these days many most people did not. I decided to cull sci.med.aids and John James's unbeatable publication, AIDS Treatment News, and anything else helpful that I came across, and make it available to my team members in a hard copy. I had my terminal, an office alone and Ventura software...so every month I put together a pretty spiffy looking personal publication I called AIDSinfo Digest, ran off copies on a laser printer and gave them to our team leader to distribute. (All the material was fully credited, though for articles that were basically interchanges from newsgroups I deleted the computer ID's and usernames.)
Things seemed to be lightening up a bit in my life.
One of my friends from my former West Side neighborhood was a younger guy, Mark. I'd met him earlier in the 80's when I'd been making tapes for the Golden Ass cafι and wooing their cook, with some success at both. Mark had been the waiter. The Ass closed, and I hired Mark when we needed a temp in our office, then later I got him an interview in the CUNY Computer Center where I had worked and he was hired there full time. After a relatively short time he left. He was given all the work formerly done by another employee who'd quit after he was hired, in addition to his own but with no increase in pay. This had continued, in spite of the fact he'd done both jobs extremely well, and streamlined his part of the operation. Understandably he said bye-bye as he was clearly being played for a sucker.
We had become friends, and sometimes I had gone to The Saint on Sunday nights with him and his friends. A friend of mine, Bill, had panted for an introduction to Mark one night after Mark came over to chat while I was in Boot Hill. And to my great surprise they ended up going together very soon after I introduced them it was a combination something like Tabasco sauce and cherry-vanilla ice cream, in my estimation. What did I know, I wasn't Dr. Ruth.
One day in mid-February Bill called to tell me that Mark had had to be admitted to Roosevelt Hospital because he had developed an extremely serious infection after a dental procedure. A day or so later the hospital told him that he had tested positive for HIV. He was abysmally depressed, and Bill, I thought, seemed strangely removed from Mark, considering the circumstances. But Mark pulled it together and returned to work as a waiter in a bar/restaurant up the street from Boot Hill.
Things went along well enough. Nessim, my GMHC client, while very weak was otherwise okay, and Mark's life as far as I could tell went back to at least the appearance of normal.
One morning in the second half of March 1988 a red-headed guy peeked into my open office doorway, grinned and said, "Hi, do you work at GMHC?"
(right) James L.
Volunteer, not work at but who was he? Then an almost audible click: his name was James, age thirty-three and a part-time rent boy/part-time undergrad at Baruch College. And I had done his intake interview about a week before! He was HIV positive and had questions about various things. He continued to drop by, and a bit diffidently one day asked if we could have lunch, and another day dinner when his afternoon classes were done...and very soon he had established this as a routine. He was the one who was initiating the socializing, however, as I said in my journal, "...he makes me feel good and that's good for me."
April is my birthday month, a fact I have not been sentimental about since age ten; nevertheless, the friendship was a nice surprise present in bad times. James and I had Easter dinner with Gino and his friend, and another guest. And it was a very relaxed and pleasant evening. The following Wednesday we went to hear Marvis Martin, a singer who had gone to school with James's former lover (now deceased), and afterwards we stood in line to congratulate her. She was very warm with James, and this meant a great deal to him. We went and had dinner in Hell's Kitchen, where he lived, and then went to his place and watched TV for a while. As I noted at the time, it was the first time in almost a year I had been "able to let go and just be part of what was happening without some intense, if small, part of me held in watchful reserve."
A couple of days later Bob Cecchi told me that he was going to resign as the Ombudsman at GMHC a function that he had perceived a need for in the early days of the organization, and which he had created and strengthened so that it was the organization's second most used department by PWA's. Bob had been diagnosed in '81, and had been with GMHC since its earliest days. This work this service had turned Bob's life around. It was an achievement that had been honored by the City and by the governor. Bob and his two staff members, Bob and Catherine had made a major difference in how people infected with HIV were treated in New York State. But he told me he did not feel strong any longer and felt he might only have a year to live. He wanted "one last summer."
And then April took a swan dive into an egg beater.
A week later I when I saw Bill...and then Mark. Bill sounded as if he were actively behind Mark, which hadn't seemed to be the case when he had just been diagnosed. But when I saw Mark, though, he looked very "distressed." And very pale.
James and I developed a close relationship, but not a sexual one. We had a busy social schedule he'd gotten free theater tickets from GMHC for us for several shows, he came over to use the large table in my apartment to do taxes (this was one of his sources of income) and we were going out to the movies. I noticed when I visited that he had a copy of the book A Course in Miracles in his apartment.
A show James and I saw, lots of fun!
He got a "cold" late in April. It got worse, and one day he came into my office having terrible breathing problems. I took him down to my place to rest, and I was sure he was getting PCP. His doctor said he would schedule a broncoscopy, but nothing happened. I slept over at his place with him for two nights, and he spit up blood. His apartment was one large room in a seedy old building on Tenth Avenue with financially struggling straight people and drug addicts for fellow tenants, and only enough space in it for a fold-out futon bed that doubled as a couch when closed up. To sleep next to someone, especially someone I cared about would have been wonderful, if it had not been for the fact that I got almost no sleep lying awake anxiously listening to his breathing and his coughing. But remarkably, he started getting better.
Then I got a frantic phone call from a woman I didn't know. She was a friend of my GMHC client, Nessim. Erik, Nessim's lover, had had a seizure while on a photo shoot he was in a hospital in a coma, not expected to live.
I spent the next week busy as a bicycle messenger. Someone managed to get Nessim to the hospital once. James got worse again. Nessim's friend called to tell me Erik had died. When she told me what day, it was my birthday. I'd missed it. I helped James get to a specialist at St. Luke's Hospital for tests. He had pneumonia and asthma. Welcome back to the AIDS epidemic.
However, by the 10th of May James was doing much better, but on that day I got a frantic call from Nessim. He had run out of oxygen which he had needed off and on because his lungs were so damaged. I ran over and stayed with him till late in the evening, and by the next weekend his friend, Barbara, had convinced him that it would be better if he went to stay with his mother in the Bronx, instead of living alone. I went over and said goodbye.
The rest of May was very pleasant. I spent a lot of social time with James, and we event went up the country and visited Matt and Wayne for a weekend.
the stream at the house in Katonah.
Matt was long-term house-sitting outside the ritzy town of Katonah for a celebrity couple who spent most of their time in Hollywood, and while the house wasn't palatial, it was large and comfortable and set on a big piece of land with a large pond and stream. Both James and I enjoyed it very much. I had told my GMHC team that I would take another client as Nessim had probably relocated for good, but I wanted someone who didn't require a lot of attention. I heard nothing back.
James and I continued to go out here and there, there was work, of course, the monthly GMHC team meeting, intake interviews at GMHC, and I went uptown and saw Mark, who looked good I was truly beginning to feel that in the midst of what had clearly become a plague, my life was attaining an approximation of a pleasant normalcy nevertheless.
THE BEGINNING OF A LONG GOODBYE
The last week in June I got a call from Bill: Mark had become weak enough that his doctor had decided to put him in St. Luke's Hospital for tests and observation.
Vintage photo of St. John's Cathedral & St. Luke's Hospital.
This was kind of a pain in the ass as far as visiting went, because it is way up on the Upper West Side, next of the Cathedral of St. John the Divine and a long couple of bus rides from where I was living. I went up there every other day after work; he was becoming bored and untalkative. Another week passed.
It was on a visit during the day on Saturday that I ran into another guy. His name was Rick, and he said he was a friend of Mark's. He wasn't one of the gang of guys Mark had gone dancing with at The Saint some Sunday nights, and I couldn't recall Mark mentioning his name. Turned out that he had met Mark and Bill in Boot Hill.
I marched in the Christopher Street Liberation (Gay Pride) March on Sunday. I'd marched in the GMHC contingent in '86 and '87, and both times it was a high as the crowds lining the route often broke out in loud cheers when GMHC passed. We went by St. Patrick's Cathedral and most marchers shook their fists and chanted, "Shame! Shame! Shame!" Almost across the street cordoned into a space by Rockerfeller Center were the usual nest of hissing vipers Orthodox Jews, Evangelicals with their placard and some Catholic wingnuts, the cream of New York's religious life shrieking, shouting and spitting, their faces twisted with hate like frenzied beasts in a cage. The GMHC contingent wasn't getting as much applause as in the past two years, but I took this as a sign that for lots of people we were becoming an expected part of the scene which I saw as good thing. At Madison Square the march stopped to observe silence for those who had died in the epidemic, and then a huge cluster of balloons was let go into the sky always a very tough moment for me, for everyone, probably. But as our contingent moved below Twenty-third Street something really shocking happened. A few people booed as we passed. I was walking next to our team leader, and he turned white and looked stricken. A few blocks later it happened again, and there was some hissing. And a third time in the Village. (This happened again the following year as well.) There was a lot of talk about it by team members afterward, and the consensus was that these outbursts had probably been from friends of guys who felt that they'd gotten fucked over by GMHC in one way or another like the client our team had who never received any benefits because of some jerk-off in the Financial department. But the organization was working hard to tighten up the bureaucracy. Or maybe it was just guys who resented the changes in GMHC, the bureaucratic distance that had replaced the informality of the early years. Maybe it was Act Up zealots. Didn't know what the reason was, but it was a bummer. I took the train uptown and visited Mark again.
Monday he was the same, Wednesday he seemed confused. Thursday after work when I stopped by, I was certain there was a big change. Mark was very out-of-focus, illogical and restless it seemed too extreme to be cabin fever. I talked to a nurse, but according to her he hadn't been diagnosed with anything specific. Friday, July 8th, Bill called me. Mark had had a massive seizure. He was in the ICU in a deep coma and I wouldn't be able to see him.
I decided to go up Saturday anyway, and I was able to see him in the ICU. And see it was. Just a few days ago I came across a description in David Wojnarowicz's book, Close to the Knives, of a hospital visit to a friend of his. He shows the scene almost perfectly:
"There he is propped up in the white sheets with all the inventions of his day leading in and out of his body in the form of tubes and generators and pumps and dials and hisses and his eyes are bare slits with pearly surfaces glimmering inside them like somehow they've stopped reflecting light. "
The only note I would add was the regular high-pitched peep from one of the monitors. As I sat there, I could not help listening to it, wondering if its pattern of sounds was changing. Was it slowing down, speeding up? It drove me nuts, and I couldn't stop looking at the jagged lines of light that bounced up and down across the screen.
I came up Sunday, and Rick did too. Monday part of Mark's family arrived two of his sisters, who lived in New England, and, Mary, his very frail mother, who came up from Florida. (She had great difficulty breathing in the NYC air.) I liked them very much right away, really straight-from-the-shoulder working class folks, and very courageous. I thought Mark was done for, and no one of us had any reason to think otherwise. Monday I went directly to the ICU before going to the visitor's lounge to see Mark's family. I sat down beside the bed and took his hand. Mark opened his eyes and looked at me...his expression changed, he may even have smiled, I can't remember. He was going to live. I rushed outside, and his family were sitting together, looking relieved he had begun responding earlier in the day. On Tuesday he was even more responsive, and he was going to be put into a room on a floor devoted to AIDS patients.
* * *
I'd been assigned a new client, Axel Schmidt, a Swiss in his early sixties (as I recall). He really needed very little from me it seemed, and that was fortunate because I got a call that Nessim, my former client had moved back into his old apartment. His mother, whom he had gone to stay with, had died unexpectedly...this after the loss of his lover just ten weeks before. And whether he was my official client again or not didn't matter, I started visiting again.
So, I was like a novice juggler visiting Mark usually five times a week minimum, than a visit to Axel and then Nessim too.
Mark was in St. Luke's Hospital way up on the West Side, and Bob Cecchi lived on W. 76th, James on W. 46th and Nessim down in Chelsea so if my timing was good I sometimes got to see two friends on the day.
Yes, I still had a day job, but it was almost like a vacation to be there.
* * *
Mark was like a beached shipwreck after a hurricane. One of his arms was very weak, and the hand on that arm kept curling up in a fist. One leg was weak, and he had no control over the foot. His esophagus did not function at all well, so that he was receiving nutrition through an IV so he wouldn't choke to death. He was also incontinent, and seemed to have only occasional awareness of the fact that he had had a bowel movement or urinated. Where formerly he had been a very quick-witted and articulate guy, now his reactions were very delayed and vague. While he said very little, his voice was clear, if very soft, and what he said was logical.
Mark's doctor, Dr. X., was as big a problem as his physical situation. I remembered several years before when Mark had been working for me, he complained that his doctor at the time (a successful A-gay) treated him brusquely and had made some remarks that Mark felt were dismissive of him. I had been surprised because of this to discover when his AIDS problems began that he was still seeing this same guy.
Rick and I talked things over with the family, and we agreed that we would visit him and take care of him physically, and Bill would manage all the paperwork connected with insurance, Medicare, etc. When he became better enough to be released from the hospital, we would see what "better" allowed him to do at that point. Mary, his mother returned to Florida, his sisters to their lives in New England. Rick and I came every day. He worked at night, so he came in the morning and left in the afternoon; I came up after I got out of work at five and left when visiting hours ended at night.
Mark had carelessly never designated Bill, or anyone else to have his medical power of attorney in the event he was unable to make decisions, or he may have indicated on his admittance forms that his mother was his primary contact. (I no longer recall which.) Mark's doctor insisted that he, therefore, had to clear all medical decisions with Mark's mother. (In any case, Mark's father and sisters all worked during the day.) Mary was very ill. She had had TB, and though she had recovered from it, it had devastated her and she was extremely weak. When the doctor began calling her, she requested that he consult with Bill, who had more knowledge and was closer to the situation. For whatever reason he would not do this. (This guy was an A-gay with a very "lofty" demeanor, and it struck me that he had no respect for Bill nor any of the rest of us. You know the type, A-gay=a-hole.) He continued to call Mark's mother, and his calls were having a bad impact on Mary's emotional and physical health. He continued to insist that he could not consult with Bill.
The IV nutrition would be not sufficient to keep Mark functioning well over a long period of time, and his ability to swallow without choking showed little improvement.
An unlikely deus ex machina appeared in the form of Carl.
This was another friend of Mark's whom I had never met until now. He was a cute fellow in his late twenties, with a Texas accent and a motor mouth that I occasionally wanted to fill with a large towel or a bath mat. It was matched by a manic energy that didn't quit - until after two or three days as a human whirlwind he would disappear back to the studio apartment he shared with his father in the neighborhood and sleep for thirty-six hours at a stretch. Unbelievable as it seemed, he was HIV positive and had had some minor opportunistic infections. Because of his hospitalizations at St. Luke's, and the fact that he had never stayed in bed while he was there, but roamed the entire building day and night, he knew everyone and everything about the place.
He promptly informed us about Dr. C., his own doctor, who had been convinced early on that many PWA's died as a result of malnutrition as much as from disease. He had published articles on his work in this area, and seemed the perfect guy to consult. But how to do it without crossing swords with Mark's doctor, and without having this guy put Mark's mother on the rack again? Leave it to Carl. He explained to his doctor what the situation was, and the doctor agreed that if Bill would ask him to visit Mark, he would drop in the evening when Mark's doctor would not be around, but we would be.
He proposed fitting Mark out with a gastro-intestinal tube, and then a prepared mixture of concentrated nutrients could be pumped into his stomach over a period of several hours two or three times a day. It would require quite minor surgery in which a small incision would be made in Mark's abdomen and stomach for a small length of tube to be inserted, which would then be taped in place so it didn't fall out. A longer line of tube coming from the pump would be attached to this for the feeding mixture.
There was a certain amount of vagueness about the protocols of what happened next. But Mark's doctor was receptive evidently, though I gather that all the subsequent arrangements must surely have been in the hands of Dr. C. Shazam! One afternoon when I entered the room, there was Mark with a tube sticking out of his belly, and a mechanical gizmo and a bag of feeding mixture on a metal pole beside the bed.
But if we had now entered the Age of Medical Marvels, we had also entered the Age of Liquid Shit...an endless river of it. Mark's incontinence had been a problem before, but as he ate almost nothing a diaper had contained what little feces he produced. He had had to be checked, washed and changed mainly because of urination.
The nursing staff on this AIDS floor, and perhaps the nurses aides too, all volunteered for duty here, I was told. Of all the hospitals in the city that I became familiar with during these years, the staff at St. Luke's was consistently tops. They knocked themselves out to provide attentive care, and were consistently sensitive to the patients and their loved ones. They and the doctors welcomed Rick and I, and allowed us to take over as much of Mark's care as we were capable of. And Carl sometimes stayed in the room well into the early morning hours, and even all night.
At first most of our work was changing and washing Mark, and remaking the bed time after time each day. And then there was the ordeal of trying to see if he could eat small amounts of food in the hope that eventually he would recover the ability to eat enough that the artificial feeding could be dispensed with. Communication with him was extremely difficult. His response to even simple questions was very delayed, as if he needed to think about each and every word, and his answers were limited to three or four words. He did, however, seem to recognize and remember everyone in his life. But, to be blunt, he was only a little more than a zombie.
Nessim was still living with his mother, so my obligation to him had ended. GMHC had another client, Andrus, who lived in Alphabet City, not too far from my apartment in Stuyvesant Square, and he seemed to want nothing more than an occasional visit, so I agreed to take the assignment.
The major question with Mark was "What next?" And given his condition that question was really probing in the direction of How much time? Dr. C. response was a question: Is there one thing that Mark wants to do more than anything else?
And there was. Bill had a tiny, ticky-tacky house north of the city in a woodsie rural area very close to the Shawanagunk ridge near Dwaarkill that Mark loved to go to. Dr. C. said, "Okay, let's get him able to go there at least once."
Rick and I kept up our same schedule as when Mark had been in the ICU, and Carl appeared and disappeared like Tinkerbell with a Texas accent. Rick was determined to get Mark walking again, a project that I was dubious about. Mark, I noticed, though no more spontaneously communicative than before, was definitely crabby when I arrived after work. After crossing paths with Rick a couple of times on Saturdays, and seeing the interaction between them on this rehabilitation project I understood why. It was a major contest of wills. Rick was practically a drill sergeant, and Mark was resisting the drill with all his might or did he really not grasp what it was about maybe. I wasn't sure.
It was clear to me that if I continued the drill when I arrived in the evening that Mark might well end up hating us both. In any case, the fact were that I was tired when I arrived after work, and Mark was also much less "with-it" than he was when I arrived earlier in the day on weekends. So, I created the role of "Good Cop" for myself. Rather than formal exercises, I sort of guilt tripped him into letting me help him out of bed, because it would make changing the stained sheets easier for me; then it was the short journey to the bathroom to get him cleaned up with him leaning on me and being half dragged there.Without the formal physical exercises, I had more time to talk with Mark than Rick did and I knew him much better, in any case. But "talk with" is not an accurate description. We would sit in silence for long periods if I waited for Mark to initiate something, and if I talked he tended to have few responses, even though he gave the appearance of paying attention. At some point I realized that Mark rarely complained foods he didn't like, etc., or even about physically painful things, such as difficult injections.
[The remainder of the above section is not completed yet. But in the interest of bringing the site to a conclusion for those who have said that they are reading it through, I have put this page up as-is, for now.]
1989 - 90
We's all on the cover of Newsweek
Well, I'm on my way, I don't know where I'm goin'
I'm on my way, I'm takin' my time, but I don't kno where
Goodbye to Rosie, the Queen of Corona....
Me and Julio Down By the School Yard
Richard Dunne's successor, Jeffrey Braff, got on the cover Newsweek. He was photographed sitting at his desk looking at some paperwork, dressed in jeans and a flannel shirt (Ohmygod, is he a "gay clone"?!), while the Assistant Executive Director, veteran GMHCer, Tim Sweeney, wearing dress slacks, a white shirt and a tie, stood a bit behind, leaning over him. Anyone given to optimistic prophecies might have felt this scene, especially the costuming nuances, suggested that the conflicting forces in the organization were going to be harmoniously blended. They would have been wrong, unfortunately. If the Newsweek covered boded anything, it was the exact opposite.
Braff was well qualified, and though coming from Canada (he had dual citizenship), he appeared to settle into the New York City scene like a duck into water. However seamless the transition from Dunne was in the public spotlight of the Big Apple, the personality and style of Jeff Braff represented a considerable change.
Jeff Braff (photo from OutWeek)
And this was rumored not to sit well with a few powerful members of GMHC's Board of Directors, by now a collection of individuals representing various interests and agendas, and in some cases with social and career interests enhanced by their Board position.
However, with the volunteers and the gay male population he scored big. ACT UP had been founded by a group of individuals in 1987, but Larry Kramer quickly made himself its most visible member and voice and in the latter role he still lost no opportunity to disparage GMHC. An anti-GMHC reflex quickly became automatic among ACT UP members.
Richard Dunne's reaction was fierce. The former director was quoted in June 1990 by the Los Angeles Times as saying, "Larry Kramer is about as rotten a person as I've ever encountered. He's shrill and tiresome...he's a bully. But on the plus side, he was there from the beginning. In the early 1980s, his rage and anger were appropriate."
Not the greatest state of affairs for these two groups in the midst of the AIDS pandemic and a national wave of homophobia.
One evening Jeff Braff went down to the ACT UP meeting in the gay and lesbian community center. At some point he stood up and introduced himself, and had to withstand a hostile reception. He stayed the course, however, and essentially made the point: Here I am, and can we now start not going for each other's throats. When he sat down again, he received an appreciative acknowledgement from at least some of the crowd. (I am not certain if he attended another of their meetings later on.)
I had thought that Jeff Braff was going to bring some of the feeling tone back to the GMHC administration. I hadn't read about his visit to the ACT UP meeting, but when it was brought up at our team meeting I was really pleased to hear what he had done, as were all the other members.
The team I had joined after Chuck died was half gay men and half straight women, and I think this change from the makeup of the previous team occurred on other support teams as well. We occasionally had a lesbian member, and later one of our team captains was a straight guy.
The client base was changing too. GMHC had taken up the slack when the black community failed to respond when AIDS swept through it as gay men had when they were struck. Rather naively I, and other people I knew through GMHC, thought that the black community and especially its churches would react with a crusade, as it had done with civil rights. But there were entirely different forces at work in the case of AIDS, which we whites didn't consider or weren't aware of which prevented this. Hispanics were in the ranks of GMHC volunteers from the beginning, and also as PWA clients. Women, lesbian and straight, of all ethnic and racial backgrounds also came for help. Our team at one time or another had a straight volunteer matched with a gay client, a lesbian with a straight black mother, a white gay man with a black IV drug user and other matches that would have seemed quite unusual in the earlier part of the decade. There were no problems with this shift - at the level of the client/volunteer pair - that I can recall from my team experiences.
However, the persistent rumor to the effect that GMHC would someday soon be taking the G out of its name must have reached Braff. In a 1990 mid-year newsletter to volunteers he addressed that rumor head-on. "You ask me about GMHC's name and will it be changed. The answer is no....(and in bold print) GMHC stands foursquare in the gay and lesbian community here in New York and will always work hard for unity in that community." Braff may have suffered from a crisis of over-confidence on this point, these remarks were virtually his swan song in the organization.
That photo on the Newsweek cover the new director working at his desk while Tim Sweeney, the veteran deputy director, leaned over his shoulder did foreshadow future events. Before the end of 1990 Jeff Braff had disappeared and Tim Sweeney was sitting in his chair.
In Orwell's 1984, the Memory Hole is a slot into which government officials deposit politically inconvenient documents and records for destruction...a destruction so complete that not even their ashes remain. Jeff Braff's directorship of GMHC has had a similar fate. His departure was the subject of a terse, bland official PR announcement. The grapevine was soon humming with nasty rumor about the former director, but this was quickly followed by another rumor which attributed the source of the original gossip to a straight female board member who had disliked Braff from the beginning. Given his overture to ACT UP and his non "Organization Man" affect, his departure seems to have been on the order of a "palace coup" by the Board to head off policy directions it considered retrogressive. Braff may have proved to be "too gay" at a time when GMHC had decided to emphasize other interests. (right) Tim Sweeney
On record, with an Orwellian completeness out of 1984, Jeffrey Braff has disappeared from the GMHC saga and there is not so much as a lacuna between Richard Dunne and Tim Sweeney. Tim Sweeney as executive director struck me in meetings as intelligent, likable and inoffensively businesslike. And he seemed to have been well-liked and respected through his previous years in GMHC.
First red ribbons - passed out at 1991 NYC Gay Pride parade
However, the Board of Directors, in the form of at least one or two of its members were omnipresent in the GMHC offices now. The Board's membership reflected the presence of the racial minorities and women in the client ranks, but by the 90's AIDS organizations had acquired considerable liberal cachet, and the Board was also favored with socialites straight and gay. And the attendance of a Board member at a few potentially troublesome general meetings of volunteers and team leaders made it even clearer that the Board or some of its more interested members was taking a direct hand in the management of the organization. Not surprising when it was now possible find a place on someone's list of movers and shakers by having a major role with an AIDS organization.
The transformation from the early gay (and overwhelmingly male) grassroots organization over the decade of GMHC's existence was quite impressive. The changes in its client base meant that gay men, while still the most numerous group at this time, were a much smaller part of the whole. Growing considerations in the general political and social environment in the late 80's and 90's about "diversity", "multiculturalism" and the more recent issue of "political correctness", especially among the more liberally inclined, meant that GMHC was soon trying to come to grips with being all things to all wo/men, etc., etc. etc. The systematic implementation of jargon and buzz words into organizational groupspeak was the easy part, but the reality of when "the rubber hits the road" was more like "the shit hits the fan."
GMHC was having major problems getting the mix of political correctness and reality right.
Twice at team meetings the leaders informed us that GMHC headquarters had become concerned over reports from gay clients that they were being called abusive names by straight, black clients when they attended the lunch program at GMHC. Volunteers were asked to pass on reports of such incidents we might hear from our clients to our teams leaders. This situation struck me as almost literally a case of biting the hand that feeds you. But none of the clients I had on the occasions of these announcements took advantage of the meals at GMHC.
In 1993 I had an intake with Charles, a guy I had met a few times fifteen years before through my former roommate, Tom. We became friendly, and I used to call him and drop in at his place pretty often. As his health deteriorated he lost the will to cook, and he got tired of trying to find affordable and healthy meals in restaurants. He lived near West 14th and Seventh Ave., so meals at GMHC were his best option. After hearing homophobic slurs in the dining room from black men, and once as he exited the elevator being shouted at by black men in derogatory language, he ceased going to GMHC. Evidently the organization had still not been successful in putting a lid on this sort of stuff not an easy task, I'm sure, when charges of racism might be invoked as an effective red herring defense.
Fortunately for Charles there were now other AIDS organizations on the scene that could help him, and which provided non-threatening environments for a gay man. A few times when he was able I went with him to visit Friends In Need, and God's Love We Deliver brought meals to his apartment. What I heard from some gay men I met in these places was the similar to what Charles had experienced, and the homophobia of black men had driven them away from GMHC. Charles died a few months later, and he had felt so bitter about what was going on at GMHC that he'd never gone back to sign his will. He died intestate, which created problems for his mother.
I had done an intake with Luis, a gay Hispanic transvestite from East Harlem. I used to bump into him once in awhile after that, and he also said that he had been called names by straight black men in the dining room.
Abe Rosenthal the homophobic Managing Editor of the Times, who had been suppressing coverage of the AIDS epidemic and had retired in 1987. He was replaced by Max Frankel, who reversed Rosenthal's homophobic stranglehold on gay-related and AIDS coverage almost immediately. Shortly after taking over, the paper published its first serious articles on the impact of AIDS on New Yorka four-part series, each installment of which began on the front page and was continued on the inner pages, and he changed the paper's style policy so that "gay" could be used in any context where formerly only the word homosexual had been permitted.
Nevertheless, not all staff members were on board evidently. A New York Times article early 90's limply characterized black clients at GMHC ridiculing gay clients with homophobic slurs as "heckling."
So let's get this straight, so to speak - when someone shouts, "Faaaaaaaaaaaaaaagit!!!" at a gay man as he's leaving the elevator at the Gay Men's Health Crisis, that's "heckling." Would it have been characterized as that by the Times if the word was "Nigger!" flung at a black man by a white gay man, or "cunt" used to humiliate a woman client? Let's get real, the Times would have been screaming its liberal guts out in front page news stories and editorials, while the seismic shocks of righteous indignation would caused property damage as far as Outer Mongolia. But credit where credit is due: The NY Times had come a long, long way and was by this time a major source of reliable reporting on the epidemic. And one jerkwad reporter didn't turn it into a Titanic. And after all GMHC was having major problems getting its mix of political correctness and reality right too.
But meanwhile, the era of AIDS chic was dawning, AIDS-related jewelry and boutique items were starting to hit the sales counters. The AIDS red ribbon had been just that, a ribbon and a safety pin, but not for long. Cloisonnι and jeweled versions would soon blossom on every Hollywood bosom and lapel. (Well, maybe not Charleton Heston's.) And coffee mugs, decals, tee shirts, pet jewelry, scarves, etc., etc. with AIDS motifs would flow off the production lines. Rainbow oriented catalogues appeared, and they featured numerous cutsie items of AIDS-labeled kitsch. AIDS chic as part of pop culture, who woulda thunk it!?
HOLD ON TO MY LOVE
Late in the winter of 1990 I was walking down East 6th Street late in the afternoon. I passed The Saint, which was covered in longing graffiti and plastered with shredded posters. On the doorstep of the side entrance which had been used in its later years there was a little bouquet and a candle beside it. A name was written above it in magic marker, with a pair of dates. He had been 32 years old and his friends had made the entrance to The Saint his monument.
I mentioned to someone that I'd heard of some people who had never heard of Stonewall, he looked at me and said that he'd met someone who had never heard of The Saint.
After Bob got PML (Progressive Multifocal Leukoencephalopathy) as an AIDS-related infection, I used to spend my lunch hours with him as Roosevelt Hospital was only two blocks from where I worked. We chatted about the green men who walked on his ceiling, and when lunch was brought to his bed he would sometimes turn his sliced beef and gravy dinner over and over with his hand, and express surprise at how wet his Time magazine was. He asked me to cover the flowers in his room to keep the snow off them, and more than once he wore his slippers on his head.
For me this was actually a respite from my lunatic work environment two blocks away, as at least I wasn't obliged to make sense out of it. However, members of the hospital staff sometimes gave me clear signals they thought that I was maybe too underwhelmed by Bob's conduct.
When he was about to be discharged from the hospital for what would be his final time, a social worker came to see him. I was sitting on his bed while he sat in a chair, loosely tied around the waist to prevent an accident.
She had a pronounced no-nonsense, businesslike appearance; but, in fact, came across more like a friendly sergeant. She began, "Bob, it looks like you can go home. What do you think about that?"
Bob leaned forward, and after a bit of a pause, he replied earnestly that he thought that was, "Fine!"
She then slowly and carefully went over each phase of the plan for his post-hospital care. With great kindness she kept checking with him after each of her remarks, "Bob, what do you think of that?" He in turn was listening intently; beamed with pleasure at all the provisions which had been made and replied briefly but enthusiastically about them each time.
I looked at him, I looked at her. And I knew Bob well enough to sense that something was not right.
When she was finished she asked, "How does that sound to you?"
"It sounds good!" he replied, with more eagerness than ever.
She said, "Do you have any questions?"
"Just one." Leaning forward, his very large eyes fixed on hers, he asked, "Who is Bob?"
It would be impossible to try to describe the expression (or several in rapid succession) on her face. She turned toward me. I really felt sorry for her predicament, but I was trying very hard not to laugh. She looked at Bob again, gave him a weak goodbye and then walked out of the room without another word.
I was in the hospital when he died and was unable to attend his memorial service because I had to have an operation. A video had been made of it, and I was given a copy. One day when I was at home convalescing I decided to watch it. The Universalist Church on Central Park West (a very short walk from the block where Bob, and I had lived) was large and impressive, and the speakers were a cross-section of his contacts from his AIDS-related work. Each speaker talked very personally about the Bob they knew.
Of course none of their eulogies sounded like a description of the funny, eccentric and maddening guy down the street that I had hung out with for years.
The video ended. After a moment, I burst out laughing as the scene with the social worker at the hospital flashed through my mind. "Who is Bob?"
In March 1992 reported deaths from AIDS reached 26,657 in the city.
BILL, AND THEN THERE WERE NONE
And then there were only Bill (Mark's boyfriend), Chris and I left from the Boot Hill gang. Chris left to take care of a friend of his in California and stayed out there. Bill said one day: "You know, there aren't too many of us left." Right you are, two isn't a big number. Very much his sense of humor.
Late in '92 I had to go into the hospital for a minor operation, Bill went into St. Vincent's in the Village for the last time on almost the same day. When I got out I went and sat by him every other day. Only once did he know I was there. On the second day, when I came in, as soon as I reached the door, he looked at me with a smile and said, "Hi, how are you?" in his normal voice. But in the time it took to walk to his bedside he had disappeared again into his twilight dementia. I was told it was the only time he had spoken or appeared to recognize anyone in weeks. He never spoke again. Frater, ave atque vale. He slipped into a coma, and was heavily sedated to hasten the end. I sat by him still because none of the others from our crowd were there to sit with him; and however childish, it just seemed simply too "unfair" that he should be the unlucky last of us and die alone. On January 5, 1993 Bill died.
Eight of the nine guys I took as clients for GMHC had died as well. I continued doing intake interviews until I resigned as a volunteer in 1995.
The Upper West Side had only two gay bars and no gay-oriented businesses by this time. In a short time only the Candle would be left. The same streets were there, but they were bereft of a gay neighborhood.
if you are an Alexandrian, you will not condemn. You know
the rushing torrent of our life, what ardor it had, what supreme
from The Tomb of Iases
"I Love America! I never miss an episode."
an English SOC.MOTSS participant
The French, from Alexis de Tocqueville to Simone de Beauvoir, have been credited as the most perceptive observers of the American scene, but the Brits' Oscar Wilde and Charles Dickens also recorded their very entertaining impressions while touring. The self-loathing homosexual English author, Somerset Maugham, entitled his autobiography, The Summing Up, and in the Nineteen Nineties two gay, immigrant Englishmen took turns at doing just that on the passing of Gay America.
The first was Andrew Sullivan conservative journalist, a gay explainer-to-straights and a person living with AIDS who described what happens "When Plagues End" in the November 10, 1996 Sunday magazine section the New York Times.
With a passing acknowledgement of blacks and Latinos among whom AIDS, he allowed, would continue to rage and a seeming nod to gay working class whites, he moved on to the substance of his essay: For white middle class gay men, drugs had made AIDS something close to a doable bother. And he concluded by tracing his particular view of gay history, a journey from lack of "self-respect" in the Seventies to "responsibility" in the years of the epidemic, moving on toward the full appropriation of breeder privilege in the Nineties. It is a trajectory consistent with his conservative political leanings and his Roman Catholic underpinnings.
Sullivan was regarded rather disdainfully by many other gay journalists and commentators, most of whom saw (and see) themselves as liberal or even radical Left. Ironically, however, gay organizations in the post-AIDS years increasingly rode in tandem with Sullivan, shifting the emphasis of their campaigns toward touting straight lifestyle/"traditional" objectives. It was a softer, somewhat sentimentalized approach more flattering and appealing to heterosexuals. This tone now overshadowed the previous baldly straightforward legalistic stance, which had expressed itself in unvarnished terms of achieving equal civil rights without regard to how straights thought these should be lived.
The other Anglo-Saxon surveyor was Quentin Crisp, for a brief while one of straight America's favorite slices of fruit cake, but an icon for some gays too a veritable Empress of Camp, not to mention his claims to the Duchies of Misanthropy and Internalized Homophobia. In a June 1997 interview for A&U (Arts and Understanding), he dropped these supposedly droll pearls...
(right) Quentin Crisp
"No. AIDS doesn't affect my life at all. I remember I was in Chicago, where a man asked me what I thought about AIDS. I said, 'It's a fad.' This meant that I lost the love of all the gay people in Chicago in a single night.
"If your semen contains deadly amounts of some virus, don't tell me that your sweat and your saliva and even your breath don't contain any. Nonsense. It must be there.
"I suppose homosexual sex is unsatisfactory, and that's why people indulge in it so much.
"Dr. Watson [one of the discovers of the double helix pattern in DNA] said, 'If there were - hypothetically a gay gene, and if more hypothetically it were detectable in the womb, would a woman be justified in aborting the child?' I said, 'Yes.' It seems obvious to me that if you can have a world without homosexuals, it would be wonderful."
Unfortunately, Crisp's dubious "humor" blended neatly with the new era.
SERMONS AND SODA WATER
"The world has changed. Some gay people are straighter than my parents."
John Waters, New York Times
Gay Life was becoming rapidly defunct by the early Nineties: the Alphabet Era of LGBT (and various combinations of those and other letters) had begun. And regardless of whether you emphasized the oppression, defiance, excesses or courage of the previous four decades, now borrowing Byron's words had come a time for "sermons and soda water the day after."
The AIDS-related anti-gay hatred and discrimination of the Eighties had cowed the new LGBT generation. Queer Nation, though founded in 1990 by members of Act-Up, the AIDS activist organization, disappeared at mid-decade in an LGBT atmosphere which honored the homophobic hatred of the AIDS era by ignoring it. However, the term "queer" had supposedly been "reclaimed" at this point. Not surprisingly, however, this newly redeemed label "queer" soon proved entirely too provocative for the political struggles over "Don't ask, don't tell" and same-sex marriage. These particular rights were very much about not being queer, but rather about LGBT's fitting in. So the word "queer" was largely safely corralled within academic jargon. This was one of the first symptoms that a liberal puritanism was developing on the other side of the fence from the well-established conservative strain of it.
Though I never experienced anything like it myself, I was told by two or three men during this period that they had been confronted by young gay men who had vehemently blamed them for the prejudice that young LGBT΄s faced. The struggle to gain access to those civil and legal rights still reserved exclusively for heterosexuals - such as the right to serve in the armed forces and civil marriage, for example - went into high gear as the peak of the AIDS crisis passed. And it was clear, at least at first, that the drive for access to these rights was still motivated by the sole belief that LGBT's should have the same personal and civil liberties as heterosexuals, and that neither should have impediments that the other did not. These rights were deserved simply because they should belong to all American citizens.
The post-Reagan years found the nation increasingly embracing political and religious conservatism, conformity and xenophobia...in the new millennium war, military adventurism and jingoism would roar into the picture.
Gay and Queer had once been outlaw territory on the fringe of mainstream American life, and worked into it and wove through it by hook and by crook in the manner of other minority subcultures. But as the new millennium arrived LGBT opinion-makers columnists, celebrities, academics, politicians and organizations were making a sea change. Their talk of gay rights was still wrapped in a tissue of familiar liberal political rhetoric, but in substance it was sounding more and more like a soft-sell brochure for a traditional, hetero-normative lifestyle project. They were promoting LGBT's as eager assimilationists to reassure the straight American public. And most certainly there was nothing of the outlaw about it.
In The Trouble With Normal Michael Warner (currently a professor at Yale University, and the author of several other books) skilfully analyzes what was being jettisoned in the lemming-like rush to a post-gay "normal."
"Gay Liberation" was an acknowledged historical antique, the very idea of such a thing was now close to an embarrassment. If the goal was to attain legal parity in a world dominated by straight power and straight conventions, it was a stumbling block to brag of a past which had enthusiastically defied and repudiated the very same. Recognizing this, LGBT politicking was born-again in a spirit of collective amnesia. The summum bonum was no longer that of gaining civil rights solely because they should be our legal entitlement, but that those rights were also a kind of Pledge of Allegiance to traditional heterosexual norms. This lifestyle pitch proved effectively reassuring to more liberally inclined straight Americans as well as to those Millennial LGBT's who felt the need to emphatically separate themselves from those stigmas of 20th century gay life, promiscuity and AIDS
THE AGE OF AMNESIA
There is, however, an historical and demographic fact that should have given some pause to LGBTs: the straight population into which they wished to disappear was still composed in no small part by those very same "Good Americans" almost everyone in their forties and over who remained silent and unperturbed collaborators in their vast millions while the hate campaign of the conservative Christians and other extreme Rightists wreaked havoc on the lives of gay men and others infected with AIDS. The "Good Americans" who remained silent when hatemongers threw roadblocks in the way of AIDS research and education, and the "Good Americans" who remained silent while hate-mongers unleashed a savage crusade which even caught up infected school children in its net of evil.
Not until national media fueled by the interest of entertainment celebrities focused on the persecution of the straight, white schoolboy, Ryan White, did some of those millions of "Good Americans" finally deign to notice and actively distance themselves from the hate campaign that had been raging for years. Yet now these same "Good Americans" were the folks whose lifestyle and values LGBT's were being urged to adopt that is, once they were granted those civil rights that had been the private reserve of heterosexuals.
Just which values of those "Good Americans" did these LGBT's think they should emulate? Obviously not Courage, Concern or Compassion. After all, these people were collaborators with the hate-mongers: like the "Good Germans" who thought they could look the other way in the 1930's and pull a "Well, I'm all right, Hans," act, as their neighbors vanished. But not one spokesperson among these "Good Americans," who looked the other way in their millions, has said as much as "Whoops!" never mind accepted responsibility and apologized for the shameful intolerance, misery and medical horror that their eyes-closed attitude allowed to roll on like a juggernaut for years during the AIDS epidemic.
Curiouser and curiouser! cried Alice....
But the Age of Amnesia had arrived, and most of the LGBT's who came of age, or were born, after 1980 would find this consideration absolutely incomprehensible, as their disconnect from 20th century gay life was virtually total and their knowledge of the political and social impact the AIDS epidemic essentially zero. But America had begun a seismic socio-cultural and political shift in the Eighties. So, to be truly fair about it, LGBT's are only a small minority in a nation of American Alices who tumbled down the rabbit hole and have been blundering through the dystopian Wonderland of USA II ever since.
"If we can marry, they will have to accept us," wailed one of the many contributors on a busy LGBT blog I read in July 2011. Very sadly, many of the young contributors agreed. It appeared almost lost on them that they deserved to be able to marry because they deserved it as the right of a citizen [period.] For many of them it seemed to also have a more utilitarian sociological function: it would be a magic carpet ride to a soft fuzzy landing into the world of straight acceptance.
Between the late Sixties and the Eighties activists looking back at the tactics and goals of the Mattachine Society in the 1950's and early 60's, routinely disparaged them as conservative and "accommodationist." It is a wonderful irony that five decades later Mattachine, et al might at this point have been applauded for those very same reasons...if anyone remembered them.
It is curious, though, that if the majority of hets were so tolerant and accepting of LGBTs, why were twenty-nine states since the early 1990's able to successfully introduce clauses into their constitutions explicitly forbidding gay marriage, and gay unions too in some cases? It certainly looks as if in most of these twenty-nine out of fifty states the supposed tolerant, supportive, accepting majority of heterosexuals did not, in fact, really give a damned rat's ass. And why was it that most of the recent advances for LGBT's had to be effected as fiats of liberal legalism, rather than expressions of popular will? It was no groundswell of popular opinion that achieved same-sex marriage rights in more than half of the U.S. states, but sheer heavy-duty lawyering. (The contrast with Europe is startling, where even in supposedly conservative Catholic countries LGBT rights have usually been achieved as the result of the normal voting and legislative processes. e.g. Spain, Portugal. And in the overwhelmingly Catholic Republic of Ireland it was achieved via a national constitutional referendum.) The American situation definitely begs the question of whether most of the "supportive" heterosexual (rather slim) majorities that showed up in various polls were actively so, or perhaps just more or less indifferent to questions regarding same-sex marriage, etc. I remain massively unimpressed by claims that straight Americans eagerly wanted to cover LGBTs with little wet bunny kisses.
(I would happily grant, though, that such popular heterosexual indifference is an improvement over active disapproval...even if I personally wouldn't want to stake my life on this indifference as a kind of social insurance. The Eighties and early Nineties speak far too loudly and clearly about what mainstream indifference can allow to happen...and since 2016 the camouflage is off again.)
LGBTs in the 1990s appear to have been creating their strategy with a sharp eye on the trends of post-70's America. However, this ignored the fact that some major demographic changes in America have not travelled in parallel with the political trends.
The first half of the 20th century saw the demise of the extended family in the U.S. The decades in the middle were firmly focused on the tightly bound nuclear family of Mom, Dad and the kids. However, the massive social changes provoked by the evolution of the consumerist culture in the closing decades of the last century and continuing into the present one, have given the nuclear family, and its values and cohesiveness, a fierce hammering. Since the Eighties the nuclear family is being superseded by a society of almost anomic individualism, serial polygamy, consensual unions, etc. This should raise the question of whether hetero-normative LGBTs and their leaders had not accidentally aimed too far behind the curve....essentially into the nostalgia territory of Fifties television sitcoms, those fantasies which pass for heaven-on-earth among conservatives.
The achievement of legal marriage for same-sex couples (gay or straight) actually offers opportunities for lifestyle arrangements appropriate to the rapidly changing times. But these certainly didn't exist in an agenda of retro-fitting same-sex marriage to the make-believe of Fifties family sitcoms. These facts touch on some of the considerations that Michael Warner raised in his 1999 book, The Trouble With Normal.
But, in support of LGBTs who crafted the more assimilationist nuanced stance of clean-cut-folks-like-you, it must be said that in the era after the AIDS epidemic American political life across the board has seen asteady shift to the rigid and unforgiving. At this point those dated textbook descriptions of "conservative" for the Republican party and "liberal" for the Democratic, except for a few among the geriatric party faithful perhaps, are too vague and limp when it comes to indicating the sympathies, agendas and passions of the rank and file, much less the large messy fringes hanging from each.
For more than two decades that "shift" for the GOP has been more of a dizzying spin into resurrected 19th century Nativist hysteria, white nationalism and Evangelical Christian triumphalism, topped off with a shameless roll in the hay with America's financial oligarchy. But the GOP and its myriad ultra-Right allies with the stench of fascist b.o. are only one part of the political spectrum, of course.
The Dems have abandoned themselves to chronic self-righteousness and being so offended. Their increasingly Baroque elaborations of what is Politically Correct and support of an almost Maoist-flavored cultural revolution of denunciations and demonstrations have carried them deep into dubious territory for "liberals": denunciation=guilt, legal procedures are unnecessary. They are also in the pinch of having to face the fact that their touted "diversity" ideal for American society rubs uncomfortably against the traditional ideal of a happy homogenized society. (Ouch!)
But all the battling and name-calling of America's Right and Left has been largely entertaining razzamatazz for the sucker voters. Washington politicos of both parties had already eagerly participated in the transformation of the U.S. into a corporation state, a nation run by and on behalf of corporations. This had been what mattered, it was the vital core. Now they had a new act: each major party stiffened its spine, pulled its mouth into an angry pucker and began to spout its own rigid version of our way is the Real American Way.
But for their citizen audience they were only one act in life as an unending, distracting drag show of courtiers and clowns be they politicians, TV news showmen, celebrities, reality show freaks, Twitter swarms, Facebook addicts....what have you. USA II is a society of life-long adolescents. And the omnipresence of digital technology has created a culture in which each individual can carry their asshole in one hand and paw through their shit with the other all day long in the delusion that they are the center-of-all-the-action. Guy Debord got it right in The Society of the Spectacle:
the spectacle is not something added to the real world not a decorative element, so to speak. On the contrary it is the very heart of society's real unreality. In all its specific manifestations news or propaganda, advertising or the actual consumption of entertainment the spectacle epitomizes the prevailing model of social life.
Got it. Welcome to the Twenty-first Century.
There has also been a rise in violent rhetoric and violence itself, and the tolerance of it if not an actual thirst for it among Americans. The possession and use of firearms has become a national obsession, with homicidally inclined white citizens preoccupied with "open carry," "concealed carry" and "stand your ground." Domestic terrorism in the form of mass slaughter in schools and public venues is routine news fare filling social media with many thousands of "My thoughts and prayers are with the....." postings each time until the next time. Black-on-black crime and slaughter in metropolitan hoods is civic chaos plain and simple, but that interests Black Lives Matter not at all. It is hard not to believe that some enclaves in both Red and Blue state areas of the United States will resemble Somalia or Pakistan's Swat Valley within a decade or less.....my money is on "a lot less".
But there is an ironic same note being sounded by both the Americans who embrace "Traditional Values" and those who shake their fists for PC Forever: Puritanism. Look to the Right, look to the Left; not since the days when Mommy washed your mouth out with soap and Daddy spanked your ass with a hair brush has there been such a glut of people letting loose with Our Way or Else! and who only want the opportunity to pound it into your thick and unbelieving skull. From Mar-a-Lago to Hollywood and back again to D.C., the guiding righteous Puritan light of Massachusetts Bay Colony shines for you....be it held in the Right hand or the Left.
All this as America's military invincibility and economic hegemony on the world stage are passing; and China, Russia and Sunni Muslim fundamentalists are reshaping the global order. Somce 2016 the uniqueness of the United States lies mainly in the fact that it has become the world's largest banana republic....and ominously the only one with nuclear weapons.
Those two resident Brit observers, Andrew Sullivan and Quentin Crisp, had produced autopsy reports on the death of Gay America. And from the very bedside of the mortally ailing America, Pulitzer Prize winner, Chris Hedges, had reported its relentlessly deepening coma in Empire of Illusion. Still in the immediate post-AIDS era the emphasis of LGBTQetc. politicos on accommodation and assimilation into the mainstream population (beyond the simple attainment of full civil rights themselves) must have looked like a savvy, and even self-protective strategy in the years circa 2000.
However September 11, 2001 of blew away the brief post-Cold War lull of American world hegemony, and the reality since then has been that USA II is just one of the major entities in a violent worldwide upheaval following that lull.
On the national level the same-sex marriage issue itself was put to rest by a SCOTUS decision. Virtually the final act of liberal legalism for LGBTQetc. equality...or, so it was assumed on June 26, 2015.
Game, set, match?
Only if you keep your head where the sun don't shine.
Political and cultural forces across the world have been making a massive turn, and the physical world itself is gasping. How the corporate American state and the profoundly divided American people will survive this pivot or if they will survive it in any form we would recognize is a prediction better not attempted. The free market and globalization assume and need the human being as a relentlessly voracious consumer, and human society and the natural world exista to unceasingly produce commodities for this insatiable creature. American society and culture have the appearance of a badly run children's camp, and the nation is cannibalizing itself. The United States has not been as deeply divided since the era just before the Civil War.
The new American anthem had already become I Can't Get No Satisfaction. So no surprise that Trump, trump, trump, the boys and girls were marching....Ron Powers ' book, The Cruel Radiance, was published in 1994, and at one point he says:
Look around you. Look out beyond the mountain. Remember where you came from. We are living in a society, and indeed in a Western world, that is as besotted with deception as the mind man can make it possible to be, and the mind of man is growing more inventive with each passing fiscal quarter, each approaching primary season. Perhaps not coincidentally, we are besotted with violence as well.
Too many of the first post-AIDS, post-Gay generation people born in the second half of the 70's and in the 80's who came of age in the Nineties had been snuggling up to the new millennium secure in their vision of an almost-het-like-you future...replete with traditional het weddings in white costumes, carrying huge white bouquets and peering over three-tiered white wedding cakes into the photographer's camera. Just as Mom and Dad had.
Flash! Pop! Pop! Pop!
In late 2010 this comment was posted on The Data Lounge website:
".... More and more people are in daily contact with LGBT and are finding us just like them (except we suck cock or munch carpet). Twenty years from now, [emphasis added] we will not understand nor comprehend why being a cock sucker was such a big deal. Sex, or rather who you have it with, to me does not make a lifestyle. My income, my politics, my house, my aspirations, my education, and my love makes my lifestyle, oh, and I suck cock."
Any believer in this naive fantasy should do some very serious homework about the history of Jews or African-Americans before buying into it. How many lynch mobs asked blacks about their lifestyle before they slipped the noose around their necks? How many Nazi guards at the entrance of the gas chambers asked the waiting Jews what they thought about their lifestyles? I would have expected that the painfully obvious point had been long established that what mattered is what the lynch mobs and the Nazis thought....and not what their victims ideas about themselves were.
And on November 8, 2016 a smug and over-confident Hillary Clinton partnered by the egomaniacal populist-white nationalist Donald Trump finally pulled a sheet over the corpse of the old American republic, whose decline had been terminal for sixteen of the past thirty-six years. R.I.P. Perhaps only the St. Bartholomew's Day Massacre accomplished a political transformation as quick and as thorough as this election. The U.S. began a mind-bogglingly rapid transformation into the northernmost banana republic in the Americas.
Never mind Hillary's blunders LGBTQetc's should have been wary of their own overconfidence as a kind of "psychological selfie," which like the photographic one is a magnification of self-enthrallment, an image which obscures the reality around it. After the 2017 inauguration conservatives were able to say, "Stick that in your wedding cake and eat it, homos!"
The conservative and American Brownshirt militias message was Hate.
The message of evangelist Franklin Graham, buddy of POTUS Trump, was Hate: Satan was the architect of same-sex marriage and LGBT rights he said, and gay people are causing a "moral 9/11." Regarding Vladimir Putin's laws against 'gay propaganda', this pillar of American Evangelical Christianity declared: "...In my opinion, Putin is right on these issues."
LGBT's were hated not for who we can marry, or our incomes, or what our houses look like, or what our educations are...etc., etc. Like African-Americans and Jews, when we are hated, we are hated just because we are who and what we are.
Flash! Pop! Pop! Pop!
Fortunately the younger American LGBTQetc's of the 21st century generation with eyes and ears wide open aren't hearing flashbulbs and champagne corks.
Pop! pop! pop! is the sound of death as domestic terrorists go after African-Americans, Jews, Sikhs and Muslims....and a UCLA Law School study in 2019 found that one-fifth of all hate crimes involving firearms were based on sexual orientation or gender identity bias.
Trump's incitement of his followers to insurrection and an attempted coup, which would prevent the certification of the Electoral College votes declaring Joseph Biden as the winner of the 2020 presidential election, was aborted. But the Biden presidency may only be an interlude before the ultra-conservatives, the fascists and the gun-nutters and the QAnon freaks put a new Duce into the White House.
The more than 70 million Americans who embrace fascist rhetoric and goals nativism, xenophobia, racism, and armed opposition to domestic opponents have not gone anywhere. They made Trump, Trump did not make them he was their American Mussolini. The Republican party dropped conventional conservatism for eager cooperation with Trump's authoritarian orientation; but when Trump exited the GOP refused to disavow Ultra Right extremism. The party's road to winning the vote relies on the support of the huge number of ultra-conservative and fascist Americans.
And despite Biden's presidency, what past Supreme Courts did the present one with an ultra-conservative majority can undo.
So, standing out as a minority now any kind of minority could become even more dangerous after January 2021with millions of Trumpista extremists raging over their lost stranglehold on the nation and their failed January 6th coup attempt. Today in USA II if you are "different" someone on the Right probably sees a bulls-eye on your forehead. In fact, a huge number of someones. And their weapons ain't spitballs.
mail to: firstname.lastname@example.org
CONTENT-RELATED LINKS - checked January 2020
Casey Donovan - star of Boys in the Sand
Christopher Rage - XXX filmmaker
Al Parker - Colt Studio model & porn star...and <gasp> clone!
Bill Graham - creator of those rock music temples, Fillmore West and Fillmore East
The Saint - Wikipedia article giving overview of The Saint.
Robbie Leslie Home Page - site of one of the best 70's/80's DJ's, music collections for sale. One of the most frequent Saint DJ's.
Randy Shilts and the Patient Zero Myth - His publisher's insistence on emphasizing the sensational for sales value.
GMHC Now: Glory Days Over and Going Down the Drain?
ACT UP - It's origins prior to the involvement of Larry Kramer.
ACT UP history - Wikipedia summary
Ryan White - excellent summary of his life from NYT obit. He could have been used against gays, but he didn't allow it.
A Course in Miracles - a sceptical article about ACIM, but an interesting analysis of its content nevertheless.
GENERAL INTEREST LINKS
Constantine Cavafy - the whole nine yards of this giant of world poetry.
Crush - buy it, read it - intense poems by Richard Siken, 2004 Winner of Yale Series of Younger Poets
David Wojnarowicz - his diary is like season in hell
Kφln Concert, Keith Jarrett