Robert Rayford: The First AIDS Victim In North America?

On 5 June 1981, the US Centers for Disease Control published its now-famous report describing rare lung infections in five previously-healthy gay men in Los Angeles.  This is commonly seen as the beginning of the AIDS era.

These days, just about everybody knows how HIV/AIDS is transmitted.  But no one seems to know for sure where it originated or why, in the US, its first victims were gay men and intravenous drug users.

What's also not clear is when the virus, or whatever causes AIDS, originated.  That question grew even more puzzling after the tissues of a 16-year-old boy who died on this date in 1969 were tested nearly two decades later and found to have been infected with AIDS.

At the time, he was known only as Robert R.  A few years ago, his full name--Robert Rayford--was disclosed.  He was born and died in St. Louis, far from the first clusters of the disease, and apparently never traveled outside the midwestern US. 

In 1968,  he checked into City Hospital with lesions all over his legs and genitals. He also complained of shortness of breath and fatigue, and claimed he had experiencing those symptoms since at least since late 1966.  

Those symptoms and the lesions and sores would come to be known as the hallmarks of AIDS.  The lesions and sores were particularly puzzling, as they were of the type known as Kaposi's Sarcoma which, until that time, had been found only in elderly men of Jewish and Eastern and Southern European ancestry.  Robert, in contrast was an African-American teenager.

Further diagnosis revealed a sexually transmitted chlamydial disease called lymphogranumola venerum (LGV).  It, too, did not respond to standard treatments and the chlamydial bacterium was found in Robert's bloodstream.  Up to that time, no one had ever found it in a person's bloodstream. 

Some believe that he was gay or bisexual, which the doctors who diagnosed and treated him wouldn't have known to ask.  He did admit to having sexual activity "with a neighborhood girl", though he wasn't more specific.  This has led to speculation that he was a child prostitute or was sexually abused.

Whatever the case, his condition deteriorated rapidly.  His whole body swelled with fluid.  Doctors tried all of the proven treatments for his conditions; none of them worked.  Most troubling of all, the infection spread to his lungs.

What all of this meant, of course, was a meltdown of Robert's immune system.  Even the timeframe of his illness and deterioration corresponded with that of early cases in the AIDS epidemic.  He also died in a way that was very typical of early AIDS cases:  from pneumonia contracted in his weakened state.

We all know that the early days of the AIDS epidemic devastated the gay male community:  Nearly all gay men in that time knew another gay man who died from the disease, and most of us who knew gay men also knew of someone who succumbed to the illness.  During the 1990s and in the early 2000s, the number of gay and bisexual men who contracted the disease fell dramatically, thanks to awareness campaigns and better treatments. But the numbers began to pick up again.  Some blame complacency; others point to the fact that most of the new cases were young men who didn't come of age during the early days of the epidemic.

I have seen very little mention, however, of how much of a swath HIV/AIDS has cut through the transgender community.  At least, it seems that no one outside the community is talking about it.  Actual statistics are hard to come by, but when you realize that we have rates of unemployment and poverty far higher than those of any other population, it's hard not to think that we are one of the groups of people most affected by the disease. Also, too many of us have engaged in sex work simply to survive, and I would guess that we are also more likely to experience, or have experienced, sexual violence of one kind or another.  (How many rapists use condoms?)  Finally, far too many of us don't get the medical care we need, whether through lack of insurance or phobias developed from encounters with transphobic health care providers. Or we simply, like Robert Rayford, do not have a way of telling our providers what we're experiencing, and unless a provider has a lot of contact with gay and trans people, he or she simply wouldn't--as Robert's doctors couldn't--know what to ask.

The Last Night Before AIDS

If you are my age, or a little older, you can clearly remember a time when most of the world--and, probably, you--didn't know about AIDS.

The "beginning" of the epidemic is often placed on the 5th of June in 1981.  On that day, the Center for Disease Control released its report documenting five young gay men who were treated for pneumocystis carinii pneumonia in Los Angeles hospitals between October 1980 and May 1981.  On the day the report was released, two of the men were dead.   

The reason why this mini-outbreak of pneumocyctis carinii was seen as so significant, even unusual, at the time, is that nearly every recorded case of PC developed in people with compromised immune system.  That meant most of those afflicted with it had been, up to that time, elderly, suffering from some condition that compromised the immune system or were taking medications--or abusing substances--that weakened them.  The patients in the report were described as "previously healthy"; the oldest of them was 36 while the youngest was 29.  So they did not come close to fitting the profile of previous PC sufferers.

At that time, I was living some semblance of a straight male's life.  By that time, I'd had relations with two males; the rest of my romantic/sexual life, such as it was, involved females.  So, not many people would have described me as being part of the gay (nobody was calling it LGBT) community.  Still, I knew more gay men and lesbians than most other people I knew and had heard stories about the "gay cancer" before the CDC report was released.

Still, I didn't think much about it.  Part of it was that I wasn't really gay--which, by my definition, meant that I had nowhere near the number of male partners as some gay men I knew.  Also, I suppose I had some of the arrogance of the young:  I didn't think it would happen to me or, by extension, anyone I knew.

Well, a couple of weeks after that report was released, I went to a party held at the house my closest friend (a woman) at the time shared with another woman and two gay men.  We were all students or recent graduates of Rutgers and some of our friends and classmates attended this party.  

It would be the last time I would see most of them.  Of course, some of us simply drifted apart, as people often do after graduating or leaving school.  But four other people--including my first roommate at Rutgers-- would die within the following decade--from HIV, of course.

But none of us were thinking about it then.  Nor were very many other people 

To Old Age (Or, More Precisely, Getting There)

"Well, gays in San Francisco do not obey the dictates of good sense. [...] First, these men don't really see a reason to live past their fifties. They are not married, they have no children, and their lives are centered on new sexual partners. These conditions do not make one's older years the happiest. Second, because sex is the center of their lives, they want it to be as pleasurable as possible, which means unprotected sex. Third, they enjoy the attention and pity that comes with being sick."

Where did I find the above quote?  Well, all right, I found it on Wikipedia. (Shh...Don't tell anybody.) Actually, I remembered seeing it somewhere, but I couldn't recall where or when.

It came, not from the early days of the AIDS epidemic or any of the earlier Dark Ages. Rather, it's of recent vintage--twenty years old, to be exact.  It came from the 5 January 1994 Ron Paul Survival Report.

Now, I won't get into a discussion of Mr. Paul's fitness for public office, let alone the Presidency. But the quote that began this post reveals not only his, but a very common, perception about gay men--and, by extension, LBT people.

None other than Larry Kramer condemned the sexual habits of gay men during the '70's and '80's in language not much different from Ron Paul's.  The first gay men I knew (at least, the first who revealed their sexuality to me) were indeed more sexually active than anyone else I knew up to that time, or most people I've known since.  However, it was a time when many gay men--as well as lesbians--came "out of the closet."  And, like anyone who has been released from bondage, they wanted as much of the very thing they'd been denied.  Also, to be fair, almost no one had heard of what would come to be known as AIDS, let alone the ways it was transmitted.

Still, it's disturbing to read comments like the one from Ron Paul.  If anything has an impact on the life expectancy of LGBT people, it's homophobia.

At least, that's a conclusion of a new study.  When you think about it, it makes perfect sense: LGBT people in accepting communities live (on average, 12 years) longer than those in intolerant environment.  And, until recently, homophobia was everywhere.  In fact, people who abhorred racism and sexism held anti-LGBT attitudes, often unconsciously.  I was one such person.

Before the AIDS epidemic, one didn't see many older LGBT people. Of course, during the epidemic, many died young.  But those who survived are embarking upon old age, and many of us have a better chance of doing so than we might have in the old days. 

Still, even in the most tolerant of environments, we face the hazards of homophobia and the terrors of transphobia.  People are harassed, beaten and even murdered right here in New York for their actual or perceived sexuality or gender identity.  So, while more of us are becoming members of the AARP, there are still things that have just as much chance of claiming us.  And they can't be changed by medical science.  Rather, we have our best chance of living long, fulfilling lives as the human spirit grows and expands.

 

Thirty Years Later, It's Our Epidemic

Thirty years ago today, the Morbidity and Mortality Weekly Report, published by the Centers for Disease Control, included a piece of information that was little-noted at the time but would, literally, change the world.

Five previously-healthy men, ranging in age from 29 to 36, were diagnosed with an illness that had been all but unknown in the United States, save for people with compromised immune systems.  About all these young men had in common were that they were treated in Los Angeles hospitals and were said to be "active homosexuals."  They had no known common sexual contacts.

The illness for which they were being treated was pneumocystis carinii. By the time the MMWR announcement was published, two of the men had already died. Within a year, the other three would be dead.

About the only people who knew about their illnesses were those doctors and researchers who read that issue of the MMWR.  However, stories about a "gay cancer" in which victims had nearly identical systems to those of the five men in the report had been circulating, mostly by word of mouth (Remember, there was no Internet in those days.) among gay men.

That so-called "gay cancer" and the previously-rare form of pneumonia that killed its victims was, of course, what we now know as AIDS.  

What few people knew was that many, many more people were carrying the seeds of that illness within them.  In fact, a little less than two weeks before the MMWR was published, I was--unknowingly, of course--among four of them. It was the last time I saw any of them alive.  I was twenty-two years old, and those people I saw were around the same age.

Eleven other friends and acquaintances of mine have died of the illness.  Five of them--including my first AA sponsor--died between Memorial Day and Christmas one year.  

That was also the year--eleven years after I completed my B.A.-- I began to teach at the college level as a graduate assistant.  I saw, immediately, a dramatic difference between the freshmen in the first class I taught and my undergraduate classmates--or the kind of person I was in as a freshman.  Even those of us who came from relatively conservative environments were still shaped, in various ways, by the various forms of sexual liberation that had washed over college campuses and other segments of society for nearly a decade before my first day as an undergraduate. 

We may well have been the first generation of undergraduates who weren't hiding our sexual experience, desires and proclivities from each other, let alone those who had immediate authority over us.  In fact, said authority figures--and the parents and guardians of some students--almost seemed to expect that sexual encounters would be part of our undergraduate experience.  I recall one classmate being told, by his father, that he needed to "get laid more often."  That young man's father was one of the so-called pillars of his community.

The freshmen I was teaching nearly a generation later shared none of those attitudes.  In fact, I could sense it even before they wrote or voiced their attitudes about sex and intoxication.  

At first I thought that they didn't value those things as much as we did because they were on a non-residential campus, in contrast to the residential campus I attended.  Then I thought that they were more conservative because they had grown up with Ronald Reagan and George H.W. Bush as their Presidents, and the resulting conservative values expressed in the culture. 

But one day I thought back to something else I'd experienced about two years earlier, near the end of the 1980's.  I had been working as an artist-in-residence with the Poets In The Schools program here in New York.  One of the schools in which I'd been working was in the East New York section of Brooklyn.  It was considered, along with the South Bronx and possibly East Harlem and South Jamaica, among the poorest and most dangerous parts of New York City.  (The following year, the precinct that included the school recorded more homicides than all of France or the then-West Germany.) 

One day, in that school, an eighth-grader asked how old I was. When I told him I was thirty, he asked when I would turn thirty-one.  I told him three or four months, or whatever it was.  "Then you're the oldest man I know!"

Mind you, that boy was thirteen years old.  "No, that can't be!"

"My Uncle Henry was thirty-one when he died."  And, that kid added, it was AIDS that claimed him.  I would find out that about at least half of the kids in that class had a family member who died the same way; everyone in that class knew someone who died that way or was murdered.  

The students in my freshman class were only two to four years older than that boy in East New York would have been.  A couple of them grew up there; a few more grew up in neighborhoods that weren't much different.  I guessed that their comparative circumspection about sex and drugs may well have been shaped by their experiences of seeing friends and family members succumb to the ravages of AIDS or as a result of the so-called War on Drugs.

During that semester, Magic Johnson announced that he was HIV-positive.  Of course, he was very quick to assert that he is heterosexual.  While nearly everyone believed him, many of us thought he "had" to say that in order to cover himself.  Being the great NBA player he was, he had access to the best medical care available.  But he could very easily have been misdiagnosed or mistreated in some way had he not made that assertion.

On the other hand, his announcement of his "normal" sexuality turned out to be a good thing in the long run, for it helped to change a lot of people's perceptions about AIDS--and, perhaps, homosexuality.  No longer could people equate one with the other.  

So, in that freshman class at Brooklyn College in 1991, I believe I saw an interesting and, on its face, counterintuitive change take place.  Along with their more conservative and restrained attitudes about sex, I was also seeing, if not tolerance, at least an acknowledgement that people they knew and loved are gay and were not, as one televangelist claimed, like rats during the time of a plague.  That is not to say that there weren't homophobic students:  I recall comments scrawled on the door of Allen Ginsberg's office at the college.  But other students, including most in my class, were ashamed and embarrassed that one of their peers could be so ignorant.  And a few students and faculty members openly mentioned their non-heterosexual inclinations.

I was not one of them.  I still feared how people might react had I openly discussed my gender identity, much less manifested it.  Years later, when I "came out," I experienced some of the things I'd feared--though not from my students.  

So I can understand why too many trans people kill themselves or stay "in the closet."  Too many of us lose families and other networks, and jobs, as a result of finally reaching the point at which we could no longer live lies.  The loss of our lives as we knew them drives too many of us into sex work and into other kinds of risky work and behaviors, and the resulting loss of income and insurance keeps too many of us from getting the diagnoses and treatments we need.   

Thirty years after that MMWR report, HIV-positive people are living longer and, sometimes, not getting sick at all.  That is true, anyway, for those who have good incomes and insurance policies.  For everyone else, the disease is just as terrible as it was then.  The difference is that its victims are poorer and more likely to be female.  Male-to-female transgenders just happen to fit both descriptions.  So, thirty years later, the AIDS epidemic is ours.

Remembering Other Friends and a Cat

It's a good thing I've been so busy the past few days. I know, you're wondering where I find the time to write in this blog. Well, I'll just say that until now, this blog hasn't recorded how much I've slept. Nor should it.

In any event, all the activity has kept my mind off things that would normally preoccupy me on the 22nd and 23rd of every December. Yesterday, the 22nd, was the anniversary of Cori's suicide, as I mentioned in my previous post. And today is even more intense: three anniversaries, all of them deaths. One happened when I was very young; the other two occured on the same day in 1991.

Seventeen years ago, I lost Caterina and Kevin. Who were they? My first cat and my first AA sponsor. They both came into my life at about the same time: I met Kevin during my first few days of sobriety, and I adopted Caterina not long after my 90th day without alcohol or drugs. If any of you who've been in AA or any of the other twelve-step programs, you know that 90 days is your first major milestone: It's recommended that you make it to 90 meetings in that time (I beat that easily; I once went to five meetings one rainy Saturday.) and, after that, ask someone to be your sponsor.

I don't have to tell you that 23 December 1991 was one of the more depressing days in my life, and wasn't made easier with the knowledge that both were destined to die sooner rather than later, and that, if nothing else, their suffering ended. They were both very, very sick: Caterina was old (She was close to ten years old when she and I adopted each other.) , and Kevin's immune system fell apart so thoroughly that it took a long and particularly thorough autopsy to determine what, exactly, killed him. However, the cause of the pneumonia that finally took him was clear: AIDS. He was one of many people in the twelve-step programs who died that way during the late '80's and early '90's, which were the first few years I spent sober. John, my second AA sponsor, also died that way nearly four years later. So, between them, Kevin and John guided me through my first decade without intoxicating substances.

At least John, Kevin and Caterina died when I had developed some resources, however rudimentary, for dealing with grief. But the first death I expereinced on the 23rd of December came much, much earlier in my life, years before even Cori's death. Adam had also killed himself, though by different means and for different reasons (at which I can, to this day, only guess) from Cori's.

Adam, who lived alone, turned on gas in his oven. Perhaps I will seem callous in saying this, but it really is a minor detail: Once you're dead, it really doesn't matter how you died, does it? Well, I guess to some of the living, it does, although their interest is, more often than not, questionable.

And what of the reasons why? I guess the previous answer applies here: They don't really matter to the dead person, only to the living. And why? One of Albert Camus's characters killed himself because someone didn't say "hello" to him that day. Just about any reason you can think of, someone else has had and didn't kill him or herself. This, I think, is the reason why so many people--and the religions they follow--say that people who kill themselves are immoral and weak, and their act is as evil as (or even more evil than) any homicide.

Now, I'm no expert on the subject (How, exactly, does one become one?), but I think that the ostensible reason a person might have for committing suicide isn't actually the impetus for the act--at least not by itself. Most people don't off themselves because other people didn't greet them, or even over seeing the sorts of things Adam saw in Bergen-Belsen. Or, for that matter, over the same dilemma about gender identity that followed Cori over the edge and me to the brink.

No, I belive that people who kill themselves--or who think seriously about doing it--are, in some way, like cancer sufferers. People who off themselves, or try to, are almost invariably suffering from depression. Sometimes it is overt; other times it is hidden so deeply that people claim not to understand why their friend, classmate, brother, sister or whomever made thirteen loops in the rope looped around his or her neck, pointed the barrel to his or her temple or leapt off the George Washington Bridge as Rufus did in James Baldwin's Another Country. Rufus's depression manifested itself as anger much like the kind I used to carry; others hide it or sublimate it for as long as they can.

In spite of their efforts, they suffer a kind of mental and emotional meltdown analogous to the shutdown and destruction of organs in the cancer patient's body. It reaches a point at which neither they nor anyone else can reverse it; if other people notice, all they can really do is to keep that person from harming him or her self, and to do whatever possible to help that person gain the tools or other resources he or she needs to stay alive long enough for a cure or remission. Telling them that pain is temporary is like telling a cripple that he, too, will win eight gold medals if he follows Michael Phelps' training regimen.

Anyway...I do know this much: The two most difficult days of almost every year are almost over for this year. I had dinner with Dominick a little while ago; now it's time to pack and do other things I need to do to get ready for tomorrow, when I fly to my parents' house. That, too, will pass, if more quickly than I'd like.

If only Toni, Cori and Adam knew...