The Plague Years~Life and Death with AIDS~Eric Rofes

Gay men in my cohort group rarely talk about surviving the AIDS Plague years.  Like other war survivors, we've learned that those who did not live through it just don't understand, and even more often, really don't want to hear it.  We do this with the pain of others, our knee jerk response is to "fix" the pain.

This is an article I wrote for the West Hollywood News in 2006.  At the end is one of the responses I got from a reader who also lived through those years.  Editorial additions are indicated with * .
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On the passing of Eric Rofes   

Wikipedia Page for Eric Rofes

I was scanning the news and found that Eric Rofes had died.  The news brought a flood of memories and feelings, most of which I had long buried.  Their eruption swept away the article I was planning to write and brought me to this place.

Eric was praised for his work, a vast body of intellectual and social writing, a wide trail of community organizing, which will stand on it's own in the his/her-story of the GLBT community.  His life and work embodied a generation of gay men of my cohort group, and his passing is significant for me on many levels.

With "Ivy League" credentials, a gift for writing books and articles which were welcomed by the intellectual community, and all the right introductions, he came to Los Angeles in the mid 1980s, and was the last male Executive Director of the L.A. Gay & Lesbian Center.

I met Eric when he first came to LA in 1985, shortly before I left town to go to Orange County to be Program Director of the AIDS Response Program of OC.  It was in that capacity that I met current West Hollywood city councilmember John Duran, then a law student working for Georgia Garrett-Norris and Marjorie Rushforth (attorneys) in Santa Ana.

Later, I returned to Los Angeles and became Assistant Director at Aid for AIDS.  In 1987 we found ourselves  organizing the first AIDS Cycle challenge (which has evolved into the California AIDS ride).  Ours was always a "fire and ice" relationship.  On one hand, I was aware of sexual interest/energy between us, and on the other hand, there was an undercurrent of competition.  Eric was newly single, his partner of many years decided he did not like life in LA, so he returned to the east coast, and Eric was in a lot of pain.  

There was another current going on at the time that almost every gay man was aware of, but no one was talking about.  The time bomb inside of my peers who were living with HIV.  Many of the male leadership in the community were sick, and the clock was ticking.  By 1990, most had passed away.  Dan Stone (co-founder of PAWS LA), Ron Stone ("Father" of West Hollywood), Werner Kuhn (Ex. Dir. OC GLCSC), Don Hagen (founder of Election Committee of County of Orange), Duke Comegys (president of the GLCSC Board), Sheldon Andelson (Lawyer, Banker, CA Board of Regents ,etc.), Peter Scott (fonder of Municipal Elections Committee of LA), David Quarles (Peter's partner), Bruce Decker (first chair CA State AIDS Advisory Task Force), Daniel Warner (founder of Shanti LA), Rick Saslow (Realtor, activist, board member of numerous organizations), Luis Maura (APLA), Phil Sheely (No on 64), Steve Kolzak (partner of author Paul Monette), and hundreds of others were all living with T-Cells that were exploding with HIV.  

We didn't really know what was causing the disease until 1984, when the CDC announced that it had found the cause, a strange new virus which they called HTLV-3.  The French discovered it a year earlier (LAV in 1983) but the information was not shared in the U.S. until 1984 because of medical politics in the U.S. by Robert Gallo, M.D. head of the CDC who was determined to get a Nobel Prize for discovering the virus.  The label HIV was part of the compromise which brought both men to Norway to receive the coveted honor for both discovering the virus.  

This new virus was a perfect fit for the human T-cell receptor, and it had two genetic particles inside, not the usual one.   It was the first, and perhaps only, virus ever discovered to have two genetic components.  I became immediately suspect that something was "interesting" about this, but no one else seemed to think it important.  I also thought the "green monkey" theory of origins, "Haitian Connection" and "Patient Zero" theories were strange explanations from what felt like a massive disinformation campaign.  At the same time that the official explanation was "green monkeys from Africa", no one was talking about the extensive Hepatitis B vaccine trials among gay men about two years before "GRID" (Gay Related Immune Deficiency) appeared in the early 1980s.  "GRID" was the first name for the disease, which was blamed on everything from poppers to disco music in it's initial stages.

These men who were dying, usually men in their 30s and 40s, at a time in life when one is just starting to find some comfort and security in life and career, were staring a miserable death in the face.  There were no HIV medications then.  The use of AZT, a primitive and potentially lethal medication was still in the trial phases of use.  At the time, the FDA took a minimum of 4 years to bring a drug into the market place.  So as the gears of government turned at a snail's pace, the obituary sections of the community papers were filled with the photos of handsome young men who were dying.  In the middle of it a friend, Fred Stolar, was run over by a bus at Santa Monica & Crescent Heights on his bicycle.  It was almost a relief to see someone who was NOT dead from AIDS during that time.

I became Co-Chair of the Gay & Lesbian Police Advisory task force in 1985, and soon found myself chairing meetings that were empty, the representatives calling in sick to never return.  In typical LA fashion, no one could just say, "I've got AIDS and am locked in my house because I don't want anyone to see the KS on my face", people created excuses that were less incriminating.  No one was talking about actually having HIV or AIDS until they could no longer hide the obvious.  At that point, they simply vanished off the social scene.  

With few exceptions, these men had relatively easy lives until the appearance of the disease.  Growing up in suburbs, attending good schools, planning to live long and prosperous lives, they were successful in their professions, and were floored by what was happening around them.  Like the very wealthy on the Titanic, they just kept behaving "normally" until the water came crashing in, convinced that somehow they would escape.

There is an empty lot on the south side of Santa Monica Blvd. and West Knoll Drive.  It was once the location of the the West Hollywood Athletic Club.  In the 1980s it was the hottest gym in north America for gay men.  Featured in many films, it was ground zero for the most beautiful men in the free world.  With perfect bodies, tanned, pumped and meticulously groomed, the men were of a level of perfection that even today is difficult to find.  Desired by all, "had" by many, they were the first to go.  In 1985, 117 members died in one year.  1986 turned in an even higher number, including the clubs stunning manager, Bill Miller.  It was as if someone came in with a machine gun and massacred everyone, but with viral bullets.  It was about that time that I started to believe that HIV was no accident of nature, but something far more insidious.

*  I didn't believe any of the theories regarding the origins of AIDS.  The theories offered felt too much like a "snow job" that was being "sold" to cover up the tracks of something bigger.  I had known Gay men who worked in virology research for years.  The fact that HIV had 2 genetic strands (all other viruses only have 1) was very suspect.  I was dating an M.D. at Kaiser Sunset named Alan Cantwell at the time.  Later he would meet another M.D. who agreed with me, and that collaboration became a book, still in print, "AIDS And The Doctors of Death."  Both of us were "outsiders" so no one was listening, though I did get Bruce Decker to read the book about a year before his passing.

On Highland Avenue just north of Melrose there is a coffee shop, "Highland Grounds".  Before that, it had been one of the most celebrated gay bars in America, "Greg's Blue Dot."  The owner, Greg Hammond was porn star beautiful.  In addition to the usual Friday and Saturday night festivities, Greg's was known for Sunday morning festivities, "Church" at Greg's for men who had been up all night and wanted a bit more drinking before heading home to sleep off the weekend and get ready for work on Monday.  Greg was occasionally seen having sex on one of the upstairs  banisters, or some other somewhat out of the way part of the club.   Upon realizing that he had Kaposi's Sarcoma and was losing weight, he hung himself one day at home, leaving a note saying that he had no desire to shrivel up and defecate himself into a skin covered skeleton before dying a horrible death.

He wasn't alone.  On Hyperion and Lyric, where a small theater is located now, was the Frog Pond restaurant.  It's handsome owner, Bob White, was the envy of many.  Personable, handsome and successful, he hung himself in the kitchen of the restaurant one Sunday morning after a month long cocaine binge, his response to his lover's death from HIV.

And the stories kept coming, two or three a week, "Did you hear, so and so died last week, they found him" and then it was fill in the blank.  

In the midst of all this death and insanity, too many "respectable" gay men went around declaring, "I won't get it, I'm not like most gay men, I don't" and then fill in the blank, "run around", "engage in casual sex", "use poppers" etc.  They all turned up with AIDS too.   A neighbor of mine called me down to his apartment one night.  Sobbing hysterically, he'd just found out a friend of his was dying, "He was a saint, never messed around and he's got it.  I'm gonna die too, I just know it."  I moved out to go to Orange County later that year.  When I returned to Los Angeles a year later, my former land lady's daughter recounted to me Ken Dill's last days, sitting in feces laden underwear on the apartment steps, dementia so bad he did not know his name.  With no family or friends, he just locked himself in his apartment until he died.  It took the landlord a month to clean the apartment, which had to be stripped, painted and carpeted, after airing it out for a month to get the smell of death out of it.

With no treatment or cure in sight, desperate men did desperate things.   Many were out to make a name for themselves before they passed away, some attempt at immortality.  Working in HIV prevention and services was seen as an option.  In the middle of this mix, Lyndon La Rouche and his followers put three attempts on the California ballot (over a three year period) to quarantine persons with HIV.  Visions of Manzanar and the interment of Japanese Americans in WWII flashed through our heads.  We would go to two meetings a day for six days a week.  It was usually the same people, must different locations.  We joked, "Why do all this driving, let's just have one marathon meeting for four days and get them all over with."

Ronald Reagan was the president who could not utter the word "AIDS" until around 1987.  In the midst of all this pressure, at one meeting a young staffer snapped.  He just started screaming, "Why doesn't someone do something?  Why isn't the president trying to help us?"  Being the jaded cynic that I am, I softly replied, "Because they want us all dead or locked up.  Once you figure that out, everything they're doing makes sense."   After the meeting, Daniel Warner quietly told me, "Ed, we all know it's true, but don't say it out loud, you know what they do to the messenger."

The movies, "Long Time Companion" and "Angels in America" both attempt to share the feelings of those days, but it is still difficult to feel it because they have become history, and it is difficult to feel history.  In the early 1990s a mental health colleague Fred Wilkey and I had a long conversation about the shared "Multiple Loss Syndrome" of those of us left behind.  It was the first time anyone had broached the subject, the taboo of silence being that powerful with regard to those of us who had not been infected and were still alive.

It is ironic that a large part of Eric Rofe's work in his later years was with the Highlander Center (for social change) in Tennessee.  One of the other board members, Jean Hardisty, writes on their web site;

"--- the South is also a place where a rich heritage of struggle, solidarity, culture, and courage ----.  it is also the cradle of resistance and survival.  --will (we) fail to learn from the Southern progressives how to resist when the odds are so stacked against you. The South is not just an area that serves as a template for how right-wing political and economic forces will come to dominate in other parts of the country. It is a goldmine of ideas, wisdom, strategies and tactics of resistance".  

Full text at:  www.highlandercenter.org/n-hardisty.asp

Having grown up in the civil rights south, I had an intuitive understanding of what was happening in the 1980s.  I had personally lived with verbal and physical threats, cross burnings, a shot guns stuck in my face and such for being a "ni--er lover."   I tried to share my insights and suggestions with my peers in southern California and found a cool reception.  Even though I had lived through situations similar to what we were going through, my counsel was not welcome.  

 After all, they shoot the messenger, and the curse of being me is that I often am the messenger.  

During that period, I found myself engaged with "community leaders" who were often short sighted, looking to fulfill a personal agenda, running scared and jealous.  I was strong and healthy.  Often, they were neither.   

Not unlike my 2004 - 2005 in West Hollywood politics, I found myself saying things that needed to be said, that made me very unpopular at the time, but later on turned out to be very true.  "We gotta get this uppity faggot out of here, he knows too much."  My personal and professional life was hell during those years and Eric was part of the chorus of tormenters pushing me out the door.

In the movie "Mandingo", the slaves on the plantation are engaged in the pursuit and capture of a runaway slave.  This fugitive had beaten and killed a cruel master, so when caught he would be killed on the spot.  The strongest of the group in pursuit, a slave named "Meade" (who is one of the main characters in the story) captures the slave and holds him till the whites arrive.  The slave speaks truth (paraphrased here), "They work us to death, treat us like animals, take our children away from us, and for what?  This is no life, this is hell"   He is saying this as he is strung up and hung from a tree, with his last breath, he continues to attempt to raise the consciousness of his peers, who stand by, watching him die, doing what their white owners have told them to do, too dead inside to contemplate anything beyond momentary survival.

In spite of our differences, and they were significant, I respect Eric for trying to work to elevate the consciousness of a community that has long been held in slavery.  He did it his way, I try to do it in mine.  It's never easy, which is why I've always said that we need to be as loving and supportive as possible with each other, something that does not often describe Los Angeles social dynamics.   I once told Steve Schulte over lunch that the irony of my life was that I moved 3,000 miles, to a region of 12 million people, only to rediscover the social dynamics of my high school of 938 students.  In the mid 80s, the LA Gay Community was a lot like "Mean Girls" but with less make up.

In looking back on those days, I still have painfully clouded feelings.  It was as if they rounded all of us up, put us in an arena and set loose a few dozen venomous snakes.  Sooner or later almost all of us would die, but while we were dying, there was a lot of blaming and back stabbing going on.  It was not pretty.  I don't think any of the high profile leaders survived, and the rest of us have all been marked for life for having lived through it.  

I find myself listening to the song, "Try Not To Breathe" by R.E.M. a lot these days.  In my mind the music holds the imagery of rowing over waves and swells in a boat, struggling with strong winds and current, straining to reach the other side.  The lyrics speak for themselves and to how I feel about the period in my life when Eric and I were fighting all the demons that surrounded us.  May he rest in peace.

I want to remember the price that was paid to bring us to the other shore, twenty years later.  With all of the pain and heartache, it was one of our finest hours.

Try Not to Breathe

(Berry/Buck/Mills/Stipe)

I will try not to breathe

I can hold my head still with my hands at my knees

These eyes are the eyes of the old, shivering and bold

I will try not to breathe

This decision is mine. I have lived a full life

And these are the eyes that I want you to remember, oh

I need something to fly over my grave again

I need something to breathe

I will try not to burden you

I can hold these inside. I will hold my breath

Until all these shivers subside,

Just look in my eyes

I will try not to worry you

I have seen things that you will never see

Leave it to memory me. I shudder to breathe

I want you to remember, oh (you will never see)

I need something to fly (something to fly)

Over my grave again (you will never see)

I need something to breathe (something to breathe)

Baby, don't shiver now

Why do you shiver now? (I will see things you will never see)

I need something to fly (something to fly)

Over my grave again. (I will see things you will never see)

I need something to breathe, oh, oh, oh, oh

Oh, oh, oh, oh 

Oh, oh, oh, oh

Oh, oh, oh, oh

Oh, oh, oh

I will try not to worry you

I have seen things that you will never see

Leave it to memory me. Don't dare me to breathe

I want you to remember, oh (you will never see)

I need something to fly (something to fly)

Over my grave again (you will never see)

I need something to breathe (something to breathe)

Baby, don't shiver now

Why do you shiver? (I will see things you will never see)

I need something to breathe (something to breathe - I have seen things you will 

never see)

I want you to remember

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From C.S.

Once again, you’ve blown me away. I think of you, frankly, as the Cassandra of the GLBT movement, an often unwelcome oracle of an impending future the myopia of the present won’t allow us to confront. But I had not experienced your power to re-trace our steps down the roads traveled in our history.

I could have written your column on the passing of Eric Rofes’ verbatim, had I your power with words – I had no idea you were living it, even as I was. My best friend (who fled L.A. before you arrived but knew all the “players”) has been easing me through the shock, grief and memories evoked by Eric’s death – especially about the love/hate relationship he and I also had. He was a giant. Giants need lots of room. Occasionally Eric found me in his space and never hesitated to tell me so. But we were on the same team (I also encountered him at Bear gatherings), knew it and acknowledged it – unlike the sexual smouder between us.

Your recount of the good old/bad old days also struck too close to home. I was still on the L.A. Gay/Lesbian Police Advisory Task Force when the trailblazing, irascible Justin Smith became the first, but not last, of its members we would lose to AIDS.

I was having dinner in Silverlake arguing G/L politics with future WeHo mayor Steve Schulte one night when his then-partner, Joe Thompson, impatiently interrupted my complaint about a fellow activist with a phrase I had never heard before, “Just get OVER it!”

I was dumbfounded when I finally “got” why AIDS activist Daniel Warner, the picture of handsome health, always seemed so unforgiving on the subject of safe sex, when I learned he himself had succumbed to the disease.

I fell hard for and got rejected by a guy all in a single encounter one Sunday morning at the Blue Dot – only to come to the eventual realization that, since everyone I knew in the place was now dead, being pre-emptively dumped probably saved my life.

The last time I saw checkbook activist and friend Duke Comegys was at the funeral of former Advocate publisher Niles Merton, who beckoned me to his bedside at Midway Hospital weeks earlier as I walked the halls in search of another friend, former Stonewall Democratic Club president Steve Weltman, whose room was down the hall from that of Republican WeHo activist Tom Larkin.

One night when we were still headquartered in Silverlake, the entire Board of Directors of Christopher Street West adjourned to the Frog Pond for a late supper, teasing our solicitous host, Bob White, about his well-known political ambitions, just weeks and steps from where he would soon hang himself.

And I thought I was the only one who remembered the death finale in “Mandingo” well enough to recognize its horrifying reprise in Polanski’s “The Pianist” decades later, when Jews in the film lay prostrate on command and remained that way – almost patiently -- as a Nazi officer calmly walked down the line firing a bullet into each of their heads.

Thank you, Ed, for conjuring up these disquieting images long suppressed from my own past – which is precisely why they need to be re-visited. Let us remember the pain, lest we doom ourselves to re-live it.