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Thursday, June 02, 2011

AIDS: 30 years later

It was the summer of 1981 - probably late August or early September. I had just learned that I was pregnant with our last child, who was born in May of 1982.

A buzz was going through the hospital where I was working as Maternal Child Health Coordinator in Maine - as well as in the gay community there  - about a heretofore unknown but highly contagious and deadly disease called GRID.

GRID = Gay-Related Immune Deficiency.

It was so named shortly after the June 5, 1981 issue of the MMWR (Morbidity and Mortality Weekly Report) newsletter reported unusual clusters of Pneumocystis pneumonia (PCP) caused by a form of Pneumocystis carinii in five homosexual men in Los Angeles.

In the next report, on July 4, 1981, the number jumped to 28 homosexual men, this time in LA, San Francisco and New York City. By August of 1981, the numbers continued to increase at an alarming rate, so much so that people were beginning to grow increasingly concerned.

A few cases were reported in Boston, but, so far as anyone could tell, it had not yet reached Maine.


Health authorities soon realized that nearly half of the people identified with the syndrome were not homosexual men. The same opportunistic infections were also reported among hemophiliacs, heterosexual intravenous drug users, and Haitian immigrants - male and female.

By August 1982, the disease was being referred to by its new CDC-coined name: Acquired Immune Deficiency Syndrome (AIDS). By then, however, the damage had been done. AIDS was the "gay disease" - and many religious communities were quick to proclaim that AIDS was the judgment of God on homosexual men.

Well, truth be told, while some people felt some sympathy for those with hemophilia, no one really cared about intravenous drug users and people of color - especially Haitians - either.

While the medical profession and gay community were buzzing with this newly identified and still mysterious disease, the government was even more mysteriously silent.

It was the years of the Reagan Administration which would not speak about the disease. However, it did "allow" the CDC and the NIH (National Institute of Health) to report on it and begin to disseminate information and education.

That silence on the part of the Reagan Administration would prove to be the major contributing factor to the AIDS epidemic becoming a world-wide AIDS pandemic.

Thirty years later, I'm still trying to find forgiveness in my heart for that historical fact.

The gay community, however, slowly began to realize that our own silence about the fullness of our humanity - including our sexual orientation - made us part of the problem. Indeed, we could have easily been indicted for our complicity in the silence.

More and more gay men began to 'come out' of the closet of secrecy and silence - usually at the high cost of losing the love of their parents, siblings and families.

Undaunted, they began to form liaisons and partnerships with communities with which they had never previously been associated - people of color, Intravenous Drug Users, and lesbian women.

Oh, there had always been heterosexual women who had played with and fawned over gay men. They were known as "fag hags" who loved the sense of fun and fashion known in the gay community. But, lesbians? Well, we were a whole 'nother smoke.

In the past, most relationships between gay men and lesbian women were formed out of a collusion to keep our sexual orientation secret. We would take vacations and cruises together, or go out to a good restaurant together - just two couples having a grand time. Except, of course, the "couples" were of the same sex, one of whom would slip into the other's cabin or bedroom at the end of the night.

It is my observation that there were, at least at the time,  more lesbians in the field of Public Health than in any other area of medicine.  My theory is that Public Health medicine - especially Public Health nursing - offered women more freedom and independence than any other specialized area of medicine or nursing.

You may have noticed that lesbians are, for the most part, a pretty feisty, independent lot, so it shouldn't come as a huge surprise that we could be found in places that allowed us to think and act without the usual male physician looking over our shoulder.

Indeed, in Public Health Nursing, many of the doctors relied heavily on our ability to assess symptoms and suggest alterations in treatment plans.  That became critically important as hospitals became overcrowded with AIDS cases and doctors sought to manage care from the person's home.

When we began to see more and more people with AIDS in our home care patient census, a liaison began to develop between gay men and lesbians. It was uneasy and awkward at first - like teenagers at a High School prom who really didn't want to dance together - but the intensity and severity of the progress of the disease tore down walls and quickly melted any lingering barriers.

In 1987, six gay activists in New York formed the Silence = Death Project and began plastering posters around the city featuring a pink triangle on a black background stating simply ‘SILENCE = DEATH.’

In its manifesto, the Silence = Death Project drew parallels between the Nazi period and the AIDS crisis, declaring that ‘silence about the oppression and annihilation of gay people, then and now, must be broken as a matter of our survival.’

The slogan thus protested both taboos around discussion of safer sex and the unwillingness of some - especially religious communities - to resist societal injustice and governmental indifference. The six men who created the project later joined the protest group ACT UP and offered the logo to the group, with which it remains closely identified.

Artist Keith Haring embellished that logo by adding, "Ignorance = Fear", which was a message not only to the gay community to break their silence and insist on the information they needed to fight AIDS, but it also served as a judgment against all those whose ignorance about human sexuality, sexual orientation and the disease itself was contributing to the second epidemic:

AFRAIDS - Acute Fear of AIDS.

It was June, 1983 before I met my first Person With AIDS. His name was Jimmy. Jimmy Mac. He was a handsome man in his early twenties who was a popular DJ with one of the Boston radio stations.

I was doing my first rotation of  Clinical Pastoral Education (CPE) at Boston City Hospital that summer. I was assigned to the Oncology Unit where, because their immune systems were as suppressed as people receiving chemotherapy, most of the AIDS patients were being sent.

I can't tell you how shocking a sight it was to see young men in the prime of their lives whose faces were gaunt and marked with angry-looking, purple Kaposi's sarcoma. Their bodies were so emaciated, the scene looked like something out of a picture of an interment camp in Nazi Germany or a famine in Africa or Asia.

I remember the first time I walked into Jimmy's room, trying not to look shocked and stunned, and silently grateful for the required paper cap, gown, boots, mask and latex gloves I was wearing.

Jimmy took one look at me, saw the fear in my eyes, and said, "Well, girlfriend, in case you didn't know, you are just a fashion mess!"

I started to giggle and said, "What, isn't light blue paper "in" this year?"

"Oh, no, honey," he said, "It's much worse than that. Look at you," he said, pointing a thin finger from my head to my toes. "Your gloves don't match your shoes."

We giggled and laughed for at least a few minutes.

I'll tell you this - when you can laugh in the midst of such devastation, something shifts in your soul. I've discovered that, in such situations, laughter is not only a statement of faith, it forms a bond that even death can not destroy.

After Jimmy was discharged from the hospital, we became a team - Jimmy and I - working together on the Interfaith AIDS Coalition, bringing important information and education to churches and synagogues in Boston.  We were quite something together. Jimmy would always introduce us by saying, "She's the 'priestess with the mostest' and I'm the pretty boy with AIDS."

I think the key to our success was that we made people laugh. Oh, we also made them cry - who wouldn't, looking at Jimmy's once handsome face riddled with KS lesions.  It's amazing how invisible they became once Jimmy got us to laugh. Which he did. Often.

Tears soften the heart, but the laughter allowed the mind to open.

We also broke a few rules in our time together - like always offering to accompany people when they went to be tested anonymously at the local clinic - but, as Jimmy always said, "A girl's gotta do what a girl's gotta do."  

I have many, many 'Jimmy Mac' stories, but I'll leave you with this one which has become, for me, emblematic of the most important lesson I learned from AIDS. (You knew you couldn't escape without a story, now did you?)

It was the last time I ever saw Jimmy alive. He was back in the hospital. He was as weak as a kitten, his breathing labored and his voice raspy.

"Thrush," he said, referring to a fungal infection, "in my throat and mouth."

His voice that was just above a whisper, but I distinctly heard him say, "Reminds me of a date in Chelsea who also left a bad taste in my mouth."

We giggled. Wickedly. Again. Like we always did. This time, however, his laughter set off a paroxysm of coughing. I rushed to his side, holding his thin, frail, paper-thin hand in mine, which was covered by a latex glove.

When the coughing had stopped and he caught his breath and regained a bit of his strength, he said, "You know the worst part?"

"No," I said, fighting back the tears.

"I've been here almost a week. In that whole time, no one has come near me. No one has touched me, except when they have on those damned latex gloves. And, you know," he said, unable to resist the humor, "I've never been one for latex."

He looked at me - through me, really - his eyes brimming with tears. "Touch me," he said. "Take off the damn gloves and the mask and touch me. Please?"

Even though I knew the rules - even though I knew I was breaking the rules - I took off my mask and gloves, crawled into bed with him, and held him in my arms, rocking him gently.

I started to sing softly to him, "Jesus loves me, this I know. For the Bible tells me so. Little ones to him belong. We are weak but he is strong."

We were like that for a while,  not moving, even when a nurse came in the room and saw us, and heard us singing, "Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so."

She simply nodded her head and slipped silently out of the room.

Love changes everything. Love has the potential to change the world, if we just open our hearts to it.

Love fills your heart and breaks it open, like so much sacramental bread, allowing you to have the courage to break a few rules when you need to.

To open your mouth and break the silence that is killing you.

To open your mind and break the ignorance that binds you in fear.

To find forgiveness in your heart when people don't live up to your expectations.

To break down walls and barriers that keep us from loving each other as Jesus loves us.

Thirty years later and we seem not to have learned this lesson.

Want to cure AIDS?

Here's my unscientific answer, based on years of experience:

Love the world so much that it breaks your heart and you break a few rules and tear down a few walls.

Thirty years after the beginning of the AIDS epidemic and well into the second decade of a world-wide AIDS pandemic, we've got nothing else to lose - and everything to gain.


Geeklet said...

"Love the world so much that it breaks your heart and you break a few rules and tear down a few walls."

I always pray to God that He'll break my heart that much. Always.

And this post made me cry, just fyi. You holding your friend and singing "Jesus loves me" made me tear up.

Thank you for this post.

Anonymous said...

Thank you, Elizabeth, once again you have touched my heart with your post.

The stories made me smile, thank God for Jimmy, but it is the transforming theology of love which has the capacity to change both me and the world.

Elizabeth Kaeton said...

Well, Geeklet, I'm sorry I made you cry but you know, that's what happens when God breaks your heart: Your eyes leak.

Elizabeth Kaeton said...

Thanks, Mark. Someday, you'll have to tell me the stories about AIDS in UK. Why not post a story on your blog? I'm keen to hear how it hit UK and see if there are any parallels.

Ahab said...

With your usual clarity and compassion, you have penned another deeply moving post. This brought years to my eyes too -- and reminded me of how our HIV positive brothers and sisters still need us.

Elizabeth Kaeton said...

Absolutely, Ahab. Now, more than ever. All around the world.

Turtle Woman said...

I'm not sure gay men intend to pay back the debt they owe lesbians for AIDS work. So 30 years later, I often wonder how one of the most marginalized groups was treated by gay men who supposedly cared about lesbians. When the movie "Milk" came out, the gay men who made the film erased the lesbian activists who worked along side Milk in fighting Prop 6 (anti-g/l teacher's iniative in the 70s). Sally Gearheart campaigned against Prop 6 everywhere with Milk, who would have not been listened too without lesbian support on this issue. Lesbian erasure continues, gay male indifference to feminist issues and women's rights continues unabated. Why is being a caretaker of men a radical feminist position? And what do women get in return? These questions need to be seriously addressed.

Turtle Woman said...

I'd love to see powerful writing dealing with lesbian issues and the issue of lesbian erasure in these so-called "coalitions."

Muthah+ said...

You are doing better than your beloved Red Sox on this one. Outta the park, sweetie. Outta the park.

Turtle Woman said...

P.S. Just so you know, a church in the Castro in the 80s closed down the food bank that poor lesbians relied on, so that all the food would go to AIDS patients. That mean lesbians then got no access to the food bank. Women who did AIDS work were paid zero, while the minute gay men were appointed to the post of AIDS ministry, they were given actual salaries. I think revisionism is a fine thing, but if you were there, you remember how lesbians were taken advantage of by gay men, and we won't forget.

Elizabeth Kaeton said...

Muthah - Thanks, lovey. You were there, in Boston, when the first waves were just starting to hit. You remember.

Elizabeth Kaeton said...

TurtleWoman - You raise an important point. Actually, the movie "Milk" kept in the lesbian activist - but lesbians were invisible in the early films about AIDS. I remember getting so frustrated at an ACT UP meeting - had to have been in the mid 90s and I had asked for help with a March for Breast Cancer Awareness - and yelling, "Damn it, I can still smell the blood and vomit under my fingernails and you boys are doing nothing about Breast Cancer, which is the #1 cause of death for lesbians." And, I walked out. It did get somewhat better after that. I did know lesbians who were hired by AIDS organizations. The misogyny and racism began to abate, but it took a while to reverse the curve.

All that being said, I do believe that AIDS helped us all to find our voices, and the more we found our voices, the more we were heard. So, out of this terrible tragedy, and turmoil and discrimination within our own Queer Community came some good. That's what I was writing about.

Indeed, I think we have the movement for marriage equality today because of those terrible years of AIDS. I think many people can see that, on the one hand, you can't deny marriage to Queer people and, on the other, complain that they deserve to die b/c they are promiscuous.

Some day, I'll write that story about how lesbians were treated - I didn't know about the food pantry in the Castro - but I'll write it for our community. Because, I can tell you from my own experience, assumed, unexamined, white male privilege is still alive and well and living in the Queer Community.

Hermano David | Brother Dah • veed said...

I spent much of my spare time in Seattle while going to seminary from 1986 to 1991 as a volunteer chaplain to Rosehedge House from the MultiFaith AIDS Project of Seattle. RH was a hospice for people with both AIDS and chemical dependencies. I was the chaplain to the client patients, their families and to the staff and their families.

It was a full time, 40 hour a week, non-stipendiary job! I have many stories as well from those years. I learned quickly how to preach a funeral to just about any house!

Thanks for brushing away the cobwebs and leading this stroll down memory lane.

TW, I am sorry that your experience has been so bad with gay men. I can assure you that I have never been one of those gay men.

IT said...

Beautiful story Elizabeth. Another keeper that makes the point that the opposite of love isn't hate, it's fear.


Geeklet said...

Just an update - they were tears of joy in witnessing a storied memory of a moment of love and true humanity in a terrible situation. They weren't sad tears at all. Don't be sorry.

Elizabeth Kaeton said...

Dahveed - it was the absolute worst of times, wasn't it? I wouldn't want to relive them, but I'm a better person and priest for having gone through them. And, sweetheart, not to cast any doubt on your individual character, but I have to tell you that some gay men have not always been - indeed, are not today - kind to lesbians. Case in point: The most rabid opponents of the ordination of women has historically been - and remains today - gay men (most of whom are, admittedly, still in the closet).

Elizabeth Kaeton said...

IT - absolutely. That's one of the important lessons of those difficult years

Elizabeth Kaeton said...

Geeklet - Thanks for that clarification, my dear. Sometimes, tears are good.

susankay said...

The really terrible story is that the plague hit so much earlier and was not recognized. I got sober in 1979 at about the same time as a wonderful guy named Alan. He was diagnosed with Karposi's syndrome the next year and died. And then they identified AIDS. I can't tell you how wonderful Alan was. He was probably not counted as an AIDS death.

Cissy Taylor said...

Your message and reflections are extremely powerful. They remind all of us what we should be working to attain: Hope, love and acceptance for now and the future. Thank you.

IT said...

Re. the gay men and lesbians: I think that there is a certain type of gay man who is very anti women. These are often Gay Men with a capital G who are very active in identity politics. Or deeply invested in the closet. I think both classes are terrifed of TaTas. i have to say they dominate at a lot of GAY events both in and out of the church, which are very male dominated.

There are also lots of gay men who love women and love the kinds of ways we can relate together. These are the flirty gay guys that I love going out with. We know a number of couples like this whom we greatly enjoy going to dinner or dancing. I know some straight men who are also like this. These are the men who like sassy smart women. This is good, since I really like men. :-)

To be fair, there is also a type of lesbian who is anti-man, and even rude to any women who have been married to a man, or who are bi, etc. I call these lesbians the professional Womyn. They can also be very insular and rude.

BP and I don't live in a gayborhood or wear the haircut etc etc. We don't really pay attention to being GAY, so we find that kind of thing gets a little tiresome. On the other hand, we all have to come together for equality for all. I think that's one of the lessons of Prop8--the huge protest march we attended was filled with people like us, who "pass" and don't do the identity politics. Yet without those who have been aggressive about their identity, we wouldn't have a community to join.

Complex isn't it?

Turtle Woman said...

And there's more... we had a huge fundraiser for a hospice for women and children with AIDS. Guess what, about 4 gay men showed up to help with this event. So they didn't give a damn that in 1988-89 there were NO shelters or homes for women with AIDS in the San Francisco Bay Area, NONE , Zero nada. Women got together to make this happen. We went after sleazy gay male bankers in the area to cough up money for the mothers and kids. I could go on and on about this, but one big question remains... when are gay men going to repay their debt to lesbians, because I'm counting the interest accruing, and I don't see the commitment to LESBIAN ISSUES. What I see is white gay male arrogance, oppression, lesbian hatred and privilege writ large. The salaries owed lesbians, the movies like MILK that go unchallenged by GAY WHITE MEN who should be screaming and yelling at the erasure of Sally Gearhart, Robin Tyler and others who fought against Prop 6. Guess I have no sympathy, because women are expected to drop everything to care for men, but men rip off women, erase us, demean us, and then this stupid AIDS history gets erased as well. I want the record clear... gay men have done almost nothing for lesbian nation, its intitutions, its herstory... gay men hated every lesbian only business on Valencia Street, they had the bacanlia, they flooded Haight Asbury Clinic... they committed what I consider mass consensual murder by the mid-1980s, and no one is going to tell this truth. No one. Nothing makes me madder than the myth of gay male solidarity with lesbian feminism... the health needs of lesbians, the needs of women and children with AIDS in the late 80s, and the appropriation of Shanti Project so that critically ill lesbians got thrown under the bus because they had cancer and not AIDS. My fury and anger over this constant glossing over what really happened and white gay male supremacy knows no end.

Elizabeth Kaeton said...

Posted for Sr. June Thomas, OSH

Thanks so much for your article on AIDS. I have not yet figures out how to respond on the blog, so I am sending this directly to you. Please feel free to posit it if you like.

The first person with AIDS whom I met was a beautiful young man. I was working with the chaplain at Swedish Hospital in Seattle in 1985. He was a figure skater and in a long-term relationship with another man, whom I never met. When he (the skater) was diagnoses, he returned home one day to find all his possessions piled up outside the door and the lock changed. Fortunately he did nave the support of his family. But he was hungry to be touched by human skin, not by rubber gloves. In those days it was fear for the minister, not, as it came to be, fear for the patient. Fast forward to the next year, when I returned to Vails Gate and worked one day a week in a hospital in the city. The day after I accepted the job we learned that the chaplain had been diagnosed with AIDS. He was determined that he was going to live to be 40, at least that is what he said. He was really upset when we did more than a perfunctory celebration of his 39th. He actually died some time after midnight on his 41st birthday. I really believe he meant to get though that year, anyway he did. The last time I saw him he was so thin I hardly recognized him. I was stationed Augusta by the time he died, and the next time I went up to Vails Gate for meetings, Sr. Andrea met my plane and took me by the cemetery. It is so hard to write this. I am choking up. Since them of course I have known many people with AIDS, and I can't tell you about all of them. One incident stands out in my mind. We allowed the newly formed MCC church to hold services in our chapel in Augusta for five years, until they were on a firm enough footing to get a place of their own. One day the pastor came to me to ask if he could borrow a processional cross. He was about to bury a newborn baby who had died of the disease. He did the burial service, but in the end it was too much for him, and he literally deserted his lover, his congregation and Augusta. I don't know where he went, but the congregation is still here and flourishing.

Sr. June Thomas, OSH
Convent of St. Helena
3042 Eagle Drive
Augusta GA 30906
706-798-5201 Ext. 216

Elizabeth Kaeton said...

Thanks so much for sharing your memories with us, June.

I wouldn't want to live those years over again, but I don't regret one minute.

Elizabeth Kaeton said...

Susankay - I'm so sorry for your loss of Alan. I trust your love meant a great deal to him at the end.

Elizabeth Kaeton said...

Thank you, Cissy. It's all still so very present for me.

Elizabeth Kaeton said...

IT - I think God loves absolutely everybody. And, I think God has some really incredibly bad taste. ;~).

It's complicated. With God, it's always complicated.

Elizabeth Kaeton said...

TurtleWoman - You know, if I did anything thinking about repayment, I'd sit on the couch all day long. That's just me. The way I see it, there was a crisis. I had skills that could help. I did what I could, never expecting anything in return. Well, that's not exactly true. I did hope that I would see some gay men help with the organizing of our first March Against Breast Cancer. I learned a hard lesson, then, not to expect payback in any way, shape or form.

Friends are friends - gay, straight, trans or bi. I am blessed with loyal, faithful, forgiving friends. I am deeply grateful for that.

Suzer said...

Thank you so much for this, Elizabeth! How I wish you could be at our "30 Years of AIDS" memorial service tomorrow, and simply read aloud what you have written here. There would not be a dry eye in the church, I am sure.

(And should you decide a last-minute trip to Hotlanta is in order, we have a guest bedroom.)

I very much appreciate Turtle Woman's comments also, as it adds another dimension to the story of which I was unaware. I, too, have experienced the misogyny that some gay men express. It is a frustrating reality, and I'm not quite sure if it will change.

Elizabeth Kaeton said...

Suzer - I've been to All Saints, Atlanta a few times, so I know you have a very active LGBT Community in 'Hotlanta' and that there is vibrant AIDS ministry and work going on in your fair city. I'm sure many stories like the one I told will be shared tomorrow evening. Bring Kleenex.

Turtle Woman said...

Well, if you expect a world where women really do have real power over our lives, and where power is truly shared, I think you need to take a hard look at what really happened to lesbians and why gay men continue to be some of the most sexist and arrogant people around. What perplexes me is why women don't focus all their attention on other women, and continue to give support to the very people who leave so many women in poverty, and the poverty of working class lesbians is of epic proportions. The crisis of lesbians ill and disabled is of epic proportions, and yet I don't see gay men out in the streets in outrage over what is being done to lesbians or even to poor women of all situations, and I ask why? Where is the outrage? Where is the truth? And why are all the "30 Years Later" articles so completely out of it, never seeming to get at all this? The brutal mysogyny of the white gay male community continues, as does the escallation of the war on women--- through porn, rape, economic abuse. And somehow, women shrug and say "oh well" I have to care for the men, so I won't stand up against male supremacy. Or I won't report on it, or I won't find out that gay male organizations squeezed out meagre lesbian resources, gay men actually fired lesbians who became ill with other diseases, the very same men who were angry over gay men getting fired because they got AIDS. Now there is an expose waiting to be covered and honestly written about. If you go to West Hollywood today, you will see huge billboards telling about a syphilis epidemic... so obviously this means for the most part, very little was learned from the AIDS epidemic, and most certainly dead men can't talk. The few men who actually woke up and stood up against lesbian hatred and disenfranchisement are dead now, and women are in denial. It's a pretty pathetic story, but at least you will never be able to say you knew nothing about what lesbians had to say about the "other side" of the story. And that is small comfort, but I will NEVER forget, and I will bear witness to the erasure of lesbian points of view till the day I die.

Caminante said...

Another Sunday night weeper... we knew so little... I could not read And the Band Played On without getting furious about Reagan's blocking any help... your posting brings back the people I knew who died from AIDS... training with Hyacinth. May we never forget and ¡Presente!