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.

Yet.

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.