AIDS Memories

Michael and I in 1981

by Mona Shaw

World AIDS Day hit me harder this year than it has in decades. I don’t know why.  I jotted down these memories as they came to me.  This is not a historical account of all that happened even in Iowa during that dark time. It’s not even the tip of the iceberg of all that took place. They are just a few things that I remembered during a day of deep and painful grief.

Imagine awakening one morning and realizing more than 30 of your friends have died. Friends your age and younger. Vibrant adults in their 20s, 30s, and 40s.

Now imagine that isn’t the hard part. Imagine your friends were killed, not by a crazed gunman, but by the president of the United States, while an entire nation stood, watched, and did nothing. And, it’s not just your friends, tens of thousands are dying across the nation. And, still, nothing is done.

Imagine being criticized for caring about them. Imagine being punished or persecuted for trying to get others to care.

This was my first direct experience of facing the reality that some lives don’t have value. It’s not that bad if they die, perhaps even preferable.

I remember the first time I heard about it in the early 80s on NPR.  It was a mysterious disease that had killed a few dozen gay men in California. Very soon the disease was called GRID, Gay Related Immune Deficiency. Like others, I wondered if this wasn’t an overaction and a reason to criminalize sex between members of the same sex. When my best friend Michael picked me up for lunch, we talked about it and agreed it was probably just Anita Bryant drivel trying to scare us from having sex.

Very soon, members of the LGBT community would learn that the matter would shed far more horror than we could have ever imagined.

By February 1, 1983, 1,025 AIDS cases were reported, and at least 394 had died in the United States. Reagan said nothing. On April 23, 1984, the Centers for Disease Control and Prevention announced 4,177 reported cases in America and 1,807 deaths. In San Francisco, the health department reported more than 500 cases. Again, Reagan said nothing.

We knew then, we had to save ourselves. Up until then gay men and lesbians were rather separatist. This galvanized us. Lesbians were among the first to organize care for men affected.

I cannot overstate how homophobia brutalized the discourse and the efforts of the day.  To show sympathy for those dying was considered support for gay people. Few wanted anywhere near that scarlet letter, no matter how they may have personally felt.  Most dismissed the crisis as getting involved in controversial politics. We were told it was unreasonable for us to ask, let alone expect, their support. The disdain for such a request was palpable. Ironically, we were accused of only caring about ourselves.

The dying men were political collateral damage. Not only was there no compassion for them, the hatred for them and all gay people exploded exponentially. A significant source of Reagan's support came from the newly identified religious right and the Moral Majority, a political-action group founded by the Rev. Jerry Falwell. AIDS became the tool, and gay men the target, for the politics of fear, hate and discrimination. Falwell said "AIDS is the wrath of God upon homosexuals. It’s God’s way of weeding his garden." Reagan's communications director Pat Buchanan agreed that AIDS is "nature's revenge on gay men."

I remember being outraged after hearing Falwell say that one morning on the radio. I exploded in the presence of a faculty member in my office.

“Come on, Mona,” he said. “If you want people to respect your opinion, you have to respect theirs.”

I was furious. “I’ll be damned if I ever respect that opinion. How many homophobes are dying because they’re homophobes?”

“Now you’re just being ridiculous,” he said, “That’s why you people aren’t getting any traction. You have too much anger and hate.”

You learn very quickly if you’re a serious activist, that playing nice is the thing that never gets any traction. You must rattle cages. You must cause trouble. That’s the only thing that ever effects change. Once these efforts break a crack in the opposition, the “reasonable” people like to show up and take over. But they won’t make that crack.

What happened in those years flows through my soul forever now like a sea of sorrow and despair. And hope. And love. Nothing happens without hope and love.  Memories will surface at unexpected times seeming non-sequiturs of justice that have yet to disclose their connection.

I remember.

I remember David Ellingsworth, getting royally pissed at me for calling a recent political win, “a start.”

“I am out of time, Mona! Don’t you get that!”

We were at an AIDS fundraiser at a local gay watering hole called 6:20. I watched him sing, “Stormy Weather” with his heart on his sleeve. I grabbed him and hugged him when he was finished.

“I’m so sorry,” I wept, “I’m so sorry.”

“It’s okay,” he patted my back, “I’m sorry too. It’s just so goddamned hard.”

I remember holding his mother Carol by his lifeless body in his coffin. She was inconsolable, but brave. She patted my back the same way he had.

Not everyone was lucky enough to have a mother like Carol. Many who died were rejected by their parents. Some died alone. Others were held by those who stood in as their surrogate families.  There were many, many saints.

I often stare at a photograph of my closest friends during the 70s and 80s. We're  

camping up it with coconuts shells in our shirts at a barbecue in the 80s. There are eight of us. I’m the only one in the photo still alive.

I remember the first memorial service I went to for a friend named Kerry Grippe in 1986. Kerry was a member of the piano faculty at the University of Iowa School of Music. A bottle of hand sanitizer was hung on his office door after he disclosed his diagnosis.  His lover, also a good friend, Allen Greedy gave me a framed fabric painting because I read Kerry’s poems at the service. Allen died about a year later.

Kevin Reeves was another close friend. We lived together. He was the best surrogate father my older son ever had. We were the First Family of Theatre. We had the sign on our front door. It was non-stop singing and slapstick in our home. Parodies of songs, often at my expense. He could sing, act, and played a mean piano. He killed Thomas Jefferson in his performance in “1776.” He promised me he’d be careful. He promised me. We lost him in November 1996.

I remember the first World Aids Day. Then it was called “Day without Art.” There was a choral and orchestral concert that day being given the University of Iowa School of Music. I was the School’s P.R. director. I knew the choir director couldn’t cancel the concert, but I asked him if choir and orchestra members could wear red ribbons.

“Oh, Mona, don’t do this to me,” Bill Hatcher said. “I don’t feel comfortable using my concert to make a political statement.”

“Bill,” I said, “People are dying. We have to do something.”

We looked at each other silently for a while.

“Oh, screw it,” he said, “If anyone wants to wear a ribbon, it’s okay with me.”

When I sat in the audience that night, practically everyone on stage was wearing a red ribbon. I wept, of course. I felt a corner may have been turned somehow in the struggle.

I know Bill took a hit for his decision, as did I for instigating it.  I am confident neither of us regrets the decision today.

I remember going to my third funeral in a week. I usually went to funerals with my close friend, John Harper, a gay man and a faculty member in the English Department.  I sat in the car thinking about not getting out. John looked at my quizzically.

“I don’t think I can hold another grieving mother in my arms right now,” I said. My bottom lip was quivering like it does in the cold.

“Sure, you can,” he said, “We have to.” And he took my hand and held it through most of the funeral.

Thank, God, John is still with us, and we have a lot we remember. I remember John returning from a trip to San Francisco in the late 80s looking pale and stricken.

“It’s like a holocaust,” he said. “The windows of clubs are totally papered with photos of the dead. There are thousands. Death is everywhere. It’s swallowed everything. I’ll never be the same.”

Survivors guilt among gay men was a very real thing. “Why him and not me?” was often heard. I remember Ozzie Diaz Duque reading a poem he'd written about it and one the many, many vigils.

I remember a woman becoming furious when the word “holocaust” was used to describe the epidemic or gay men in concentration camps in Nazi Germany. “In the holocaust,” she explained, “People were killed for no reason.”

I remember sitting and trying to list the names of friends I’d lost. I got to 33 and had to stop. Only to remember several more later in the day.

I didn’t only hold grieving mothers because their child had died. I held one after a woman at his funeral told her, “You must be heartsick knowing that your son is burning in Hell for all eternity.”

I remember flying off the handle at “liberal” Iowa Senator Tom Harkin who did vote for the Ryan White Bill, then later reassured a disgruntled constituent by explaining the aid was for those who hadn’t “gotten AIDS on purpose.”

I remember standing at vigils in all kinds of weather while we read the names of those we’d lost. Many I did not know. At each vigil, the list was longer. It took hours to read it.

I remember being told I had “gone too far,” when in a speech in Des Moines I referred to our governor, Terry Branstad, as “murderer,” because he resisted any funding in Iowa for AIDS treatment or research. I still stand by those words.

I remember giggling with Rick Graf about his large poster on a street corner in Iowa City. The poster was a chart of AIDS funding and listed several items. At the top, above the figures, were the words, “in Millions of Dollars.” There were two columns, one for federal funding and one for state funding. Each item had a great big “Zero.” Rick irritated as many people as he charmed in this day. He had a talk show on Public Access called, “Silence Equals Death: So, I’ll Just Keep Talking, Thank You.”  Rick died in 1995.

I remember the AIDS quilt. I remember traveling to D.C. for its last complete showing on the Capitol Mall in 1992. (It turned out there would be one more.) My best friend lived there. I stayed at his place. Michael had AIDs.

My bargaining with God had failed. I told God that I would give everything I had to the movement if he would just spare Michael. 

Like with all justice movements, you don’t get anywhere without some civil disobedience. ACT-UP had stepped up to the plate on that one, and we joined several actions. My favorite was when several thousand of us wrapped a red ribbon around the White House. It took a lot of ribbon.  Afterward, there was a rally in a green space behind the White House. A woman was distributing Xeroxed copies of George H.W. Bush, who was still president.

“Why are you giving me this?” I asked the woman.

“It rained last night,” she said, “You may want something to sit on.”

We put more hope in Bill Clinton, who would soon be elected, than he would come to deserve.

We sang while waving our fists in rhythm.

“Nah, nah, nah, nah, nah,

“Nah, nah, nah, nah, nah.

“Hey, hey, Goodbye!”

I meant to join in during the “Die In.” But as I began to lie back, I saw Michael. He was lying motionless, his eyes closed. I chose to just look at him instead. I knew I was losing him. I didn’t want to lose a moment of looking at him while I could.

Michael was/is the best friend I will ever have. I knew that then. I know that now. He was one of the friends some never get. He got me. He loved me so much and unconditionally. He thought I was “It.” He would go along with my every Quixotic mission, and he promised me as long as he had a place, I had a place. We had been close since we were 15. We lived together, ate together, slept together, lost in love together and hitchhiked together. He saved me time and time and time again. He was my safety net, my soft place to land. I could not, would not, imagine a world without him.

Michael died on the phone with me. I was supposed to visit him the following weekend, when his lover Aaron phoned me in a panic.

“He’s in horrible pain! He’s waiting for you. I can’t take it. He wants to die at home, but I have to put him in the hospital! I can’t do this!”

I asked Aaron to give me a minute. I spun in the room in the worst kind confusion. I called Don Engstrom, a friend whose advice I trusted. His partner Rick Graf had died the year before.

“I think, Mona,” Don said, “He needs you to tell him it’s okay to go.”

I phoned Aaron back, and asked him to put the phone to Michael’s ear.

I told Michael how much I loved him that he was the best friend I’d ever have. I told him I didn’t want to lose him, but that I would be okay. That if he needed to go, it was okay. Then the phone went dead.

In about ten minutes, Aaron called back.

“Michael asked me, ‘Did Mona really say that?’ I told him you had. Then he closed his eyes and died. 

It was December 26, 1996. We were both 45.