Fall of 1990, in the isolation wing of St. Luke’s Hospital in Bethlehem, Pennsylvania I am holding the hand of a twenty-four-year-old man, Joey, as he faced death in less than twenty-four hours. He had asked me to pray for him but my reluctance to pray aloud and my overwhelming emotions at the moment silenced me. I didn’t know Joey that well, and I was not an AIDS-Buddy for anyone let alone Joey whom I had met two months before that night.
I had attended several funerals or memorial services since moving to Allentown to work for Air Products and Chemicals. Some of the services were for people I had met briefly or knew through my volunteer work teaching a workshop called “Eroticizing Safer Sex for Gay Men.” I was at some funerals for men I had never met but attended because their family was not attending, or they had lost all their friends out of fear of contagion or association or through death. I was under constant pressure from friends who were Gay activists or from leaders of non-profits serving the Gay Community or those with AIDS to volunteer to be a “Buddy.” I was especially pressured by my boyfriend at the time who was vice-president of Fighting AIDS Continuously Together (FACT), had been a Buddy to three of the men whose funerals I attended, and would die from AIDS-related complications nine months after we split up. I gave money to FACT, was trained by the New York Gay Men’s Health Crisis group to deliver the safer sex workshop, but always resisted becoming a Buddy. I listened to stories from my boyfriend about AIDS Buddies being with their Person with AIDS (PWA) as the PWA died. I heard stories about PWAs losing control of bodily functions and Buddies having to change adult diapers. I did not feel strong enough to be in such a relationship, and I (with great guilt) avoided putting myself in a relationship with someone who was dying. Such was the disease then – a certain death sentence with no treatment, no cure, and no hope. Such was the embarrassing cowardice that I feared being infected by a PWA, even though I taught the workshop that showed how to lower the risk to “almost zero,” even if having sex with an infected person.
So how did I come to be in that hospital room with Joey as he was facing death? A friend of mine who attended the same church I did, Grace Episcopal, had started a non-profit to minister and pray with PWAs as well as be their Buddy. The founder had gone through FACT's Buddy Training and discovered that some of the Buddies did not believe in God and would refuse to pray with PWAs. Her organization offered a choice to PWAs who had spiritual beliefs and desired prayers. My friend pressured me every Sunday to be a part of her organization as a Buddy, but I refused her entreaties as well. She asked me one Sunday if I would “at least” be willing to speak at the graduation of her first “Spiritual AIDS Buddies” graduation and I agreed.
My graduation address used the Wizard of Oz characters as a metaphor for their upcoming challenges. I showed clips of each character and talked about their need as Buddies to use:
Their Brain (Scarecrow) to remember all the facts, data, and skills they had learned. They needed to figure out how to keep themselves safe from infection while they ministered to their PWA.
Their Heart (Tin Man) to react lovingly when the facts and skills required needed to be violated or were never covered.
Their Courage (Lion) to deal with health care professionals, families who had rejected their Gay son but who now wanted to control everything, boyfriends who had abandoned their partner when they heard the diagnosis and wanting back in, and to deal with many people who saw PWAs as lepers because they believed AIDS was airborne.
Their Leadership (Dorothy) to pull it all together and to keep a bright, optimistic outlook with their PWA as they “follow the yellow brick road” by keeping an eye always on the mission – to lovingly get everyone “home” safely.
I had chosen this movie for many reasons, the main reason being the symbolic connection to the Gay Community. In earlier times when homosexuals were arrested, or beaten, or killed for acknowledging their sexual orientation, a code “Friend of Dorothy.” helped us identify each other safely. I was very proud of my speech, and while I was delivering it, I saw Joey in the group enthusiastically reacting to every use of the metaphor I presented. He was the kind of audience member every speaker desires.
As the diplomas were handed out, I shook hands with each newly minted Buddy in the group and congratulated them. Many hugged me, and several kissed me on the cheek, but only Joey hugged me, quickly kissed me on the lips, and asked me to autograph his diploma with my name and “Friend of Dorothy.” He told me that he loved movies and loved what one could learn from movies. He handed me a slip of paper with his name and number and invited me to call for coffee or lunch so we could “dish movies.”
I didn’t call him. I could say I was too busy. I could say I was traveling too much. I could say it was because my friend, who started the non-profit, told me that he was one of the two participants who had AIDS and he had trained to be a Buddy to someone closer to death. I don’t remember why, but two months later my church friend called with the news that the “young man who loved and talked about your graduation speech constantly” was in the hospital. His doctor advised that he could not live more than a day or two and that he should put his final wishes together. She called his parents and was told that Joey "had died when he was nineteen and came out" to them and they did not want to know about or be involved with his funeral. She had shared that information with Joey and asked if there was anyone else she could call. He said, “Bill, the Friend of Dorothy who spoke at graduation.”
I stopped at a jewelry store on the way to the hospital and bought a small Tin Man collectible. I was going to buy the whole set of characters, but could only afford one. When I walked into the room, Joey was unrecognizable. He was skinny when we met, but had lost a lot of weight. I remembered that he had very pretty blue eyes which were now enshrined in dark circles and seemed to have sunk into his head. His once healthy thick blond hair hung wet and limp over his ears. His color was ghostly white except for dark brownish purple Kaposi Sarcoma lesions that dotted his face, neck, scalp, and hands. He smiled and reached out a white thin-skinned, boney, purple lesioned welcoming hand. I tried not to look shocked or to reveal my repulsion as I grasped his hand. He said, “I can’t stay awake or conscious long so before I drop off could you pray for me?”
Holding his hand I bowed my head but just in the middle of “Heavenly” my voice and my resolve to not cry broke and I choked unable to speak another word. Joey picked up, “Father, bless this smart man who blesses others with his gifts from you. Lord, forgive my family for not accepting me. Bless Linda for being my Buddy. Please Jesus, let me die without a lot of suffering unless you think I need to suffer more. And Father soften President Bush’s heart, enlighten his brain, and give him the courage to fund research so others don’t have to die like me. Welcome me to heaven Lord, I’m scared but I’m ready.”
At Joey’s funeral, there was no biological family present, but we, his family of choice attended. We had a full Episcopal service with the ten of us gathered. Joey’s cremation and all expenses were covered by a “closeted Gay Lehigh Valley businessman” who wished to remain anonymous.
When George H W Bush took office, there were 451 deaths per year attributed to AIDS, but in 1993 when he left office, 40,000 Americans were dying each year from AIDS. Despite massive efforts to convince 41 that he needed to lead, to fund CDC research into drugs to prevent and treat AIDS, he refused. In the debates with then-Governor Clinton when Bush was asked why he was not increasing spending for AIDS research his response was focused on an AIDS activist group ACT UP who he whined had ruined his vacation at Kennebunkport.
I admire much about GHW Bush, especially in comparison to the current sad excuse for a human (let alone a President -Trump) with whom we are suffering, but I cannot think of him without thinking about the countless young, at one time healthy men who died during his tenure because of his indifference. I cannot think of him without hearing Joey’s final prayer. Bush was asked once what he would do if one of his children or grandchildren was Gay and he said that he would tell them that he “loved them no matter what” and that he disagreed with their choice, because “homosexuality is wrong.” This is why I didn’t post anything about Bush’s legacy last week after his death unbelievably on World AIDS Day. His morning-to-night coverage and praise insured even less recognition for World AIDS Day than usual. The endless repetition of his "kind and gentle" approach and his many accomplishments, for the most part, ignored his abysmal record on AIDS.
https://www.theguardian.com/us-news/datablog/2018/dec/07/george-hw-bush-aids-crisis-graph-data#img-1
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