AIDS: A Matter of Urgency
Excerpts from my book to be published January 2017
Prologue: War Games
Today, 35 years after the first case of AIDS was described, we talk about ending the HIV epidemic by 2020. To understand what it will take to bring new HIV cases below epidemic levels, we need to know how we got to this point.
This book is for the record. It is my effort to document the early era from the first case reports in 1981 through the advent of combination HIV drugs in the early 1990s.
My Patients. Each one of them taught me something about the human condition. They were the real heroes. I was just the catalyst. It has been a privilege to be their doctor.
My colleague and Community Health Network’s head nurse, Carol Williams, said recently, “It was the best of times, it was the worst of times.”
We experienced the best of times when community people rose to the occasion to get involved in some way. Community people attended events, held fundraisers, volunteered their time and wrote checks. A grassroots group called Helping People with AIDS was formed in 1987 and raised a million dollars for the effort over its 17 years.
What was the worst of times? AIDS gutted a generation of people. Lives and careers were interrupted. Families were in turmoil. A new kind of stigma emerged.
At one point, it seemed as though all of my patients were 32-year old men who were facing death. Not all of them died under the eye of a watchful mother, either. Many were shunned by families and died alone in the hospital.
The contagion wars were no better. Fear of contagion drove people into a frenzy of irrational behavior and thinking. There were calls to quarantine people with AIDS, and efforts to outlaw gay bathhouses, gay bars, and adult movie theaters and bookstores. We shot back that those efforts would drive people underground, and that education, outreach and HIV testing were better alternatives. The discussions were endless, frustrating, and at times, ugly.
Why the war games mentality? It helped cut the tension. For a time during the early years, I wore army fatigue pants, black t-shirt and combat boots around the house in the evening and on weekends.
I told Steve Scheibel that I needed to set the mood, even though it was totally out of character for me. We laughed about it, but deep down, we knew it wasn’t funny.
In the end, my patients were the real heroes. I was merely the catalyst.
Chapter 8. The Neighborhood Paperboy
Mothers play a central role in my story. Sid Metzger formed a Mother’s Support Group at Community Health Network in 1989. Many of our patients came to their appointments with their mothers.
This chapter is called the neighborhood paperboy, but could also be called A Tale of Two Mothers.
Mother and Child, 1989. A gift of the artist, Kathleen Hanney on the opening of Community Health Network.
My patient lived with his family in the neighborhood where I grew up. In fact, he lived in the house of a high school friend. I had been in that house a thousand times, including many parties around the backyard pool.
When he started to decline, I began to make house calls. I would stop and have lunch with my mother on a Saturday, then walk to his house and check him out.
One day his mother said to me, “I know he’s going to die. We want to keep him at home so he can die here.” Her anguish was palpable. We hugged, and I told her that we would keep him at home.
The experience of most of my patients dying before their parents was upside down. It wasn’t supposed to happen that way. What do you say to a mother whose 23-year old is going to die? What do you say to any mother whose kid is about to die at any age? It gave me a sick feeling in the pit of my stomach. I wanted to find a way to keep him alive and I couldn’t.
Several months later when it looked like he was close to the end, I made another house call. I walked to his house from my mother’s.
Their house was on a corner. As I approached, I could see the swimming pool in the yard. It was the middle of a hot summer and the pool was still covered. I assumed that, because of the demands of their son’s illness, his parents never got around to opening the pool.
His mother, very tired and sad looking, greeted me at the door. He was lying on a hospital bed in the living room. The window was open and there was a breeze that caught the curtains in the window next to his bed. His pills and a glass of water were on a tray next to the bed. She said, “He had a fever this morning. I gave him a sponge bath to cool him down.”
I accepted her offer of a glass of ice water and sat in the chair next to the bed.
He was breathing irregularly. When I put my hand on his arm, he was cold, so I knew that he was close to the end. As is my habit, even when patients are unconscious, I talked to him about nothing in particular.
While I was talking, he opened his eyes, took a deep breath, sighed, and stopped breathing. He was dead at the age of 23. As I checked his pulse, I looked out the window at the covered swimming pool. Visions of my high school friends jumping off the diving board went through my mind. I looked at my patient’s face. His eyes were still open. Unlike in movies, real patients who die with their eyes opened do not close them when they take their last breath. I positioned his eyelids over his eyes. He looked like he was asleep.
When his mother came back into the room with the ice water, I led her to the bed. She looked at him and sobbed, then bent over him and kissed his forehead. She looked at me and said, “I’m glad you were here. Thank you for all you’ve done for him.” Quickly, she composed herself and said, “He never saw me cry in all this time.”
For the next half hour, we sat next to the bed. She held her son’s hand as she talked about him as a child; playful, energetic, lovable, how much he enjoyed their pool, that he was the neighborhood paperboy in high school. I told her how much I enjoyed her son’s high spirits. Then I told her of my experiences in her house when my friend lived there and that my mother still lived in the house where I grew up; something I had never mentioned before. As we talked, we discovered that her son had been my mother’s paperboy. Neither of us had any idea of the depth of our neighborhood connection.
As I was getting ready to leave, I asked her what I asked many families in that era, as uncomfortable as it was. I asked her if I could have his unused AZT. She said what every other mother had said to me in that same situation, “Yes, if it will help someone else.” She put pill bottles in a bag, we hugged, and I left.
On the walk back to my mother’s house, I thought about what had just happened. I had added another dimension to my old dictum that said your patients are your friends and your friends are your patients. My patients were also my neighbors.
I decided that I should talk more to families about the courage of their children and family members, and that I should thank them for their part in taking care of my patients, their loved ones. I hoped that hearing something good about their child might lighten a mother’s burden.
It was still early in the epidemic and I avoided going to wakes and funerals. I was the AIDS doctor. What was I supposed to say? “I’m sorry your son died before his time? We tried, but it didn’t work? They’re in a better place? I was without words.
I resolved to get over my bad stomach: Attending wakes and saying something good about the patient might make me more three dimensional and less like a talking head.
When I arrived back at my mother’s house, I sat at the kitchen table. Here was my own tiny sainted mother. She was calmly working her cooking artistry as she had for the past 40 years. My father had died two years earlier and she was cooking for my youngest brother who was still at home. As I watched her, I thought of my patient’s mother who cared for her son during his illness--giving him a bath on his last day. At least I had spared my own mother that agony.
I watched her as she worked, her spare rosary beads in her apron pocket, doing what she did so well - taking care of her family.
Out of the blue, I said to her that she did a lot for us as a family and I thanked her for it.
She didn’t miss a beat. Smiling, she looked up at me and repeated what she had said a thousand times while we were growing up, “That’s because I’m your mother.”
As I was preparing to leave, she pulled an envelope out of her apron pocket and handed me a check; her monthly donation to the clinic. “I hope this will help your patients,” she said.
I was emotionally drained by the day’s experiences with these two mothers and the love they shared for their children.
I kissed my mother good-bye and headed home.
Chapter 10. Anything for the Cause
I learned quickly that fundraising and asking people for money went with the territory. Fundraising events should not only be financially successful, but help galvanize the community around the AIDS crisis.
There were lighter moments, thankfully.
Our fundraising efforts were often reported in the media. I enjoyed these activities because they put a lighter tone on the darker events that were unfolding in clinic.
At the same time, we became fair game for media critics who evaluated our performances more on our artistic abilities and less on science.
I describe 4 fundraising events in this chapter. These events showcased our singing, dancing and acting skills.
My singing debut was with Dan Meyers and Dick Easton at a fundraiser where we wore matching negligees and sang the theme song from Dream Girls as the mothers of 3 younger, better dressed drag performers
Ballet. A year later, on the heels of this success, I approached my next role a bit overconfident. A local dance impresario asked us to perform in his annual Christmas performance of “The Nutcracker” as a CHN fundraiser. We made our debut on the Eastman Theater stage.
The Arabian Dance had been billed as the most sensual and erotic dance in all of ballet. Steve Scheibel was a magnificent shirtless Arabian with arms crossed, well-oiled and wearing a loin cloth, courtesy of the show’s enthusiastic costume designer.
I was cast as the character Mother Gigone (Mother Ginger) wearing a gigantic, 10 foot in diameter hoop skirt. I stood on 3 foot wooden stilts the size of small tree stumps strapped to my legs up to my thighs. A 40 pound harness to support the voluminous red skirt and Mother’s tall, floppy hat completed the costume. Fully dressed, this gigantic thespian was almost 10 feet tall.
“Places, everyone,” shouted the director, who instructed me, that as I entered stage left, to give an oversized wave over my head so the audience in the back rows could appreciate the wonder of it all. I was reminded that Mother Gigone was a humorous, silly character and to wave my arms and laugh as the children danced in front of me. I winced, “I should have backed out sooner. It was too late now.”
I shuffled onto the stage sideways being careful not to step on one of the dozen 5-year old “ginger babies” crawling and giggling beneath my skirt. One false move, and I would be on the floor, children would be crushed, and the show would be over. I was feeling the pressure.
When I reached center stage, the kids popped out from under the skirt and did their dance. Instead of being silly and amusing while the kids danced, I stood there frozen, fearful that I would tip over. Their dance finished, the kids scurried back under Mother’s skirt for the exit.
I completed this delicate balancing act without breaking my legs or stepping on a kid. I exited stage right and it was over.
Herb Simpson, the local paper’s dance critic, wrote about the event the next morning in a biting critique in which he called the show “a mixed dose of medicine,” and referred to us as “moonlighting MDs.” He went on, “Valenti had no idea what to do with the mugging role of Mother Gigone, but his friends in the audience whooped it up, ignoring the snappy dancing by the kids who emerged from under Mother G’s enormous skirts.”
Obviously, Simpson failed to appreciate my gymnastic skills.
The chapter ends with a vignette called, “A Movie Queen to Play the Scene.” In this story within a story, I recount my brief meeting with movie queen, Elizabeth Taylor, at the International Conference on AIDS in Florence, Italy in 1985.