Undisclosed: Secrets of the AIDS Epidemic from some Unlikely Survivors is a new book by Michal Milstein and Marlin Marynick, from TitleTown Publishing. It is a collection of memories from the early AIDS epidemic, edited and compiled in observance of the 30th anniversary of the first U.S. diagnosis of what later became known as AIDS.
The book interweaves memoir, expository nonfiction, community testimonial and original artwork to paint a portrait of the greatest plague of the last few decades.
Some notable contributors include Gene Matarese and Michael Smithwick, two of the world's longest-surviving AIDS patients, and Dr. Mark Katz, one of the country's preeminent HIV/AIDS physicians.
The authors also explore the epidemiological rise of the disease in America's gay community, weighing statistics against experience, bioinformatics against conspiracy. Although the mystery may never be completely solved, Undisclosed sheds light on the misunderstandings of the dawn of the epidemic.
What follows is an excerpt from Chapter 4: Testing 3,2,1: The First Tears
Cathie Bagwell eats half of her meal and briefly excuses herself to leave the rest on someone else's table; she is a native Southern Californian and could have eaten that guacamole forever if she hadn't made herself stop. Anyone whose ever scooped the flesh out of a ripe avocado knows the color of Cathie's eyes, the thin jade film that sticks to the inside of the peel and refuses to let go, the part that's supposed to make your face soft. They don't match the rest of her. She is the silk torn from the cornhusk, blonde and slight, the type of woman who would leave latticed pies on windowsills and never accept a milkman's advances. It's as if a tornado carried her from a distant prairie and deposited her in Silverlake, but Cathie wants you to know that she has always lived here, even if she won't live forever.
Jim Maple was a few inches taller than Cathie, about 5'7", with hazel eyes, a medium build, and "dishwater blonde" hair. While his partner of five years, Rusty, was dying in rural Floridathe first AIDS case in the county in which they livedJim asked the doctor if he "should be concerned." The doctor took some blood and told him he was "okay." Rusty became blind, demented, and covered with KS lesions, which "wept as if to make up for the tears he could never shed." Both men had served in the army, and Jim tended to Rusty like a wounded brother.
The day after Rusty's cremation, Jim got in his van and drove along the Interstate 10, "as far as he could get away." Time, to Jim, was now a quality rather than a quantity. AIDS stole his human foresight, his ability to plan. While the rest of the world revolved around the Sun, Jim's life seemed to be governed by a different sort of physics, one that sucked "days," "weeks," and "years" into a monstrous black hole and hurled them out the other end as "instants," "ordeals," and "nightmares." To a gay man in the early 1980s, time was an adjectivenot a nounand showed itself in a sick man's face like a green eye or a chipped tooth. When the Shanti bereavement group asked Jim how long it had taken him to get to California, all he could answer was, "Thirty packs of Marlboros and a halfway house."
Cathie knew that Jim might be HIV+, but still asked him to get a late dinner with her after a particularly affirming session. They were in bed together a week later, and Cathie honorably quit her job as a group facilitator.
"It wasn't a hard decision to make," Cathie remembers as she looks out the bistro window towards a particularly harsh July afternoon. "He was obviously bisexual, might have had HIV+, and was such a wonderful man that it really wasn't an issue for me. Maybe I have an unusual take on mortality. At the time, I had lost many family members and friends, and even though the pain of missing them was great, I wasn't traumatized. So, the fact the he wasn't going to live forever wasn't and issue for me, because no one does. I was very much in love with him, and he was worth being in love with. Our relationship wasn't built on codependency, but we always did what needed to be done to make the other person happy.
"I would come home from work at night and he would have a great dinner fixed. He was a chef who worked in a couple different nursing homes, places where people's only real interest was food. During Christmas, he would put on a really elaborate dinner for all the guests because he cared so much about making life special for them. He and I would decorate the tables with big packages with Christmas lights strung around them ... we would really go all out."
They married three months later. Jim's parents, George Wallace supporters for whom the word "gay" never extended past a pleasant afternoon, were ecstatic that their son had finally settled down with a woman. They prided themselves on being right all along: That "other thing" was just a phase. All was well.
Until the life insurance application the following year. An examining doctor phoned Jim and told him that his paperwork had been declined, and that he needed to see his own provider immediately, and "without disclosing too much, get tested for AIDS." Jim never figured out what "test" Rusty's doctor had ordered on him, but it was probably a general blood count. He clocked in at 50 T-cells, which equaled a less-than-two-year life expectancy.
Although the couple had unprotected sex, Cathie still remains HIV negative.
"It was like living in a state of terror," she remembers, "although I can't say his condition had a negative effect on our actual relationship. When he started getting really sick, I would go to work during the day, then take my bills and paperwork to the hospital and stay with him until I had to sleep. It was always terrifying to know that any hospital visit could have been his last. It was very difficult for us to make plans with friends because we didn't know when and where he would get sick.
"The last time he was in the hospital, he had had a massive seizure and was taken to the closest emergency room. His primary care doctor wasn't there so the staff had no immediate access to his records. They put him on a ventilator, even though he had signed a Do Not Resuscitate ( DNR ) form, and it took us 24 hours to get him off it."
Four months after Jim's death, the FDA approved the new antibiotic clarithromycin. Along with one other already-available medication, a person could now permanently suppress MAC, a deadly lung infection that occurs in about 30% of AIDS patients. This was a veritable cure. The following year ( 1992 ) , another medicinerifabutinwas developed as a prophylaxis that could prevent MAC from ever occurring. Cathie, with no evidence of MAC or HIV whatsoever, took a two-year course of rifabutin.
"I had to do it out of respect for Jim," is all she can explain. "I can't say that I wouldn't do it all again."