The visiting nurse was on the phone to the funeral home.
She pointed to a room with a closed door. Inside, Hobart lay on his back, his head slightly to one side, his mouth open, his eyes open. His fringe of hair had grown long and wispy since I last saw him. I pulled the sheet away from his body which was lean and emaciated. The unremittent fever had consumed the body, burned it down to this stringy remnant. There was the loud sound of sobbing in the next room and the sounds of children laughing and playing outside. Hobart’s face was incredibly sad, the eyebrows raised quizzically.
I put on gloves. I percussed down his chest to find the liver and settled on an interspace between two ribs. I pushed the biopsy needle in, felt it pop through skin and then slide into the liver. I advanced the hollow inner blade, then pushed the outer sheath over the inner blade. I pulled the whole thing out and held the needle tip over the bottle of formalin. A tiny wormlike core of tissue slid out of the needle into the bottle.
I got three or four more pieces of liver. Stab. Stab. Stab.
Then spleen. Stab. Stab. Stab. Heart. Stab. Lung. Stab. Into formalin.
A small victory here: this virus had killed Hobart. But it was not going anywhere from here but to formalin or to the crematorium.
THE WEEKEND WAS DRAWING to a close. All thoughts of the Little Black Dress had faded. I hammered out a paper describing the paradigm. The two maps accompanied the manuscript. I submitted it to the Journal of Infectious Diseases. The editor for the AIDS section, Dr. Merle Sande of the University of California, San Francisco, an internationally known AIDS expert, called me when he got the manuscript. He loved it! He thought it was important. But would I, instead of including just facts and figures, please add in a few anecdotes, individual case studies? I was delighted to.
The paper was a beginning, a rough start on a larger story, the story of how a generation of young men, raised to self-hatred, had risen above the definitions that their society and upbringings had used to define them. It was the story of the hard and sometimes lonely journeys they took far from home into a world more complicated than they imagined and far more dangerous than anyone could have known. There was something courageous about this voyage, the breakaway, the attempt to create places where they could live with pride.
No matter how long I practice medicine, no matter what happens with this retrovirus, I will not be able to forget these young men, the little towns they came from, and the cruel, cruel irony of what awaited them in the big city.
29
THE WEEK BEFORE THANKSGIVING, support group was much smaller than usual. Amazingly, old Ethan Nidiffer, despite his emphysema and his infirmity, had not missed a single session; he had even attended more often than Fred Goodson. Sitting next to him was Jacko, the KS on his eye hanging down like a shade. Vickie McCray sat next to Jacko. Fred Goodson was in his usual role as facilitator for the group. Other persons with HIV showed up sporadically; many lived much too far away to make it down.
At the last meeting, Luther Hines had shown up, stunning everyone in the room by his appearance. (Vickie, when she called and told me about it, said Luther had looked like a “Friday the Thirteenth character.”) Sheer willpower kept him upright. There was no muscle on his bone. He had sulked and tugged at his Hickman catheter. He had coughed without bothering to cover his mouth, a wet cough directed into the center of the group. And when he was asked to speak, he had launched into a tirade about me, about his parents, about persons with AIDS in general. No one had wanted to stop him. It seemed a miracle that a skeleton could harbor the energy to talk and also muster so much hate. Finally, even he tired of it, and he marched out in disgust. Raleigh, who had seemed determined to titter his way through every support group meeting, was, for the first time since anyone could remember, shocked into silence.
Bobby said now, “I hope Luther don’t show up. I swear I can’t bear the sight of him. And I was sitting next to him. Talk about bad breath, pheweee . . .”
“Bad breath is better than no breath,” said Ethan Nidiffer, puffing for breath even as he said it.
“In his case no breath might be a plus,” said Raleigh.
“But where’s little Petie Granger?” Bobby asked. “Haven’t seen him for a while.”
When Petie Granger came to support group, he usually sat between Raleigh and Bobby. He had been ribbed so much about his “back in Baltimore” utterance that he no longer used it.
“He called me four weeks ago,” Jacko said. “I think he only calls when his folks go out. He said he was getting weaker. He said he thought he had so few T cells that he was giving them names.”
Bobby Keller said, “We ought to all go pop in on him at home, pay him a visit.”
“Right, Bobby. That’ll be well received, his parents will love that,” said Fred. “They don’t even like him coming here. They don’t care for it when my sister calls from TAP.”
“Well I miss his ‘positive thinking,’ ” said Bobby Keller, imitating Petie’s unique hand and head movement and getting a laugh from Raleigh.
“You mean his whining, don’t you?” said Ethan.
“Now you don’t mean that, Ethan, as much as little Petie loved you, had the hots for you.”
“He’s not my type, Bobby. And neither are you.” He looked at Raleigh now. “Or you. Especially you.”
“Well, I wish I was somebody’s type,” Bobby said. “I tell you all, I am looking for a man. He has to have five things.” Here Bobby held up five fingers. “One, he has to be younger than me; two, he has to have his own car—”
“—That rules me out,” said Raleigh.
“—Three, he has to have his own place and not be living with his mother; four, he has to have money.”
He stopped now and said nothing. Vickie couldn’t take it anymore: “You said five. What’s the fifth thing?”
Bobby was still holding up his little finger, “The fifth thing I’m not telling on account of a lady being present. But I’ll tell you what, the fifth thing better be a whole lot bigger than this finger.”
Even Ethan doubled in laughter and had to reach for his inhaler to get his breath again.
Vickie interjected, “If you all are quite done, I think I’d like to say something about the quilt. I am making a panel for Clyde. And I know Fred and Bettie Lee are making one for Otis. And I feel like we should make a panel for Cameron Tolliver. We should set up a night where we meet and make a quilt panel for him seeing as he has no one that will make one for him.”
This was agreed on as a good idea. A night was fixed when they would all meet at Vickie’s trailer and begin the job. Vickie had received all the instructions on how to make the quilt panel.
Only Ethan Nidiffer grumbled about it. “I tell you,” he said, “I don’t want my name on no quilt.”
“Well, you have to be dead first, so don’t worry about it,” Raleigh said.
Fred intervened: “Coming back to something else we talked about. It would be a nice thing for us to do what Bobby said: not visit Petie, but we could call him. In fact, why not let us devote this meeting to those who can’t be here. Let’s call the members who are not here and just wish them well. Thanksgiving is coming after all.”
There was some discussion and it was agreed that this was a good idea. Fred brought in a speaker-phone from the minister’s office. He insisted if they were going to call, they should call all the members—even Luther. When Luther Hines picked up his phone and Fred explained that they were calling to wish him well, Luther said, “Wish me what?”
“Well, harrumph, just to wish you well, and Happy Thanksgiving and all that.”
“WHAT THE HELL DO I HAVE TO BE THANKFUL FOR?” Luther yelled and slammed the phone.
“He ain’t getting none of my turkey,” Bobby Keller said.
Old Ethan was livid: “I ought to go up there and put him out of his misery with my shotgun.”
The last phone call was to Petie Granger. It was a while before the phone was picked up.
??
?Hello?” a woman’s voice answered
“Can we speak to Petie Granger?” Vickie asked. It had been agreed that she would do the talking since the family was suspicious of men who called.
“Who is this?”
“Vickie McCray from the TAP support group.”
“. . . Petie died two days ago . . . the funeral was this morning. . . .”
Vickie was unable to say anything. The woman on the other end quietly disconnected the phone.
There was a shocked silence in the room. Raleigh began to cry. Bobby put his arms around him. Everyone stood up, hugged each other—even Ethan participated in the hugging—and then one by one they shuffled out.
THE MORNING AFTER Thanksgiving, before I went to work, as I sat down for a rare home-cooked breakfast, Rajani suggested we go to counseling. And I had a shocker for her: I told her I thought we should leave Tennessee on a sabbatical instead.
We were both taken aback. I knew the marriage was in trouble. But I felt as if it was primarily because we were living in a war zone. I imagined this period in my life as a strange and horrible time, the way it must have been in England during World War II: Each time you saw a friend you wondered if he would return. There was a sweet nostalgia that crept into all your actions at such times. You looked at every building and wondered whether it would be around the next day, whether your neighbor would be there to greet you.
I said I wanted to think about counseling. I wondered where I would find time. Time—or lack of it—seemed to be the essence of our problem. How would a counselor find me a way to free up time, while taking up more of my time?
“You can make time. If you can find time for Allen, for tennis, for your patients, you can find time for this. If you want to do it,” she said. She was shaken that I could consider leaving our town.
THEN, AT LUNCHTIME, a patient sitting two booths down in the smoking section of the VA cafeteria exploded. There was a flash, a bang and a scream—all at the same instant. I whirled around to see green nasal prongs trailing down from his ears, a mini-oxygen tank strapped to his wheelchair. He stared ahead with a petrified expression as if he had been struck by lightning. His hair and eyebrows were singed and still smoldered.
At dinner that night, the phone rang and I heard that Will Johnson in Kentucky had died. I went into mourning. I had to wait a week until Will Junior stopped in Johnson City before I heard the end of his father’s story.
Will Junior told me he had asked his father a few days before his death, “Dad, are you scared?”
“Afraid of dying? No, I’m just angry. I’m afraid of the process. I’m afraid of what I have to go through to get there. I have these bad visions of choking to death or gagging.”
Two days before he died he called Sarah Presnell. He said, “I’m in despair. I don’t want to feel any more pain. Can we turn up the morphine? But before we do, I want twenty-four hours without morphine so that my head is clear and so that I can see the family.”
In his twenty-four hours of lucidity, he said his goodbyes to his wife, children and grandchildren. The morphine was turned back on and he slipped into coma.
“The instant Dad died, we felt we had achieved a victory of sorts. It was like a touchdown, was the way I felt. Mom was weeping, but I think she felt the same way. What a life! And the suffering was over. We patted him, as if to say, ‘Way to go, Dad. You fought long and hard. What a life, Dad! What a life!’ I had a sense that I was sending Dad on to a better place. And it was a victory for him and a defeat for the devil. There were tears, a lot more tears to see how hard Mom was taking it, but there was joy in his death, in the end to his suffering.”
Will Junior said he kissed his Dad’s feet and his forehead. He remembered marching out of the room backward, not wanting to turn his back on his father’s body. The body was taken at once to the crematorium.
“You know, as soon as the body left the house, and I was sure that Mom was OK, I drove into town to get Kiwi polish for my shoes. I wanted to make sure my shoes were spit-shined for the wake and funeral.”
“Why?” I asked. He looked at me sheepishly. “I guess I can’t explain it. It was my way of honoring Dad; it was very important to me. All I can say is that Dad would have looked down and understood exactly.”
“How exactly do you spit-shine a shoe?”
“You take the cloth and wrap it tightly around your finger. Then you take a little polish and a drop of water, apply it to a section of the shoe the size of a quarter, and you rub and you rub until a shine emerges. You do this section by section. You need strong fingers, lots of elbow grease, and lots of patience. But when you are done, those shoes are so shiny you can look in them and shave!”
Will Johnson and Bess had planned their funerals, just as many years before they had planned their wedding. They picked the hymns and the verses from the Bible. They decided that the children should not participate and there was to be no eulogy. Will told his son that he did not want the funeral to focus on him. Instead he wanted people to see the glory of God.
The church was packed. The Brother Rats had their own little section, which Will Senior had reserved for them. His father had picked as the opening hymn, “Onward Christian Soldiers.”
The text was from Paul’s letter to the Romans. It had to do with faith, with unwavering belief in Christ. Will knew that so many of his business associates and his Brother Rats would be there and he wanted to reach them with the message. The preacher took the congregation through the text and he ended with this comment:
“It was here and nowhere else that Will Johnson put his confidence and hope, his trust. And he asked me to tell you today what answer God had for him. He knew that he would have many friends here today who did not know this truth. That is why he chose this text and asked me to speak to you frankly about it. This truth stands validated for Will now. But what of you? It was sure for Will, it must be for you and me, too.”
Only the immediate family went to the cemetery to bury the ashes. They read Psalm 23 at the grave site. Each family member took turns scooping ash out of the urn and placing it in the ground.
Will Junior told me when he dipped his hand into the urn, he could feel his father’s bones in his hands. And after he scooped up the ashes and put them in the grave, there remained dust on his fingers. He brought his fingers to his mouth, kissed them.
“I wanted in this last act to be a part of my father, to have my father within me. Though I think my wife looked at me strangely, it seemed the most natural thing in the world for me to do.”
“Did people know that he had died of AIDS?”
“There was no direct mention of it. But more than a few people knew. Some Brother Rats had come by to see Dad a few weeks before that; they knew and they told him they were with him.
“And the night of the funeral, my cousins from Washington, D.C., who had driven down to be there, were sitting in the cocktail lounge of the Holiday Inn. They heard some local say to another, isn’t it a shame that Will Johnson died of AIDS? And you know what? His wife has it too.’ ”
AFTER HER HUSBAND’S DEATH, Mrs. Johnson continued to lead a vital life. She would invite a grandchild over for a day and bring all her attention to the child from morning to evening. She continued to play the piano in church until she was too weak to go on. After the Sunday church service, she would do as she had always done, invite people—newcomers in particular—to lunch at her home, where she would have had a pot roast in the oven. But when she was asked by her son or daughter how she was doing, she would answer, “I am brokenhearted. Just brokenhearted.” And then, in just a few months, she wasted away. She began to have severe diarrhea. She seemed mad with the world, something no one had seen in her before.
Each day was a painful wait for the end to come. AZT, which had been made available to her early through a clinical trial, seemed to have lost its effectiveness on her, and she now quietly stopped taking it.
A few weeks before her death, she called her son and daughter into her r
oom. She said to them, “I want you to know that I am quite ready to meet the Lord face to face. I want you to know that everything is all right. I am now consigning your care to His hands, and He will look after you and guide you.” She then asked her son and daughter to take her to the cemetery. She wanted to see the plaque in the ground with her husband’s name on it that had recently been completed. She was so weak that Will Junior and his sister had to support her every step.
“It was the most awful walk for my sister and me. We knew that very soon—maybe even in a week—we would be making this walk again, but instead of supporting our mother between us we would be carrying her ashes.”
She was in a coma for many days. Every hour she would groan, and Will Junior and his sister would take turns holding her, kissing her.
When it appeared that the end was very near, everyone put hands on her just like they had done for their father. She was resting against Will Junior’s chest letting out little “hoooos. . . ,” each one louder than the next. They became more forceful, as if she was giving birth, as if she was trying to get out of her body. Just as for Will Senior’s death, they urged her on her voyage, coaxed her free from a body that, though familiar, was diseased and wasted.
But when she died, the weeping was more intense, the sense of victory less acute than when her husband had died. Will Johnson was the fighter—the metaphor of battle and victory that he espoused had come to a head at the time of his death. He had won the fight. For Bess Johnson, her infection, her illness and even her death were quieter, more tender and tragic.
Will Junior, tears flowing uncontrollably, kissed his mother’s forehead and her feet and backed out of the room, making a square corner into the kitchen. He had work to do on his shoes.
Whereas Will Johnson’s funeral had been forceful and the message potent, Bess Johnson’s funeral was much more poignant. There was no eulogy. She had wanted the hymn “Holy, Holy, Holy” sung. The congregation had then recited the Apostles’ Creed, ending with, “I believe . . . in the forgiveness of sins, the resurrection of the body, and the life everlasting.”