I shook my head.
“A couple of weeks ago, he ran off. Danielle and I went looking for him everywhere. None of our relatives would keep him without telling us, so we didn’t know where to go look. Finally I get a call from the Salvation Army shelter that he is there. Lord knows how he got there. I go there and he says he won’t come with me! No, sir! That he wants to go to the Grand Ole Opry before he dies, and I need to give him money and put him on a Greyhound. Now here’s a man for whom a one-dollar bill is the same as a twenty-dollar bill, for whom Tuesday is the same as Friday. How am I supposed to let him go to the Grand Ole Opry alone? I says to him, come home and we’ll talk about it, and I put my arm on him to take him away but he starts to hollering and they call the law. Well, the law comes over and say’s I can’t take him if he didn’t want to go. I had half-a-mind to tell them about the AIDS thing and I know they would have let me have him in a hurry. There was nothing I could do. I had to just drive away.
“The next morning I went and got a court order. I told the judge the way it was. I said, ‘He’s got AIDS and he’s crazy as a loon. He no more knows his mind than a little baby does.’ I get me the court order and go over to the Salvation Army and come to find out he’s gone over to the Haven of Mercy!”
“How did he know about these places? How did he find his way there?”
“You tell me! I don’t know! Beats the hell out of me. Makes me wonder how many other things about this man there must be that I don’t know? When I get to the Haven of Mercy they tell me he just done took off. I looked all over for him, and when I get home he calls me from the bus station. Says I need to meet him there right now and give him money to go to Nashville or else he was going to commence a-walking. Son, I believed him. I promised him if he’d just come back with me, we’d go. That afternoon we packed the kids and drove our old junker out to Nashville.”
Vickie grinned. “Spent money we didn’t have but we had us a good ole time.” She lit another cigarette. “We did it all. I mean all. Ernest Tubb’s music store, Music Row, a show at the Grand Ole Opry. He saw Minnie Pearl—gave Clyde a big kick, it did. And I was glad I took him. When we got back, Clyde calmed down a lot. See this was something real important to him and I didn’t know it. He knows he is going to die. Said it to me himself. After we came back from Nashville, he said there was one more place he wanted to go: the Knoxville Zoo. This time I didn’t fight him. As soon as he said it, the next day we were off. God must be watching us ’cause the junker made it all the way and back for this trip, too, them tires as good as gone and eating oil like you won’t believe. At the zoo, I got me a wheelchair and we pushed Clyde all over the place—me and Danielle. But he got real tired. On the way back he messed on himself in the car. It was a long trip, I tell you what. And I done cleaned the car a zillion times but I can’t get the smell out.”
Now Vickie swiped at tears with the back of her forearm. “I think now he is ready to die. He’s gone to the two places he wanted to go to. And ever since we got back, he’s taken to bed. He don’t act like he wants to get up and go anywhere no more. We’ve had quite a few accidents. No real diarrhea, thank God. But enough where I put a diaper on him if he’ll let me.”
It was time for me to go. I took my leave of Vickie.
“Doc, before you go, seeing as much as you’re interested in flowers, let me show you something.” She pointed out a shrub on the other side of the road with red flowers on it. “Do you know what that is?”
We crossed the road and I examined the plant: a low shrub with peculiar wine-colored flowers on it. Vickie snapped off a flower and put it in my hand. It was more like a pod than a flower. The pod had burst open to reveal a brilliant cluster of bright red seeds within, shining like polished pebbles. I had never seen anything like it.
“It’s called hearts-a-bustin’,” Vickie said. She nodded emphatically when I looked at her in disbelief. “Oh yes, hearts-a-bustin’. It’s also called ‘swamp dogwood,’ but I don’t care for that much. ‘Hearts-a-bustin’: That’s pretty much how I feel sometimes about what’s happening to me.”
23
ORIGINALLY, THE “OFFICE” for the Tri-City AIDS Project was the dining table of an ETSU faculty volunteer. From there it moved to Fred’s sister, Bettie Lee’s, dining table, where, with the guest leaf inserted, the office had doubled in size. But there was an acute need for a regular office with a business address, telephones, filing space, storage space for brochures. This was particularly true if TAP was to start receiving state and federal funds.
Fred and his sister, and later Bettie Lee by herself, did the searching for office space. Downtown seemed to be the place to look, since the fancy office parks near the mall or on the north side of town would be altogether too expensive.
There were office spaces in the floors above the storefronts of downtown. Because the courthouse was nearby, a number of lawyers kept their offices downtown, as did some accountants, chiropractors and bail bondsmen. But not enough to keep the buildings at full occupancy.
“Our criteria for an office space were simple,” Bettie Lee said to me. “It had to be donated to us and it had to be over 700 square feet.” A few weeks of searching and it became apparent that there would be no space donated. And with TAP’s meager funds, in place of 700 feet, they would have to settle for something a little larger than a broom closet.
“The first lead I had was when I talked to the secretary of a man who owned a downtown building near the old Majestic Theater. When I told her what TAP stood for, she says, ‘AIDS—Ooooh! Scares me to death.’ But she didn’t mind if I came and looked. And the space would have been all right for us. She had talked to her boss by then, and she wanted to clarify exactly what we would be using the office for. I said we had a support group but that it met mostly at the Episcopal Center and I didn’t envision the support group meeting at the office. The office would be mostly for paperwork and for meetings of the board of directors.”
The next day when Bettie Lee telephoned, the secretary put her through to the owner. He asked her, “Well, who exactly is coming here. Not people with AIDS, surely!”
Bettie Lee said, “Well, we don’t really ask.” She reiterated that the support group would meet elsewhere. The owner said he would have to do a poll of all the tenants and see what they thought of it. Bettie Lee called him back many times after that and was finally told by the secretary that they had done their poll and, unfortunately, the space would not be available for TAP. Other rejections followed.
Finally Bettie Lee found a place on Spring Street that had once been a studio for an artist, who had just moved out. The owner, a lawyer, had the same questions that Bettie Lee had answered over and over: Who exactly would be coming to the office? Would there be AIDS patients walking in there?
“Ultimately he did rent us the space, for which I was very grateful. We had no sign outside. Just a poster on the door. Our whole attitude then was defensive. I was conditioned by the way the town had reacted to the Connection not that long ago. You know: running them out of the neighborhood, smashing their cars when they parked there—We don’t want that element around, influencing our children—that kind of thing. When we first opened the TAP office, I worried about things like a pipe bomb every time I unlocked the door. And I was so hurt by the questions being asked about just renting an office space. My brother has AIDS. And of course he would be coming to the office. These people were acting like he was radioactive or worse, that if he entered the building it would contaminate the whole place.”
TAP’s office on Spring Street was across the street from a rooming house. It was common for panhandlers to approach Bettie Lee as she came and left the office. In the small park opposite the office, she would see drunks and tramps fast asleep after having spent the night there.
The little office proved quite inadequate. It was a third floor walk-up. There were many persons with HIV who came by, but they struggled with the effort of climbing all the stairs. The ceiling was falling in, water w
as leaking into the walls, and the mold and moisture made it an unhealthy place to be. The sound of pigeons scurrying on the roof was incessant and the window ledge was white with pigeon droppings. If part of the goal of TAP was informing and educating the community of both TAPs presence and TAPs mission, a third-floor walk-up with an entrance from a back alley, with no sign outside, was hardly the way to go.
AT LEAST ONE TAP member—Clyde McCray—was slipping. The dementia was getting worse, making him act as if he had “old-timer’s disease,” according to Vickie. He had begun to have seizures. Vickie and the children felt helpless watching Clyde’s eyes roll up and his body start flailing. The headboard slapped against the trailer wall like a grotesque musical accompaniment to his seizures. The only blessing was that after the seizure, after Vickie and Danielle had cleaned him up and held him and told him how much they loved him, Clyde would begin a long refreshing sleep. Vickie would go to the porch and have a quiet cry, burn up a half-pack of cigarettes before she could bring herself to go in again.
Clyde was back to diapers full time, and he rarely got out of bed. He would forget what he was doing and stop with his fork in his hand as if he had no idea what the instrument was for or how to guide the food to his mouth. Vickie would gently remind him and steer his hand with the fork in it so that it picked up the beans and went to his mouth. Sometimes, out of frustration at his condition, Clyde would begin to cry. Before he got ill, Vickie had never seen him cry.
When he cried, Vickie would hold him and rock him. Sometimes he would push her away, like a child throwing a tantrum, too angry to have its tears wiped.
Vickie called me and said that Clyde had become almost mute. “You have to prod him to get him to say anything. Danielle will go up to him and say, ‘I love you, Daddy.’ He won’t say nothing. She says, ‘Well? Do you love me?’ Nothing. Then she’ll say, ‘Daddy, say: I love you, Danielle.’ And he’ll come out with ‘I love you, Danielle.’ Otherwise, nothing.”
My partner, Felix, saw Clyde in the clinic. He took Vickie aside and told her that Clyde was fading rapidly. Did she want to take care of him at home? Would she want to consider a nursing home? Vickie was adamant that Clyde should die at home, in the bedroom, in the trailer with everyone around.
Felix told her what to expect. Clyde was likely to regress further, become totally dependent on her for all his bodily functions and eventually slip into a coma. Felix suggested it was probably time for Hospice of Johnson City to help provide care at home. A registered nurse would come out several times a week to check on Clyde. A trained volunteer would be assigned to the family to help deal with their emotional needs. There would be a nurse on call twenty-four hours, and Vickie would be trained in nursing skills such as taking his pulse, blood pressure and temperature. The word “hospice” shook Vickie and she began to cry. Hospice seemed so final, so terminal.
Almost on cue, the week after her visit, and once Hospice of Johnson City started to come by, the fevers and night sweats returned. Vickie was now taking vital signs, recording in a spiral bound notebook what transpired on her shift: how much fluid he drank, how many times he urinated, his level of consciousness, and his blood pressure. She had even picked up on words like “diaphoretic” and “dyspneic” and was using them in the diary and over the phone to Felix.
The only thing Clyde would eat was ice cream, and Vickie began to buy it by the gallon. He no longer talked at all. When the children came home from school, they simply climbed into bed on either side of him and they all watched television.
By the following week he barely recognized the kids or Vickie. He was taking so little fluid that hospice, under our instruction, had begun an intravenous line and administered IV fluids. I had talked to Vickie about the IV fluids. I said, “All it will do is prolong his life.”
“I know that,” Vickie said. “But I’m the one that takes care of him, has to watch him disappear piece by piece. And I can’t bear to watch him shrivel like a prune, have his skin shrink onto his bones, have his urine output drop to nothing.”
After the IV had been in place for three days, Fil called Vickie to ask how Clyde was doing. She said, “You can say he has more or less slipped into a coma. When I go into the room, I am afraid to come out again because of what I might find when I return. I am not sleeping: I am just going through each day like a zombie. Just functioning, just living and going on with the children’s needs. I feel as he dies, a part of me is dying.”
On a Tuesday, Clyde’s vital signs were dropping all day. The nurse told Vickie that the time was getting closer. Did she want to say goodbye to him?
Vickie told me later: “All I could think was: Oh, God, it’s here, it’s here, the time is here. I sent my cousin to the school to fetch Danielle because Danielle had very much wanted to be there when her father died. Danielle was my partner, helping me take care of her Daddy all those days. We had kept Junior away when Clyde got real sick. Danielle said she wanted to be there when he died, no matter what. At fourteen I decided that she was old enough for that if that was what she wanted. We were both there at his side, talking to him, telling him how much we loved him, each one of us holding his hand.
“He opened his big eyes once and saw us both and for just a moment it seemed like it was the old Clyde behind those eyes. He wanted to say something to us but he couldn’t. I knew he was scared—I’d been married to the man so long I could read his mind. I said to him, ‘It’s all right, sweetheart. Go on. It’s all right. God loves you. He will take care of you. Jesus will take care of you. Go on.’
“He opened his eyes a few minutes later, as if he’d seen or heard something else right above him, and that was it. We were there when he took his last breath.”
When Vickie called to say that Clyde had died, I thought of the television in his bedroom and how difficult it must have been for Vickie to finally turn it off. I imagined her sitting in the silence of the trailer and wanted to go to her. She had never been someone I thought of as a patient I was paid to help. She felt more like a sister to me. I had been pulled further and further into her world.
Now, as I put down the receiver, I could think only of all the inevitable calls to come and I wanted to run.
24
UP IN KENTUCKY, Will Johnson had finally retired completely from “the firm.” The Johnsons were now being followed by the infectious diseases clinic at Duke. I still received regular updates from Will and from Sarah Presnell. Sarah went regularly to their house to draw blood for routine blood counts and then sent the results on to Duke. The Johnsons’ medical charts, as always, were kept in a locked filing cabinet in Sarah’s house.
Will began on AZT at Duke and responded dramatically. His weight shot up to 137 pounds from 116 pounds; he said the food he ate was finally “sticking to his bones.” He had been bothered by an itching and scaling of his skin ever since he first became symptomatic; it had resisted all the creams and ointments that Sarah had prescribed. With AZT, his skin cleared up. Even his night sweats disappeared.
On the phone, he was elated, hopeful that with AZT he could survive a few more years until there was another medical breakthrough. Meanwhile, Duke had enrolled Bess in a study of AZT in patients without ARC (AIDS-related complex). The study was to see if AZT worked better if used earlier in the disease, before the patient developed.
The Johnsons were still expending a great deal of creative energy on maintaining their secret. Each visit to Duke required an overnight stay and meant they had to invent a reason for their absence. Theirs was a big social circle and they were among the town’s best-known citizens. They had always lived their life publicly, and after the heart attack, friends, neighbors and church mates were even more solicitous. “Abe,” Will said to me over the phone, “I believe it’s easier for the queen to slip away unnoticed from Buckingham Palace than it is for us to be gone from home.”
Their daughter lived close by. Their son, after a tour of duty with the Army Corps of Engineers, had returned home and had joined the fi
rm as a junior associate. For their children, the Johnsons invented trips to various friends across the tristate area as explanation for their absences. Unaccomplished liars that they were, many times they felt obliged to actually visit their friends to render some truth to their alibi. They professed a sudden interest in bed-and-breakfast tours, a passion that kept them on the road quite often.
Incredibly, their son and daughter still had no inkling of the true nature of their father’s illness. The son, Will Junior, later told me he went fishing with his father the month before he finally learned that his father had AIDS: “All my life I had taken my cue from my father: as long as he did not appear worried about his illness, I didn’t worry either. I idolized my father, and still do. He was always the single most powerful influence in my life, the model of how I should be. He guided me into my career, into working at another firm to get a larger perspective, into returning to his firm. It was always his plan that I should eventually come back to the firm. I never questioned him and had complete trust that his vision for me would encompass my own dreams and goals. I figured that when he wanted me to worry about his illness, wonder why this cancer of his was so peculiar, he would let me know. It never occurred to me when I first met you to question you. After all, you were his doctor and he was quite satisfied with his medical care. That was all I needed to know.
“But on that fishing trip we had time on our hands. It was a real special time for my Dad and me to visit with each other, just as when I was a boy. We were talking about everything under the sun. I asked him what was going on with this illness of his, almost as a matter of curiosity—the way I might ask him how business was doing. I said I could see he was losing weight and he showed no signs of recovering the energy level that he had before. He thought about it long and hard and he said, ‘Son, you could say I have a cancer of the blood system. Right now it isn’t causing me too much of a problem. But the fact is, I will probably eventually die from it. But it can be controlled for many years.’ I accepted that and had no cause to question it for the longest time.”
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