My Own Country
It took an article in Time magazine for Will Junior to put together all the facts that had been available to him all along: blood transfusions, the mysterious viral illness that had followed the transfusions, the weight loss and lymph node enlargement, the involvement of an infectious diseases specialist like myself instead of a cancer specialist.
Will Junior called his sister at her house: “Sis, I think Dad has AIDS!” He read to her from the article. She too had resisted putting the facts together, but now the conclusion was inescapable. Lee Ann suggested that they wait and not do anything with their newfound knowledge. Maybe their parents had good reasons not to tell them. But Will Junior could be as bulldogged as his father, and he could no longer live without knowing, particularly if his father was doing it to spare them the worry. It was exactly the kind of thing his father might do.
Will Junior decided to call Sarah Presnell. She was surely in on this. Sarah was his age and went to the same church. Will Junior’s children and the Presnell children were classmates. When Sarah got on the line, Will Junior asked her, “Sarah, does my Dad have AIDS?” There was silence.
Sarah said, “Junior, I think you need to ask your Dad that question.”
As it turned out his parents were away at their summer house in Corpus Christi, Texas.
Sarah Presnell called them in Texas almost as soon as Will Junior hung up.
“Will? Junior knows. I think he will be calling you.”
Will Junior sat in front of his phone. He reached for the phone twice to call his father, and each time put it down. He stayed in his office without going home, without calling his wife to tell her he would be late.
“As long I did not make the call to my father, there was still a chance that my father might not have AIDS. If I made the call and had my worst fears confirmed, there would be no going back to the innocence of not knowing.”
The hours passed and it grew dark outside. Will Junior could not bring himself to leave his office. He could not walk into the hallway and see the portrait of his Dad and the late Chuck Hoover, a portrait they had commissioned out of pride in their friendship. The portrait showed a ruddy, robust, granite-jawed Will Senior, a far cry from what he looked like now.
Before Will Junior could make up his mind, the telephone rang. It was his father.
“Son, I know what’s on your mind. Your mother and I have just put an overnight parcel in the mail to you. It explains everything. Please share it only on a need-to-know basis. I know you will share it with Rebecca and that is fine. But please reinforce with her the need to keep this to yourselves.”
Will Junior’s voice was choked up as he answered his father. “Yes, sir.”
“Junior?”
“Sir?”
“It’s bad news, son, real bad.”
“Yes, sir.”
“I’ll talk to you tomorrow, Willy.”
“Yes, sir.”
What arrived the next day was the journal that Will and Bess had jointly kept. The package was addressed to Will Junior in his father’s characteristic script: uppercase print, the first letter of each word taller than the rest. There was a brief cover letter and another package within. It told him to be sure and read it in a quiet place where he would not be disturbed for several hours.
He read his father’s description of how Sarah Presnell had told them the news late one Friday night. And then Will Junior let out a cry: he had not been prepared for the journal to tell him that his mother was also infected.
Soon, Will Junior stumbled onto why his parents had decided to keep the awful news to themselves:
SHE [Dr. Sarah Presnell] ADVISED US EMPHATICALLY THAT SHE FELT WE SHOULD KEEP OUR CONDITION TO OURSELVES. BESS HAD NO SYMPTOMS AT ALL. MINE WERE VERY EARLY INDICATIONS OF ARC [AIDS-related complex]. NEITHER OF US HAD THE DISEASE ITSELF—AND MIGHT NEVER DEVELOP IT. IT WOULD TAKE BLOOD OR SEMEN TO INFECT SOMEONE ELSE. CASUAL CONTACT WOULDN’T DO IT. IT COULD NOT BE TRANSMITTED TO SOMEONE USING OUR DISHES, EATING AFTER US, OR BY KISSING OR HUGS. THE ONLY WAY WAS BY TRANSFER OF BLOOD OR SEMEN DIRECTLY TO THE BLOODSTREAM OF ANOTHER. SHE FELT (AND WE AGREED) THAT THE THEN PREVALENT AND PATHOLOGICAL FEAR OF THE DISEASE ON THE PART OF MANY PEOPLE WAS SO STRONG THAT IT WOULD BE BEST TO KEEP OUR SECRET TO OURSELVES LEST WE BE SHUNNED, OR HURT OUR LOVED ONES, OR OUR CHURCH, OR THE FIRM.
The journal entries by his mother were radically different in tone and appearance from her husband’s. Whereas his father’s print was at times upright and at other times, perhaps because of the thought being expressed, slanted to the right, his mother’s writing was a model of cursive script. His father’s section had a wide left margin as if to leave space for formulas and calculations, and it was interspersed with photocopies of doctors’ consultations, even some of my later correspondence, as though introducing evidence, building a case.
His mother, by contrast, had written an uninterrupted narrative, the left margin and right margin straight as plumb lines. Her section of the document was the fitting product of a magna cum laude graduate of the University of Virginia, an English honors student, a lady whose heroes and heroines were Blake and the Bronte sisters. Only the content of this remarkable journal, not the form, betrayed his mother’s agony. Her very first paragraph explained the purpose of the diary:
. . . we put our story on paper for the purpose of information to our loved ones in the future, should we choose or need to make this information known to you.
His father had not bothered with such an explanation. Instead, his father had begun as if visualizing that moment when the journal would be in his son’s hands:
IT GRIEVES ME TO TELL YOU, BUT I MUST LET YOU KNOW THAT BESS AND I ARE INFECTED BY THE AIDS VIRUS.
The second paragraph of his mother’s diary read:
So here goes—I feel like I am making a confession, and I will try to explain the circumstances and our reasoning about it all.
Much later came:
We hate not telling you and Rebecca, or Lee Ann and John about the biggest burden of our lives and pray that you will not hold this against us. We just couldn’t see that it would serve any good to have you saddled with this burden too. It would be dumping our problems on you when you couldn’t do anything about it. Still, we miss your caring and concern. We love you all more than anything else on this earth. We continually pray for God’s guidance, our healthy and for a cure to be found for this awful scourge.
There was a reference in Will’s writing to the cost of all the deception that had to be set into play from the moment Will saw Sarah Presnell:
THUS BEGAN ANOTHER PART OF THE NIGHTMARE. I’VE ALWAYS FELT IT BEST TO BE ENTIRELY TRUTHFUL. IF I TOLD THE TRUTH I’D NEVER HAVE TO REMEMBER WHATEVER IT WAS I SAID. NOW I HAD TO LIVE A COVER-UP—AND SO DID BESS. IT PREVENTED US FROM RECEIVING THE PRAYERS & SUPPORT FROM THE SAINTS AND OUR FAMILY. . . . FATHER [Will Johnson’s aged father] TRIES TO KEEP UP WITH WHERE WE ARE AT ALL TIMES—A REAL PROBLEM FOR SUCH INEXPERIENCED LIARS AS WE. I THINK IT WOULD KILL HIM IF HE KNEW. I PRAY THE LORD SPARES MY OLD MAN FROM THIS KNOWLEDGE.
Will Johnson anticipated his children’s reaction when they finally found out:
YOUR QUESTION MIGHT BE—“WHY DIDNT YOU TELL US, DAD?” YOU MAY FEEL RESENTMENT BECAUSE YOU’D FEEL YOU HAD THE RIGHT TO KNOW FROM THE BEGINNING—SO THAT YOU COULD DECIDE ABOUT HOW TO REACT—AND TO DECIDE YOURSELVES HOW TO DEAL WITH WHETHER YOU AND YOUR FAMILIES MIGHT HAVE BEEN AT RISK—AND TO ESTABLISH YOUR OWN POLICIES ACCORDING TO YOUR OWN JUDGMENTS. YOU HAVE THIS KNOWLEDGE NOW, OF COURSE, AND YOU WILL DO AS YOU THINK YOU MUST.
THE DREAD OF SUCH A QUESTION FROM YOU, AND THE POSSIBLE RESENTMENT WHICH MIGHT ACCOMPANY IT WHEN YOU LEARN ABOUT OUR HORROR, HAS CAUSED US TO CONSULT AGAIN WITH OUR SPIRITUAL COUNSELOR, REV. S_______ FOR EVEN MORE GUIDANCE.
THIS CATCH-22 PROVIDES THE ESSENCE OF OUR STRUGGLE TO FIND THE BEST ANSWER AS TO HOW TO HANDLE IT. NOT THE PERFECT ANSWER, BUT THE BEST WE CAN COME UP WITH AND DO UNDER THE CIRCUMSTANCES. THIS IS THE GREATEST CRISIS OF OUR LIVES, NOT JUST THE DISEASE BUT THE COVER
-UP.
Here Will Junior recognized words that were an anthem to his father, words that his father had used with me:
I PERSONALLY THINK THIS THING IS FROM HELL AND THE DEVIL HIMSELF. I DON’T BELIEVE GOD “LET IT HAPPEN.” I SURELY DON’T UNDERSTAND IT, BUT I SEE IT AS AN EVIL ONSLAUGHT—A TEST IF YOU WILL—AND I’M DETERMINED WITH THE HELP AND STRENGTH OF JESUS CHRIST, I WILL PASS THIS TEST. I REMIND MYSELF ALSO THAT IT MATTERS NOT SO MUCH WHAT HAPPENS TO US ALL AS HOW WE TAKE IT—AND WE’LL NEVER BE GIVEN TO ENDURE MORE THAN WE CAN BEAR.
REV. S____REINFORCED OUR RESOLVE TO KEEP OUR PRIVACY. THIS LETTER AND HISTORY IS BEING WRITTEN NOW, HOWEVER, AT HIS SUGGESTION. HE SAYS FOR US TO KEEP IT ON FILE—IT MIGHT HELP YOU UNDERSTAND OUR HANDLING OF THIS IF YOU MUST KNOW LATER ON—AND EVEN IF YOU DISAGREE WITH US, IT MIGHT HELP REDUCE YOUR RESENTMENT IF YOU EVER HAVE TO KNOW.
It was a long while before Will Junior was able to go home and share with his wife what had transpired. Everything in his life to that point in time now seemed a preface to this nightmare. A few miles away, his sister was reading a copy of the same journal.
25
IN THE SUMMER OF 1989, Norman Sanger died, bled to death. His friend Sharon Phillips, the occupational health nurse at the mines, left a message with my secretary giving me the news.
I had to find out more; I needed to know how he died. How did the man who said, “All I have ever had was courage and dignity—that was my thing,” the man who had despaired about losing these qualities—how did he handle the end? I had witnessed a lot of deaths now. Some were triumphant, a victory over fear. Some people were apparently surprised by its arrival, never fully believing that it could occur. As an observer, each death still seemed fantastic to me, a feat of sorts.
If Norman had found a way, had stumbled on a path—or indeed, if he had not found a way—then I wanted to know. I was after something more intimate, something less elegant than Kübler-Ross’s stages of denial, anger, bargaining, grieving and acceptance. I simply wanted to know how to accomplish a good death. I needed the knowledge to say (or not say): “When death approaches, have a fire going to ward off any chill. And you will be more comfortable wearing cotton. And your bed should be in the north room with the head of your bed facing west. And as for what you should eat, avoid lentils, take rhubarb if you like it . . .” If I could do little else, perhaps I could lead them to a proper end, the right punctuation to close a life.
I had always felt inexpert when a patient was near death. I knew I was not alone: the gallows humor evinced in comments like “the patient is circling the drain,” or “about to transfer to Central Office,” reflected the clumsy way all of us in the hospital dealt with impending death. Give me a patient with massive gastric bleeding or ventricular fibrillation and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack. I, who till then have been supportive, involved, can find myself mute, making my visits briefer, putting on an aura of great enterprise—false enterprise. I finger my printed patient list, study the lab results on the chart which at this point have no meaning. For someone dealing so often with death, my ignorance felt shameful.
THAT SUMMER, when I found I had a lecture to give in Kentucky, I decided to use that trip to see Sharon Phillips, the nurse at the mining company where Norman had worked. They had been office mates. Sharon had become Norman’s closest friend and had accompanied him many a time to Johnson City. I had the sense now that I could speak to her in a way that might be very difficult with Norman’s wife.
Sharon met me at the Pizza Hut in town. She drove me to the city park; we walked as we talked. I told her on the phone when we set up our meeting that I wanted to know specifically about Norman’s death. I needed to know so as to bring a sense of closure to it. But now both of us seemed hesitant to get to it, circling around it instead.
Sharon was in her forties. She had no accent to speak of. As an army brat, she had grown up in Okinawa, Louisiana, California and Texas before her parents returned to Lexington where the family was originally from. She was blond, wore no makeup and had a trim, muscular figure. In a part of the country where women can age rapidly—the result of smoking, early and closely spaced pregnancies, poor diets—Sharon was an exception.
Before she knew Norman well, she asked someone one day why Norman walked with a limp. She was told it had to do with hemophilia. Norman had first mentioned AIDS when he and Sharon were volunteering in a booth sponsored by the mine at the town health fair. They had time to chat in between taking people’s blood pressures. Out of the clear blue, Norman said, “My biggest fear in life is having AIDS.” Sharon had wondered why Norman would dwell on something like that. It hadn’t struck her that Norman was at risk. The year was 1985. After Norman’s death it was difficult for her to believe that she was so late in having knowledge of AIDS penetrate her consciousness.
She found out later from Norman that he had already been tested and knew he was positive by the time they talked at the health fair. His statement about his biggest fear being that he would get AIDS had not been an abstract declaration; he had been talking concretely about the stages of HIV infection.
Sharon said, “I remember one morning when I went to work, my personnel supervisor asked me, ‘Did you know that Norman is in the hospital with AIDS?’ And I started to weep. My supervisor was shocked; she didn’t know what to say. Neither she nor I had realized how deeply this little man who shared my office had affected me.”
When Norman returned from the Miracle Center the first time, he seemed so small to Sharon. He tried to be his usual self, but he had never looked so fragile.
Sharon felt angry at herself, angry that she had let herself get so close to Norman. “I knew it was going to be a long battle and that I could not turn my back on him now. I think the word had got around the mine office by then as to what Norman had. Most people were very accepting, or else maybe they didn’t understand too much about it. I would sit and eat lunch with him. And there were several who would refuse to sit at the same table or even refuse to sit with me because I was so close to him.
“At the time it was all happening, my biggest fear was that my memory of him, of his kind of bravery, would fade. The opposite of my Vietnam nursing experience where I want the memory to fade . . . but mostly it won’t.”
Sharon, in describing her ordeal with Norman, seemed to be capturing what I was going through with all my Normans: getting so close to them that I would regret it later, knowing that the intimacy made the ordeal of illness costly and painful to me. I was, like her, tainted socially by the association with my patients, even if most days I told myself I cared nothing about what others thought. Whatever efforts we made seemed to be happening in a vacuum: our little towns were unaware of the drama, the gallantry of their dying heroes; there was great danger that there would be no memory of the lives lost.
Sharon learned everything she could about AIDS and hemophilia so that she could be both a good nurse and a good friend to Norman. And yet whenever she went to see him, she had the sense that he was ministering to her. He had decided that she needed him; he was going to open doors in her psyche that she had long considered closed off.
I asked Sharon how Norman’s wife, Claire, was faring after his death.
“Claire moved away to join a distant cousin in California and to be close to Norman’s parents. I think Claire made him very happy. But I don’t know if she had a good understanding of the disease. One time Norman told me that they were supposed to go somewhere but he was really ill—throwing up and having fever. She was all dressed up and he finally said, ‘Claire, I don’t think I’m going to be able to go.’ She sat down on the bed in a huff and said, ‘When are you going to be well?’ ”
We had come to the edge of the park and Sharon pointed to a church. She said it was where Norman had worshipped. “One of the things that Norman taught me had to do with faith. I told him that I didn’t think I could be a good Christian because I did things that I didn’t think
a good Christian would do. He said to me, ‘You don’t understand grace at all, do you? You don’t earn grace and therefore you can’t lose grace when you do something bad. If God grants His grace to you because of your belief and your faith in Him, He doesn’t take that away when you mess up. You can’t do anything to earn it or anything to lose it.’ ”
We stepped into the church.
“Two days before he died, he asked me to come here with him, and when we went in it was just the two of us. He broke down and cried these really angry tears and he just didn’t want to leave. I didn’t know what to say to him. Finally, when he got ahold of himself, he said to me, ‘I don’t mind dying. I’m going to be okay with death. It’s just that I’m not ready to leave.’ ”
It was almost time for me to leave and we had not as yet discussed Norman’s death.
“About a week before he died, he decided to stop taking his medications. By this time he was just wasting away and had high fevers. Nothing was really helping him. Although I saw him every day at work—when he was working—I was hesitant to bother him at his house. On the fourth of July he called me. He said he wanted to come to my house. My husband and he knew each other, but not very well. And whatever way my husband thought of Norman, he never perceived him as a threat, you understand? I don’t think he felt the same sympathy for him that I did. He was puzzled by our relationship. It is a tribute to my husband that he gave me room to have this connection with Norman.
“I had planned a big dinner for that night. I was going to make barbecue. I knew exactly what Norman liked and he didn’t like onions, so I left them out. His favorite dessert was peach cobbler and vanilla ice cream, so I made that. When he and Claire got to the house, he was wearing thermal underwear and a long-sleeved shirt, even though it was the fourth of July. He was extremely pale and his voice was hardly audible. When I was clearing dishes I could hear him talking with my husband, and I realized that this was the first time my husband really recognized that Norman was about to die.