IT WAS STRANGE to see Bess Johnson apart from her husband, away from his room, in the role of patient. Whenever I walked into their room they were holding hands quietly, or else she was reading to him. Sometimes he read something out of the newspaper to her. I was envious of their love affair. Mary, the night nurse, had stopped me in the hallway and asked, “Have you seen how they look into each other’s eyes? God, I’d die for a man to love me like that!”
And even as Mrs. Johnson sat in the clinic, it was tempting to talk about Will instead of about her. Will’s illness, his wasting, was so profound, and yet his personality so vital that he was the focus of our attention. I could not recall Bess initiating a discussion in his room; she sometimes added a comment to whatever we were talking about. In Will’s hospital room, Bess’s concentration on him was so complete that after a while she became invisible; she became an extension of Will.
“I made a drive back home to check the mail and get some fresh clothes,” Bess said now. “You must have wondered if I possessed anything but that one dress I was wearing!”
I assured her that I had thought no such thing. She wore a plaid skirt with a light blue cardigan over her blouse. A tiny gold crucifix was visible at her neck.
“I appreciate your taking the time to see me; I know you are busy,” she said. I realized Mrs. Johnson must have seen Raleigh out in the waiting room, must have recognized that he, like her, was there to see me.
I said, “You know I feel like I’ve known both of you for a long, long time. And I do know an awful lot about Mr. Johnson—at least medically. But I know almost nothing about you, about where you’re from originally, and how you met Mr. Johnson.” She was bashful, smiling, as if I had stumbled onto the veil she used to make herself invisible. I felt a twinge of embarrassment, as if I was fishing for details that were none of my business. I continued, “And I don’t know how you’re dealing with all this, with all the stress. In short, I feel guilty for neglecting you in my concern for Mr. Johnson.”
With any other hospitalized patient, the spouse might have come out to the corridor and had a private conversation with me from time to time, to ask how things were really going. But I had never had such a chat with Mrs. Johnson, because for her to do that would have meant her leaving his side.
“Oh, you haven’t neglected me. And Will and I feel blessed that you are taking care of him. And about me . . . well, there’s not much to tell really. I have been a housewife most of my life—by choice, you understand. I enjoyed my role as the wife of Will Johnson, as a mother to my children, as a grandmother. After we married, I never wanted anything else. These were supposed to be our glory years, Will would have retired soon. . . .” Here she trailed off, the fixed smile on her face hiding the pain of the unfinished sentence.
“Where did you meet? Are you both from the same town?”
“We met in my first year of college, when both of us had come home for the holidays and we were at a social at a friend’s house.”
“Where did you go to college?”
“I went to the University of Virginia in Charlottesville. I graduated magna cum laude in English literature. I went on to do a master’s.”
I had thought of Mrs. Johnson as educated, but I didn’t think of her as a scholar, particularly since she had just finished telling me how she had enjoyed being housewife, mother, grandmother. She must have seen the surprise on my face because she said, “Yes, English literature! My thesis was on Blake’s Songs of Experience. He is still my favorite. I was accepted into a Ph.D. program at Yale based on that thesis, but I chose not to go. Years later, when my daughter and son grew up and went to junior high, I began to teach English literature and creative writing at the community college. I only stopped when Will had the heart attack.”
So self-effacing was her personality that I wondered if I would ever have learned about her education had I not asked directly.
“And do you read a lot now?”
“It’s about all I do. We don’t care for television. I’m a member of two book clubs, and Will and I often take turns reading a book out loud to each other. We have done that for years. He loves biographies and I love the nineteenth-century English novelists. Now the reading is a lot more precious to us. As a matter of fact, we decided to try Thomas Mann’s Magic Mountain right now. I had read it before, but it reads like a different book now.”
Carol now entered the room and I began my examination of Bess Johnson. She was a fit fifty-five-year-old. Her passion for walking, a sensible diet and the fact that she had never smoked showed in her muscle tone and in her complexion. I did not detect any signs of lymphadenopathy, nor any yeast in her mouth. Vaginal yeast infection is common in women with HIV infection, but she was untroubled by this. In short, but for Dr. Sarah Presnell’s word that Bess’s test was positive, it was impossible to imagine that she had HIV infection.
I stepped out of the room to allow her to dress. When I returned she was seated quietly on the stool, her hands folded on her lap, patient, as if she could have sat there for an hour or two without any effort. I told her I found her to be entirely well. That we would get blood work, but that I was hopeful the virus would not trouble her greatly for a long time to come. I asked her if she had any questions.
“I want you to be candid about Will’s chances.” I sensed that this was one of the few times during his illness where she had acted apart from him, where the information I gave her she might not share with him.
“Well,” I said, “I’m puzzled by the ulcers in his esophagus. They fit nothing that has been described in the medical literature. His weight loss and his low CD4 count—it’s only ninety—suggest that he is farther along the spectrum of HIV infection toward AIDS.”
“Is it AIDS?”
“Technically, no. Because he hasn’t had one of the ‘AIDS-defining’ infections like Pneumocystis. But from a practical point of view, his CD4 count is in that range. Yet if we can get him over this, he could go on for a long time living very well.”
“Can you tell me how long? Is that a fair question?”
“I really don’t know. He isn’t getting any worse and that’s reassuring. I am hoping he will have two good years, but we might not be that fortunate.”
She smiled as if to thank me, and now sat quietly again. She had no further questions. I was loath to let her leave; I didn’t think we would get many chances to talk without Will being present. I felt as if there was unfinished business, and only politeness kept her from coming out with it.
As a means of prolonging the conversation, I told Bess how everyone who worked with Will and with her was full of admiration for how brave they were in the face of this cruel disease, how it was inspiring to all of us who saw them.
To my surprise, her face fell, her shoulders sagged and she burst into tears. I was unprepared for this, uncertain of what to do. I held a box of tissues out to her and placed one hand on her shoulder.
“I’m sorry,” she said. “I don’t know what happened. And I don’t want to waste your time.”
“I’m sorry. I didn’t mean to upset you. I have no one else to see and we have all the time in the world.”
She opened up now, as if she needed to tell her side of the story, as if her staying in the background and letting Will do the steering had resulted in something building up inside of her.
She said, “I only wish you had known Will before this whole terrible thing. He was the strongest and most caring of men. It breaks my heart to see him weaken. After his heart attack, when they flew him to Duke, my daughter and I drove down. We found Will parked in a stretcher in the hallway by the emergency room. And when I saw him lying there, so helpless, made to look tiny by that giant institution and the hustle and bustle around him, I felt something snap in me. I dragged myself around the corner and sagged into a chair, crossed my arms in front of my chest like this and wept. And that was about the last time I let myself do that around him.”
She was weeping quietly now. She folded each t
issue into a square and used first one side then the other to dab her eyes.
“Do you know what he wanted when he got back to his room after the cardiac catheterization? He wanted to call a board meeting! The cardiologists had told him that it looked as if surgery was the next option. Will wanted to call a board meeting! Not of his firm—but of all the doctors. He said, ‘Let’s get all the M.D.’s. Get them all here—cardiology and the surgery people—and we’ll run a board meeting. We’ll have an agenda: Will’s Health. We’ll hear all the opinions, hear all the options, go through a stepwise, logical process, hear the motions, take a vote if needed.’ My daughter and I looked at him as if he was crazy. He said, ‘Sure! We don’t need to be M.D.’s to make an informed decision. Just need data. And good advice. And we’ll make the right decision.’ ”
I was laughing, listening to this. In an institution the size of Duke University Medical Center—a medical-industrial complex—it would be a logistical feat to get everyone involved into the same room for a “board meeting.” The more critically ill a patient was, the more likely he or she was to concede their autonomy and go along with the doctors’ decision, even if the decision was perfunctorily presented as a choice. But not Will Johnson.
“So did they have a board meeting?”
She shook her head.
“The surgical team on duty for that day walked into the room late that evening—not for a board meeting, but because they had been consulted by the cardiologists. They had seen the film that recorded Will’s cardiac catheterization; they had discussed it with the cardiologists. I remember Will struggled to sit up. He informed them that he would like to call a meeting of his doctors. A meeting for them to present their data to him and to decide on the best course. There was a silence and then a doctor said, ‘You are going to have open-heart surgery in the next twenty-four hours if you want to live. Our staff is accomplished; we know what we are doing. We’ve made the decision for you.’ When they left the room, Will just sank back into the pillows. He was totally deflated. I don’t think he had ever in his life been in a situation in which he had been this helpless.”
“But he agreed to go through with it?”
“Well, he had no choice. It was either that or leave. One of the things that gave us faith was that we had heard that the surgeon on duty for that day was an outspoken Christian. That he had been saved. I reasoned with Will that what the team was going to do for him was something they did several times a day. It was life-or-death for us, but routine for them. Perhaps it was too much to expect the kind of personal attention he needed, attention that he was used to getting in his business world. Will complained that he felt like a piece of lumber stacked up outside the sawmill. But the surgeon for the day was an outspoken Christian.”
I was intrigued by this characterization of the surgeon. I asked Bess Johnson what it meant to her that the surgeon was an “outspoken Christian.”
She answered without any hesitation: “It means that he is an instrument of God. Even though he has prestige and money, that is not his motive, merely a reward.”
“Did the team anticipate trouble during Will’s surgery?”
“I don’t think so. We were led to believe that even though Will’s heart was in precarious condition, they did this all the time. The helicopter was flying in broken hearts every day. It was going to be fairly routine . . . but I can tell you, there wasn’t a family in the cardiac surgery waiting room for whom this was routine. We prayed a lot. We sat and sat and sat, waiting. We had no idea at any point whether Will was already in surgery, or was he parked in a corridor, waiting just as we were? There were stretchers rolling in and out of the operating room. When a stretcher came out it was surrounded by a ring of people, each person in charge of one tube or bottle or something. As soon as a stretcher rolled out, everybody would stand up and look. The family that recognized their loved one would hurry out and get a ten-second glimpse of the patient before the stretcher rolled into the recovery room and the door closed.
“While we were there, someone died. We saw the nurse shepherd the family into a prayer room, and pretty soon the chaplain was paged and he came and broke the news. You could hear the wailing behind the door. And you know everyone else in the waiting room was praying, ‘Thank you, God, that it was not ours.’ There was another family from Kentucky there, waiting on their father. We were drawn to them: it’s amazing how perfect strangers can feel like kin because you share an experience. I still correspond with that woman, though now I’m easing off because I can’t tell her what’s really happening to us. Some nights I wonder if what’s happening to me is also happening to her. Did her husband get the same blood? Does she have the virus, and is she writing these polite but untrue letters to me?
“Finally, at about eleven in the night, Will was wheeled out. There was blood everywhere. In the ten seconds we had a glimpse of him, it looked as if there were tubes growing out of his body. There was a tube coming out from under his breastbone—pouring blood. I mean the blood was dripping into a bottle as if a faucet was open. Another from each side of his chest. A tube was in his mouth breathing for him. A tube was in his bladder, another was in his nose. The people wheeling him looked very tense. I was shocked at his appearance.”
Mrs. Johnson’s face had become quite pale as she relived this event.
“Every hour they would let my daughter and me in there to be with him for exactly two minutes. You could tell it was a real burden on the staff. They were bustling around, fiddling with this tube and that tube and loading medications in syringes and suctioning the tube in his throat. Then when we came in they would stop, lean against the wall and wait for us to be done. I remember blood, blood, blood: there was blood collecting in the bottles on the floor by his bed, and meanwhile, blood was pouring in from bags running into his veins.
“We held his hands. We read to him passages for that day from the Diary of Private Prayer.
“We had yet to hear from the surgeons. Every now and then I spotted them coming out of the operating room and going into the recovery room; I guess they were in between operations. A black surgical intern, part of the surgical crew, was so helpful. He told us what little we knew: the operation had been difficult and Will was bleeding.
“At about one o’clock in the morning, a surgeon came to the visitors’ room—we were the only ones there—and told us that there had been a tremendous amount of bleeding and that the bleeding still had not ceased. They were going to have to go back into Will’s chest, take him back to the operating room and find the bleeders.
“I couldn’t imagine it. There was Will with stitches up and down his chest and along his legs. Tubes coming out from everywhere. The surgeons had been up for about twenty hours—they must have been bone-tired, you could see it in their faces. I just knew that if they took him back in, he would not survive. It was just like when the helicopter landed in the middle of the night in Bluepark with the wind howling and the snow blowing. I wanted to say, ‘No. Don’t take him.’
“But I said nothing. My daughter and I held hands and prayed that they would not have to take him back, prayed that God would make his blood start to clot, stop bleeding.
“At about three in the morning, we spotted the black intern walking down the hall, walking away from us. We ran after him. He said he was heading home. And I was thinking to myself, ‘How can you possibly go home when Will is still in there?’ But I didn’t say anything because he looked so tired. He was resting against the wall as he talked to us. He said, ‘It’s all right now. Looks like he’s OK and they won’t need to open him up again. The bleeding is finally quitting.’ I was so happy I started to weep: it had been hours and hours of waiting, wondering what was happening to Will: Was he back on the table? Were they cutting into him again? When I heard the words ‘it’s all right’ I just felt something break loose in me. I felt like I had been holding my breath from early morning and I could finally let it out.”
Mrs. Johnson was quiet now, as if replaying t
his memory for the millionth time, trying to extract another ounce of meaning from it.
“At the time, those were the most wonderful words a human being could have said to me: It’s all right now, looks like he’s OK, he’s quit bleeding.”
She looked at me now, her face full of wonder. “So when he then said, ‘He’s gotten a lot of blood, lots and lots of blood. If he doesn’t recover fully, or afterward if strange things happen, please remember what I just told you,’ it didn’t really register. It didn’t register until the night Sarah called us into her office and told us that Will was infected. I punish myself every time I think of this, punish myself for not paying attention. I will never forgive myself for being so passive. Not so much because it might have prevented my being infected, but because I could have perhaps helped them diagnose what was wrong with Will a long time before, when he was having that strange ‘mono’-like illness, when he had the bizarre weight loss, when he had all those strange skin rashes.”
She was now weeping again. Her face was drawn into a grimace. Between sobs she said, “Will has never said one word to me about this. And yet, I just know if he had been in my situation, he would have pushed the intern to explain what he meant, he would not have been content to hear something and not understand it. I failed him. I assumed whatever it was I had to remember would be repeated to me again later.”
I tried to reassure Mrs. Johnson that she had not failed him, that no one could have made much of the intern’s cryptic remark, particularly in that setting, that both she and her daughter had mentioned it to the doctor in Charleston when Will had the “mono”-like illness. But she was inconsolable. She was still crying when she left my office. Through my office window I saw her enter her car and sit there. She was so still that I was tempted to go down and check on her. After a long while, she started the car and headed back in the direction of the Miracle Center.
CAROL PAGED ME EARLY the next morning. Raleigh had taken an overdose of sleeping pills the evening after I saw him.