A Season in Hell (14 page)

For some reason, it was hard for me to move on this mattress. I toiled and toiled but barely inched forward. To move at all, I had to propel myself with great heaves. It was a very long time before I arrived at the foot of the bed. I put my legs out to step over—and suddenly fell flat on the floor. I was lying on my stomach, my face mashed into the cold floor. Leaning on my hands, I tried to raise my body. It didn’t move. I tried to raise my head to see if there was anyone in the corridor outside who could help me, but when I raised it, my head fell—hard—back onto the hospital floor, squashing my nose. Near tears, I tried again to raise my head. Again, it smashed onto the floor. My nose hurt. I began to cry softly. I did not understand why I could not raise my head. I called out for help, but my voice was weak and faint, as in a nightmare. After a time, someone heard me.

“Oh, my God!” the woman called out to another, who ran into the room.

“Where’s her nurse!”

I was lifted up.

“I have to pee,” I said faintly, and was helped to the toilet.

“Where is your nurse?” the woman cried.

I didn’t know. I didn’t know I had a nurse.

There was much ado, and after a time, a young woman ran into the room. “Oh, I only left her for a minute!” she cried, near tears. “I just went down for some coffee!”

I said nothing, although I knew she’d been gone for a long time. I didn’t care. I didn’t care what she did. What I cared about was my helplessness. What was the matter with me? Why couldn’t I do anything? I couldn’t even move by myself!
What was wrong?

I
T WAS SUNDAY NIGHT,
December 27, 1992, when I said to Rob, “I’ve never felt so bad in my whole life.” Yearning for relief from discomfort, I sought sleep; thanks to a sedative, it soon came. But that sleep did not end for a long time. My next memory is of a moment over two weeks later, when I woke hearing my kids’ happy voices. The interim was anguish for them.

The Monday after Christmas, Jamie and Barbara went to work as usual. Rob stayed with me: worried, my son decided not to go to work that day. The nurse was unable to wake me in the morning but said nothing until about eleven, when she told Rob of the problem. He came into my room, sat on the edge of the bed, and called, “Mom,” several times. He touched me; I did not respond. He called more loudly; he shook my shoulder. He put his arm around me and tried to pull me up, but I simply sank back. Suddenly, I sat straight up, eyes open, arms stretched out, but said nothing. He rubbed my back, asked if I was okay; when his hand moved to my lower back, near the kidney, I flinched and mumbled in pain. Sitting beside me, he turned my body so my legs hung to the floor. He put his arm around me, and my head fell to his shoulder.

The nurse came into the room and asked Rob if he wanted her to call an ambulance. He said yes. As he sat there with me, waiting for its arrival, the telephone rang. It was Carol, wanting to know how I was. “Not too good,” Rob said. Unsure whether I could hear him, and fearful of upsetting me or Carol, he watched his words.

“We can’t seem to rouse her,” he said.

“What do you mean, you can’t rouse her!” she cried.

“Well, she won’t wake up.”

“Call an ambulance! Get her to the hospital right away!” Carol directed, saying she’d meet him there.

Then Rob called Jamie. Again, he spoke warily, so warily that Jamie did not at first understand the situation was serious. Once she did, she agreed to meet him at Urgent Care.

The nurse announced the arrival of the ambulance. They put me in slippers and a robe; attendants carried a reclining stretcher chair up to the bedroom. They had to get me down a winding staircase to the front door and the elevator. Rob traveled with me in the ambulance. Carol was already at S-K when we arrived. The Urgent Care nurses called my name to see if I would respond. Nothing. But when they pinched me, I yelled “Ouch!” After than, however, I sank deeper into unconsciousness. They kept me in the corridor until a bed opened up—quite a while, Rob recalls. They summoned what Rob called a “baby neurologist,” an inexperienced doctor, who used a metal instrument to determine my level of response. Rob was disgusted: “It was obvious that you weren’t responding at all. He was like someone playing with a toy, trying to seem important, when all he had to do was look.” The doctor may have felt Rob’s scorn, for he asked him to leave.

Rob called Barbara, went to the bank for money to pay the ambulance attendants, then sat in the corridor, waiting, with Jamie, Carol, and, later, Barbara. He called Charlotte, Esther, and Gloria, but they were all away over the holidays. He called my sister.

Jamie came in to see me, and while she stood there, I had a seizure: my whole body shook in a convulsion, horrifying her. Hours passed. A nurse came out and told them I was being moved to the SCU (Special Care Unit), S-K’s intensive care. The kids followed me there. Rob thinks a woman doctor came out and spoke to them, but because no one could tell them anything definite, they have only vague memories of the doctors. Eventually, a nurse told them to go home, saying I was “stable” and that someone would call if any important change occurred.

But they would not move. They stayed with me the rest of that day and the next. For two nights running, they slept on the floor of the SCU waiting room, using their coats as mattresses. They recall the waiting room as pleasant; it was carpeted and had comfortable couches. When I visited it recently—having no memory of it—it was tiled, no longer carpeted, but on the floor were the mattress and rumpled sheets of another faithful watcher. The present chairs do not look comfortable. I am glad it was carpeted when they slept there. The nurses, more wonderful here even than elsewhere in that hospital, brought them pillows, sheets, and blankets. Carol stayed until about 4:00 a.m. Tuesday, went home to check on her family, and returned at 8:00 a.m. with doughnuts and coffee.

The kids were constant presences, although after the second night, they slept at my apartment, all three of them. If an emergency arose, Rob and Barbara would have been too far away if they had gone home to Staten Island. Jamie lived closer, in the Village, yet she stayed with her brother and her old friend Barbara. I like to think of the three of them together, ready to comfort each other if I died. They brought in the charms I had hung around my bed at home and hung them over my hospital bed. They brought the little radio with earphones that I had used for visualization tapes, and played tapes of music they knew I liked. Days they spent beside me, speaking to me, stroking my hand. They acted as hosts for my guests in the SCU waiting room and became part of a small community of waiters and watchers. Toward the end of my stay in the Special Care Unit, they found some kind of handheld computer game, calculator size, which they fought over and took turns with. It became a constant presence with them—especially Jamie—and they played with it obsessively. It had the advantage of blanking out everything in the world but itself.

From what various sources have told me, every part of my body was hooked up to some machine. I was on life support: a respirator with a tube down my throat, a catheter in my urethra, IV lines in my arms, a heart monitor attached to my chest. Jamie recalls the Venodyne boots that kept circulation going in my feet and lower legs by imposing pressure every few minutes. I had brain seizures, for which they gave me Dilantin. When I went back to examine the room I occupied then, I saw why I once called it the “Science Capital of the World.” Each SCU cubicle is filled with machines, tens of them, of all sorts, mounted one above the other in a series of tall columns. The only thing missing on my recent visit was the TV set, an intrusive presence when I was comatose. As I went deeper into coma, my kidneys failed and I blew up into a “beached whale,” Charlotte says. My tongue became bloody and swelled so it no longer fit in my mouth. I was a pasty white color.

The kind nurses, doubtless moved by my children’s devotion, called every morning to tell them how I was, so they need not rush in. One nurse in particular, Colette, won my children’s love and respect by her tender, solicitous care of me. She gave them more information than any of the doctors, saying, “People don’t generally come out of comas like this,” but also that people as badly off as I was had been known to walk out of the SCU. Everyone describes the care I received as superb. “People were working on you all the time,” Gloria recalls. “They measured your fluid intake and output, they checked to see if your bone marrow was suppressed, they had to clear your tubes regularly, they monitored all the instruments, you had a heart monitor, a respirator….”

But no one told the children what was wrong with me. This was not obfuscation: no one knew. The kids made sure to be present during the doctors’ rounds, but the only information they were given concerned counts and medications. Rob remembers an SCU doctor, Renny Griffith, as especially kind and efficient. I went back in 1997 and tried to thank him and Colette; neither of them worked there any longer.

But the doctor in charge of the SCU was a different story. He had never seen me before, and the kids did not know him, but one day he came striding in. A “distant superior aloof supercilious arrogant bastard hotshot full of his own brilliance stood in the middle of the room to make his authoritative medical judgment,” my son says in fury, even now, five years later. He loudly announced that I had stopped breathing during the night, that the cancer had spread to the brain stem, and that I was dead. There was nothing they could do.

Jamie went to pieces: she wailed, screamed, stamped her feet. Rob comforted her. But with part of their minds, they refused to believe him. A few days later, Esther was visiting when the kids saw this doctor walking down the hall. They pointed him out, explaining what he had done. Esther stopped short to listen, then chased after him. Returning after a while, she smiled broadly and said she’d taken care of him.

“What did you do?”

“I put a spell on him,” she said.

“Oh, good!” Jamie cheered. “The big tall guy?”

“Uh-oh,” says Esther. She had taken on a short guy with a beard and glasses. Since Esther’s infliction of the evil eye had had satisfyingly catastrophic results on previous occasions, she has been worried since.

Rob, Jamie, and Barbara must have been glazed with boredom and worry. They lived in the SCU waiting room: they were there for most of the day, every day. They played a hand-held computer game to which all three became addicted; they chatted with my visitors, all of whom they knew; and with their own friends, who came to see me out of love for them. And they made friends with the family of a fifteen-year-old boy, Brandon, suffering from neuroblastoma, a rare cancer of nerve endings. The family lived in a small town in Illinois that had been plagued with this rare disease: four children had been diagnosed with it. Staying in New York was a drain on the family; the parents and grandparents took turns sleeping in a single hotel room to save money. Both wanted to stay with their beloved child, whose immediate problem was sepsis. Emotions flourish in such situations, and my children and Esther, on one hand, and the boy’s family, especially his grandparents, on the other, grew to love one another.

Rob went through aphaeresis, a two-and-a-half hour transfusion of white blood cells, to help the boy. In this unpleasant process, all the blood is gradually drained from the body through one arm, passed through a separator that filters out the white cells, and then returned to the other arm. The family asked Esther to perform a ritual over the child, which she did burdened with anxiety and a sense of ineffectuality. She had no confidence in her powers with him—and indeed, the child died.

On March 28, 1998, the
New York Times
ran a short piece reporting that the company that cleaned up coal tar at an abandoned plant owned by the Central Illinois Public Service Company of Springfield had been ordered to pay $3 million to the four families whose children were stricken—including Brandon’s. The company, now called Amerencips, of course plans to appeal. In any case, it is too late for Brandon and his family.

Charlotte and Barbara G. were appalled at the machines, the tubes, and my general condition, knowing how I would hate my situation if I could see myself. Both had heard my impassioned diatribes against medical technology; both knew I did not want to live hooked up to machines. But apparently, neither of them spoke to the children about this (the kids do not have any memory of such a conversation; my friends’ memories are equally vague). My two tough-minded friends did talk to each other, deploring a situation in which neither felt she could legitimately intervene.

Despite the universal medical opinion that I was as good as dead, no doctor or nurse suggested taking me off the machines. Rob had a copy of my living will, but he says he didn’t think about it at all, and when one of my friends—not Charlotte or Barbara—did say something to him about pulling the plug, he was angry with her. He did not want to receive such suggestions. Neither of my children remembered the conversation at the outset of my illness in which I told them that I had made a pact with Charlotte to disconnect me if it became necessary. But I think that they—or at least Rob—had given it some unconscious thought and dismissed the idea, for when we discuss it now, he protests that no one knew what was wrong with me, no one knew whether I’d recover or not, and the fact that they did not expect me to recover did not mean I wouldn’t. I wasn’t brain dead; that my brain was riddled with cancer was, as far as Rob was concerned, only one (disgusting) man’s opinion. There was no reason to pull the plug, my son insists.

But I wonder what I would have done if I had been the one standing beside an inert friend whose doctors all agreed she was as good as dead and who had begged me beforehand to act in such an eventuality. I do not know what I would have done before this experience.
Now
is a different story. For I will never again be certain about what constitutes hopelessness or precisely when machines become instruments of hell.

Barbara Greenberg has a friend, Tracy, whose three-and-a-half-year-old boy fell from a window in an upper story of her house when he was in the care of a nanny. He went into a coma, and all the doctors gave up on him (this was thirty-odd years ago), insisting the situation was hopeless. But not Tracy. Being fortunate enough to have help to care for her three other children, she spent every day at the hospital. She brought tapes of the other children talking to him, books and music she read aloud and played, while touching and caressing the boy. He remained comatose for several weeks, but eventually, contrary to the doctors’ expectations, he woke up. He required months of rehabilitation, but in time he largely recovered. He had to wear a helmet when he rode his bike—something all children do now—and he retained some damage on one side of his body. But he is alive and otherwise quite well now, a man in his thirties.