FromChapter 6: The Dilemma of Hope

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.
—Martin Luther King Jr.

Hope . . . is the worst of all evils, for it prolongs the torments of man.
—Friedrich Nietzsche

I think the word “hope,” or at least the concept of it, must have been first developed by prehistoric people cowering in their caves at night, wondering if the sun would rise the next day. With no control over a phenomenon that was so central to their lives, there was nothing else to do but hope. Without hope, there would be no letup from the fear of being devoured by unseen animals. When the sun did rise the next morning, they must have been relieved but still unsure how it happened. Did we do that by intensely wishing it to happen? They hoped for a repetition the next night, and the next and the next. Watch a person playing a slot machine in Las Vegas as they tap a coin three times on their lucky bracelet before dropping it into the machine, and you’ll witness a modern version of the caveman’s hope.

The sun rising for prehistoric people, three cherries in a row for an inveterate gambler, and living cancer-free for me; we all hope for a good outcome over something we believe we have no control over. Hope allowed me to feel I might live longer than the statistics suggested. But the more I hoped, the less I did; there was no reason to rush, there would always be tomorrow, and the next day, and well, you get the picture. I faced a dilemma. On one hand I could blithely go through life hoping the dice were rolling in my favor. If I was wrong, I probably would not have enough time to tie up the loose ends necessary for a “good” death. On the other hand, if I abandoned hope and prepared to die even though there were no current indications that my death was remotely imminent, would I be needlessly fabricating a depressing life that might go on for a long time? I searched from something in between—a middle ground. I found it with Joyce’s help.

Joyce was sixty-two and had been a successful manager for a small company. I learned her history during a phone call with her sister to schedule a visit. One morning she was surprised when she had difficulty buttoning her blouse with her left hand. Thinking nothing of it, she switched to her right hand and attributed the problem to “too many tequila shots” the night before. When the same problem occurred while she was putting in her contact lenses, her concern increased. She realized something was seriously wrong when she slurred her words during her first conversation at work. The diagnosis was glioblastoma, an aggressive form of brain cancer. Surgery was scheduled within two weeks, and most of the tumor was removed. The surgeon told Joyce’s sister that she had a maximum of eighteen months to live.

The surgery left Joyce with a weakness on her left side, which progressed as the tumor redeveloped. According to Joyce’s sister, following the operation Joyce refused to use a walker or even admit that her disabling condition was worsening. Although her sister wanted her to have round-the-clock care, Joyce only agreed to have someone in the apartment in the mornings. One night she tried to walk to the bathroom without the aid of her walker. After taking only a few steps she fell on the floor and was too weak to stand or crawl back to her bed where the phone was located. All night she screamed for help, but no one heard. When the home-care worker came in at 8:00 a.m. for her five-hour shift, she found Joyce whimpering on the floor. At that point, her sister insisted that she have twenty-four-hour-a-day care. Reluctantly, Joyce agreed.

She acknowledged the cancer was spreading and began looking for “miracle” cures. When a radiologist and another surgeon offered to perform an experimental procedure with a minimal possibility of success, Joyce jumped at the opportunity. It wasn’t successful and left her with total paralysis on her left side. It became clear the tumor was rapidly growing, and the surgeon told her nothing could be done to slow it down. Although her sister tried to place her in a hospice facility, she was told the waiting lists were too long. That suited Joyce, who insisted that if she was going to die—something she still wasn’t convinced about—she wanted to die at home.

The first time I met Joyce was one week after she began hospice home service. The home health-care worker asked me to wait in the living room until she dressed her. The furniture was simple and well-worn; probably bought in the 1960s. The walls were covered with pictures of a young, attractive woman full of joy. In each of them was a large muscular man with tattoos covering both arms. While she was smiling in every picture with her arm around him and her head tilted toward his, he never smiled nor showed any visible affection toward her.

“You can come in now,” the health-care worker said as she opened the door to the bedroom.

Pictures similar to those in the living room covered the bedroom walls. Joyce was propped up and stared straight ahead at a large TV. She was the same woman in the pictures, but older and lacking the joy I saw in them. She was wearing a green bathrobe with “You’re the one” embroidered all over it in red. Her hair was done in a bouffant, almost matching the pictures in the living room, and she had on a great deal of makeup. When I said hello, she barely glanced at me, nodding her head and continuing to look forward at the TV that was tuned to a game show. I sat down next to her and didn’t say anything. For five minutes she stared at the TV and then, still not looking at me, began speaking.

“You probably know, they’ve given me six months. But I don’t believe them.”

“Why is that?” I asked.

“Well, for one thing, I feel as if the medicine I’m taking along with the effects of the radiation are still working. As long as I’m breathing, there’s still hope.”

I nodded my head. According to Joyce’s sister, she was told that the effect of the radiation had reached its zenith and the accompanying drugs were not retarding the tumor’s growth. Before receiving hospice care, she signed a document acknowledging that she had six months or less to live. I’ve found signing documents doesn’t always lead to acceptance. People can’t be forced to accept they are dying before they’re ready. I didn’t think Joyce was close, despite the deterioration of her body.

“Exactly what is it that you do?” she said.

It was a reasonable question, since the range of possible activities is broad. Most terminally ill people who were offered a hospice volunteer by an agency had little idea what we did.

“I don’t administer medicine or do housecleaning. Beyond that, almost anything.”

“I’m not interested in what you don’t do. Tell me what you will do,” she said sounding annoyed.

“Well, that depends upon you.”

“What depends upon me?”

“What your needs are. I can sit, we can talk, I can run errands. Your choice. Just ask me and I’ll let you know if I can do it.”

“How about changing the channel on the TV?”

“I think I can do that.”

“Can’t miss my soaps.”

I walked to the TV and turned it to the channel she wanted. As I returned to my chair, I noticed that the remote control was within reach of her good hand.