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Buddhadharma : Winter 2011
67 WINTER 2 01 1 BUDDHADHARMA: THE PRACTITIONER’S QUARTERLY with a language you don’t understand and cus- toms that are unfamiliar. I experienced this when I was in Prague in the Czech Republic and decided to drive to Weimar, Germany, a four-hour trip away. I didn’t speak any Czech and my German was as inadequate as it was when I studied it in high school. But I did have a GPS that guided me. Without the GPS I probably would still be wandering around Germany. In many ways, the person with a chronic or terminal illness is on a similar journey, but without a GPS. Before their illness, how they viewed them- selves was based on roles, affiliations, values, abilities, and relationships, just to mention some of the multitude of things that constitute “iden- tity.” All of these in combination are used by people to create a picture of who they are, and by other people as they anticipate reacting to them. When an integral part of a person’s life is lost, identity changes, and so does their self- perception and place in the world. Even though you, as a Buddhist, may believe that the stripping away of ego-enhancing activi- ties should bring someone closer to under- standing their “original nature,” it may not for someone such as the Fortune 500 executive I cared for with ALS who became dependent on a caregiver for things seemingly as inconsequen- tial as scratching an itch. Or the novelist with dementia known for her intricate plots, who painfully wrote about becoming lost in the super- market she had frequented for years. Losses of ego-enhancing abilities are rarely thought of in positive terms by non-Buddhists as they face a world that is constantly changing because they are. As the world of the person requiring caregiv- ing changes, guidance for what to do should be based more on their needs than most of the Bud- dhist values that are the basis of your own life. Accept Where They Live in Time I know that the more I remain in the present, the more aware and more appreciative I am of every day I’m still alive. But is that true for every- one needing care? Is it important for everyone to remain “aware” in the present? For Eric, it was. He stayed in the present dur- ing the last two weeks of his life. It wasn’t out of philosophical conviction, but rather because that’s where he was most comfortable. He was dying from pancreatic cancer, had been divorced twice, had a history of drug problems, and had never been able to hold a job for long. But he had an eighteen-year-old son who was devoted to him. Eric told me his son’s love was sufficient for easing his death, and up to the time when he peacefully lost consciousness, our conversations were firmly rooted in the present. For Mary, her dying was eased when she focused on the past. For twenty years she had been instrumental in changing the lives of poor children through an afterschool reading program. As her disease painfully progressed, she focused on her past accomplishments to make the present tolerable. In her mind, she had made a difference in the world; there was no need to regret not hav- ing a future, and the present, devoid of family or friends, was no match for the joy she experienced just by remembering the past. Although the past and present held equal relief for these two patients, death for those liv- ing in the future did not. That was the case with an author who had made significant contribu- tions to the field of journalism and was widely published. Though he had a list of important publications that would have been the envy of most writers, he found no solace in what he had done. With only days left to live, he kept looking for a manuscript. “I have to finish it,” he said to me one morn- ing. “It’s due on Saturday. What day is it?” “Tuesday,” I said.” “Tuesday? How many days until Saturday?” “Five.” “Five days! I have six chapters to complete. I need to find it now.” He tried to get out of bed, but was too weak to sit up by himself. Another volunteer and I gently eased him back down. “We’ll find it for you, Bill,” I said. We kept searching the room until he fell asleep, but we couldn’t find anything that even resembled a manuscript. Until he died two days later, the most I could offer him in the way of comfort was to sit next to him and witness his anxiety about not finishing the manuscript. After he died, staff, volunteers, and a few of his friends sat around his body and each of us spoke about the impact he made on our lives. I asked a friend TOBIASKLUTKE/NEWYORKZENCENTERFORCONTEMPLATIVECARE Many of our Buddhist teachings may have limited value when the person we are caring for can only see the world and our advice through their illness.