Reclaiming Banished Voices

Chapter 1 The “Verkshop” We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time. —T. S. Eliot It was in 1969 that I first heard Elisabeth speak, just after she had written On Death and Dying. I was a second-year med student at Columbia University in New York City. Figuring I might see a dying patient someday, I attended her Saturday morning presentation. Although the largest auditorium was reserved for her talk, only about fifty attended. We were treated to a series of moving stories about the courage and suffering of the dying and their beloved caregivers. I rushed out to buy her book but left it sitting on my shelf, unread, as I continued my rigorous medical education. One of the stories Elisabeth told was her visit to meet a nine-year-old boy who was dying of leukemia. Consumed by nearly six years of chemotherapy regimens, with only brief periods of remission, Jimmy never had a chance to learn to ride his brand-new two-wheeler bike, which sat in his room with the training wheels still on. Just a few weeks from his death, Jimmy told Elisabeth that his only unfinished business was to ride his bike around the block all by himself. Elisabeth said she would help. She convinced Jimmy’s mom to let her pale and very weak little boy take what would be his final journey. They carried the bike to the sidewalk and assisted Jimmy to climb on. Embarrassed that, at nine years old, he had to ride with training wheels, Jimmy nonetheless pedaled slowly away from his mom and Elisabeth. The two women held onto each other and sent up silent prayers as he made his first turn and disappeared around the corner. It seemed an eternity before Jimmy and his triumphant smile came into view as he made the final turn at the other end of their block. It would be just a few weeks later, on the day prior to his death, that Jimmy presented his bike to his younger brother on the condition that he take the damn training wheels off. I have only recently realized that another part of me was listening to Jimmy’s story beyond the competent medical student who had been performing autopsies at Columbia Presbyterian Medical Center. Fourteen years later, in 1983, while I was making my predawn rounds at Tucson Medical Center, I saw a circular announcing that Elisabeth Kübler-Ross would be lecturing at a local high school. I began my hospital rounds a four-clock in the morning to avoid competition with other physicians, who also wanted to review and write in the medical charts, and to see all my hospitalized infectious disease patients before my internal medicine office hours began. Otherwise, I wouldn’t get home in time to have dinner with my family; help bathe my young children, Matt and Rachael; and read them a bedtime story. Another reason for “rounding” so early was to get in and out of the hospital before the other docs arrived. Many of my consults came when other docs spotted me in the halls. “Larry, I just remembered that I wanted you to see Mrs. So-and-So. She’s been in the ICU for six weeks and is still running fevers.” Picturing four volumes of charts, which would take me an hour to wade through before I could even see the patient, I put on a smile, thanked my colleague for his or her consult, and seethed my way to the ICU. Little did I know it was a five-year-old boy inside me who was the ticking bomb. As soon as I saw the flyer announcing Elisabeth’s lecture, I impulsively dialed the number, not realizing, until a very sleepy voice answered, that I was calling the seller at six o’clock in the morning. What I now know is that my internal little boy dialed the number because he was very eager to once again see the woman who had been Jimmy’s champion. Recently, he also told me that he harbored the fourteen-year hope that one day Elisabeth would champion him. I knew all about being awakened from a sound sleep. Although I had been up and working for two hours, I had no excuse. But young children don’t think about time of day when they know what they want. Fortunately, the sleepy woman at the other end of the line was as gracious as anyone could be. On this auspicious morning, I bought four tickets, including one for Anne, who had never heard Elisabeth speak, and two for friends who had lost a son to leukemia several years before. Elisabeth was a triplet, born into an upper middle-class Swiss family in 1926. Having an identical twin, Erika, Elisabeth was never seen as a separate person. Even her parents called them by combined names. In one of her lectures, Elisabeth described how one sister excelled in school while the other disappointed, yet both were given Cs on their report cards. In fact, the only warm-blooded creature who could tell the girls apart was Elisabeth’s pet black bunny, which her father insisted she take to the butcher to prepare for a wartime meal. Another colorful story was about Elisabeth standing in for her sister on a date. At home sick, Erika didn’t want her boyfriend to ask her competitor to the dance. Agreeing to this absurd plan, Elisabeth asked Erika how far she’d gone with the guy and dressed in her sister’s clothes. When she realized the boy didn’t suspect anything throughout the entire evening, Elisabeth knew she would have to leave Switzerland to have her own life. Her need for individual recognition was a blessing to the world, and at times it was perhaps a personal burden, driving her to work incessantly and place herself in the center of controversy. When the war ended, Elisabeth did relief work in Zurich and then visited Majdanek concentration camp in Poland. There she met a Jewish woman, who told her that, under the right circumstances, all of us are capable of doing what the Germans had done. Seeing railroad cars filled with children’s shoes, Elisabeth pondered how the guards could have exterminated small boys and girls during the day and worry about their own children with chicken pox when they got home at night. When Elisabeth graduated from medical school in Zurich, she married an American classmate. After losing her slot in a pediatric residency when she became pregnant, she opted for training in psychiatry. Upset by how health care professionals avoided talking about death, Elisabeth asked her surgical oncology colleagues whether she could interview their dying patients. When they responded by saying they had no dying patients, she asked whether she could speak to those with cancer. Finally, one colleague consented if Elisabeth promised she wouldn’t tell his patients they had cancer. After introducing herself as a physician who was available to talk about whatever they wanted, Elisabeth quickly discovered that almost all these patients knew they had cancer and were dying. Soon others began requesting to speak to Dr. Kübler-Ross. Later, she created a seminar at the University of Chicago Hospital, where she interviewed dying patients in front of a multidisciplinary audience. These conversations led to her book writing, which, along with her storytelling gift, made her an instant worldwide authority. It’s ironic that, more than four decades later, so much energy continues to focus on the limitations of her grief model, when Elisabeth stopped talking about the “five stages” immediately after she wrote On Death and Dying. In twelve years of working with her, I never once heard Elisabeth mention them.