Neighbors might not have understood, but Elisabeth Kubler-Ross (EKR) surely would have understood perfectly. So much of her work has been so accepted into the culture that we’ve forgotten how ground breaking it was.

She was born in Switzerland, a triplet. Always being identified as a group (their parents, and later, their boyfriends had trouble telling them apart) taught her the value and the importance of recognizing and honoring the individual person. She was also shaped by the work that she did in Europe after World War II. On a trip to the concentration camp she saw conditions too horrible and hopeless to be imagined. But she also saw butterflies - symbols of hope - that had been carved by the dying men, women and children.

Kubler-Ross was trained as a physician. Circumstances brought her to the United States and to the University of Denver hospital. One day the professor for whom she worked asked her to fill in for him, telling her to give a lecture. It had to be about psychiatry, but she could pick any subject. She decided to lecture on death, thinking it was a subject the students needed to know about. She brought in a dying young woman to speak to the group, to tell them what it was like to be sixteen years old and dying.

To understand how radical this was, you have to understand that in the medical community of that time (and unfortunately, still in some places in our time), death was viewed as a medical failure. The doctors had failed in their job of saving the patient. Patients who were beyond help were shuffled down to the rooms and wards the far ends of the hallways They received fewer visits and less care because, after all, what was the point? They were going to die anyway.

People were outraged that Kubler-Ross would "take advantage" of a dying person. But the dying patients themselves were grateful to have a chance to be heard. When she moved to the University of Chicago, she developed a series of lectures on death and dying that included patient interviews. A publisher asked her to write a book on the subject, and the landmark book, On Death and Dying was born. In this book she presented the five stages of dying: denial, anger, bargaining, depression and acceptance.

Unfortunately, as these stages were popularized, they were used in ways that Kubler-Ross never intended. Stories are told of well-meaning but misguided nurses insisting that people have to be in a certain stage or "complete" a certain stage. People have taken them to be stair-steps, that once one is completed you move on to the next one. Instead of rigid stages, these five emotions are aspects of a fluid journey. In fact, Kubler-Ross would say, that the less "unfinished business" a person has in his or her life, the less need they have to pass through these stages. Where there is little unfinished business, there is less need for grief work.

"Unfinished business" for Kubler-Ross meant all of the unhealed hurts that we accumulate over the course of our lifetime. They are the dreams that were stillborn but never mourned. They are the feelings that we never had a chance to express but had to bottle up inside. For Kubler-Ross, success wasn’t in preventing the death, for death comes for all of us. Success was being able to say that you had truly lived before you died.

As word spread about her work,. she developed Life, Death and Transition workshops. Here she worked with people who were dying, with family members who were grieving, and with people who were mourning a hundred different kinds of grief. Not only could she reach and work with many more people in this way but the workshop participants could also learn from one another. It’s something that I see over and over again in workshops. One person cries, and another person finds permission to allow their tears to flow. One person faces the parts of their lives they’ve always feared confronting, and someone else finds the courage to do whatever it is that they must do. (To read an account of a LDT workshop, read Working it Through, By EKR).

One of Kubler-Ross’ contributions was in understanding that grief isn’t always nice and neat (in fact, it seldom ever is!) She often said that every hospital ought to have a screaming room, a safe and soundproof room in which people dealing with loss could scream our their pain and their outrage. Since Kubler-Ross’ work, we’ve used things like brain imaging technique to understand how trauma gets encoded into the body, how there must be a physical aspect of healing emotional wounds. Kubler-Ross knew it intuitively. Sometimes people need to scream or to hit something or simply to be held as they weep.

LDT workshops were held all over the world. Long before multiculturalism was a catchword, Kubler-Ross took her healing work into cultures as diverse as South Africa, Ireland and Russia. Her former staff members talk about working with participants with whom they didn’t share a common language. It didn’t matter, because they both understood the language of suffering and pain. They didn’t need to know what the participant was saying. All they needed to do was to give the participant a safe space in which to release the words and feelings that had been held inside for too long.

When asked to lead a workshop in South Africa in the days when apartheid was still the law and still the culture of the land, she agreed only on the condition that it be mixed. For the first time in their lives, a group of white women and black women shared the same world. When the AIDS epidemic began, she accepted AIDS patients into her workshops, even though she faced stiff opposition from her neighbors.

Another one of Kubler-Ross’ gifts was in working with dying children. She taught us that if you listen to a child closely, they will tell you much more than you imagined about their own deaths. She told many stories of children telling their parents that they would not be there for some event or another, and indeed dying before that event. She taught us to listen to children and to take them seriously.

In fact, she taught us a lot about listening to people who’d never been heard before, whether it was someone who was dying of cancer or of AIDS. If we do listen, we will have many teachers. She taught us that death is a part of life. She was a leader in beginning the hospice movement in this country so that the dying could receive care and be treated with dignity in their final days.

After her book, On Death and Dying, became a best seller, some began to refer to Kubler-Ross was "the Death and Dying Lady." It was a name she disliked. She much preferred to be known as "the Life and Living lady". Just like the butterflies in the concentration camp gave testimony to the power of hope, her work with the dying and the grieving bore witness to the sacredness and wonder of life.

copyright October, 2004