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                    The Purpose of Life

 

All passages below are taken from Elisabeth Kubler-Ross’ book, “The Wheel of Life—A Memoir of Living and Dying.” It was published in 1997.

 

It was inevitable that I had to look beyond the hospital. My work with dying patients made a lot of my colleagues very uneasy. Few people at the hospital wanted to talk about death. It was even hard to find someone who would admit that people there were dying. Death just was not something that doctors talked about. So when my weekly search for dying patients became nearly impossible, I began making house calls on cancer patients in surrounding neighborhoods like Homewood and Flossmoor.

I offered a mutually beneficial deal. In exchange for free bedside therapy, patients agreed to be interviewed at my seminars. This approach stirred up more controversy around the hospital, where my work was already called exploitative. Then it got worse. As patients and their families spoke publicly about how much they appreciated my work, the other doctors found another reason to resent me. I could not win.

But I behaved like a winner. On top of motherhood and work, I volunteered with several organizations. Once a month I screened candidates for the Peace Corps. They probably had mixed feelings about me, since I tended to approve all those considered to be risk takers, not the middle-of-the-roaders my associates preferred. I also spent a half day each week at Chicago’s Lighthouse for the Blind, working with parents and children. But I have a feeling they gave more back to me.

The people I met there, adults and children alike, were all struggling with the bad hands they had been dealt by fate. I studied how they coped. Their lives were a roller coaster of misery and courage, depression and accomplishment. I constantly asked myself what I, as a sighted person, could do to help. Mainly I listened, but I was also a cheerleader, encouraging them to “see” it was still possible for them to live full, productive and happy lives. Life was a challenge, not a tragedy.

Sometimes that was a lot to ask. I saw far too many babies born blind, as well as others born with hydrocephalus, who were written off as vegetables and placed in institutions for the rest of their lives. Such a waste of life. So were those parents who did not find help or support. I noticed that so many parents who gave birth to blind children went through the same reactions as my dying patients. Reality was often difficult to accept. But what was the choice?

I recall one mother who had gone through nine months of a normal pregnancy with no reason to expect anything but a normal, healthy child. But in the delivery room, something happened and her daughter was born blind. She reacted as though there had been a death in the family, which was normal. But after being helped through the initial trauma, she began hoping that her daughter, named Heidi, would one day graduate from school and learn a profession. That was healthy and wonderful.

Unfortunately, she got involved with some professionals who said her dreams were unrealistic. They encouraged her to put the baby in an institution. The family was heartbroken. But thankfully, before taking any steps, they sought help at the Lighthouse, which was how I met this woman.

Obviously I could not offer any miracles that would return her daughter’s eyesight, but I did listen to her troubles. And then when she asked what I thought, I told this mother, who wanted so badly to find a miracle, that no child was born so defective that God did not endow him with a special gift. “Drop all your expectations,” I said. “All you have to do is hold and love your child like she was a gift from God.”

“And then?” she asked.

“In time, He will reveal her special gift,” I replied.

I had no idea where those words of mine came from, but I believed them. And the mother left with renewed hope.

Many years later, I was reading a newspaper when I noticed an article about Heidi, the little girl from the Lighthouse. All grown up, Heidi was a promising pianist and was performing in public for the first time. The local critic raved about her talent. I wasted no time looking up her mother, who proudly told me how she had struggled to raise her daughter. Then all of a sudden, Heidi developed a gift for music. It just blossomed, like a flower, and her mother credited my encouraging words.

“It would have been so easy to reject her,” she said. “That’s what the other people told me to do.”

Naturally I shared these kinds of rewarding moments with my family and hoped they learned not to take anything for granted. There were no guarantees in life, except that everyone faces struggles. It is how we learn. Some face struggle from the moment they are born. They are the most special of all people, requiring the most care and compassion and reminding us that love is the sole purpose of life.

 

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Believe it or not, there were some people who actually thought I knew what I was talking about. One such person was Clement Alexander, an editor at the Macmillan publishing house in New York. Somehow a short paper I had written about my Death and Dying seminars landed on his desk. That caused him to fly out to Chicago and ask if I wanted to write a book about my work with dying patients. I was dumbstruck, even as he gave me a contract to sign, offering $ 7,000 in exchange for 50,000 words.

Well, I agreed, so long as I had three months in which to write the book. That was not a problem for Macmillan. But then I was left by myself to figure out how I was planning to manage two children, a husband, a full-time job and various other things, plus writing a book. I noticed the contract already had given my book a title, On Death and Dying. I liked it. I called Manny and told him the good news. Then I began to think of myself as an author and I could not believe it.

But why not? I had countless case histories and observations piled up in my head. It took three weeks of sitting at my desk late at night, while Kenneth and Barbara slept, before I figured out the book. Then I saw very clearly how all of my dying patients, in fact everyone who suffers a loss, went through similar stages. They started off with shock and denial, rage and anger, and then grief and pain. Later they bargained with God. They got depressed, asking, “Why me?” And finally they withdrew into themselves for a bit, separating themselves from others while hopefully reaching a stage of peace and acceptance (not resignation, which occurs when tears and anger are not shared).

 I actually saw these stages most clearly in the parents I had met at the Lighthouse. They associated the birth of a blind child with loss— the loss of the normal and healthy child they expected. They went through shock and anger, denial and depression, and with some therapy finally managed to accept what could not be changed.

People who had lost or were in the process of losing a next of kin went through the same five stages, starting with denial and shock. “It can’t possibly be that my wife is dying. She just had a baby. How can she leave me?” Or they exclaimed, “No, not me, I can’t be dying.” Denial is a defense, a normal, healthy way of coping with horrible, unexpected, sudden bad news. It allows a person to consider the possible end of her life and then return to life as it’s always been.

When denial is no longer feasible it’s replaced by anger. Rather than continue to ask, “Why me?” the patient asks, “Why not him?” This stage is especially difficult for families, doctors, nurses, friends, etc. The patient’s anger scatters like buckshot. Fragments fly in every direction. It hits everyone. He rages at God, his family, at anyone who is healthy. The patient might as well be screaming, “I’m alive and don’t you forget that.” His anger shouldn’t be taken personally.

If patients were allowed to express their anger without guilt or shame, they often went through a stage of bargaining. “Oh, please let my wife live long enough to see this child enter kindergarten.” Then they added a quickie prayer. “Wait at least until she finishes high school. Then she’ll be old enough to cope with the death of her mother.” And so on. Pretty soon I noticed the promises people made to God were never kept. They literally bargained, raising the ante each time.

But the time spent bargaining is beneficial for the caregivers. The patient, although angry, is no longer so consumed by hostility that he can’t hear. The patient is not depressed to the point where he can’t communicate anymore. They may be firing bullets, but they’re not hitting anything. I advised that this was best time to help patients complete whatever unfinished business they had. Go into their rooms. Confront old squabbles. Add fuel to the fire. Let them externalize their anger, let go of it, and then the old hatreds will turn into love and understanding.

At some point, patients will find themselves severely depressed over the huge changes taking place. Naturally. Who wouldn’t? Either their illness can no longer be denied or severe physical limitations set in. Over time there might also be financial burdens. There are often drastic, debilitating changes in appearance. A woman worries that the loss of a breast makes her less of a woman. When concerns like these are openly, forth rightly addressed, patients often respond beautifully.

The more difficult type of depression results from a patient’s realization that he is going to lose everything and everyone he loves. It’s a kind of silent depression. In this state, there is no bright side. Nor are there any soothing words that can be said to alleviate the state of mind that’s given up on the past and is trying to fathom the unfathomable future. The best help is to allow the patient his sorrow, say a prayer, simply give him a loving touch or just sit with him on the bed.

If patients have been allowed to express their anger, to cry and grieve, to finish their unfinished business, to articulate their fears, to work through the above stages, they will reach the last stage of acceptance. They won’t be happy, but they will no longer be depressed or angry. It’s a period of quiet, meditative resignation, of peaceful expectancy. The previous struggle disappears and is replaced by the need for lots of sleep, which, in On Death and Dying, I described a patient calling “the final rest before the long journey.”

 

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After two months, I finished the book. I realized that I had created exactly the kind of book I had hoped to find in the library when I went to research my first lecture. I dropped the final draft in the mailbox. Although I had no idea whether On Death and Dying would become an important book, I was absolutely sure the information I had set down was very important. I hoped people would not misconstrue the message. My dying patients never healed in the physical sense, but they all got better emotionally and spiritually. In fact, they felt a lot better than most healthy people.

Later someone would ask what all those dying patients had taught me about death. First I thought about giving them a very clinical explanation, but then I would have misrepresented myself. My dying patients taught me so much more than what it was like to be dying. They shared lessons about what they could have done, and what they should have done, and what they didn’t do until it was too late, until they were too sick or too weak, until they were widowers or widows. They looked back at their lives and taught me all of the things that were really meaningful, not about dying  .  .  . but about living. [160-164]

  

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