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In a sense, this book starts at the end.
It starts with the story of David. It also starts with someone else's writing and someone else's words, rather than mine. When I was first asked to write a book about the hundreds of Life, Death and Transition Workshops I have given all over the world over the past ten years, I thought, "Where can I begin?" Soon the answer came to me. Do not start at the beginning. Start at the end. Do not attempt to explain in the very first chapter how this work began, how these workshops came into being, how they function and operate, etc. Start with the end, with the results of these workshops.
And so this book begins by telling you about the end product of our workshops. And by telling you about the end of David's life. Endings, someone once wrote, are just beginnings backwards. That is nowhere more true than it is here.
Following is a letter written to me by David's mother. It will tell you a lot about why this book is called Working It Through.
May 1, 1979
6:00 A.M. -- the beginning of a new day. May Basket Day! When I was a little girl, we got up early to pick cowslips and violets for the baskets of popcorn and fudge we placed by our friends' front door. But you have asked me to remember a more recent time -- the workshop, and what it meant to me and my family. Oh, Elisabeth, how can I even begin to put that into words? The workshop opened a whole new world for all of us to live in! I want to tell everybody about it. But to do that I will have to think back to those awful days, and it hurts so much to remember. I would rather think about Val's wedding in our garden next month. David and Brad look so tall and handsome in their new suits. Dave is practicing the songs he will sing. There is excitement in our house. New memories to mix with the old. Some of the old memories I don't want to think about, but today I must. I have stolen this whole day from a hectic week to write about the workshop. So I will sit quietly and remember --
"You are ruining your life trying to take care of me, Mom."
"Oh, no, David. Please don't say that. I love you so much." (Oh, Lord, he knows. I have tried to hide my desperation, but David knows. I just can't do it anymore. Why won't you help me? Why won't somebody help me? Please -- please --)
That was only the beginning of a conversation between my son and me. The next morning I obtained Dr. Ross's address from our public library. I wrote to her, pouring out my feelings about our eighteen-year-old son, David, who has had surgery twice for brain tumors and was left with facial paralysis, repeated corneal ulcers, impairment of right-hand movement, poor balance and difficulty walking and partial deafness. He has seizures and takes four kinds of medication daily. There is another tumor growing. David has always been a very special human being with so much to give. But most people are afraid because of his handicaps or too busy to really get to know him. So he has no friends and the world is a lonely place. He accepted that, making music and his guitar his friends. His room was his safe, warm place, filled with music, his artwork, laughter and love. Now he felt lonely and unacceptable even here because there was so much tension and weariness in the house. So many tears and not much laughter anymore. Worst of all, the tumor is growing and he knew he would soon be deaf -- no more stereo, no more Beatles, no more guitar, no more music. All of his friends would be gone. David has struggled so hard to live with dignity, to learn to respect himself. Now he was telling me he didn't want to go on living anymore.
"David, do you feel that bad? What can I do to help you?"
"There's nothing you can do, Mom. That's just the way it is." And he cried, and he put his arm around me and patted my shoulder. David never cries. "Tears won't do any good, Mom," he always tells me. But he never told me not to cry, so I wept for both of us.
I finished my letter to Elisabeth and asked for help. As I stood in front of the mailbox, I told God that I had done everything I could do and our lives were in His hands. Elisabeth was home one day a week with thousands of letters to answer, but within two weeks I received a letter from her, sending help and hope.
In January 1978 my husband Dave and I attended our first workshop at Shanti Nilaya. Our daughter had the flu. A blizzard had closed O'Hare Field. But we were meant to be at that workshop and we were. For five days, forty-six people talked and listened to each other. We also laughed, sang and ate together. We shared our fears, guilt and anger. We learned to forgive others and to forgive ourselves. We allowed other human beings to see our tears and pain. We all cared and we showed it.
At this workshop I relived some of the experiences of David's childhood which hurt him so terribly. I shared the guilt I still felt for mistakes made because I was insecure and inexperienced, trusting doctors and so-called experts who were not trustworthy. I shared the heartbreak of hearing David say his life had been worthless, the anguish of watching him try to face living without music, the helplessness of trying to comfort him when there is no hope.
After the privilege of attending two workshops, I wanted David to have that wonderful experience. I knew he had as much to give as he would receive. So I wrote to Elisabeth, but she didn't answer. Then on a Thursday in August, she called, asking if we could bring David to a workshop in California the following Monday. I said yes without even thinking how impossible it would be to make all the arrangements in three days or how I could take him two thousand miles from home by myself, against his doctor's advice. I knew it was meant to be, and with the help of a lot of good people, it happened.
When we came out for breakfast the first morning, there was the usual reaction to David. He is impressive! Six feet tall with a red Afro and a red beard. The right side of his face droops because of the paralysis. His right eyelid is sewn shut. He walks with his legs far apart to balance himself. And he is deaf. Some of the people were uncomfortable. Some were afraid. But soon, they began to come closer, to communicate with him. To every person who reached out to him, he gave his unconditional love.
I didn't know how David would react to sitting all day in a room full of people when he couldn't hear what they said. I took a notebook and tried to summarize for him what every person was sharing with the group. From the very beginning he was completely absorbed in the feelings being expressed. He willingly shared his own. "My name is David," he said. "I have come to get help." During the breaks he looked longingly at the swimming pool, remembering how he loved to swim. On Tuesday some of the men took him in the pool, the first time in over two years. He had a ball! When asked if he had come with any special answer to find, his reply was "Yes, myself." In the evening John, the priest, was saying mass out on a huge rock. David looked up and saw the big ankh silhouetted against the sky. I told him it was the symbol of life. I gave him the one I had on a chain. It became very important to him, and he has worn it ever since.
Thursday morning David told me, "Mrs. Ross has a lot of people to do, and I probably won't get done, but I would like to tell the people that I have trouble with praying." He asked if John, the priest, could help him because "he is good at praying."
So David shared: "I have trouble with praying."
John wrote: "Tell me what you want to pray for."
The answer was: "For knowing God."
John wrote: "When we love one another, we feel God. We are now praying to God."
The room was very quiet. Then suddenly everyone surrounded David, hugging him and each other. David knew God! He felt the joy of sharing himself and of feeling the love of the group and the love of God. Through his sharing, many people realized that God is love. David is a precious gift to all of us.
So we came home. In September David's great-aunt was dying of cancer and she was afraid. She wrote to David often. He had a cross and chain which he was saving for me. He wrapped it with a note and sent his dad and me to put it around her neck. His note said, "Love this as I do mine. I think it will open your heart toward your new life." She never took it off. It symbolized all the love that surrounded her. On September 25 she died peacefully and unafraid.
David continues to give unconditional love to all who reach out to him. He takes care of his roommate, who can't walk or talk or read or write. It makes our hearts sing to watch the special kind of communication they share.
In March I was asked to speak to five classes of high school seniors -- sharing with them what it is like for a family to face death; our feelings, how we cope and how the workshops have helped us. A year ago I would have been too scared to consider such a request and my husband would have had to drive me if I went. Yet there I was, alone on the expressway during the rush hour in a snowstorm! I didn't think of backing out and I wasn't afraid because living without fear and sharing is what the workshops are all about. I hoped to show these students that even in the face of death, it is possible to enjoy life. I talked about the things we do together. I read them some of David's poems and answered their questions. We shared our feelings. It was a special time for me.
We see David every Wednesday, Friday and Saturday. He is home for birthdays, holidays and all special days. When he is able, he attends a special school for the physically handicapped and a sheltered workshop. He is deaf now, blind in one eye. He doesn't want any more surgery, and we agree with his decision. He is not afraid. Communication is very slow, mostly in writing with some sign language. Hugging is the best way and we do a lot of that. Sometimes our grief overwhelms us and we have to cry, but we also laugh and love and enjoy each day. Love will be with us forever!
We are a family. Today there are five of us. We don't know about tomorrow.
Both Dave (my husband) and I learned from the sisters and brothers of other terminally ill patients who attended your workshop. We listened to their feelings of rejection and anger toward their parents, the guilt and pain they suffered. We realized that we are only human parents and can't do it all. Understanding this, we considered our own needs and those of our other two children. Our tremendous burden of guilt lifted, making it possible for us to live in peace with the heartbreaking decision of nursing-home care for David.
This workshop was one of the most joyful experiences Dave and I have ever shared in our thirty-two years of marriage.
In February Elisabeth made a house call to meet David and talk with him. His own words say it all: "Mrs. Ross lifted my heart. She gave me peace."
David's mother attended another workshop, her last, alone a year ago. Here is what she had to say about it:
6:00 A.M. May 9th. My mom's birthday. She died of cancer in 1974, three weeks before David had his first brain surgery. The grief I had to postpone then was one of the reasons I needed another workshop. In the spring of 1978 my physical health deteriorated under the weight of additional responsibilities. There were just too many problems in my life that I could do nothing about. The world was going blithely by my door while I struggled along. Nobody really cared -- not even God. My exhaustion turned to anger, and I was like a block of ice, trying not to feel anything. I asked Elisabeth to let me come to the June workshop in Wisconsin but it was already full. I was scared to go alone, but I needed help fast and I knew I would get it at the workshop. So I bugged Elisabeth until she said yes.
In Wisconsin the volcano erupted and I let out my anger toward a lot of things and a lot of people. Most of all toward myself for not being the person I really wanted to be all my life because I was afraid. I told God what a big bully he was and what I thought of him for not helping his children -- all of this in front of more than seventy people, ten of whom were clergy. After surviving that, I convinced myself that I wasn't afraid of anything anymore. What a relief!
In December 1980 David had pneumonia with complications and was near death, but our family still needed him to help us so he stayed with us for a little while longer. He died suddenly on March 7, 1981. We were with him and we are thankful that we had been able to work through our guilt and fear so when the time came, we could let him go in peace.
When David was a little boy, he would jump on our bed at 6:00 A.M. and say, "I want to tell you a secret, Mom. I love you with all my heart." From the day he was born, he was always full of love, and he gave it freely to everyone. We were privileged to be his parents. We loved him deeply and it hurt so much to give him back to God. His beautiful spirit will always be with us whenever we feel love.
I now want to add a little postscript of my own to the story of David as told by his mother. I will start by saying that David's physician had strongly discouraged the parents' request for permission to take David to our Life, Death and Transition Workshop. It was regarded as an imposition and as a totally impossible task. Both parents listened to their own intuition and, over the objections of the medical team, his mom brought him anyway. As it turned out, it was the first time in David's life that he had had five days with his mom all alone without having to share her with his siblings. It was the first time he began to understand her pain, her grief and her problems in an open and honest way.
It is important to add that the mother, due to much of her guilt and unresolved shame over her inability and unreadiness to listen to David, tried to protect him. She had a tendency to sit next to him and to hover over him. David emerged out of this workshop as a rather independent spirit, separating himself on his own initiative from the clinging mother, who finally was able to let go of him.
We all watched him with a sense of pride as he requested a swim in the pool, something he had not done for years and had enjoyed in his healthier days. With the help of other strong workshop participants he was carried into the pool and enjoyed an hour of fun and joy in the element of his choice. It seems that under what we would call "normal" circumstances, the last thing in the world one would do with a terminal patient is to take him for a dip in the pool, yet within the framework of the workshop it was the intelligent, warm, marvelous thing to do, which was beneficial to everybody concerned.
My last good-bye with David was a big, strong hug and a thank-you beyond words -- a thank-you not just from David to me, but from me to David for having the courage to attend an exhausting and physically draining five days and nights. It was a thank-you for his willingness to share his experiences with a group of people who also learned one of the hardest lessons -- to listen to someone who can barely speak, who is barely audible and who makes it at times very difficult not just to switch off when it becomes too cumbersome and painful. It was the reaction of the workshop participants to David, and especially his profound question about God at the end of the workshop, and the beautiful and loving response of the priest that makes these encounters so unforgettable.
It is not enough to say that David stayed in touch with many of the workshop participants and that he very occasionally even sent me a love letter. This in itself was an incredible gift, considering how long it took him to write a single word on a piece of paper. But at the moment of his death he knew with pride and joy that he had touched many lives.
This, in the end, is what our Life, Death and Transition Workshops are all about. Touching lives.
Copyright © 1982 by Elisabeth Kübler-Ross and Mal Warshaw