The Issue of Death and Dying
Most adults live in some sort of denial about their own and love one’s impermanence. The denial of death can be both healthy and unhealthy. Denial can allow us to live our life with out constantly thinking about that any moment might be our last. Denial can also hinder our ability to live our life to the fullest. People with unhealthy denial of death may avoid spending time with a dying friend or family member. They may also struggle with their own dying to the point that they shun friends and family from sharing in their last moments. The following examples of adults dealing with death and dying come from my work with Ram Dass and Frank Ostaseski, and years of hospice work.
Mandy’s Anger
The first hospice patient I ever sat with was a lady who I will call Mandy. Mandy was a married women in her early forties. Mandy and her husband where suffering from what B. Carter and M. McGoldrick (1999) call, “unpredictable untimely death horizontal stressor” (p.6). I was in the last day of my Zen Hospice Project volunteer training when I heard blood curdling screams coming from a room above the training area. It scared the hell out of me and it made me question my idea of becoming a hospice volunteer. Frank Ostaseski, the founder of Zen Hospice and my volunteer trainer told me that the screams above were from a new patient. He said the patient was not in any physical pain. She was screaming because she was angry about dying.
A couple of nights later, I showed up for my volunteer shift that went from 5 PM to 10 PM. There were only two volunteers on a shift, and my volunteer partner was a man named Greg. Greg was a man in his late fifties; he was a medical electrical engineer who had been volunteering in hospice for around seven years. Greg ended up being one of the best teachers of death and dying that I could ask for. Greg, like me, had come to hospice to volunteer because of a death of a loved one, and to face his own fear of dying.
The first night I worked with Greg, he took me into Mandy’s room to introduce me to her. She was screaming and swearing, her skin was grey with sores, and she violently swung her torso around in the bed. He asked me if I wanted to sit with Mandy or to relieve a dead Hindu man’s wife from sitting with his body. His religious beliefs stated that someone always must be with his body for three days. I thought about the choices that Greg had given me, sitting with a screaming dying person or sitting alone with a dead body. I chose to sit with the dead man. Later, I realized that I was so scared of being with a dying person, that sitting alone with a dead body in a candle lit room did not seem so scary.
While sitting with the dead man that night, I also came to realize the power of the mind in protecting us from acknowledging death. I was alone with the dead man just meditating with my eyes focused on his body, when I began to notice his chest breath up and down. I would shake my head in disbelief, thinking this man is dead so he cannot be breathing, and then, when I looked again, his chest would not move. I repeated the process again and again through out the night until his wife came back to relieve me. It became clear to me that I had no control of how my mind dealt with looking at a dead man. My mind would override reason and cause my eyes to see a dead man breathing until I would override my mind by telling it that he could not breath because he was dead.
Later at our meditation checkout, I told Greg about my ordeal. He confirmed that most hospice workers experience dead people breathing. It was a great lesson in the amount of denial concerning death that we have hardwired into us as human beings.
For my second volunteer shift, I decide to sit beside Mandy. I entered the room slowly, finding a chair to sit in next to her bed. She was screaming mad. She was swearing at the CNA who was trying to adjust her pillows. The CNA left the room and it was just Mandy and I alone. I was told that no one could understand what Mandy was screaming about or what she wanted. But, as I sat there, it became very clear to me just what she was trying to communicate. Maybe I understood her because I suffer from a hearing disorder that affects my speech clarity. I asked Mandy if there was something I could do for her. She wanted all the neck tags cut out of her gowns because the tags bothered the back of her neck. I went out and borrowed a pair of scissors from the CNA. I cut out the gown tag behind Mandy’s neck. Then I pulled out of the drawers all of her shirts and gowns and cut the tags out. The CNA watched me as though I was crazy. I turned to Mandy and told her that there were no more tags. She smiled and instantly calmed down. It was the beginning of a very close bond that we would share for the next couple of weeks until her death.
I was with Mandy when she died at around five in the morning on the day of her death. I was with another volunteer named Astra who belonged to a chorus that sang to the dying. Astra sang beautiful songs while I held Mandy’s hand and told her that it was perfectly safe to let go. Now that I am a father, I realize how similar the breathing patterns are between birthing and dying. The distance between each of her breaths got longer until there was only an out breath. Here is a Buddhist metaphor that I learned that talks about how long our life is. The Buddha asks a monk how long is life and the monk gives the Buddha different ages. Each time the Buddha tells the monk that he does not understand. Finally the Buddha tells the monk that life is only as long it takes the in breath to go out. When Mandy’s last inhalation puffed out, her life ended, and her body began to cool. According to Stephen Levine, “There is a moment on passing into death when the psyche calls out for every last molecule of oxygen to stay just one more moment, one more breath, in the body” (p.211).
Mandy erased a lot of fears that I had about death. During the time I spent with Mandy, I learned more about why she screamed. Some of it was out of fear of dying but Mandy was also mad at Kaiser Hospital. She had been cured of her cancer by a specialist at UCSF hospital and celebrated a year cancer-free. She was sent back to her regular hospital, Kaiser, for continued treatment. A doctor there gave her an accidental overdose, leaving her mostly blind and paralyzed below the waist. She did not wish to continue living in such a way so she stopped treatment. Soon after her treatment stopped, the cancer returned and she came to Zen Hospice to die. I understood Mandy’s anger much better now, which allowed me to help her to come peace with dying. I liked how Wheelwright viewed death in our class reader. J.H. Wheelwright (1987) writes:
I see death, in this scheme of things, as a positive process of making room for further efforts in the process of humanity, on the part both of those who come after us and those that have preceded us. It is a chain built with greatest care and fantastic order in which a life may be obliterated at a moment’s notice by needs of another life, spaces filled and emptied for the flame of life to continue. Human beings, when they come to the end of their usefulness, like all lives, I feel, are not wiped out totally by another’s physical needs, but are displaced temporarily, and this as it should be. Otherwise we would interfere with the purposefulness of life. (40)
Her husband invited me to Mandy’s funeral gathering. I agreed to go because I thought that there would only be a hand full of people because she never had any friends or family come to visit at the hospice. When I showed up at the funeral reception, the house was filled with around eighty people. We all watched videos of a healthy Mandy that I did not recognize. Friends shared funny stories of a lively lady that I did not know. I began to ask her friends how they felt about the way she looked at the end of her life from the chemo and cancer. Most had some kind of excuse why they never saw her towards the end. I believe that seeing someone ill is too much of a reminder of our own impermanence for most of us to face. It was the last time that I ever went to a hospice patient’s funeral. I never knew these healthy people that friends and family want to remember. The people at funeral gatherings want to remember the person in healthy vibrant times, and a hospice worker can share in none of those.
Kenneth’s Humor
I sat with a very kind soul named Kenneth. He was a very intelligent man who led a colorful life in large cities. In his mid-sixties, he decided to live his remaining years in peaceful isolation on the forested, northern coast of California. One morning while jogging, he fell. He thought to himself that it was weird that he would fall for no reason. This pattern of falling or dropping things continued sporadically until Kenneth decided to get checked out by a physician. Test showed that he suffered from a rare neurological degenerative disorder. Kenneth’s future held the loss of movement that started in his feet and worked its way upward.
When I met Kenneth in the hospice, he could only move his head around. Unlike most paraplegics, the disease he had left all his nerve ends very painful. I had to use extreme caution when touching or moving Kenneth. He had a great sense of humor about his predicament, even joking when staff and volunteers accidentally caused him discomfort.
He told me that he had no fear of dying and I believed him. I remember a Sufi saying – learn to die before you die. Kenneth held that Sufi saying in all its light. I felt that Kenneth knew what waited beyond death, even though he did not seem to be a religious man – maybe he retained knowledge of where he came from before this incarnation. Lionel Corbett (1987) writes, “In fact, human consciousness either brings about or is essential to incarnation. It is even arguable that consciousness is synonymous with incarnation—the more we have of it, the more we realize our divinity” (p.387).
The thing that Kenneth was afraid of was choking to death. The doctors told him that with his condition most people either drowned in their own saliva, unable to swallow any longer or that the heart muscle would stop working. He was hoping for the latter. Years later, I still ponder on what it would be like to feel so helpless that you may drown in your own saliva.
Looking at Kenneth’s position it seemed like he had no control of what happened to him but, talking with him, he seemed so at peace with where he was. Kenneth’s ex-wife would come to see him everyday. She cared for him deeply. She told me that he was the most wonderful man she had ever met. I learned that he had no care for the world of making money, which eventually strained things in their relationship. In New Passages Gail Sheehy (1995) writes:
Your soul, and its nurturing and crafting, is something only you have control over. Even if your life of getting and spending may have been less than a success, you still hold the power to shape the nature of your soul. What is the soul anyway? It is the sum total of your essence, what you have done in the world, what is special about you. When you die, the soul represents who you were up to he moment you passed on. (428)
The hospice and Kenneth’s ex-wife requested that I spend the night watching Kenneth on what most felt would be his last night. I accepted the invitation and spent the night rotating from sleeping on the floor to sitting beside him in a chair. I would help the CNA change him from time to time. Early in the morning as the sun was rising, I was helping the CNA change his diaper. I was holding him sideways in the bed while the CNA cleaned him up. She was just finishing up, preparing to put on the clean diaper when he blasted her with poop. While she was cursing the mess, I looked down at his face and saw that he had a large smile with a bit of a giggle. Kenneth kept his humor to the very end of his life. He did not die with me that night but later on that day, after I had returned home. He did die by the way he fear, chocking on his own saliva, but the CNA told me that he seemed to have no discomfort, passing away quietly.
When I was working with Ram Dass he talked about how being of service to the dying benefited not only the person dying but also the hospice volunteer. I gained so much insight about my own life from my short relationship with Kenneth. According to Ram Dass, “With their help, we can come to see, in the words of the Bhagavad-Gita, that ‘no step is lost on this path…and even a little progress is freedom from fear.’ The reward, the real grace, of conscious service, then, is the opportunity not only to help relieve suffering but to grow in wisdom, experience greater unity, and have a good time while we’re doing it” (p.16). Working with the dying at hospice gave me wisdom, unity, and good times but I would say that Kenneth embodied all three more than anyone else I have ever worked with.
Rita’s Denial
Working in hospice, I have seen various examples of denial affecting both patient and family members. One example that stood out for me more than most was a woman who I’ll call Rita. Rita was a very strong and tough feminist who had founded the nation’s largest nonprofit group for services for women. She was now in her late sixties and diagnosed with untreatable metastasized breast cancer.
Due to the pure pressure of her daughter and close friends, she agreed to move into Zen Hospice Project. Still being reasonable healthy, she said that there was no way that she was going to die from the cancer. This denial seemed to be a pattern because Rita had avoided check ups from her doctor, leading to the cancer being discovered too late for treatment. She told everyone at the hospice that the doctors who told her she was going to die were all wrong. She said that she never lost a battle against anything in her life. Right away she began to boss around volunteers and staff as though they were her employees at a Fortune 500 company. Many volunteers began to avoid her room since she did not believe that she was going to die and she treated them as low-level servants. In Who Dies Stephen Levine writes, “When you let go of control of the universe, when you let go of everything, only the truth remains” (p.194). Rita was not at a point in her life where she could have only the truth remaining even though the end was coming quickly.
I remember once coming into her room to see what she wanted for dinner. Since there were only five bedrooms at Zen Hospice, all the staff and volunteers took turns preparing dinner for the patients. It was the most home-like atmosphere in a hospice I have ever seen. When I asked her what she wanted for dinner, I also asked her how she was feeling. She said she was feeling great and couldn’t wait to get well enough to be released from the hospice. I could see by her facial expression that she was in pain. I told Rita that I heard that she felt that being at Zen Hospice had been a mistake. She told me that she was not going to die from this cancer she had and that she wished to leave Zen Hospice. After a few weeks went by, she began to throw up her food (just one of the many symptoms of advancing cancer) and she became more disrespectful to volunteers and staff. She final got her wish to leave when her daughter gave in and moved her to a convalescent home.
Since then, I have worked in many convalescent homes with dying people. Believe me when I say that patients do not want to die in a convalescent home. In the convalescent homes that I have visited, no one working there will talk to you about dying or give you much individual attention. I often wonder if Rita was able to admit that she was dying, so that she could say goodbye to family and friends. According to Wheelwright (1987), “Jung’s injunction that we should carry on as though we expect to live forever indicates he must have had some inkling that we do go on, and certainly his dreams point that way” (p.40). I feel that Jung’s view is probably correct but also misunderstood. From what I have witness sitting with the dying I have no doubt that there is something after this life ends. I also know that if we live in denial about death, pretending this life goes on forever, we are going to have a unhealthy amount of denial and anger when our time to die is upon us; that is, if we are lucky enough to have a slow dying process that allows us to begin the transitional work we shoved aside. That is why I believe it is important to practice our dying while we are healthy.
Conclusion
Death is one of the hardest topics for humans to talk about but one of the most important. I believe that is why I have chosen to specialize as a therapist in the field of death and dying. I feel the field of death and dying chose me instead of me choosing it. I was lucky enough to grow up with Stephen Levine’s son as a good friend, allowing me great insight into the topic of death and dying. The Levines’ opened doors for me, which allowed me to work at Zen Hospice Project as a death and dying workshop coordinator for Frank Ostaseski and Ram Dass. Through those teachers and by hospice volunteering, I realized how little time people actually talk about the topic of death. A good example of death being a taboo topic is shown in most of the human development books we read in class. Death and dying is given the least amount of attention in the books even though it is probably the most important thing we must prepare for in our life.
In Gail Sheey’s New Passages, I felt the topic of dying was almost avoided completely. Death seemed to be watered down to something that might happen to you in old age if you do not take care of yourself. The fact is we are all going to die, many of us before we hit old age, and how much we prepare for it while we are alive will determine the kind of dying experience we will have at the end. According to Joan Borysenko, “There currently seems to be a notion that if we eat right, exercise, meditate, and use visualization well enough, we will live forever. Obliviously, our health habits do make a difference, but it is well to remember that even the great saints left their bodies—often from heart disease and cancer” (Carlson & Shield, 1989, p.195).
Work Cited
Corbett, Lionel. (1987). Old age and death. In L.C Mahdi, S. Foster, & M. Little, (Eds.), Betwixt & between: Patterns of masculine and feminine initiation. LaSalle, IL: Open Court.
Carlson, R & Shield, B. (Eds.), (1989). Healers on Healing. New York, St. Martins Press.
Carter, B. & McGoldrick, M. (1999). The expanded family life cycle: Individual, family and social perspectives. Boston, MA: Allyn and Bacon.
Dass, R. (1985). How can I help? New York, Alfred A. Knoff.
Levine, S. (2002). Turning toward the mystery. New York: Harper Collins Publishers.
Sheehy, G. (1995). New passages: mapping your life across time. New York: Random House.
Wheelwright, J.H. (1987). Old age and death. In L.C Mahdi, S. Foster, & M. Little , (Eds.), Betwixt & between: Patterns of masculine and feminine initiation. LaSalle, IL: Open Court.