Many people think that if they came down with a fatal illness, they’d react by grabbing a giant bottle of whiskey and an attractive sexual partner and spending their remaining time at the nearest warm beach. But in working with thousands of dying people, we’ve found that virtually no one does that.
What people do is to begin looking into their own hearts and into the eyes of those with whom they share their lives. And all too often they find that these aren’t places they’ve looked very deeply before.
We just spend some time with Fred, a 54-year old bus driver for Greyhound. After Fred’s diagnosis of terminal cancer, he and his family decided that he would prefer to die at home.
Because of his work, Fred had spent most of his married life away from home. He’d never had a very close relationship with his children. He and his wife had dealt with most major family difficulties — including some severe sexual problems — by totally ignoring them. Fred had always felt he needed to keep up a macho image, and his wife felt trapped in her role as wife and mother. His children only used the house as a place to eat and sleep.
But as his disease progressed, Fred reached the point where he could no longer play his accustomed roles. He couldn’t be a tough guy any more. He had a lot of pain, and all the members of his family has to work like hell to take care of him. His teenage son — whom he formerly hardly spoke to — was now giving him baths and rubbing his back. His daughter would read to him when he had trouble sleeping.
As Fred’s cancer progressed, he and his family broke through one barrier after another. It wasn’t easy, but through it all the family members drew closer and closer. Everyone in the house learned to trust and confide in each other. Neighbors who came to visit would tell us, “I expected to find a house of death. Instead I find a house of life and love. This family has never been as close as they are now.”
In observing the changes in Fred’s family, we were reminded of the thousands of Brahma bulls that wander around India. They’re considered sacred. If two men are trying to kill each other with knives, and a Brahma bull walks between them, they’ll pull their knives away, because they mustn’t scratch the bull.
Dying people are like Brahma bulls. In their presence, so many of our petty hassles are simply forgotten. We realize what’s impermanent, and what’s of permanent value.
For most of the people we’ve worked with, the diagnosis of a fatal disease comes as a frightening experience. One of their most frequent comments is: “I feel like I’ve wasted my life.” So much of who they are has been held back. So much of their precious time was spent running away from their fears, waiting for the future, or remembering the past.
So little of their lives was spent actually living. Although they’ve been alive 40, 60 or 80 years, it suddenly feels to them as if they’ve hardly lived at all. They’ve been so buy striving for security and trying to live up to one ideal or another that they forgot to taste and savor the texture of their lives. They were so busy making a home, building their career, becoming solid citizens, that they forgot to live.
We shared some time recently with Daren, a 38-year-old Los Angeles man dying from a degenerative nerve disease. Two years ago Daren was handsome, successful, and vibrantly health. He had reached the pinnacle of professional success. he was a singer, dancer, and virtuoso guitarist, and was greatly sought after by many for the major Hollywood studios. He had a wife and two children, a lovely home, and ran five miles a day.
Today Daren is strapped to a wheelchair, unable to support his own body’s weight. His lungs are so weak that he must consciously draw in enough air to make his vocal cords work. He can no long move his arms, legs or body. He needs help to go to the bathroom. His flesh is slowly melting away from his bones.
At first Daren was in agony because he couldn’t play, couldn’t dance, couldn’t earn money, couldn’t drive his new Mercedes, couldn’t make love — in short, he could no longer live up to his models of who the thought he should be. But after a time, he began to see that it was not his illness that was the problem.
“It was those damn models,” he realized. “Those models were always a hassle for me. They’re like balloons with holes in them — I’ve had to keep puffing and puffing all the time to keep them from collapsing. They’re not really who I am.” And gradually he’s been able to let go of his identification with his models.
One day we were sitting and talking and he said to us, ‘You know, I’ve never felt so alive in my whole life. I can see now how all the things I used to do to ‘be somebody’ actually separated me from really being alive. For all my outward success, my life back then was just a sort of busy, numb dullness.”
He laughed and shook his head. “We’re such fools, aren’t we? We spend so much time polishing our personalities, strengthening our bodies, keeping up our social positions, trying to achieve this and that. We make such serious business of it all. But now that I can no longer do the things I thought were so important, I have so much love for so many things. I’m discovering a place inside I’d never looked at, never knew. None of the praise I received in the world brought me half the satisfaction I experience right now from just being.”
Few Well Prepared for Death
Very few of the people we see are well prepared for their deaths, and no wonder. We are taught to keep thoughts of death out of our consciousness, ignore illness, to do our best to disguise the natural changes of aging. We grow up believing — and teaching our children — that we are not supposed to suffer. We are not supposed to grow old. We are not supposed to experience loss or pain.
We end up carrying a heavy load — a great deal of fear of illness and death. When Ondrea had cancer, people were afraid to visit her. They were afraid to touch her. And if they did come, they were terrified.
The Pepsi Generation
One of the things we can learn from the dying is simply that it’s all right to die. It’s all right to be ill. It’s OK to be in pain. Sometimes we’ll be working with a group of cancer patients, we’ll say, “You know, it’s OK that you’re suffering. It’s OK to suffer.” And there’ll be a lot of shocked looks, like it has never occurred to them that it really could be OK.
It’s the American way to be hale and hearty, and it’s very difficult for us to accept the fact that illness and death are a normal part of life. Everyone in the Pepsi generation must grow old and suffer and die just like all previous generations. But our conditioning makes it very hard to accept that.
It’s hard for us to accept situations in which we are unable to live up to our models of what’s OK. Elizabeth Kubler-Ross used to say that someday she would like to write a book titled I’m Not OK and You’re Not OK and That’s OK.
We learn to work hard to be OK — whatever that means for us. The dying can teach us a great deal about the ways we learn to distort ourselves, to diminish ourselves, to reshape ourselves in order to conform to that OK model, how we are raised to be constantly posturing, constantly inventing an acceptable reality.
A Mosaic of Awareness
The ebb and flow of our awareness is like a complex mosaic made up of many tiles. But because we learn that some of those tiles — parts of ourselves — are considered unacceptable, we begin, at a very early age, to pick out — or cover up — the offending tiles: “Oh, no, I’m not supposed to be angry,” so we take that tile away. “That part of my mind is too crazy for anybody to see.” So we cover it up. “Oh, God, I don’t want anybody to see my hatred. Or my jealousy. Or my confusion. Or my greed. Or my envy. That self-hatred, that guilt — that can’t be who I really am. That’s bad. That’s unacceptable. That’s crazy. That’s neurotic.” So out they go, until what is left is a pale caricature of who we really are. But the dying tell us that is who we really are — that continually changing flow of thoughts, those conflicts in values, that continual confusion and not knowing. This is our life.
Accepting “Unacceptable” Feelings
The dying teach us that because of our efforts to drive those “unacceptable” feelings out of consciousness, we end up wondering if we have ever really lived. They teach that it is better to sit quietly with our unwanted states of mind, to accept the pain, accept the waves of unfashionable feelings, to accept our own confusion — rather than to let these painful events drive us out of awareness, into defenses that pull us away from life.
Perhaps the greatest gift the dying have to offer is the realization that we need not wait until we receive a terminal diagnosis to begin to relax our attachments to our images of who we think we should be. How much better, they tell us, to realize that we are not our fears, not our confusion, not our defenses. That it is possible to let those states of mind flow through us without identifying with them, without holding onto to them, simply doing our best to stay open to awareness.
They teach us that it is possible to let whatever needs to happen, happen — without being driven into the life-denying reactions our fears would lead us to. It is possible to experience it all, to be threatened by nothing, to withdraw from nothing, not even death.
Learning to be Substantial
We are taught to make ourselves substantial, to take on certain roles and play them with utmost seriousness, to be responsible members of society. The dying teach us that we must live more lightly, take ourselves less seriously, accept our own impermanence, our own no-knowing. Not to harden against life, but to soften into it. They teach us that real growth comes from coming to the edge of one’s model, then letting that model go, and seeing what comes next. The dying can teach us that it’s possible not to be “something” but just to be.
Thousands of years of meditation practice teach us that thinking in terms of “the mind” rather than “my mind” helps clarify what’s really happening. When you look at your flow of awareness as “my mind,” there’s confusion, because if it’s your mind, then you must be responsible for what’s in it. But when we look closely at our thought processes, we see that much of what arises in the mind is actually uninvited. We don’t invite guilt. We don’t invite anger. They come by themselves.
The Worst Possible Insult
Try this experiment: Think of the worst possible insult you can imagine, then suppose that you arrive home to find your living space broken into and that message scrawled across your wall. You would experience — involuntarily — a state of mind that you did not invite, expect, or want. Whose mind did that?
The mind is constantly rating us on our behavior, constantly comparing things as they are to imagined models of things “as they should be.” The mind finds everything wanting: us, others, and the world. It is never satisfied for long. Identification with the mind is the very definition of suffering.
To the extent that we identify with “my mind,” our lives will be in constant turmoil. We will be jerked up or down by any tray thought that drifts across our mind.
The dying teach us that to be able to accept ourselves in our true complexity, we must, without judgement, accept the craziness of the mind itself — accept it without mistaking it for who we really are.
Just Sleeping, Just Eating
For those of us who live in the mind, life is 99 percent an after-thought. It isn’t tasting, touching, smelling, loving, being alive; it’s mostly the mind thinking about what we are doing. An action occurs, and a moment later we think of ourselves as acting. We see a bird, and a moment later we are no longer seeing the bird, but thinking of ourselves looking at a bird.
At other times we live in fantasies of the future or the past. If we start to experience our flow of consciousness as just the mind “doing its thing,” we find ourselves relating more directly to the world. It’s as though the mind, the “I” disappears, and there is just smelling, just dancing, just seeing the sunset, just sleeping, just eating our food, just being with someone we love.
The dying teach us that happiness comes from learning to let go of the things that cause suffering. Though they’ve lost much that they desired, they’ve found much that is of even greater importance. Through their investigation of suffering, they have gotten in touch with something deeper.
The dying teach that it is possible to let go of wanting, that desire is only a cloud that obscures our real nature. We see that our true sources of satisfaction lie in what we already have, and have always had: simple awareness.
Before we began working with the dying, we used to think of those who had not suffered losses as the truly fortunate. No more. We feel sorry for them now.
These well-intentioned people who have, by luck or planning, isolated themselves so well from life may feel perfectly secure in their possessions and their loved ones. They may feel that the whole business of dying has nothing to do with them. They may feel that they have what they want in the world, that they are safe from the flow of change. But we can assure you that for them, the inevitable loss of possessions, the inevitable loss of loved ones, will be the most difficult.
The dying teach us that the real tragedy is not the loss of possessions, not even the loss of loved ones. The real tragedy is losing our connection with humanness, with compassion, with kindness, with forgiveness — for ourselves and those about us — closing off to life.
In their efforts to find a safe place, to avoid the inevitable suffering of life, these seemingly safe, secure people have merely saved up their suffering. They have put off their pain. They have carried it around without realizing it. And, in the meantime, they have piddled their lives away maintaining their defenses. We have come to feel deeply sorry for such people, because they will experience death with the greatest horror.
Dying at Home
In a recent survey, four out of five people said they would prefer to die at home, yet in practice, four out of five people die in institutions. To die at home is to die in the midst of life, in the midst of love. Many of the people we have taken home to die have found they needed less pain medication because of the support and relaxation available in the home environment.
Many have said in the last weeks of a loved one’s dying in a hospital: “I wish I could do more.” We always think to ourselves, “Take them home to die and don’t worry, you will!”
Giving a loved one round-the-clock support may draw on energy reserves long unexplored, while feeding some place deeper than bodily fatigue. To bring loved ones home to die is like accompanying them on their last pilgrimage. There is no experience more intimate. To share that time with another, to encourage a loved one to let go gently while we ourselves practice what we preach, can bring beings together as no other situation can.
Here are a few things that can make the experience easier:
- A cassette recorder so the person can listen to a variety of music and guided meditations.
- A bedside bell so the person can feel in contact and summon help.
- Plastic bedpans, which aren’t as cold as metal ones.
- Daily baths, for human contact and protection against bedsores.
- Massage for decreasing tension and anxiety while deepening contact.
- Don’t force someone to eat. You are sharing an openness and ease with what is.
If the person wishes not to eat, so be it.
- A blender is useful when one does not wish to take in too much at a time.
- A hot plate or plug-in teapot in the person’s room lets you have a cup of tea or light snack without having to leave the room.
- Water and juice should always be available.
- A hospital bed with side rails is convenient and comfortable, but many prefer to die in their own beds, and would rather use a foam wedge and a few extra pillows.
- Pain medications should be given as the person wishes. Don’t push your own ideas of how they should work with pain.
- The best place for the bed may be in the living room, near the window. This lets the person maintain contact with the familiar.
- It is not uncommon for people who are dying to feel that their illness may be a punishment for past actions. Supportive measures that can help dissolve the guilt
should be encouraged.
- You may wish to call the Visiting Nurses’ Association in your town for further information and support.
Experiences That Will Give You Great Insight into Aging, Illness and Dying
- Volunteer at a Nursing Home.
- Volunteer at a Hospice.
People who’ve done either of the above — even if it’s only for one week — invariably have a memorable experience. You’ll see how your body is going to grow old some day, and all that entails — how difficult it can be just to sit up, just to life your fork and eat, just to walk, just to sit in a chair. You’ll see how, for the elderly, the being inside has not changed a bit since they were 15. Highly recommended and unforgettable.
We encourage the people we work with to adopt some kind of practice, one that suits their own life and preferences, but ideally a daily practice, one they can stay with, something to which they give first priority, something they do at a regular time, and do even if they don’t feel like it on that particular day.
It might be meditation or yoga, tai chi, running, silent prayer, massage, playing an instrument, karate, judo, writing in a psychological diary, breathing exercises, or the practice of an art or craft —whatever is right for their temperament and their preferences. Something that will encourage them to pay attention. We find that this kind of a daily practice is perhaps the most powerful tool for building awareness.
Imagine that the time has now come when the energy in your body is no longer sufficient to allow you to participate in the world. You can no longer continue your former work, or earn the money you used to earn. You are lying in bed wit you new car parked in the driveway outside your window. You realize that you will never drive that car again. You see your closet. You know that you will never wear your wardrobe again. your children play in the next room. You are too weak to get up and join them.
In the kitchen, your mate cooks supper; you will have to be spoon-fed because you are too weak to feed yourself. You want to get up to help, but it is no longer possible. You sense that in the not too distant future, your mate will be making love to someone else, that in a short time someone else will be raising your children.
You must let go of every model of yourself you have ever created — wife, husband, father, mother, lover, breadwinner, parent, teacher, doctor, nurse, businessperson. Those models are no longer available for you . Can you see how you might begin to wonder, “Who am I? Who is it lying here in this bed? Who is dying? Who is it that lived?”
For those who remain attached to how it used to be, to how they thought it would always be, dying can be hell. But dying doesn’t have to be hell. It can be a remarkable opportunity for awakening.
Bring into your heart the image of someone for whom you feel much resentment. Take a moment to feel that person right there in the center of your chest.
And in your heart, say to that person, “For anything you may have done that caused me pain, anything you did either intentionally or unintentionally, through your thoughts, words, or actions, I forgive you.”
Slowly allow that person to settle into your heart. No force, just opening to them at your own pace. Say to them, “I forgive you.” Gently, gently open to them. If it hurts, let it hurt. Begin to relax the iron grip of your resentment, to let go of that incredible anger. Say to them “I forgive you.” And allow them to be forgiven.
Now bring into your heart the image of someone you wish to ask for forgiveness. Say to them, “For anything I may have done that caused you pain, my thoughts, my actions, my words, I ask for your forgiveness. For all those words that were said out of forgetfulness or fear or confusion, I ask your forgiveness.”
Don’t allow any resentment you may hold for yourself to block your reception of that forgiveness. Let your heart soften to it. Allow yourself to be forgiven. Open to the possibility of forgiveness. Holding them in your heart, say to them, “For whatever I may have done that caused you pain, I ask your forgiveness.”
Now bring an image of yourself into your heart, floating at the center of your chest. Bring yourself into your heart, and using your own first name, say to yourself, “For all that you have done in forgetfulness and fear and confusion, for all the words and thoughts and actions that may have caused pain to anyone, I forgive you.”
Open to the possibility of self-forgiveness. Let go of all the bitterness, the hardness, the judgement of yourself.
Make room in your heart for yourself. Say “I forgive you” to you.
Like Worn-out Clothing
We have seen people experiencing the same falling away of the body, the same inability to be the individual they thought they were, who are able to leave their old roles and duties behind like so much worn-out clothing. As their bodies grow weaker, their spirits and their participation in the moment grow stronger and stronger, until their old roles and old masks are seen as the bars of a cage, and they experience a joyful release from the part of their life that was made up of models and ideals of how they were supposed to be.
We have seen these remarkable people flow wholeheartedly into the vastness of what is, no longer kept captive by their models of the world. They see everything as present in each moment. It seems that all blocks to their perceptions are gone. They see how identifying with fantasies of the future and dreams of the past has kept them in prison for their whole lives. As one spiritual teacher said shortly before his death, “Today I am released from jail.”
The Work of the Dying
It is from these remarkable people that we have learned that the work of the dying is to let go of self-protective control. To open, to live fully in the present moment, to accept the richness of each moment with an open heart, with a mind that does not cling to models.
These people are able to open up to an appreciation of all that is, beyond life, beyond death. They realize that they don’t have to do or be anything to be who they really are. They have escaped from the tyranny of the mind, the tyranny of models and shoulds and musts.
We see them touch the real. We see them become part of what is. We see them let go of wanting things to be any other way.
Those who are able to open into the experience of dying are the most open-hearted, clear-minded people we know. If we might share a composite of what we hear them say, it would go something like this: “It’s strange, but I’ve never been so happy in my life. I don’t really know who I am, but it doesn’t matter, because no matter who I think I am, I keep turning to to be something else.
“My knowing has always blocked my understanding, but now I am full of not-knowing, vulnerable, open. I had to lose it all to see how little of it was worth having. Somehow there is much more to me than I had ever imagined.”
These people die in wholeness, without struggle. They seem to simply evaporate out of their bodies. Their death is like the rain falling gently back into the ocean.
Our best wish and hope for ourselves, our friends and family, and for you, is that we might, each in our own way, follow their example.