We may not be able to stop someone from dying or suffering pain, but we can still help through the honesty, compassion and presence of mind we bring to the situation. The key, says Buddhist teacher Judy Lief, is working with our own state of mind and attitudes toward death.
In a stucco room in New Mexico, a group of women are gathered. They are awaiting the arrival of Sandra Jishu Holmes, an American Zen Buddhist priest. Jishu had died a sudden and untimely death at the age of fifty-six from a heart attack, and I had traveled from New York to New Mexico to pay my respects. Upon arriving, I was invited by Jishu’s husband, Roshi Bernie Glassman, to join the women who were preparing to receive Jishu’s body.
In the center of the small bedroom is a double bed draped with handmade quilts, and the small group of women crowds the narrow spaces surrounding it. From the adjoining room, chanting rises and falls, while in the bedroom, women wait quietly. On a night table is a bowl of fragrant water and a pile of clean towels and washcloths. A woman playing a sarod quietly sings in the corner.
When Jishu is brought in, she is in a plastic bag on a cart. Gently she is lifted onto the bed and the long zippers are unzipped. Removed from her wrapping, she lies naked and beautifully feminine on the quilts that she loved. At the head of the bed stands Bernie, who is gently stroking her forehead, and at the window whining to be let in is her dog, Muji. The women begin their task, washing the body, dressing it in robes, and preparing it for the funeral ceremony to come. The periodic wringing out of the washcloths adds the music of dripping water.
As I remove the name tag from her toe, I wonder, is this you? Are you still here?
Jishu’s body is cold and stiff but not rigid. As a subtle breeze blows through the room, she appears to be breathing still. I know she is not, but my mind is playing tricks. As I remove the name tag from her toe, I wonder, is this you? Are you still here? The scene of women tending the corpse is both current and ancient. Jishu’s stepdaughter is present, as is her mother. Some of the other women here are friends, and some are fellow Buddhist practitioners and admirers.
Once the body has been washed, it is clothed in Jishu’s Zen teaching robes. Pushing the arms though the sleeves evokes memories of dressing young children to go out and play in the snow. Her mother tenderly brushes her daughter’s hair one last time. Mother and daughter touching, a husband by her side, a group of friends, and now Muji by the bed.
It is not easy in such cramped quarters to lift Jishu’s body into the coffin, a cardboard box, draped with more quilts. Women clamber about the bed awkwardly, take their positions, and with a single heave-ho, smoothly transfer her to the box. Once she is in place, flowers and herbs are added, and the preparation is complete. Nothing needs to be said. Nothing can be said. It is too simple for words.
After the funeral, when I return to New York, I schedule a massage. As the woman’s hands knead my body, I think of the women preparing Jishu’s body, and I am struck by the similarity. The simplicity of touch, the simplicity of the body—living or no longer alive—the simplicity and ordinariness of people caring for one another.
When we encounter death, it is profoundly simple, but as we go about our lives, we lose touch with that simplicity. Simplicity is experience pared down to raw essentials, with nothing added on or removed; therefore, it is without deception. When we have lost touch with ourselves and one another, the simplicity of death can bring us back quite powerfully to what really matters.
If we have a sense of our own death, our own insanity, our own pain, there is no longer any distance between ourselves and others. Instead of coming from afar, we are on common ground.
Simplicity is what links us with other people. It is the ground of connection. We uncover our simplicity only when we let go of the barriers we create to protect ourselves from pain and separate ourselves from one another. How can we help people who are dying if we do not relate to our own death? How can we deal with crazy people if we do not relate with our own insanity? How can we help people who are afraid if we do not understand our own fears? If we separate ourselves from all that, it is difficult to connect with people with any depth. We come in from afar with our professional advice or our latest theory or our this or that and try to fix things up—but it is as if we were communicating across a great divide. However, if we have a sense of our own death, our own insanity, our own pain, there is no longer any distance between ourselves and others. Instead of coming from afar, we are on common ground. If we are as simple and nonjudgmental as possible, and if we work with our own state of mind, we can make a genuine connection with the dying person and the people around him.
Trungpa Rinpoche used the phrase “one death” as a guide for working with people who are dying. That does not mean jumping into the pyre so we burn up together, like widowed brides in India. Instead, it means that the way we can connect with the person who is dying is through our shared experience of loss and death. Prior to the experience of physical death, our life is filled with many little deaths, disruptions, and losses both large and small. The key is to acknowledge those gaps in our experience. If we are aware of the discontinuity in our own lives, we can connect with people who are facing that same discontinuity in a heightened way at the time of death. The ground where we meet one another is unstructured.
You might think you have nothing to offer. You just enter the dying person’s room and feel helpless. Even if you are a doctor or nurse, you cannot necessarily save a person. It’s true. We may not be able to prevent someone from dying or being in pain. Chances are, we have no magical pill to stop either the pain or the suffering that goes with it, so it can be very frustrating. We may wonder, “What do I have to offer? What do I have to give?”—especially if we are not a medical professional, a healer, a priest, or some high Tibetan lama. But in fact, there are many ways we can be of help. Even if there seems to be very little we can do, we can still help people by our presence of mind and by what we project out. We can affect the environment for the better.
Not Handing Out Advice
We could begin by accepting people as they are rather than trying to change them. It is quite common for people who are sick or dying to be bombarded with all sorts of advice. They are magnets for it. People who would not ordinarily go around telling their friends how to conduct their lives suddenly transform into pundits and experts once their friends fall ill. We are so anxious to help that we don’t wait to be asked; we just launch in. And we have all sorts of opinions and criticisms as to how our friends are doing and how they should be handling their situation. It is easier to hide out in those opinions and become judgmental and demanding than to let go of our expectations and ideas and be left with nothing to hang on to. But that nothing-to-hang-on-to point is where we can actually make a connection.
Even if there seems to be very little we can do, we can still help people by our presence of mind and by what we project out. We can affect the environment for the better.
It is not easy to resist this urge to fix things and make them go our way. However, all those demands place a terrible burden on others. They are based on rejection, not acceptance, and they create barriers that separate us from one another. We could work to reverse that pattern by accepting the sick or dying person as she is without trying to make her please us by how she goes about things. That might not sound like much, but it is rare. Especially when someone is sick or in a weakened state, it is common for people to pile in and lay heavy trips on her. So merely to have someone visit who doesn’t immediately start with “You should do this, and you should do that; you should feel this, and you should feel that” is a gift. It is unusual to encounter someone who doesn’t immediately hand out advice.
Seeing the Ordinariness of Death
Beyond that, we can help by not taking the view that death is a big mistake. Daniel Callahan, the medical ethicist, once said, “Despite the casual talk in our culture of death as ‘a part of life,’ I believe that, in reality, the dominant view is actually that of death as an outsider.” In our culture, unfortunately, death is often seen as a mistake, a failure, a breakdown. Something has gone terribly wrong, and everybody feels it. The person dying feels that she has made some big mistake and is disappointing everybody by dying—and the people around her feel angry, as though she had failed them in some way by forcing them to have to deal with this messy and painful situation. There is no recognition of the ordinariness of death, no acceptance of the fact that it happens to everyone.
Death is natural to life. It is not a mistake, sad though it may be. When we encounter death in our lives, for whatever reason, death just happens to be what is going on. It does not help to make a dying person feel guilty that he is dying or that he is doing something wrong. He should not need to apologize to us for dying or try to hide it from us because it is too embarrassing. It is more helpful to respect death as it is—a powerful and challenging experience that is at the same time quite ordinary and to be expected.
Expressing Friendship in the Face of Death
Expressing our friendship is the most simple and powerful way we can help. This may be difficult because, when we know we are losing someone, there may be a tendency to close off. Expressing friendship in the face of death takes incredible gallantry. It means that we are willing to express our love, even though the person we love will not last, we will not last, and the relationship between the two of us will not last. Whether the person we love is around for a minute or a decade, we are willing to love him nonetheless. If a dying person is lucky enough to encounter friendship like that, he will not be held back by that friendship but supported. Instead of feeling mired in neediness, he will feel freed by our affection.
Of course, we may not feel gallant at all; we may feel needy, because we do not want to lose that person—or anyone we care about, for that matter. In an intense situation such as illness or death, every tiny shift of mind is magnified. In the midst of that kind of intensity, it is not easy to deal with our mind as we bounce from one emotional extreme to another. When we see that happening, we need to take a break, regroup, and make a fresh start. We could acknowledge that confusion, accept it, and then let it go.
Whether the person we love is around for a minute or a decade, we are willing to love him nonetheless. If a dying person is lucky enough to encounter friendship like that, he will not be held back by that friendship but supported.
Confusion arises out of our own fear and grasping. As we become more familiar with our own mental extremes, such as through the practice of sitting meditation, we are less likely to be thrown by the intensity of our own thoughts. So when we are overwhelmed in the face of death, and the intensity of our emotions and thoughts begins to build, we recognize what is going on. That familiarity is what enables us to let go of those thoughts and resettle ourselves. We can bring ourselves back to earth.
In an environment of fear, honesty is in short supply. Dying people are frequently and routinely lied to. Often this is done with the best of intentions, such as that we want to cheer them up, we want to make them feel better, we want them not to lose hope. But the result is that dying people notice that they are being monitored. They feel compelled to be careful about what they say so as not to upset the people around them or rock the boat. The atmosphere around dying people is permeated with subtle expectations. There may be a group conspiracy to uphold the pretense that everything is going to be okay, in which everybody in the room knows what is going on, but no one will talk about it. There is this Big Unspoken Fact that nobody is willing to deal with. Everybody is busy dancing around the reality of the situation, and each person is trying to protect everyone else all the time to the point of absurdity. But ultimately, no one is protected. Instead, everyone is uptight and afraid he might slip up and say the wrong thing—including, of course, the person who is dying.
It is important to tell dying people the truth. When possible, we should always let a dying person know that she is dying. Often that is not news to her. We are merely confirming what she already knows. Hiding the truth only makes the whole situation more painful. Most people can tell when they are being lied to, even if they don’t let on. When we lie, it undermines the dying person’s trust, and she no longer knows whom or what to believe. Not only that, but we have taken away her opportunity to absorb what is going on and prepare herself to die.
Communicating skillfully about something as basic and profound as life and death is not easy. As with all communication, without sensitivity and proper timing, nothing you say will be heard. People sometimes take the guideline of telling the truth to dying people as if it were graven in stone, so they march in proclaiming, “It’s important that you recognize right now the fact that you are dying. You’re not relating to this! You’re watching television! Snap out of it!” Just blurting out something like that is not in the least helpful, but people do crazy things like that.
Communication doesn’t work when it comes out of the blue; we must first establish some kind of connection. We can communicate more easily if we understand and accept the various states of mind sick and dying people experience. Those states of mind are apt to be intense, rapidly changing, and not at all what we might hope. There tends to be a lot of messiness around pain and illness. Some people withdraw into themselves; some lose their rationality, seeing visions and hallucinating; others drift in and out of consciousness. People’s mental and emotional states may be altered due to their age, the nature of their illnesses, and their medications. It therefore makes sense to learn something about their symptoms and what they are dealing with physically, so that we can figure out a way to reach them.
It is hard to know how much a sick person is perceiving. According to Tibetan Buddhist teachings, in the transition from life to death, people are a lot more aware than they might appear to be. In that case, our operating assumption should be that they do understand, even though they may not respond in their usual way. People who are very close to death may seem totally unresponsive, but even if someone is just lying there immobile, he may very well be able to hear what we are saying. So we could still say simple things like “I love you” or “I will miss you.” In addition, it is said that a person’s intuitive perception at the point of death is greatly heightened, so nonverbal communication is picked up on extremely easily and quickly. That means that our state of mind and the energy we put out communicate very powerfully at that time—for better or for worse. Given that fact, it is important to try to affect things for the better.
A person who is dealing with illness and physical pain isn’t usually up for long philosophical discussions on the nature of reality. It might be much more communicative to apply a nice, cool washcloth to his forehead or to say a word or two and then be quiet.
If our communication is too complicated, we will not connect. We need to simplify. If we pay attention to how we speak, and how we express ourselves generally, we can learn to get across what we have to say in a few well-chosen words or gestures. Often people are far too complicated. A person who is dealing with illness and physical pain isn’t usually up for long philosophical discussions on the nature of reality. It might be much more communicative to apply a nice, cool washcloth to his forehead or to say a word or two and then be quiet. Just sitting with someone can be the best thing.
Not Freaking Out
Through our behavior and how we manifest, we can either help a person or add to his pain and confusion. The environment we create around the dying person affects him deeply. If the environment becomes too hectic, chaotic and emotionally charged, it can be a real hindrance; and if it is gentle, open, and accepting, it can be a real support. So although it is good to be able to express our natural feelings of grief and sorrow, it is not helpful to act out all over the place because we happen to be freaked out. If we are really losing it, it is better to leave the room for a while than to stay. Afterward, when we are more settled, we can return to the dying person’s room. It is a delicate choice, when to stay and when to leave, and we can help one another with this decision. By knowing when to step out of the room, we can dig into our feelings and express them—and at the same time promote a sane and accommodating atmosphere around the dying person.
Dealing with Pain and Suffering
One of the most difficult things about tending to the sick and dying is the amount of pain and suffering that is involved. Pain can often be treated or moderated by medication, and there is absolutely no reason not to do that unless the dying person himself prefers otherwise. Yet the management of pain is not a simple matter, and both undertreatment and overtreatment are common. Most difficult of all, there are occasionally people who suffer pain so severe that no treatment seems able to alleviate it.
Pain and suffering are not the same thing. By understanding the difference between the two, you can be more clear about where you can help and where you cannot.
On top of that, both the people treating the pain and the people being treated have all sorts of ideas about pain. For instance, patients who are terminally ill may nonetheless still fear the stigma of addiction. People can be very puritanical, thinking that when someone is dying, she shouldn’t have any drugs at all, that she should just deal with everything straight. We may worry that painkilling drugs will dull awareness and advise whoever is dying to do without them. It is easy for us to give advice, since we ourselves are not in pain, but in fact, being in excruciating pain itself dulls awareness. Pain makes it hard for a person to clarify her thoughts and know what is going on. Furthermore, even if a dying person does not use any painkilling drugs, she may still be confused. So there’s nothing wrong with relieving pain. But pain is only one part of the picture—the other is suffering.
Pain and suffering are not the same thing. By understanding the difference between the two, you can be more clear about where you can help and where you cannot. You may be able to reduce someone’s pain with medication, but you are unlikely to find a pill for suffering. Suffering can occur for all sorts of reasons that have nothing to do with physical pain. A person may be suffering because he is afraid to die, or because he is worried about what is going to happen to his family. A person may be suffering because his family is feuding or because of the humiliation of having to be taken care of by other people. Suffering has countless causes.
In working with a person, we will not be able to alleviate her suffering unless we understand its source. Figuring out the cause of someone’s suffering can be a slow and difficult process, but if we do not make the effort to do so, it will be easy to assume one thing when in fact something entirely different is going on. We may have no clue what is causing someone to be upset. As we try this and that to relieve the dying person’s suffering, we find that we are mainly aware of what would bother us. What is really bothering another person could be something totally different from what we expected or what seems most obvious to us.
Developing a sane approach to death and dying depends on being willing to work with a lot of rough edges, both our own and others’. Dying people may be freaked out and unable to deal with their situation at all, raging and fighting and upset. A person who seems to be doing okay one day may the next day suddenly take a turn for the worse—and just when we get used to that, then all at once he takes a turn for the better again. When that happens, we are less and less certain what is really going on, and we begin to lose track of where we stand. We flip-flop continually and find our mind drifting from day to day, or even minute to minute, wondering what is happening. Is he about to die, or is he going to live? Is it a miraculous recovery or a mental trick? Does he have a long time or no time at all? Our mind does somersaults.
In the midst of that confusion, the focus to come back to is just being two simple human beings present together on the shared ground of uncertainty. On that ground, there is room for all sorts of chaos. In our society, we like to manage everything and make it neat and clean and nice. It is tempting to try to micromanage death as well, because we don’t want to deal with our own emotional extremes, nor do we particularly want to deal with the physical messiness of death.
The attempt to smooth death over may be tempting, but it is a trap. The semireligious atmosphere we create becomes a gooey, cloying cocoon. Everything seems peaceful and sweet, but only superficially. If we put pink frosting on a cake full of worms, it may look very pretty, but eventually the worms will start to surface. So creating a peaceful atmosphere artificially by glossing over our fears and suppressing anything unpleasant does not work. That is not truly peaceful; it is avoiding reality. An atmosphere that includes what is raw along with what is beautiful and tender is more disturbing, but it is also more honest. Ultimately, it is more peaceful as well—because there is less that can threaten it, since a certain amount of chaos and disorder is expected and accepted. That kind of peace is palpable and real and not at all artificial.
Dealing with the Politics of Dying
In dealing with death, politics is rampant. It is very rare to be working simply with one other person, one-on-one. Usually there’s a whole collection of people. In addition to medical personnel, there are relatives and friends and people from different backgrounds and understandings who may not agree on anything—whether to stay in the hospital or go home, whether to tell the truth or not, whether to do this ceremony or that. In dealing with all that, it is important to be clearheaded and politically savvy.
The medical establishment has all sorts of rules and regulations, conventions, and group neuroses around the subject of death, and health-care workers may be operating on automatic pilot. So whenever someone is hospitalized, we need to pay attention to what is happening if we want to look out for the dying person’s interests. A dying person may not be able to speak up for herself or have any clout. In that case, practically speaking, she needs a spokesperson who is willing to ask questions: “Wait a minute, why are you doing this procedure? She does not want that done.” In a hospital, even a very good one, it is always advisable to have a friend who is able and willing to deal with the authorities. Otherwise, we will be swept along by the prevailing ethic, whether we agree with it or not. We need to have someone whom we trust to decide when to speak up and when to let things run their course.
Maintaining a Sense of Humor
People don’t usually associate humor with death. Death is supposed to be solemn, just like religion. But humor can be liberating in the face of sickness and death. By humor, I do not mean cracking jokes, although jokes definitely have their place; I mean not taking ourselves too seriously.
We all die: death is a human experience; it is not all that unique. But it is hard to be natural in the presence of death or include it in our lives as we do other experiences. We tend to relegate it to a special category with prescribed roles to play. With that approach, nobody acts like a real human anymore. Instead, those involved are like actors in an imaginary hospital and deathbed scene.
I had a friend who was dying of breast cancer that had spread throughout her body. Over the course of her last year, she had many close calls. People would gather around to pay their final respects, but she would always bounce back. What I noticed is that when I went to see her, I would put on what I assumed to be a proper demeanor for paying final respects. I am not sure how I cooked up the idea of what that demeanor should be; maybe from the movies. Since my friend kept not dying, I was eventually able to see what I was doing. The mask I was putting on was completely phony. I had no humor.
It does not matter whether a person is gravely sick or the victim of some dreadful trauma or how close to death he is—he is still alive. He doesn’t want to be suddenly cut off from regular life and see everyone around him act like visitors to a funeral home.
Thanks to the erratic course of my friend’s illness, by the time she did die, I was able to walk into her room with my humor and humanity intact. I had seen through the contrivances of my imagined proper deathbed scene, and at that point, a glimmer of humor broke through. Something lifted. I was able to be more present and also more ordinary, more raw in the presence of death. I have always considered that insight a great gift my dying friend gave me.
When we lose our humor, our whole demeanor changes—our tone of voice, how we move and carry ourselves, our facial expressions. This may sound strange, but it happens. We may be trying to help, but when we approach sick or dying people in that way, they do not feel better; they feel weird. They pick up on the fact that the people around them are acting strangely, walking on eggshells, oddly quiet, trying not to disturb or upset anyone. It is sad, because without humor, there is no room for ordinary interaction. Everything is “heavy.” We can’t have a normal conversation with someone anymore because all we can focus on is his death. “Forget about wanting to know whether Cleveland or New York won; you should be beyond all that now.” We want no frivolity; we want profound communication only. But that is not all that helpful—in fact, it is insulting.
It does not matter whether a person is gravely sick or the victim of some dreadful trauma or how close to death he is—he is still alive. He doesn’t want to be suddenly cut off from regular life and see everyone around him act like visitors to a funeral home.
Sick and dying people do not exist on a separate plane from the rest of us. I think we try to put them in a special category because it distances us from the experience of sickness and death. It is a way of protecting ourselves by focusing on how different they are from us rather than on how similar we are. In contrast, humor maintains a sense of ordinary life and simple human contact.
Our understanding, behavior, attitudes, and emotions all have an effect on the environment around us. Handing out advice, letting our mind run wild, creating an atmosphere of lies and deception, giving up on communication, being too complicated, chattering nervously, confusing pain and suffering, freaking out, micromanaging, smoothing things over, giving in to politics and bureaucracy, maintaining an atmosphere of heavy-handed solemnity, denying the ordinariness of death—these are just a few of the many ways we affect the environment for the worse.
But it is also possible to affect the environment for the better. We could look into the harmful patterns to which we fall prey and cultivate our ability to be simpler, less judgmental, and more aware of our mental and emotional state moment to moment. Then, as these obstacles arise, we might recognize them and be able to let them go.
This article is adapted from Judith Lief’s book, Making Friends with Death: A Buddhist Guide to Mortality, available from Shambhala Publications. ©2000 Judith L. Lief. Reprinted with permission of Shambhala Publications.