I wrote about aging in a prior Dharma Byte, as I can testify to knowing something about it on a personal level, and they say to write what you know. As aging, sickness and dying are the three horsemen of suffering (S. dukkha), according to Buddhism, I thought I should follow by saying something about my understanding of the Zen view of sickness and dying, as well. I have some experience with being ill, as we all do, but will attempt to treat the subject in its larger interpretation in Buddhism, but at a later time. As I am still alive, I cannot claim to have similar experience with dying, except in the context of rebirth, which gets into an extremely fuzzy area of logic. And of course I have had loved ones and friends who were close to me die, as have we all. So I think I will approach the subject from that perspective, fully aware that eventually I will have the opportunity to undergo my own death, first-hand.
My brother — whom I always regarded as my psychic twin, separated at birth by four years minus two weeks — recently took a turn for the worst physically, after several years of ups and downs in his health, triggered by critical incidents that accelerated his process of aging. Well beyond the three score and ten that had been average life expectancy for some time, and long before the advent of extreme measures of prolonging life, he had survived one of his two wives, and one of his four sons, both lost to terminal illness. And he has recovered from some severe and life-threatening events, such as broken bones from falls, and stroke, the details of which are not important here.
What is important, I think, is the process I observed during this most recent reversal, which is the last he will suffer, as he has been taken off of life support and is in what is called “comfort care,” in which the objective is to keep him as comfortable as possible, while the natural process of dying takes place. This is also his conscious choice. None of us knew how long it would take. One woman lasted 21 days, according to the doctor.
The story of Buddha’s death is similarly a protracted experience, to which the famous images of him lying on his side pay tribute. I have it on personal testimony that Katagiri’s death was characterized by a long, drawn-out drifting in and out of consciousness, what the Tibetans regard as transiting through the six “bardos,” or intermediate states, I believe.
As I am continuing writing after having returned from the vigil, I am thinking that my only brother may have already passed from this world to the next, the light of this world having faded for him, as we chant in the memorial service. But he may still be lingering, as he has for over a week now, without any fluids or food. Life is tenacious. At this stage, we are faced with the anguish of wanting a love one to die for their own sake, when we would really want them to live happily if possible. Sometimes “may all beings be happy” means letting them die. He finally died this Wednesday, at 2:00 in the afternoon.
The next world, for Buddhists, is not heaven or hell, but rebirth in this world. During the days and nights that I sat in vigil with by brother, I read selected passages from “The Art of Just Sitting” that we are studying this period on the Skype conferences. Some of them are very pertinent, having to do with the emptiness of the body, and the true mind that is not dependent upon it. This does not, however, imply a soul. Be careful on this point. Early on in the piece, which has a question-and-answer format, giving it a sense of spontaneity in real time, Master Dayi Daoxin quotes ancient texts, saying:
“The sea of all karmic hindrances totally arises from false thinking. Those who desire to repent should sit upright and contemplate true reality.”
He goes on to comment that:
If one continuously meditates on Buddha thought after thought, suddenly there will be clarity and serenity, and still further not even an object of thought.
Then another quote:
“No object of thought means to be thinking on Buddha.”
So this is not thinking about an image of Buddha, but contemplating reality, which is our buddha-nature. And more:
The mind that is “thinking on Buddha” is called thinking on no object. Apart from mind there is no Buddha at all. Apart from Buddha there is no mind at all. Thinking on Buddha is identical to the thinking mind. To seek the mind means to seek for the Buddha. Why is this? Consciousness is without form. The Buddha lacks any outer appearance. When you understand this truth it is identical to calming the mind. If you always are thinking on Buddha, grasping [onto externals] does not arise, [and everything] disappears and is without form, and thinking is impartial without [false] discrimination. To enter into this state, the mind that is thinking on Buddha disappears, and further it is not even necessary to indicate [the mind as Buddha]…When the mind is impartial like this, without fail it is made clear and pure and always appears in front of you so that the various conditions are not able to become obstructive… When one stays in this unified mind, all bondage and illusion spontaneously disappear.
So I think you can see why I felt this passage (and others in this same, marvelous teaching) to be especially pertinent to someone on their death bed. My brother stayed calm, and had no fear, though I cannot claim that it was because of my reading to him.
What is important about the drawn-out process of dying of “natural causes” is, first of all, it is one that we all may face, unless we die of sudden misfortune, intentional or accidental. It is also important to know that the process of dying from natural causes is largely the same, or apparently follows similar stages, for nearly everyone. As such, the opportunity to be present and witness it is a great privilege, both from the perspective of the bond that we have with the loved one, and the fact that we will most likely have our own turn to go through it in the future. As such, attending upon the dying amounts to a profound training in the causes and conditions of our existence, which is fundamental to Zen’s world view.
This training aspect of witnessing hospice work begins with our own understandable resistance to sharing the progress of someone else’s death, just as training in Zen meditation begins with a lot of resistance. Both involve physical, mental and emotional resistance, not to mention that from social barriers in this society. In spite of the morbid fascination with death exhibited in so many movies and video games, most people would rather not confront death, or any other form of extreme discomfort, in reality. Woody Allen famously remarked that he has no problem with dying; he just doesn’t want to be there when it happens. Most of us would concur. And many people these days are not, being drugged into unconsciousness.
But Zen encourages us to be there when it happens, and not only to ourselves, but for others. Being there when we die means being fully present, if possible, so the notion of administering drugs to sedate us through the process is not so attractive, from a Zen perspective. In fact, when we sit in meditation, we are fully aware of the Zen admonishment to “die on the cushion.” We do not take this lightly, nor do we soften it by interpreting the meaning of dying to be metaphorical. Our approach in Zen emphasizes experience-based learning, or reality-based truth, and so we must take a more literal approach to this phrase. Dying on the cushion must be equivalent to the actual experience of dying. If this comes to pass in our meditation, it may be possible for us to confront our own decline and demise with equanimity, the comfort or confidence that comes from having been there and done that. This was apparently the case for many Zen masters who, when the time approached, recognized the onset to the symptoms, and sat down and died. And the history of Zen shows that monks and nuns would compete to attend the dying and to be near death as part of their training. But our culture does not seem to be ready for this willing embrace of mortally, in spite of its inevitability. Some faiths are actually based on the dearly-held belief that we can actually survive death, in the form of an eternal soul. This is understandable in the face of the unknown. But as Master Huineng was said to have remarked, in The Platform Sutra, regarding the mourning of most of his students when he announced his impending death, he would also be anguished and fearful if he did not know where he was going. But he did know for sure.
A near-paranoid relationship to the notion and reality of death is revealed in the many laugh-lines about it in standup comic routines. The history of Zen also records some funny stories, such as that of the monk who stood on his head and died, when the time arrived. Zen humor may be taken to be less about fear of he unknown, and thus more genuinely self-effacing, less whistling by the graveyard, as it is about the death of the person who is making light of it. And, in fact, death is emphasized in Zen as the necessary complement to life, so that the non-dualistic slant of the teaching almost requires that death be confronted, not only in the long term, but in the present moment. An old Zen saying says something like, “Stamp life-and-death on your forehead and never let it out of your mind for an instant.” Again, not because Zen has a morbid obsession, based on fear; but because there is no life without death. Life takes its meaning from death, the proof being that our death would have an entirely different meaning to us, if no one ever died of natural causes. But immortality, which we seem to yearn for, would not necessarily be a pretty picture, either, given all the other constraints of biological existence which we would still face as a person who has lived for centuries or millennia. Having one’s consciousness downloaded into an intelligent machine likewise presents limitations, in spite of the fantasies of science fiction.
In the present societal setting, all around the person who is dying, there unfolds a passion play of relatives, friends and professional care-givers. The life-and-death drama engenders a great many variations in attitude and behaviors, which can offer insights into the meaning and mystery of death, at least on a societal level, if we have the ability to observe dispassionately, which is difficult to impossible, when we are grieving. Even animals, from elephants to dogs, show signs of grieving, according to those who study them. For us, there arises a kind of anguish, or angst, probably stemming from the helplessness that all parties to the tragedy feel, including the deathbed person; but perhaps to a lesser degree for them, than for their loved ones. The one who is dying can, after all, do something about it; while the effectiveness of the onlookers is limited.
And to be on the sidelines of the event can feel a bit ghoulish, like rubberneckers at a crash site on the expressway. We also tend to feel a tinge of guilt, known as survivor’s syndrome, as if we are somehow responsible for the suffering of the dying. Occasionally, even at funerals, where the agony of the deceased is over, tension erupts in emotional outbursts, which can be contagious. Grief can quickly morph into anger, often directed at others, whether family or strangers. You can sense, in the careful attitudes and expressions of the professionals, a kind of anticipation that they are on the front line, and may catch the brunt of the distress and frustration of their guests. Members of the family can turn on each other as well, especially where there are long-running, unresolved conflicts that may or may not be directly related to the dying person. The unrelenting stress seems to act as the last straw, breaking the back of compassion and cohesion. Additionally, end-of-life decisions are freighted with the weight of economic considerations.
When it became clear that medical procedures would no longer be helpful or effective, and the hospital no longer the appropriate venue for his care, at least according to Medicare, we moved my brother to a hospice facility. Like many, the one recommended by hospital staff is faith-based (Christian), portending potential for conflict with my less-than-doctrinaire extended family. But I was pleasantly surprised to find that the pamphlets they provided, entitled “Gone From My Sight” and “The Eleventh Hour,” do a remarkable job of clarifying what to expect during the early and late stages of dying, without any sectarian overlay of beliefs, or doctrine. Interestingly, it begins with a point very close to the Buddhist view — that birth and death are essentially the same phenomenon.
Citing the familiar experience of going through labor, the author makes the point that both the birthing process and the dying process involve a period of labor, in other words, being in some degree of agony (my phrase), or, traditionally for prolonged death, passion; as in “the passion of Christ.” As the manual points out, birth itself may be regarded as a kind of death — i.e. the death of what preceded the birth; and death also a kind of birth — of whatever follows death. This even-handed analysis I found quite refreshing, in a presumably conservative, Christian care facility, here in the deep south.
The author did not go on to make the point, as I often do, that seen in this way, it seems at least odd, if not contradictory, that we tend to celebrate birth, but mourn death, to such an extreme. If they are essentially the same transition, this usual bipolar reaction makes little or no sense, except of course that in the former, we are gaining a new member of our family; and in the latter, we are losing our loved one. But some maintain that a good deal of the grief we suffer at the passing of others is actually masking the fear and uncertainty that we feel for ourselves. For the individual, birth is surely just as frightening and painful as natural death, if not more so. You may make the argument that a newborn does not feel pain, owing to the primitive state of the nervous system. We do not readily remember the trauma of birth, and no one has ever reliably reported the pain of death itself, except for recovered near-death testimonials that suggest the opposite. Most people fear the pain of the process of dying, which these days, in our standard end-of-life protocols, is largely assuaged by morphine and other pain- and anxiety-suppressors.
The booklet also suggests what kinds of actions or statements are deemed to be appropriate, or inappropriate, both in supporting the dying, and in maintaining harmony within the coterie of family and friends in attendance. I found the personnel at both the hospital and the hospice, two different locations, to be professional and very empathetic in this regard. But I sympathize with their particular form of suffering — attending on the dying, the grieving, and the bereaved, on a daily basis. I think they may be considered bodhisattvas who do not know they are bodhisattvas.
At the hospital, which is the largest in the state capital, the staff is much larger, though not specialists in palliative or comfort care. And because the hospital is such a huge organization, I could see that staff members can’t help but be overwhelmed by the environment, with its ocean of suffering. The hospice, by contrast, has room for only twelve patients at a time, though the neighborhood is home to many others of similar kind, as a brief Internet search revealed. So, interestingly, our society establishes treatment centers on a truly massive, centralized scale, for those members for whom there is some hope of survival. For those for whom all hope is gone, multiple smaller, more intimate settings is the norm. It may be that the form correlates to the scale of the demand, but I think the difference is largely driven by a felt need for a more intimate, private environment for the intimate process of dying, and intended as much for the comfort of the families and staff as for the dying. We all want to die at home, supposedly.
This experience made me recall my mother’s last years, moving into assisted living toward the end of her long life; she died at 94 years of age. Another long story, but the relationship to my brother’s experience reveals an underlying pattern, I think. Setting aside aspects of funding — and the health insurance mess, as well as political and other issues, all of which enjoy a surfeit of coverage in the public media — a broad pattern seems to emerge.
My brother’s progeny is typical of today’s exploded nuclear family. Among the visitors to the bedside were his granddaughter, about two years old, the daughter of his older living son and his wife, with whom he had been living during the last couple of years. Her father is one of three surviving sons, ranging in age from 30- to 50-somethings, all married with young children. The other two had come from Texas and New York. My brother’s only other granddaughter, the 17-year-old daughter of his oldest son who had died some years earlier, had also flown in from Puerto Rico.
The newest granddaughter is, at her age, also subject to intensive care 24 hours a day, 7 days a week, given by her working parents, and a day care center, along with sympathetic relatives and friends of her parents. The parallels between how we care for the very young and the very old were on display in stark relief, moving from the hospice to the older son’s home, where we all stayed, and back to hospice each day.
I think largely in images, these circumstances forming an overview, a kind of uber-pattern to our lives, which I am sure is not original to me. In the beginning, my brother, my mother, and any other human being, is born into the (hopefully) loving care and comfort of their family. At first, they may even share a bed with their parents, or, basically, live in a crib, where they are relatively safe. Eventually, as they mature, children spend more and more time out of their crib, exploring the larger confines of their family home. Thus, they progress from relative isolation to increased participation, through assimilation into the social life of the family, the larger community and culture. Of course, there are conflicts along the way, increasing the threats to their safety, most notably in the rebellious teen years of self-individuation; but conflict may emerge at any time of extraordinary stress.
As a professional designer, and trained in consumer research for new product development, I have participated in many studies and programs addressing the home environment as well as commercial spaces. In the conventional Western home, there are usually separate rooms for the different functions of household life, which are conceived of as private, or as public, in function. The former includes master bedrooms and baths, dressing rooms and some of the auxiliary spaces, such as closets, but there are overlaps such as a coat closet for guests, for example. Public spaces include the now-outmoded parlor, the living room, dining room, recreation room (replaced by game rooms and home theaters, and online gaming in the digital age), and to a less obvious extent the kitchen, shared restrooms, and so on. And with miniaturization and mobility of media, the need for environmental-scale recreation and learning has diminished, placing less stress on environments for large spaces.
But within all the complexity there is a simple arc of personal history. As a general rule, we initially inhabit a limited space, confined to our baby bed and crib. Then our environmental scope expands, step-by-step, to include the whole house; and finally, the outside world. As we age, we begin to roll this pattern back, downsizing as we as couples become empty-nesters (with notable exceptions, amongst the wealthy and the vestiges of royalty, for instance). We increasingly have less and less need for multiple private and public spaces, because our circle of associates, and our needs for chambers with specialized functions, diminish over time. Room by room, our domicile shrinks. Eventually, the parlor, living and dining rooms are no longer ours, as such, but shared with strangers, in assisted living or other communal arrangements. We may enjoy a private bathroom adjacent to our bedroom, but it may be shared as well. Access and egress to our “private” room is controlled by the staff of caregivers. Mobility becomes restricted to walkers and wheelchairs, soon under the power of others, as we loose the strength in our limbs, much like the strollers and other devices our parents purchase to support our mobility as toddlers. Finally, we find ourselves dwelling mostly in our bedroom, in which we may have a small storage unit, and which we share with a roommate if we cannot afford a private room. Ultimately we return to the crib, in the form of a hospital bed.
While there are various exceptions to this pattern, including living in intentional communities, college dormitories, and so on, I think you can see the arc of expansion, and then the inevitable contraction, of our domain, or “ecological sweepout,” to use Bucky Fuller’s term for larger-scale travel patterns. We begin in the crib, and we end in the crib. In the 1960s, when part of the role of differentiating our generation from the older folks was the invention of jargon that only we understood or indulged in, the word “crib,” along with “pad,” substituted for home or apartment — wherever and however we happened to live. There is an old riddle that addresses this, asking what beast is it that walks on all fours in the morning, two in the day, and three in the evening? Hint: the “three” represents a cane or walking stick.
In a monastery, a monk or nun would typically be allocated one “tan” — the straw mat often used as flooring tiles, and when raised, as a sitting platform. A single tan is about 3’x6’, and so similar in size to a single mattress. This is the personal space that the monastic occupies; all other spaces are shared with others, with showers and baths segregated by gender.
As a designer, it occurs to me that since we begin in a crib and end in a crib, we might design our domestic environments to anticipate this womb-to-tomb pattern. This would have ramifications for the way residential home design and construction is conceived and implemented. Again, this is not an original thought, but based on the arc of maturation, closing the circle may be. The specific concepts are not germane here, but this idea sets a context for anticipating the forward and rewind dynamic of the arc of our lives, and engineering a supportive environment.
The importance or implications to the subject of personal aging should be obvious. If some such pattern is inevitable, it is foolish to imagine that my life, or yours, will be the exception to the rule. It is doubly futile to resist, and even more so to resent, the unfolding of predictable results of aging in a society ostensibly based on laws designed to protect individual dignity and liberty, while at the same time insuring communal care institutions against unreasonable litigation. The point here is not to reform the system, although one way to do so would be by designing environments, from he beginning, to be more conducive to the aging and dying process, rather than trying to force people into unnatural living situations when the time arrives. Most of the current approach in hospitals and hospices seems to be on the cosmetic level, e.g. an interior decor designed to offend no one.
For us as practitioners and advocates of Zen, its meditation and compassion, witnessing such conflicts that arise between our expectations and aspirations, for ourselves and for others, and the reality that economics can deliver, is a great study in patience. As long as we are young and in good health, engaged in life, liberty and the pursuit of happiness, it rarely occurs to us that we will not escape the decline and disintegration of our body, and with it, our dream of controlling our environment and fate. To embrace what would otherwise be seen as an indignity, with grace and equanimity, is a challenge we will all likely face. There are worse things in the world, but as they say, aging is not for sissies. But aging is only the lead up to, the opening act, for dying.
Specifics of the process of dying, once the decision is made to pull the plug, may be of interest to you, and news to those who have not witnessed it. They illustrate the decisions that family members and staff have to make, in the face of mostly ambiguous consequences. This means that a level of trust has to develop between the caretakers and the cared-for. We naturally project incompetence and indifference on others, especially in a situation where we are already raw from grief and confusion. Care and compassion (suffering with, not blaming) for all are called for.
The first thing to go, in my brother’s case, was the feeding tube. He had a temporary tube inserted through the nose, which further exacerbates irritation, and inhibits breathing, already under great distress in the pulmonary unit. One option involves a relatively simple but invasive operation, in which an incision is made into the stomach wall, and a tube attached to feed fluid directly into the stomach. The reason that neither works, we were told, is that owing to his pulmonary condition, with the lungs nearly full of fluid, any liquid going into his stomach would reflux back into his trachea and aggravate the situation. And any invasive procedure carries the threat of infection, which he had already had in his urinary tract.
So a choice has to be made between eating — which will keep the body alive in the long term; and breathing — which will bring death more quickly if stopped. In this context there are no good choices, only the less bad. The decision is taken on behalf of the patient as to which would be the most comfortable, to maintain the highest quality of life for the closing days and hours. It doesn’t help that the patient may be barely able to communicate their own wishes at the moment, owing to deterioration of physical ability to articulate words, as well as mental confusion associated with the onset of dementia, or the influence of the drugs.
The monitors of vital signs are also disconnected, as the objective is no longer to sustain life, but to let it come to a merciful end as soon as possible, as naturally as possible, and as painlessly as possible. When moved to the hospice facility, itself a traumatic event for him in his fragile condition, the saline drip was re-inserted, and rather than a constant drip of morphine, which incidentally helps suppress the congestion to a degree, injections of painkillers were given as the medicos judged as needed. With his inability even to indicate a clear yes or no answer to a question, as to whether or not he is feeling any pain, the level of trust in the doctors’ and nurses’ judgment becomes even more elevated.
The second day at the new facility, for example, the nurse on duty suggested disconnecting the saline drip, as the body was no longer sufficiently processing the fluids through the kidneys, but concentrating them in the center of the torso, a body’s self-protective reaction, but where they would add to the congestion, basically drowning my brother. It is even recommended that the oxygen be disconnected, if it is only prolonging the misery. How these decisions can possibly be made rationally is beyond me. I suppose that with enough experience, true compassion can look like cruelty, another Zen aphorism. In our case, the surviving family members present, namely his three sons and myself, conferred on the tough decisions. It is a testament to their love and selfless concern for their father, plus their knowing his stated wishes in regards to such matters, that there was absolutely no rancor. Though he at first said clearly that he wanted to live, when they told him it would be as is, bedridden, he indicated that no, he didn’t want that. He mouthed “I am going to die; I am going to die,” his sons told me. It should be noted that when his second wife was facing a similar hopeless ordeal some years ago, he pulled the plug for her, after she had done so herself, and the staff had reinserted it. This is real compassion.
The Tao the Ching has an expression, something like “In terms of family, just be completely present.” Sounds simple, but when you are present at the deathbed of a loved one, and can do little or nothing about it, it is nearly impossible to simply be present. We want to do something, anything, that might effect the situation for the better, or change the outcome. But there is really nothing to be done. So we learn what it is to be completely present, and more importantly, we learn non-doing. That we, and perhaps we alone, might be able to turn back the tide of life and death, is a kind of arrogance, though we may feel it as anguish, and it may be socially accepted as charitable or compassionate. It is natural to fall into this kind of reactionary stance, and it can manifest in very subtle ways.
For example, we took turns on watch, to give the others a chance to get some sleep and relieve the constant pressure of worrying and watching. When you are on duty, you tend to hold the hand of the person, or to maintain touch. You also keep a close eye on the person’s breathing, in case it stops when you are not looking. The breath becomes very shallow and much more rapid than ordinary, but can also be very quiet, once the congestion is mitigated. So you worry on top of worry, that you may miss the moment of passing, and your opportunity to call the others. If they are at home sleeping, you need to try to anticipate when an emergency may arise, even though the staff cannot predict when that may happen. This process can take days or weeks, depending on the specific person and circumstances.
One thing you notice about the breathing is that it is abdominal, just as we breathe in zazen. The rib cage stays immobile, while the diaphragm pulses out first with the inhalation, then collapses quickly with the exhalation. Usually, the rate becomes increasingly more rapid, but can relax into a slower rhythm in between spasms of acceleration. When the end is near, the breath can become highly erratic, accompanied by spasms, and expel a last three or four exhalations as the body stops breathing. The point for us as Zen practitioners is: the body is breathing. My brother is no longer controlling it, so it is the same natural breath of the infant.
One odd thing is that when you notice that they are resting relatively peacefully, you associate a pleasant feeling with this recognition. We usually think that they need to rest, in order to recuperate. But in palliative care, again, the goal is not recuperation. Getting better is not possible. So they are resting, but only to have more energy for the next bout of effort in dying, when it arises. It seems contradictory, and even cruel.
When I first arrived, I got up in my brother’s face and said, “You are really beginning to piss me off!” Which made him laugh and call my name; we have always enjoyed this kind of rough, affectionate relationship. He was still lucid at the time, and able to speak. It was painful to witness the deterioration over the next few days. But he was still mentally sharp, though his mouth would not cooperate to voice the words, other than a “yes” or “no.” We learned that it was mainly dryness in the mouth, and to mitigate it with swabs and moisture. Grooming, massage, eyedrops, all the little things became very important to his comfort.
When I visited Matsuoka Roshi, in extended care toward the end of his life, he was the same. Mentally he was still Sensei, but physically debilitated. In his case, I shaved his head for him; in my brother’s case, I shampooed his hair. It was a privilege to serve each of them in their final days. The thing I miss most about my brother is similar to what I miss about Matsuoka Roshi, the incredible dialogs we had. But spending time with my brother, without the luxury of hearing him talk, was also illuminating. His bravery in the face of death was unassailable. Each time I looked into his eyes I could see he was seeing me, and I could see no fear. I repeatedly told him what was happening, and asked if he was afraid. He mouthed “no” more than once, shaking his head slowly. He was a teacher all his life, and he was continuing to teach us, his sons and myself, in dying with profound dignity and equanimity.
I also read several passages of “The Art of Sitting” to him, as I mentioned above, chanted our embracing liturgy, and gave him the Precepts and a dharma name, UnRyu, Dragon Cloud. I told him he would be like a dragon, flying through the clouds. Every time I see a cloud I will think of him, and every time I hear jazz, or any other music, I will remember him. He is not going anywhere; there is nowhere to go, other than this infinite universe. I told him I have no final words for him, as the pamphlet suggested we try to find; that I fully expect to meet him in the next life. We just may not recognize each other right away.