Words That Heal

The Five Stages of Grief have become an almost sacred tenet of modern psychiatry, a shining example of what can be accomplished by the psychiatric profession in not only helping us better understand our world, but in helping us make our world a better place. The Five Stages of Grief have helped people deal with their grief during and after the death of a loved one, and have also led to more compassionate treatment of the terminally ill.

But what if the Five Stages are not wrong, per se, but somehow incomplete? What if there is a sixth (and even seventh) stage that modern psychiatry has missed?

The Five Stages of Grief have been with us for a long time, 47 years to be precise, and have become ingrained in our culture. First proposed by the great Swiss-American psychiatrist, Elisabeth Kübler-Ross, in her groundbreaking book On Death and Dying, published in 1969, the Five Stages of Grief have since been cited in hundreds of books, thousands of articles and seminars, and are used by health care professionals, clergy and everyday people when trying to comfort the dying, as well as the family and friends of the dying and deceased.

As I write this, I’ve been thinking about the stages of grief for the past 48 hours, while sitting in the Intensive Care Unit of a hospital in California, watching my 84-year-old aunt struggle with the final stage of her life. As she lapsed in and out of consciousness, there was not much I could do other than hold her hand and let her know I was there, loving her, hoping in some small way to help ease her transition from life in this world to whatever comes next. She did not have cancer, or any other readily identifiable disease; her body was just beginning to fail her, her organs slowly shutting down one by one.

My aunt and I are very close. Although she married, she never had any children, and she had no siblings other than my mother. So my two sisters and myself were the children she never had. Even though my aunt and I lived on opposite sides of the continent, we visited each other regularly. We also had a ritual: we talked on the phone nearly every Monday, for about a half hour, usually about mid-morning her time, when she was still bright and alert. We talked about the weather, how my kids were doing, how I was doing, how other family members were doing, how she was doing. As she got older, most of her side of the conversation concerned her various ailments and doctors appointments and get-togethers with neighbors in her assisted living facility. She had a husband—her second—a man she had met when she moved into the retirement home, a wonderful, caring, gentle man. We would talk about him, and his kids, and the things they all did together (his kids lived close by). My aunt and her husband gave each other wonderful companionship in their old age, and gave me a measure of solace that she had someone in her life, since I could not visit her on a regular basis, living so far away. Years ago she had chosen to move from New York to California for her work as a golf pro, and California had become her home. She was not coming back east at the end of her life.

In the same way I was like a son to my aunt, she was like a mother to me. My mother had died from an accident 14 years earlier, and since her death my aunt had, in some ways, taken her place. They were different women, to be sure, but they were sisters, and alike in many ways, and my conversations with my aunt often felt like I was talking to my mother.

And as if all that wasn’t enough, we shared the same birthday, and sometimes celebrated it together.

My aunt’s husband had informed my family via email several days before that she had been admitted to the hospital and was not doing well. So I called him to get more details, and as I suspected the picture was more bleak than he had led us to believe. This was no conscious attempt to deceive on his part, but merely the first stage of grief for someone who is dying as outlined by Kübler-Ross: denial. I immediately called my sisters and we made plane reservations. It was not a matter of questioning the quality of care she was receiving, or the decisions her husband was making. Even though he was 88 years old, his mind was sharp, and he was an intelligent man. The reason we all wanted to go was the same: we wanted her to know she was loved at this critical time. We wanted to alleviate her suffering in any way possible, just by being there for her. We wanted to hold her hand, kiss her forehead, and let her know everything was going to be ok.

We have had our share of death in our family, some of it normal and expected at the end of a good life, some of it not. Besides my mother’s accident, my sister lost her husband to cancer at an early age. But it had been a few years since I had dealt with the death of someone so close, so I downloaded Kübler-Ross’ book to my iPad, along with a few other books on death and dying, to brush up on how to best help my aunt, and to come to grips with my own feelings. As a nearly 40-year practitioner of Zen Buddhism, I downloaded The Arts of Contemplative Care, Pioneering Voices in Buddhist Chaplaincy and Pastoral Work. I also downloaded Dying Well, Peace and Possibilities at the End of Life by Ira Byock, a well-known M.D. who has written and taught extensively in the field of palliative care, I had a long plane flight.

The Five Stages of Grief as outlined by Kübler-Ross are denial, anger, bargaining, depression, and acceptance. Kübler-Ross herself said during her lifetime that her theory was often mis-understood or misused, with not all patients or caregivers experiencing all five stages, and the stages not always being linear, i.e. not always starting with denial, and running through anger, bargaining, depression to acceptance. I had run through all these stages before, especially with my mother and brother-in-law, whose deaths seemed so senseless.

As I began the journey to California, blissfully tucked away in an airplane, away from text messages, emails, phone calls and other interruptions, I finally had time to think, feel and remember. I had time to prepare myself for what I might find in the hospital in California. I tried to not get my hopes up, but I was definitely in the first stage: denial: her doctors thought she might have an undiagnosed infection, which treated with antibiotics would help her mental and physical state, allowing her body to grow stronger. Even though she had a pacemaker installed several years before, her heart was not functioning properly, but perhaps more tests might discover something… There were straws I could grasp.

At the same time, I tried to prepare myself for anything, including the worst. One of the basic skills of Zen, and one of the hardest to acquire and accept, is called “not-knowing.” It’s hard, especially for those of us who have gone to top-flight colleges and universities and received advanced degrees, to have the humility to accept that there are things we do not know, things we cannot change. Was my aunt really dying? How long did she have to live? What could I do to change that? The answer to all those questions was: “Nobody knows.”

The first day with my aunt, I was definitely still in denial. I could see the signs, but didn't want to accept them: the bloated limbs, the many bandages where her skin would not heal, the breathing tube, IV and catheter, her often confused state. But on the second day there were good signs too: she recognized my sisters and I. She even made a few jokes. She ate a few bites of solid food. Her infectious disease specialist said her blood work was coming back slightly better. Perhaps, perhaps…

But part of Zen training is to be completely, totally aware: of the world around you, of the world inside you. And I finally was honest with myself. I let my awareness not be clouded by delusion: she was dying, with probably only days to live; my hopes were creations of my own mind.

As we walked out of the hospital the second night, I turned to my sisters and said, “I feel angry, really angry. Not at any particular person, but angry at death.” My aunt was sometimes in discomfort, but not in pain, she’d had a good life. Still…I was angry, Kübler-Ross’ second stage of grief had kicked in, just as predicted.

The bargaining stage, I skipped over. I knew death was a part of life, I was not about to promise God I’d be a better person if he made my aunt well, or any of that. Perhaps if it had been one of my children dying way too young, I would have tried to make those bargains, sacrifice myself as a parent so my child could live, but this wasn’t that kind of situation. My aunt was old, sick; it was her time to go.

The next stage, depression, came quickly. I think it came from knowing I was losing her, from knowing I was helpless to do anything. I imagined what would have happened if she and I had lived closer, been able to spend more time together. I recognized this as being the most ego-driven stage: this was all about my grief, my feelings, my unhappiness. In Zen, we work hard to achieve a state often referred to as “non-self.” It is a state of mind where we become aware that the way we see the world is a product of our own thoughts, delusions that prevent us from seeing the world as it really is. Forget about me, and what do you see?

Kübler-Ross’ final stage, acceptance, also came quickly. Once I recognized that the depression wasn’t “real,” wasn't tangible like a rock or a tree or a hospital bed, but a product of my mind, I was able to let go of the depression, and practice gratitude: I silently said thank you for having had such a wonderful women in my life, thank you for her own long life and happiness, thank you that her death would be relatively quick and natural and peaceful, thank you that she had a wonderful supportive husband and step-daughter at her side.

I don’t think this stage, acceptance, is necessarily “natural.” I have known people who get stuck in the depression stage for years, unable to get past the loss of a child or spouse. I think this stage is as much learned as it is innate, and I thank my mother, grandmother and my aunt for leading by example, showing me how to find gratitude and a positive outlook on life in the most difficult circumstances, even death.

And so the story could end there, and for Kübler-Ross’ and her academic descendants, so it does. But there is another stage of grief, the truly final stage, that has mostly been ignored. A stage that liberates, that brings full circle the miracle of life, that helps us find that elusive mental state: happiness. A final stage that releases us from anger, depression and even the lukewarm acceptance. The stage that allows us to move forward in positive ways and enjoy the life we still have. The final stage is Joy.

There are really two kinds of Joy that we can experience as the final stage of grief. The first is a more “normal,” more easily accessed emotional state. To give you an example, I remember when I was in my early twenties, working as a semi-pro racing sailor. The man who owned the boat I raced on was a wealthy industrialist, probably in in 70’s. He was tough, and loved to win (which is likely what made him so successful in business), but he was also from that generation who were gentlemen, who enjoyed helping others, and who had a ready laugh and a smile, even in the midst of disaster on the race course. We raced his large sailboat around the East Coast, in good weather and bad, during sunny days and dark stormy nights. You learn a lot about people when you spend hours with them in the middle of the night, cold and wet, talking about life, and he had become a mentor to me, teaching me not only how to win on the race course (which we usually did), but how to behave as a man: how to fight for success, how not to give up, how to be tough, how to be gracious in losing, how to be grateful for a beautiful day on the water, or even a rough night at sea. He also took an interest in my personal life, and gave me advice and help when I needed it; nothing to do with racing sailboats.

One beautiful sunny day the boat was charging for the start, the amazing power of wind channeled through sails and rigging into propelling a multi-ton boat rapidly through the water. It’s hard to explain to someone who has never been on a boat in this situation what it is like: boats jockeying for position, sometimes coming within inches of each other (boats that if they hit, could seriously maim crew members and cause tens of thousands of dollars of damage), skippers and bowmen yelling above the wind. There is stress and excitement and adrenaline and fear and split-second timing. It’s a wonderful, wondrous, exciting moment.

At the last second, just before the start, the boat veered wildly. The crew looked aft to see our skipper—the owner, my mentor— slumped forward over the steering wheel, the victim of a massive heart attack. He was pronounced dead back at the dock.

Several days later there was a memorial service at a local church, with many mourners. He had been a pillar of the community, with many friends. His wife invited some of us back to the house afterwards, including all his young crew, and we stood outside in the back yard on a glorious sunny day, drinking, toasting and singing sailing songs, celebrating the man we had known. It was a joyous occasion, one similar to what I imagine an Irish wake must be like after the whiskey comes out, or the second half of a New Orleans “Jazz Funeral,” where friends and family say their final goodbye and "cut the body loose" with joyous music and dancing to celebrate the life of the deceased.

The reception was emotional fun, sad, bittersweet, raucous, irreverent, loud, quiet, and full of “remember when…?” There was much alcohol. One of our crew imbibed just a bit too much and had to be driven home, leaving his car. But above all, I remember the occasion being joyous. The man himself had been full of life, with a ready, hearty laugh, plenty of friends and family, and he died as he would have wished, charging for the starting line, barking orders, with a smile on his face and the raw power of nature in his hands as he gripped the steering wheel. Who could have asked for more?

The other joyous death celebration I remember well is the memorial service and reception we held for my mother. Her situation couldn’t have been more different than my sailing mentor. She suffered a freak accident when she fell down a dark flight of basement stairs, smashed her skull on the concrete floor, and spent the next two years first in a coma and then in a severely disabled state, unable to walk, talk, feed herself, clothe herself, or perform any of the hundreds of other activities of daily living we take for granted. For several years before that, she had struggled with a rare form of cancer, and had beaten it. When she died, she was only 68 years old.

She had died too young, it was “unfair” after having just beaten cancer. She had been a good person, the kind of woman who did volunteer work for many causes. She had not died a “good death” doing something she enjoyed. Her grandchildren were young and would barely remember her. I spent a year and a half spoon-feeding her pureed food, wiping her chin, talking to her, hoping she would say something back, words that never came. Finally she died from her injuries. It was difficult to feel joyous about her passing. And yet the church was full to bursting for her service, and hundreds of people came to the reception afterwards, laughed, drank to her memory, to her life, as grandchildren chased each other through the forest of adult legs, oblivious to the fact that they should be “mourning.” We celebrated her life, her legacy, with laughter, tears and friendship. It was a modern-day community ritual, something often missing in our hectic, lives-scattered-to-the-winds world.

And so we could end there. Joy, both personal and communal, as the sixth stage of grief. The joy we can experience when a life ends, joy as a way of coming back full circle to the jubilation we feel when a new life enters the world. But there is more. There is a secret, sacred, rarely experienced seventh stage.

As human beings, I am fairly certain that our brains do not have the capacity to understand intellectually what happens to us after death. At least not in this stage of our species’ development. Maybe someday. Great minds have been trying to figure out this great mystery for thousands of years without success. But, we do have the capacity to feel what happens in death. If we let go of our preconceived notions, the conditioned responses taught us by society, If we silence the voices in our heads, then we can experience the unfathomable, fall-to-your-knees, weeping ecstasy that comes from suddenly knowing that something wonderful happens in death, even if we don’t know exactly what that something is.

My teacher, the late writer and Zen master Peter Matthiessen, liked to tell the story of attending a “Bearing Witness” retreat at Auschwitz. the former Nazi death camp in Poland. These multi-faith and multinational retreats are sponsored by a Zen group called the Zen Peacemakers. For five days, participants spend much of the their time in silent meditation, sitting by the train tracks, in the barracks and other buildings. They meet in “council” sessions to discuss their feelings, their reactions to their surroundings, and inevitably such topics as good and evil. They are joined by members of the local community, and the stated purpose of the retreat is to “contribute to healing in a place where much trauma happened.”

While it may seem naive at best to think that a handful of spiritual participants can somehow help heal a place where one million people were exterminated by fellow human beings, the retreats have now been held for 20 years, so something good must be happening.

The impact that Peter liked to tell his Zen students was the reaction of some of the participants, especially some Jews and Rabbis, usually toward the middle or end of the retreat, after several days of silent meditation. The denouement of Peter’s story was that most everyone of every faith and nationality at some point began to experience feelings of intense joy. Some of the jewish participants, especially the Rabbis, were so disconcerted by having feelings of joy, when they were “supposed” to be having feelings of sorrow and grief, that they had to leave the retreat. Peter’s point was that we do not really know the truth about death. And that silently meditating, letting go of our thoughts, really listening and feeling that which is normally hidden from us, can give us a glimpse of reality. Sitting in a place were one million people passed from this world to whatever happens next, just might be one of those places where we glimpse the great unknown joy of the hereafter.

Peter felt so strongly about this that the final book he wrote, published only weeks before his death, was a novel based on his time at Auschwitz. His book’s title? In Paradise.

There is a problem with this seventh stage, however. The seventh stage is rarely encountered, and even more rarely understood. Like a precious jewel, It is not something to be shared lightly. We must have the common sense to use our knowledge wisely.

If you reach this stage prior to your own imminent death, hallelujah. If you reach this stage while caring for a terminally ill loved one, it can be transformative. I remember sitting with my mother day after day in the intensive care unit as she lay in a coma, head bandaged, connected to tubes and wires and monitors. I would sit by her bed all day, sometimes reading, sometimes meditating, sometimes getting out of my chair to run my fingers lightly over her inert arm, or kiss her on the forehead, and whisper to her that everything was all right, I was there. It was not a pleasant vigil, but one I thought needed to be done. The tubes were keeping her alive medically, love could keep her alive spiritually.

One day, as I sat watching my mother’s chest slowly rise and fall, her eyes still closed, as they had been for weeks, I had a sudden revelation. My anger and depression lifted and was replaced with intense feelings of joy. My mother was like a little golden buddha lying peacefully in her bed. She was almost radiating light, and a voice in my head said “a life is a precious thing, no matter what form it takes.” From that moment forward, my feelings never changed. I even used those words in the eulogy I delivered for her to a packed church a year later.

But the problem is this. Most people do not reach this stage, either in their own death, or in experiencing the death of others. If we do it usually takes many years of prayer, meditation, and the wisdom gained from living on this planet. We must be careful not to yearn for this stage, not to think there is something wrong with us if we don’t feel it as we lay on our deathbed. We are where we are, and that’s ok. Desiring something more will only cause us more grief.

And if we are a caregiver or friend, it gets even trickier. Imagine walking down the street and bumping into a friend. She tells you her husband passed away several weeks ago. You blurt out, in your understanding of the seventh stage, “Isn’t that wonderful!” in a voice filled with joy.

You can lose a lot of friends that way.

Better that we have the awareness to see clearly what stage a person is in, and just sit with them in that stage, whether they are a patient or a family member or friend of the dying person. If they are angry, sit with their anger. If they are depressed, sit with their depression. If they are lucky enough to have reached some sort of joy, sit with that too. You cannot “fix” where they are; no words of “you should do this” or “you should feel that” will help. All that will help is “I’m sorry, and a gentle touch on the arm and shoulder. Because what will really help is your calming, gentle, loving presence. The vibe you give off in the dying person’s room, at the funeral, at the wake.

In The Arts of Contemplative Care: Pioneering Voices in Buddhist Chaplaincy and Pastoral Work, Roshi Pat Enkyo O’Hara, a Zen priest, describes a conversation she had with an oncology nurse about what makes Buddhist Chaplin’s different. “[The nurse] smiled and said, ‘There’s just something about the Buddhist chaplains— simply the way they walk down the hall seems to put people at ease.’”

The point here is not that we should all run out and become Buddhists, or Buddhist chaplains, but that those traits of contemplation, awareness, acceptance, presence and reaching the sixth and perhaps even seventh stage are key to providing compassionate caretaking. And with time and guidance we can all —Christians, Jews, Buddhists, Muslims, Jains, American Indians, Hindus…even atheists—reach that place where just our presence puts people at ease.

Which brings me back to the seventh stage. I do not have the words to describe this ultimate joy, because I do not think the words exist. But after nearly 40 years and untold hours in silent Zen meditation, I have been fortunate enough to reach that place where you just know. That place where you feel joy arising in death. That place where you see the sleeping golden buddha in a woman lying in a coma in an intensive care unit. You don’t fully comprehend exactly what you know, but you do know that something wondrous, joyful, beautiful, sublime, and perfect happens to us when we die. Something having to do with The Great Spirit. Something Having to do with God, with Yahweh, Allah…whatever you want to call it. We do not just disappear. We are transformed. We don’t pass away, we pass on.

And when you realize that, perhaps you have entered the seventh, and final stage of dealing with death: a stage beyond acceptance, beyond joy…a stage that words cannot describe.

 

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