The Topic of Cancer


“We ought to consider not only that our life is daily wasting away and a smaller part of it is left, but another also must be taken into the account, if one should live longer it is quite uncertain whether the understanding will still continue sufficient for the comprehension of things, and retain the power of contemplation which strives to acquire the knowledge of the divine and the human.—-We must make haste then, not only because we are daily nearer to death, but also because the conception of things and the understanding of them cease first.” The  Meditations of Marcus Aurelius

 

Americans have a peculiar relationship with death. Noticeable in the world at large is our general lack of empathic understanding of that, which we know as the single absolute certainty of life—its eventual termination. Our popular media serves it up as after-life black comedy, Jesus heaven, that other terrible place for those of us given to rebellion, chic-flick pathos, or glorious, brutal entertainment. It is often sexualized to fit the moral shadenfreud of frightened deists or demonic political agendas. It is the truth, however it’s path.

Gay men are responsible for AIDS and women get cancer. These moronic simplicities still pervade the media beast of common consumption. However, since the onslaught of AIDS/HIV and the pandemic of cancer among us all, the tidal change of public perception is moving, because five degrees of separation allows nearly all of us to experience the intimacy of terrible illness close to the heart and that spectacle of prejudice is mighty thin in the light of a close compassion. We can embrace that stage of life, which brings to closure the collective richness of all which precedes it.

In a time long gone from common habit, my father the youngest of fifteen children, experienced the ‘laying out’ in the formal parlor the deceased, while all family members viewed the fact and keening old ladies in black wailed in sonorous cadences the heart felt loss and grief of everyone. Such embracing ritual was an organic extension of the illness, long ,short or sudden that preceded extinction. The traditional wake was the fulcrum on which balanced living, dying and summation in celebration of a life once lived, flowing forward in memory and story. “The heart does go on.” The ‘nuclear family’ lost the ballast of healing  communal tradition in the twentieth century, but now in the tempest of this age of perpetual war, plague, and terminal illness we create new transgenerational families when ours may or may not be there to support us on the ebbs of life, when we alone cannot do it all alone.

It is not difficult to write about fatal illness in the  abstract. There are after all those myriad statistics, ever multiplying journals, medical and pharmaceutical directions, commercial allures, alternative therapies, how-to books, support groups and plain old snake-oil hustles, or magical miracle cures in third world countries. It’s not difficult to speak of deadly illness in metaphors, a subject brilliantly pioneered and as sharply flawed, by Susan Sontag. The ‘war’ against cancer, a ‘curse,’ ‘God’s judgment, ‘punishment,’ ‘survivor,‘ ‘cancer personality,‘ ‘love our cancer as ourselves,‘ and ‘disease producing lifestyles’ are, in spite of righteous religious radicalism, blasphemies going the way of the dinosaur. After all, when before us, the story of each experience is unique to the end and beyond. We experience a complex that no language can translate and only poetry can contemplate. This is the heart of the matter that is so difficult to write about and is simultaneously, the full energy and intricate truth of it.

In the language of being it is the stories of individuals that have the most impact, the distant legs, and the long history. Sontag was spot-on in her intuition about Cancer and HIV/AIDS being the metaphors of enormous atavistic change in our culture. Although enmeshed in politics, religion, and popular culture like creatures caught in a greater web, the metaphors are not the web. It is the web that interests us, it is the web that portends greater living consciousness, and it is the web of life that caregivers and those who live with life threatening illness can experience as agape; that which those in Christian terms live in full as the Beatitudes. And, it is the truth radiant in the Beatitudes that informs all enlightened spiritual paths, Christian or otherwise. The Koran, the Buddhist Cannons and numerous other brilliant jewels of insight always direct with clarity in versions of the following:

# Blessed are the poor in spirit: for theirs is the kingdom of heaven.

# Blessed are the meek: for they shall posses the land.

# Blessed are they that hunger and thirst after justice: for they shall have their fill.

# Blessed are the merciful: for they shall obtain mercy.

# Blessed are the clean of heart: for they shall see God.

# Blessed are the peacemakers: for they shall be called the children of God.

# Blessed are they that suffer persecution for justice’ sake, for theirs is the kingdom of

heaven Gospel of St. Matthew 5:3-10

 

Just what is it to which they point? They point to a clarity of experience that perfectly unites living and dying. The above understandings are as radical now as they were over two thousand years ago, as they have always been since before then in numerous languages and ages past. The list of the Beatitudes still goes against the grain of human self interest and so often become the ephemeral costume jewelry of religious decoration. But, because they are true—- remain so, even while hidden in plain sight.

Critical living, living with dire illness, dying, living with the explosion of mortality in our hearts and minds is no different than Gnostic transformation—-super living in a manner of thinking. The Beatitudes are simply, if radically, a perfect artifice to manifest in action the transformation of our understanding while dying in the intense fullness of living.

Human spirit at such a juncture seems to step through a doorway of consciousness and never returns to the dulling weight of habitual attitudes again. For example, a while back we were sitting at an outdoor cafe drinking coffee with friend, who has been a longtime critical care giver and hospice attendant. A youngish woman with a bald head wandered through the crowd, making her way to the interior of the cafe when she glanced in our direction, saw his beautiful smile and beamed the most radiant recognition. Over the course of a year we saw her several times and every time was similar, sometimes with small talk, but mostly not.

Cancer was never mentioned, not because it was taboo, but because the knowledge was already there and the dross of life as usual was stripped away. Variations of this beautiful, full, human ‘connectiveness‘, are the gifts of life we can all experience when we see the everyday with the consciousness that comes with passage through that doorway in the mind. It is none other than pure spirituality free of ideology and intent. Some might name these encounters ‘spiritual,’ ‘holy,’ ‘Gnostic,’ but what ever we name it later in memory, the connection to greater life is transcendent in its simplicity, humbleness, and colored by the entire web of our human emotion. Marcus Aurelius was very aware of fleeting time and the brief opportunity for passing through that doorway of awareness:

We must make haste then, not only because we are daily nearer to death, but also because the conception of things and the understanding of them cease first.”

 

All the philosophizing and beautiful prosaic words in the lexicons of comprehension or denial are of dubious worth when the doctor says: “You have AIDS,” “The tests reveal cancer,” “Its back,” the prognosis is not good.” The shock, the horror, the full weight of mortality falls on us and challenges every good hope for the future we once cherished. Then we start the journey ahead to live and its no trip for the faint of heart: one step at a time, and then more steps at a time. Prophets of practicality appear, love appears, support appears, fair weather friends and some family disappear, new conscious friends appear. We understand and are directed through that doorway to healing or living in our dying with the fullest of zest. Our future becomes now.

There seems to be synchronicity in great historical epochs between catastrophic events and avatars of consciousness, prophets of the practical, who lead us through. During the advent of the great plague of HIV/AIDS in the late twentieth century Dr. Elizabeth Kubler Ross wrote the seminal work, “Death and Dying,” on what was until then a dearth of information on the complex gestalt of terminal illness.

As she began her practice, she was appalled by the hospital treatment of patients who were dying. She began giving a series of lectures featuring terminally ill patients, forcing medical students to confront people who were dying. Her extensive work with the dying led to On Death and Dying in 1969. She wrote over 20 additional books on the subject of dying.

She also proposed the now famous Five Stages of Grief as a pattern of phases, most or all of which people tend to go through, in sequence, after being faced with the tragedy of their own impending death. The five stages of grief, in sequential order, are:

denial,

anger,

bargaining,

depression,

acceptance.

The five stages have since been adopted by many as applying to the survivors of a loved one’s death, as well.

She did not found the hospice care movement, but its adherents credit her with encouraging it. Kübler-Ross completed her degree in psychiatry at the University of Colorado in 1963 and has also received 23 honorary doctorates. http://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross

Anyone who is going through the diagnosis of critical/terminal illness, has gone through such experience, or is in the web of care giving knows the maelstrom of the stages, their overlapping and intense interaction; their totally transforming nature. All of us touched by such catastrophic events are permanently radicalized. Some engage Sontag’s metaphors of war; others, the passages of an understandable salvation; others the telescoped richness of an entire future in a limited timeline; and still others leave behind a legacy of activism, made brilliant by choices in ordinary events that not surprisingly echo the clarity of the Beatitudes.

Not in control, we become even more intently the captains of our souls through very conscious choices, roiling emotion and magnificent human manifestation. Have you ever had that sensation of being invisible in a hyper active world, watching those furiously busy with mundane events, while an awesome stillness settles like the shock walking through an accident? It changes all perception. It creates a strange and sublime humor. It rocks with terrible pain the infant of our entire lives. It installs the most heroic courage in us, the most fearful vulnerable need, the most vivid moment-to-moment clutch of living. We act, naturally, out of the depths of our sentient spirit as if spring plants rising from the earth in a fire storm. Except for the most pathologically evil among us, we are all fully capable in the degrees of circumstances to be prophets of life, caregivers, lovers and living examples of that which is best in human nature.

The call to healing and living is a sublime, but perfectly everyday event that most good women know and most good men come to know in time. It is important in our culture and our lives to tell stories about these events, these courageous journeys in all details, subtle or large so that those who follow know that, no matter the terrible path that may unfold, take all forks in the road and live to be fully human. As an old senchai, I tend to tell stories about the prophets in my life, those that brought light into my darkness, clarity onto my stupidity, richness into my barren bitterness, and a colorful palette into my rigid monochromatic mind grid.

STORIES 

Cal

Cal was in for his last hospital stay, the cancer had metastasized and was now considered incurable. The hospital atmosphere was unbearably bright and sanitary and the stay, weeks long —-an eternity in creeping minutes of eternal noon. But, Cal was allowed to leave his bed and free to go to those ‘chirpy’ atrium rooms that some hospitals stock with Wal Mart tropical plants for happy reflection. He called me for company and I went to meet him outside his room and devised a revolutionary plan. I packed him up, wheelchair and all and headed off to his farm so he could spend a few hours on a sunny, late summer day sitting in his beautiful garden with his dog by his side. He died several months later.

Brother Robert

Bob had a terrible and long illness. In the midst of it all he lost his insurance, house, lifesavings and most of his friends. His family, embarrassed by his condition once sent him a fruit basket, but never visited. When he went into the hospital the last time it was for the removal of a brain tumor—-an experimental operation created by his doctor for practice since he already had a terminal diagnosis. Then he disappeared for several weeks. The hospital felt that his recuperative in-house stay was too expensive so they sent him to a human storage facility called Hill Haven. When we found him, a State closure had been posted on the front door and we simply took him away from a ward of ten elderly patients, whose bedsores and soiled sheets were a vision of hell.

A week later Bob’s body began to shut down and swell. He was finished with life and wanted to die. One day he managed to get out of bed and wandered down the hall and was found  confused near a a stair well by a neighbor. He tried several more times throughout the week until a neighbor called me thinking that dementia had claimed Bob. His speech was drastically effected by the operation, but the core of his mind was intact.

He told me he wanted to jump off the roof. He couldn’t go on and he needed my help. So, I told him Ok, but wait for me; we’ll go together. For the next few days I would call on him and ask if he still wanted to jump off the roof. “Yes,” he said. So I would walk him down the long hallway to the exit stairs, a journey of some twenty minutes at his pace, then up a long flight of stairs where the roof door was waiting. But, it was locked as I knew. So, we agreed that the day was not a good day for the mission and headed back. After a few more disappointing runs he decided to abandon the plan. He died the evening after the last courageous journey to the roof as I propped him up for a cool drink of water.

Mary’s Mother

Mary is an extraordinary woman, probably one of the most resilient ,  intelligent and compassionate human beings I’ve ever known. She, by fate and weighty fortune, has been in attendance at the death of her entire family. Approaching each event with a humanity and courage stunning in its ordinary play and profound quality, she has always been my guide and  inspiration in matters of life and death. When her mother became ill, succumbed to Alzerhimers and was placed in a care home, Mary would set aside quality time from her strenuous professional life to visit her mother and enter her world. She once told me that while her mother did not always recognize her, her mother’s love did. She would look at Mary and say “nice doggy,’ petting her.

Bob

Bob and Laura were elderly neighbors, whose suburban dream after the Second World War became real and sustained in one spot a large family for nearly fifty years. When we knew them their retirement years were long in the tooth. Bob a retired engineer, a man’s man of the old school, was then Laura’s soul companion, while she faded from the longer moments by Alzerhimer’s. Always present in the moment she was absolutely delightful and one could envision neighborhood tales of her doing cartwheels down the street when so inspired.

I met Bob one day while weeding the white picket fence between our yards. He thanked me for saving a rose sport which had sprouted from a long-gone rose bush that once grew there. He explained it had been Laura’s favorite and that he had always picked one for her when they went out dancing in the old days.

Although Bob had serious health problems of his own he devotedly became Laura’s caregiver, washing her, feeding her, taking her on ‘drives’ and loving her intensely. Once he invited us over to visit Laura, who had a fondness for T, and I saw that an entire wall of the dining room was filled with books, like the Harvard Classics. Laura’s art was everywhere displayed and Bob proudly pointed out her efforts and each history. He had become a caregiver, crossed that threshold of the doorway and transformed his life with love and service. They died within a year of each other.

Bill

Bill was a brilliant, humane and gifted man, father of three boys. His oldest son was  deeply close to his heart, but carried the onus of family ‘black sheep’ by the others. Becoming a Zen monk in a conservative Republican religious family tended to place ‘Joseph and his coat of many colors’ in virtual exile. When Bill became aged and faded by congestive heart failure he was placed in a beautiful residential villa in Santa Barbara where he could get excellent care in a serene environment.

His family loved him, but denied him the one thing he wanted most and that was time with his oldest son. They went to great lengths to prevent that event from happening, explaining that it would be too upsetting for ‘Father‘. Apparently they had caught on to the vigorous correspondence Bill had maintained with his son and that he took a great interest in theoretical physics as a means to cope and understand his impending death. They also caught on to the albums of recorded music that his son’s partner had sent him to make smooth and enjoyable the waiting days. A family decision made manifest the denial to a last Christmas with Bill.

But, shortly before Bill died, MandT forced the issue by driving down and appearing on the doorstep to visit Bill with a delicious moveable feast. They had several hours together talking philosophy, poetry and politics. Bill received several of his son’s paintings to enliven his room overlooking the garden and several more of T’s beautiful music CD’s, particularly Faure’s Requiem . When departing, M looked into his father’s eyes for the last time and heard him say, “I will never say goodbye.”

These little stories are but cartoons of incredibly complex and intricately textured events,  serving to point  direction in matters of choice, particularly in those extraordinary moments of ordinary life and death situations, wherein we can access our full humanity and become angels. For those not given to divine metaphors, the burley secularism of Aurelius will also lead the way:

We ought to consider not only that our life is daily wasting away and a smaller part of it is left, but another also must be taken into the account, if one should live longer it is quite uncertain whether the understanding will still continue sufficient for the comprehension of things, and retain the power of contemplation which strives to acquire the knowledge of the divine and the human.—-

We have the wonderful opportunity to carry the elevating knowledge of these intimate experiences into the greater world in translating such wisdom into action by living those precepts of the Beatitudes and other directions like them to make the enormous choice of compassion a practical way of life. As for sainthood, please know that such souls are radical beings, who have known much joy and much darkness.

One of the most enlightening stories making the rounds these days is the Catholic Church’s rush to get a good batch of saints established for the twenty-first century. Among the usual frauds and misfits are a few genuine, amazing, crusty individuals, like Mother Teresa. The most amazing thing about Agnes Gonxha Bojaxhiu, Mother Teresa, was after her initial calling and its experience of divine union all fell dark and painful doubt dogged her long life. But, she filled those years with extraordinary, practical and compassionate work. She realized at the deepest level, as we all do who give care or face rushing mortality, that we do it because the overwhelming need is there, it’s call unmistakable, and it’s mission the essence of living. We suspect  part of that spirit can be found in the affirmations of a woman like Jenny Joseph as she lived with the knowledge of cancer transforming her life:

When I am an old woman I shall wear purple

With a red hat which doesn’t go, and doesn’t suit me

And I shall spend my pension on brandy and summer gloves

And satin sandals, and say we’ve no money for butter.

I shall sit down on the pavement when I’m tired

And gobble up samples in shops and press alarm bells

And run my stick along the public railings

And make up for the sobriety of my youth.

I shall go out in my slippers in the rain

And pick the flowers in other people’s gardens

And learn to spit.

You can were terrible shirts and grow more fat

And eat three pounds of sausages at a go

Or only bread and pickle for a week

And hoard pens and pencils and beer mats and things in boxes.

But now we must have clothes that keep us dry

And pay our rent and not swear in the street

And set a good example for the children.

We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?

So people who know me are not too shocked and surprised

When suddenly I am old, and start to wear purple.

 

I did say that such is very difficult to write about. After the sparkling words have passed, the poetry pleasured, and the philosophy settles only one word remains: ALIVE.

            

 * * * * * * *

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