Deliverance by James Dickey – a book review

DeliveranceDeliverance by James Dickey

My rating: 5 of 5 stars

What an amazing book! It took me completely by surprise and, without belaboring the point, it can be read as an extended metaphor for the most difficult, life-changing challenges of our lives. (Yes, I’m talking about metastatic cancer.)

I’ve seen the movie, which was an adventure-thriller adaptation of James Dickey’s book. But James Dickey‘s book is not an adventure-thriller, not in that sense. It is much, much more.

James Dickey was not only a prose author; he was also a poet. In fact, he was perhaps better known as a poet, having been a Poet Laureate Consultant to the (US) Library of Congress, among other honors, and he finished his life as a professor of English at the University of South Carolina at Columbia, where he was also poet-in-residence.

The soul of a poet sings through the prose of Deliverance. The descriptions of the river, the trees, the people and the protagonist’s inner landscape are both closely observed and stunningly rendered. The sentences are simple, the vocabulary accessible, yet the writing soars and lifts the reader with it.

Four middle-class suburban guys who like to hang out together decide to go whitewater rafting in an all-but-inaccessible part of Georgia and terrible things happen. The environment–natural and human– is trying to kill them. They have to react, they have to save their own lives and escape. At what cost?

Four men enter, three men leave. All three survivors are badly injured and at least one is profoundly changed. He is Ed Gentry, vice-president of a small advertising agency. (Dickey worked in advertising early in his career.) The story starts slowly, gently, as befits a legend of the South. We meet the men, and especially get to know Ed: his work, his wife, his son, his personal history. We start to see how his life is ordered, how he thinks, how he experiences the world.

We experience this journey through Ed’s eyes and through his soul. We become intimate with his loves and his terrors. We share his wonder at his own mental and physical abilities. We become one with him as he faces the challenge of his life and its aftermath.

Forget about the movie. Read this book!

View all my Goodreads reviews

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Chronically terminal rumination

 Last week I published a post about ways of referring to people with cancer at different phases of the disease (Cancer Words), mostly based on an article and a letter in the Journal of Clinical Oncology. (The link will take you to a Medscape Nurses review of the discussion.)

You know how a cow chews her cud? (Bear with me here.) She ingests her food and it goes into the first part of her alimentary canal, the rumen. Then she regurgitates the partially digested food and chews it up some more. This is called chewing her cud, and it is the characteristic of animals we class as ruminants.

Now then. This should make it clear that ruminating is not unlike throwing up a little in your mouth, an unpleasantness I try to avoid. On the other hand, some concepts do bear more than just passing consideration, and how to refer to my disease is one such. (Okay, at this point I should probably let you all know that I’m writing this post while under the influence of oxycodone. Keep up with the drivel, and we’ll ultimately get somewhere together.)

My problem with the terminology can be summed up like this:

  • I am not a survivor. I haven’t died of cancer, but there are secondary tumors at various places in my body. Active cancer.
  • I am not terminally ill. That is, I am terminally ill, but not in the sense of qualifying for hospice at this point.
  • I am chronically ill, but not in the sense of someone who has schizophrenia or diabetes or hypertension, in that I will eventually die of this chronic illness, God willing.

(“God willing” meaning that I’ll die of cancer unless  a war or terrorist attack or something, which is not all that unlikely around here, kills me first. Or the end of the world. Whatever. The point is, I’d rather live out the span allowed me, even with chronically terminal or terminally chronic cancer.)

In a very real sense, I am Living in an Undefined Space. I often say I am living with cancer, but cancer does not play well with others and is not a good roommate. I wrote about this in one of my very first posts, Have I survived yet? At that time, I wrote:

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

Over a year and a half later, I can say two things with certainty:

I am still alive. (Yay!)

I still don’t have the answer.

Cancer Words

I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.

But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.

So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.

Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”

The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…

  • acute cancer (for people in treatment)
  • cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
  • chronic cancer (for people with advanced cancer that alternates remissions and relapses)
  • chronic cancer, active phase

I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology. 

The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.

“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.

(As terminology. The disease itself is one of the worst things that has ever happened to me.)

Have I survived yet? Part I (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. Today’s is the first of two posts that attempt to explain my attitude to the cancer and why I choose to say that I am “living with” cancer; I am not fighting it or suffering from it, and I haven’t survived it. The second part is here. Thank you for reading.

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessonsauthor of http://www.medicallessons.net/ for the original inspiration for this post.)

Invictus: Survival, Autonomy, Faith

William Ernest Henley Vanity Fair 1892-11-26 (from Wikipedia)

A smarty and funny Twitter friend and blogger recently reminded me of William Ernest Henley’s poem Invictus. Think of it as a Victorian teenage boy’s version of Gloria Gaynor’s I Will Survive. At the dawn of his adolescence, Henley was stricken by osseous tuberculosis, eventually having to endure a below-the-knee amputation at age 17. He must have suffered severe pain throughout his teen years and young adulthood. It is said that Invictus was inspired by the amputation; it was published in 1875, when Henley was 26.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Far from expert on the Victorian era, I have the impression that it is a time of contrasts: sickly sweet sentimentality coyly nestles up to the robust “manly virtues”. It is the era of “muscular Christianity” and of strictly defined class structure and social systems. It is an era rife with sexual taboos, but its pornography is read to this day. An era of contrasts, of division, of merciless social expectations. Individuality was not encouraged.

The title Invictus (“undefeated” in Latin) was not Henley’s, but that of a later publisher. But it is perfect, isn’t it? A young boy suffering from a painful, usually fatal illness. Boys don’t cry in that time and place; they soldier through. Despite looking at first blush like a poem of extreme self-reliance, to me Invictus reads like a battle cry of strong faith in the midst of desperate circumstance.

He recognizes the reality of his illness and his grief at the loss of health and limb (the night that covers me, black as the pit) as well as the reality of his “unconquerable soul”. He graphically describes his physical and mental suffering (Under the bludgeonings of chance / My head is bloody…) and his survival (…bloody but unbowed). Looking forward, he sees nothing but more trial, more suffering, death. And then the afterlife:

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

My reading of this, which may be unorthodox, looks very much like Erich Fromm’s point in Man’s Search for Meaning. I am living in circumstances I cannot change or control, but one power will never be taken from me: the power to choose how I deal with it. And the way I deal with circumstances of necessity changes the way they affect me. It is a dynamic relationship: by changing myself I have changed reality.

There is a Jewish saying common among the Orthodox and the Hassidim: הכל בידי שמים חוץ מיראת שמים. Loosely translated, it means “Everything is in God’s hands except fear of God.” That is where free will comes in.

I can choose how I live. As a person who believes in the Christian afterlife, I believe that how I live today will affect how I spend eternity.

I am the master of my fate:
I am the captain of my soul.

Bread in the streets

Oh! God! That bread should be so dear,

And flesh and blood so cheap!  

(Thomas Hood in The Song of the Shirt)

Sack of bread (and trash) tied outside a rubbish bin.

There is a Jewish tradition that it is virtually a sin to throw away bread. Many people in Israel, at least here in Jerusalem, are very careful about putting leftover bread out in public instead of throwing it away.  There is good reason to believe that the underlying reason has to do with providing for the community’s poor, but no one I’ve asked has ever been able to find me a definitive source for this. Some people say they leave bread out “for the poor”, and others “to feed the birds”. I imagine that there are quite a few people who put their leftover bread outside because “that’s what we do”.

Josa Bivin talks about the custom in her article “Lechem – Bread” on the En Gedi Resource Center site. She writes:

The importance of sharing one’s bread with the poor has remained in the Jewish consciousness until today. Instead of dumping their bread along with the rest of their garbage into the garbage carts parked along the streets, they save the bread in plastic sacks and hang it from the metal projections on the sides of the carts. That way, the bread is potentially available to the poor.

She goes on to say that once she saw “a young, poorly dressed man” take some bread that had been left out this way. I’ve never seen anyone take it, and a person would have to be in desperate straits indeed to dig the bread out of the trash bag I saw on my street this afternoon.

If you really wanted to feed the poor, wouldn’t it be more straightforward to use the day-old bread for toast or croutons or bread pudding? Then you could give the money you save by not buying bread the next day to the local soup kitchen that provides nourishing meals free of charge to anyone who needs them.

Even if someone is desperate enough to dig a piece of bread out of that rubbish, what is the cost to their dignity? What does it say about a society that puts food for the poor in a bag tied to the rubbish bin? Not only is the poor person who has to feed himself or his family debased, but so is the giver. There is no dignity in this transaction for anyone.

At least it doesn’t go completely to waste.

Have I survived yet? Part II

Yesterday I wrote “Our words inform our thoughts, and our thoughts shape our experience of reality.” That’s not an original idea. Theories about linguistic relativity have been around for over a hundred years. A thinker who formulated similar ideas in a way that is closer to what I mean was Victor Frankl. In Man’s Search for Meaning he wrote:

We who lived in the concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.

“The last of human freedoms – to choose one’s attitude in any given set of circumstances” is not so easy to exercise. Even in my situation, which is in no way comparable to what Frankl and others went through in the concentration camps, it is hard. “Attitude” is such an abstract concept. I don’t know how to change something that I cannot touch or even adequately define, so I go about it through the side door. I change the way I talk about a situation in order to change the way I think about it, and somewhere in there that thing called “my attitude” changes, too.

Yesterday I wrote that I don’t like to use the violent, militaristic vocabulary of cancer treatment. Those words are inextricably tied to violent, militaristic thoughts. I know that many people who have cancer direct most or all of their thoughts and energy to fighting the disease. It’s not up to me to comment on their choice, but it is not my choice. I choose not to have my internal energies directed to fighting a war, with the implication that one side or the other, me or the cancer, will be defeated. Will be destroyed by the other side.

I choose to direct my energies in a different direction, to living with the disease. This is very affirming for me in a number of ways. First of all, my energies are directed to living. The quality of my life, the content of my life, the choices of my life are at the top of my priorities. The cancer is relegated to an inferior place. I pay attention to it only when it starts impinging on my choice for life and then I take appropriate measures. The cancer does not have control of my life – I do.

With the quality of my life being my top priority, I naturally look at ways to improve it. I look at my diet, my exercise, my meditation, my work, my play, my relationships… I look at these things as partners in living, not as allies in war. Does it make a difference to my recovery? I don’t know. Does it make a difference to how comfortable I am in my skin? Absolutely.

But it also raises another question. It is usual to talk about “cancer survivors”. People survive war, natural disaster, physical and psychological trauma. No one survives life. (Yes, that’s a joke. It’s okay to laugh.) So tell me: Have I survived yet?

Have I survived yet? Part I

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessonsauthor of http://www.medicallessons.net/ for the inspiration for this post.)