Post-modernist rituals and celebrations of life’s passing

Parting Ways: New Rituals and Celebrations of Life’s Passing, by Denise Carson (Berkeley: University of California Press, 2011)

Parting Ways

Denise Carson watched both of her parents die of cancer, her father when he was 37 and her mother 17 years later when she was 54 and Denise was 26.

Her dad had done everything that his doctors could devise to master the disease that gradually destroyed his body. In his final hours, with tubes connecting to his body in many places, he was rushed by ambulance to the hospital where he died in a sterile institution isolated from the people he loved.

Denise’s mother, Linda Carson, declared that for her the quality of life would be more important than the quantity. She didn’t want her life to end that way. Despite unexpected developments in her medical care, Linda’s desire was accomplished. She died in the home she loved, surrounded by people who loved her, her family, friends, and colleagues with whom she had worked.

Before her mother’s death, Denise had begun reading in the large body of literature about death and dying, the history of funeral and burial practices, and ritual theory. She became acquainted with a growing movement throughout the United States to set aside prevailing patterns and develop new ways to celebrate life and memorialize its ending.

Three years after her mother died, Linda took advantage of the Columbia University Graduate School of Journalism book class to help her shape her research into a book, Parting Ways: New Rituals and Celebrations of Life’s Passing. Although published by a university press, this is not a heavy, hard-to-read tome.

The book contains extensive narratives describing the passing from this life to the next of her parents and of a considerable number of others who have helped remake American practices related to this time in the life cycle. It recounts the stories of several people who are pioneering new approaches to medical care, celebrations of life before death, and new ways to memorialize the deceased after death has come.

Although the author clearly sympathizes with the changes that are taking place, she writes in a descriptive, declarative mode rather than in a manner that denounces conventional practice and advocates new ways. By the life experiences she recounts, she reveals the deficiencies of customary practices and opens the door to new possibilities. Among the themes that unfold in Parting Ways, several stand out for me.

For most of human history, including the United States until a century ago, dying and the care of the dead were part of the natural rhythm of family and community life. We had not yet learned how to prolong the process of dying with ever more painful and alienating medical and institutional processes. People died in the arms of their loved ones, were cared for by people of their community, and their remains returned to the elements in natural ways.

Gradually, we developed new ways of using medical processes that took the dying away from home. The care of the dead was entrusted to new institutions (funeral homes), and the embalm-and-bury method of caring for the remains came into common practice. Funeral rites, even in the churches, tended to be impersonal. (I remember being taught in seminary that the name of the deceased ought not even be mentioned during the funeral.)

Carson refers to this pattern as the modernist way of ritualizing life’s passing. It was, to some extent, brought about in response to the Civil War when new processes of embalming made it possible to return the war dead to their home communities for burial.

The post-modernist approaches have not yet settled into a common pattern. The very nature of contemporary life makes it unlikely that one set of ritual actions will become dominant. One reason is that families often are divided and their members alienated from one another. People move from one place to another and develop differing patterns of friendship and support. Uniform patterns of religious faith and practice are being replaced by a wide range of religious and non-religious ways of living.

The old authorities—doctors, funeral directors, and clergy—have been so tied to the old order that they have often been unable to guide the people of our generation as they seek for ways to be with the people who are dying and to remember them on into the years after their passing.

If there is any single phenomenon of our time that has demonstrated the need for new patterns, as the Civil War did long ago, it is the AIDS epidemic. “From July 1981 to March 1998,” Carson reports, 17,198 had died of AIDS in San Fransicso, nearly 70% of them at home. “This provided space around the deathbed uninhibited by medical professionals or any authority figures. The very nature of this disease dwelled in the dark underbelly of society. In many cases, family banishment had entrenched their alternative lifestyles, and many AIDS sufferers were divorced from religion” (p. 164).

The larger part of Parting Ways is devoted to “end-of-life celebrations and pre-death rituals,” practices that are largely missing from the modernist approach to death and dying that has dominated American life. The second part of the book discusses “post-death and memorializing rituals.”

Hurry out and get your copy. Maybe because it’s such a good book, Parting Ways is getting hard to find.

City cycling for the “modern gal”

For over a decade, Katie Dailey has bicycled around London, “one of the most congested and overpopulated cities in the world.” Despite countless hours dealing with the hazards of cycling in an urban area, she still doesn’t know “why anyone uses any other mode of transport to get anywhere.”

What surprises her is that in rush hour when she looks around she’s “almost always the only girl.” On weekends, “there are plenty of ladies riding around,” but “hardly any on the busy roads when there’s traffic about.”

Heels on Wheels is a breezy little book addressed to “the modern gal who would like to get back in the saddle after a short (or very long) hiatus.” It is guaranteed, the publisher’s blurb declares, “to make you fall in love with cycling all over again.”

The six chapter headings indicate the range of topics that Daily cycles through: Getting Started, How To Incorporate Cycling Into Your Lifestyle, Cycling Safely, Parking (Or How To Ensure Your Bike Isn’t Stolen), ‘Just One last Question…’, and Bike Maintenance.

More important than the range of issues is the way that Dailey treats the subjects:

• She writes in a trimmed down, casual, almost flippant style, with much of her phrasing drawn from what I presume is the slang style of the modern English gal. She is determined to avoid sounding like someone who represents the bicycling culture.
• She deals with basic issues such as choosing a bike that is suitable for women who want to ride comfortably, safely, and efficiently while traveling around doing ordinary things like going to work and shopping.
• Dailey explains some aspects about cycling that might be hard to understand, such as why “big, squashy seats aren’t necessarily more comfortable – the saddle that has given me the least grief in a decade of city cycling is shaped like a stork’s beak and is as hard as nails.”
• She cuts through some of the issues that arise by flat out stating her opinion as being right, thereby dismissing other ideas on the subject. Dailey is not the only writer on cycling subjects who adopts this same strategy (most of them men). Strongly opinionated myself, I agree with some of the assertions by all of these writers and disagree with others. My disagreements with Dailey may be caused, in part, because I’m a traditional American guy who rides hard rather than a modern English gal, who rides around town all of the time.

Dailey’s chapter on riding safely states a point of view that is clear, firm, and right for all cyclists who are old enough to cycle on city streets and other public roads. “The key way to be safe on the road as a cyclist is to be as visible and assertive as you can possibly be.

“Recent studies have suggested women are more likely to get hit on the roads because we cycle prudently and unassertively – tucking ourselves into the pavement where we can’t be seen and hanging back at traffic lights.”

She counsels her readers: “Position yourself at the front of the traffic at lights and never, EVER pavement hug when it comes to a turn as you simply won’t be seen by big vehicles turning left [which American readers should translate as “right”].

As the above quotation and note illustrate, the chapter on cycling safely, which I find to be forthright and correct in its major content, is written for English readers who drive on the left side of the streets. Dailey explains that the book “is written from a leftie point of view, i.e. right hand drivers on the left-hand side of the road. Simply reverse the instructions if you drive on the right.”

If publishers want American gals to make full use of the book, they should publish an edition that does the reversing so that the readers don’t have to. An American edition would benefit from translation of some of the slang into language more likely to be understood and appreciated by modern gals whose English is common, everyday American.

Because Dailey writes for women, she discusses several topics that do not pertain to men—cycling when pregnant and cycling in skirts and high heels, for example.

Even so the book has much to offer to the modern guy who has been thinking that he ought to get back to biking. The book reads quickly, and guys as well as gals will be helped as they try to choose a “trusty steed, stay safe on the road, fix a puncture and select the best lock” for their bicycles.”

When even doctors think drug prices are unethically high

The Lance Armstrong blood doping scandal alerted me to a book that portrays serious problems in the functioning of America’s health care system: Blood Medicine: Blowing the Whistle on One of the Deadliest Prescription Drugs Ever, by Kathleen Sharp. The gist of her story is that the drive for maximizing profits led two pharmaceutical companies into fierce competition over marketing a drug that one of them had developed.

Sharp portrays years of unethical behavior and frequently illegal and sometimes death-causing behavior by sales representatives, physicians and medical clinics, hospitals and research institutions, and governmental regulatory agencies. The drug at the center of the feud was EPO, a relatively new drug that increases the production of red blood cells.

Although I had read the book in order to understand the use of this drug to enhance athletic performance, Sharp’s narrative had an unintended effect: it caused me to worry about the trustworthiness of the doctors, clinics, and other medical providers to whom our family turns for medical care.

This uneasiness was especially troubling because it came at a time when my wife would be resuming aggressive treatment of a cancer that will remain with her until the end of her life.

Her oncologist was suggesting that she enroll in a study that would help researchers evaluate an “investigational drug.” It was not known whether the drug “is save and effective,” nor had the drug been “approved by the Food and Drug Administration.”

Her physician is gentle, careful, thorough, and forthright. Everything about her inspires trust, and the therapies she has recommended have enabled my wife to continue her chosen way of life longer than statistical tables give reason to expect.

But I couldn’t get Sharp’s book out of my mind. On a website that reports payments to physicians by research institutes, I saw the modest amount our doctor had received for research activities during the previous reporting period. It is easy to believe that a competent physician in a cancer clinic that specializes in research could earn stipends in that amount in ways that are completely ethical and uncompromised.

In this context, any news that can strengthen trust is good news. Recently 100 physicians around the world who specialize in a dangerous form of leukemia attached their names to an editorial published in Blood, the journal of the American Society of Hematology. Their statement made the news in Portland because Brian Druker, one of the signatories, is based at a research medical center in our city and helped develop one of the drugs mentioned in the article.

These cancer experts discuss factors that are involved in setting the price of cancer drugs and the impact that these prices have on patients and on the entire health care system. They believe that the prices of these drugs need to be lowered so that more patients can afford them and our health care system can remain sound for years to come.

Especially interesting is the distinction they draw between two ways of setting prices. The doctrine of Justum Pretium (just price) holds that prices should be determined by “fair value.” They should be “proportional to the benefit to patients in objective measures.”

The doctrine of free market economics holds that prices are based on what people are willing to pay.

These physicians state that when drugs affect the lives or health of individuals, just price should prevail. When commodities are not essential to life or to alleviate suffering, free market economics can prevail. Nobody has to buy a luxury car or take a cruise, but who can choose not to undertake treatments that can control chronic medical conditions?

The 100 cancer experts discuss the ways that drugs are priced and the wide range of prices in various parts of the world. They are clear in stating their consternation with the current situation, and they outline some of the measures that they believe could bring relief to cancer patients and protect our nation’s health care system.

They conclude their editorial by stating that they propose to begin a dialogue “by organizing regular meetings, involving all parties concerned,” in which they would discuss reasons for the high prices of cancer drugs and consider solutions to reduce these prices.

My own conversations with medical providers lead me to believe that the concerns over the high cost of medical care are widely spread among doctors, nurses, and others who work directly with patients and their families. They too are troubled by artificially high costs that are billed to patients, often causing significant hardship to people suffering from serious health challenges.

My hope is that public attention will continue to focus upon the ethics of pricing medical care and that the public debate about these matters will continue so that researchers, medical providers, executives in the health care industry, hospital administrators, governmental policy makers and regulators, and even politicians in statehouses and the nation’s capitol will work together to make things better.

When it comes to pricing cancer drugs, better almost always means cheaper.

Note: This final paragraphs of this essay have been revised since the essay first was posted. 

Giving the Hebrew bible another read

Yorum Hazony, The Philosophy of Hebrew Scripture (New York: Cambridge University Press, 2012)

About twenty years ago, when I was in my early 60s and dealing with mild depression, I decided that it finally was time to read straight through the Bible, beginning with Genesis 1:1 and finishing at some later date with Revelation 22:21. I got as far as Judges. The bloody narratives, many of them describing actions incited by the warrior God of the conquering Hebrews, were more than my flagging spirit could manage.

Although I continue to read from the New Testament, especially the letters of Paul, the gospels, and Acts, it is as though the pages of the Hebrew Scriptures in my personal Bible are pasted together. Will The Philosophy of Hebrew Scripture (Cambridge University Press, 2012) by a highly acclaimed young Israeli scholar, I am wondering, help me start over with the thirty-nine writings in the first part of my Bible?

Yorum Hazony, provost and senior scholar at the Shalem Center in Jerusalem, believes that the texts of Hebrew Scripture are best read as “works of reason or philosophy.” The question of whether this can be done, he says, in the next to last paragraph of the Appendix, takes this form: “Do they engage in the effort to derive and make known to us the general causes or natures of the things encountered in human experience? Are these general natures used in attempts to establish principles or laws of general applicability concerning the world of our experience? And do these find application in particular instances, or to substantiate the truth of the principles and laws in question” (p. 273)?

In the final paragraph, Hazony states the one premise upon which he bases his constructive argument: “As soon as one recognizes, as I have suggested, that metaphor, analogy, and typology are in fact means by which the author of a work can establish positions with respect to general causes or natures, it becomes easier to see that the great majority of the biblical authors, and perhaps all of them, are indeed engaged in reason; and that it is the exercise of reason, which we find almost everywhere in the Hebrew Bible, that I’ve sought to depict in my inquiries into the ethics, political philosophy, epistemology, metaphysics, and faith of the Hebrew Scriptures as presented in Part II of this work” (p. 264).

Hazony believes, however, that the Hebrew Scriptures do not receive the respect they deserve from readers today, especially those with recognized competence in philosophy. Much of the book, therefore, is devoted to describing and counteracting the reasons why the ancient writings of his people are dismissed as works of reason.

One of these reasons is cited above, the form of these writings. They abound with references to the words and actions of God, which for many readers make them into works of mythology or divine revelation, incapable of being read as serious works of reason. Hazony quickly dismisses this argument by showing how many of these same skeptical readers seem not to be troubled by the obviously mythological format of Greek and Roman treatises that they acclaim as among the most important works of reason in the history of human thought.

If Greek writings can be read as works of reason despite their mythological format, he insists, then writings in similar form in other traditions, including the Hebrew, can also be read philosophically.

Far more important in Hazony’s explanation for this lack of respect is what he alleges is the misreading of Hebrew Scripture by Christians and the baleful effect this prejudicial attitude has had on the Western intellectual tradition. According to Hazony, Christians divide religious writings into two categories: reason and revelation. Revelation comes directly from God and is to be accepted as given. In contrast, reason is a human construct, always subject to error, always inferior to revelation. Even if one were to agree with this distinction, Hazony counters, this dialectic is irrelevant to the proper understanding of Hebrew Scripture. These documents were written prior to the emergence of the reason-revelation dichotomy in the Western intellectual tradition. Continue reading. . .Hazony-Philosophy

How much should it cost to live a little longer?

“We’re excited about this new drug,” my wife’s oncologist told us a few months ago. “Studies indicate that it actually extends patients’ lives.” That’s what we wanted to hear, especially since she had already been under treatment for six years.

In the new regimen, there would be two treatments every three weeks. She started in December 2012.

A couple of months later, the paper work started coming so we could see what this drug was costing: statements of charges from the cancer center, explanation of benefits from our insurance company, and bills from providers for the small portion of the total charges that remained for us to pay.

Here’s when sticker shock set in. For the first injection of this life-extending drug, the drug itself was billed at $4,050 and other procedures and medications added $691 to the billing. The total billed charge for this first treatment: $4,741.

Multiplied by 34, the number of treatments we could anticipate in a year’s time, the billed charges would total $161,194. During the course of her treatment, dosage was adjusted downward so that the frequency of treatment could be maintained, and the billed cost was reduced accordingly. Even with the reduced cost of the principal drug, billed costs for a year would be above $100,000. A challenge for any family!

Here’s where our Medicare-based insurance company stepped in. First, it dramatically reduced the charges. The allowed cost of the new drug was reduced by 33%, and other billings were reduced by 66%. Instead of costing the billed charge of $4,741, this one visit to the cancer clinic would cost $3,007.21, with our copayments covering 10% of that amount.

Following this pattern of reduced dosage and discounting of billed charges, the actual cost of treatments from December through February totaled $19,336.12, which included our 10% copayments. Projected for a full twelve months, this treatment regimen would cost about $80,000, of which we would pay about $650 per month.

Pricey! Yes, but it extends life, our oncologist had told us. How much? I wondered.

My online research gave the answer: two and a half months when compared with alternative drugs that oncologists in the studies used.

After four three-week cycles, in which eight doses of this life-extending drug were administered, our oncologist ordered a scan to see how well it was working. It was not, and further treatments with that drug were cancelled.

Our family’s current experience with the medical industry has several positive aspects. Most important is the fact that the skilled care my wife has received has kept her going at a high level despite the life-threatening cancer with which she is living. Furthermore, all of the medical providers, and there have been many of them, have cared for her (and me) in gentle, friendly, supportive, and highly professional ways.

Another positive factor is the fact that Medicare-supported health insurance takes the financial sting out of the costs of our medical care. It cuts through outlandish billed charges, reducing them to bills that are reasonably close to the actual costs of providing the services. Because of our insurance, we can absorb the high cost of living a little longer without jeopardizing our way of life.

This experience with cancer billings, however, raises questions. Most important is this: why is there such a discrepancy between billed charges and cost-based charges for medical care? A more sharply focused question: why are the new “life-saving” drugs priced so high?

The conclusions that I have drawn on the basis of our family’s recent experience are confirmed by an article published in Blood, the journal of the American Society of Hematology. 100 experts in the treatment of chronic myelogenous leukemia have signed this article, among them Brian Druker, a Portland physician who helped develop one of the drugs that he and colleagues around the world discuss in the essay.

Referring to a group of drugs used to treat this cancer, they state their belief that “the current prices of CML drugs are too high, unsustainable, may compromise access of needy patients to highly effective therapy, and are harmful to the sustainability of our national healthcare systems” (essay prepublished online April 25, 2013).

It’s not just the drugs that cost too much. The March 4, 2013, issue of Time published a special report by Steven Brill entitled “Why Medical Bills Are Killing Us.” He examines medical bills from several patients representing important sectors of the medical industry and explains why billed charges and actual costs differ so dramatically.

A much longer, and even more unsettling, discussion of some of the same factors was published in 2011 by Kathleen Sharp in her book, Blood Feud: The Man Who Blew the Whistle on One of the Deadliest Prescription Drugs Ever.

Regardless of our current age and level of health, irrespective of our politics or economic theories, all of us need to give serious attention to these matters. One way to start is to become acquainted with the documents mentioned above. In future postings, I hope to introduce them further.

By the way, my wife has started another treatment program but it’s too early to evaluate how well it’s doing.

40 years with bike nashbar

 

40 years ago, I was in the early stages of becoming a strong adult cyclist. My son Mike and I had entry-level ten-speed Raleighs and were reading about bikes, doing vigorous training rides, and beginning to think about tours like Ohio’s Tour of the Scioto River Valley.

We had already subscribed to Gene Portuesi’s mail order catalog, Cyclo-Pedia which had started publication in 1937, and were learning about exotic components that were no where to be seen in bike shops in Indianapolis where we lived. Portuesi’s catalog included strong advice about touring and many aspects of serious club cycling.

At this point, Arni Nashbar in Youngstown, Ohio, started his own mail order business by publishing a catalog entitled bike warehouse. Early in its run, we put our names on the mailing list, and it’s been coming to my mailbox ever since. About ten years later, the name changed to bike nashbar, the mailing address has changed to Crab Orchard, West Virginia.

Another young entrepreneur, Chuck Sink of Marion, Indiana, started another mail order business from his home north of Indianapolis. We received his catalog during the short period of time that Chuck stayed in the business.

Mike and I visited the small show room in his home, and that’s where I first saw a Mercian frameset, a bright red work of art. A year or two later, I bought a blue Mercian with beautiful lugwork at Action Sports, a bike shop in Beaverton, an upscale suburb of Portland, my home town.

Catalogs in the early days differed greatly from the garish, glossy publications that come through the mail now. As the 40th anniversary issue of bike nashbar explains, “the original issues had pages full of line-drawings, product listings, and the occasional photograph of models in shorty-shorts and jersey graphics best lost in time.”

My list has three items that depict the changes in catalog design and character.

• In contrast to the full color productions now published, the early catalogs were printed in black and white on off-white paper. Illustrations were largely line drawings or sketches.
• The early catalogs tried to tell readers all that they would need to know about the items described. Since the internet was not yet a part of ordinary life, additional information could be obtained only through long-distance phone calls.
• Most of the catalog was devoted to accessories and equipment, with only a few pages describing the short list of jerseys and chamois-lined wool shorts.

I don’t know why bike nashbar still comes to my house since I rarely buy anything from the catalog. Bike shops abound in Portland, and I can usually find exactly what I want, with the benefit of advice from knowledgeable personnel. Buying from bike shops costs more most of the time, but I get personal treatment, some of it gratis because I’m a regular. Bike shops have sales, too, so careful shopping keeps costs reasonable.

I’m glad to get bike nashbar every now and then. It gives me a sense of what’s happening in the bike market. Even though much has changed in these 40 years, the anniversary issue of the catalog says, “Arni’s desire to provide value cycling goods never wavered.”

My congratulations to a long-lived publication in the American bike world. As long as bike nashbar keep coming, I’ll keeping reading it. And maybe even buy something now and then.

“Symbolic healing” on a Sunday when we really need it

When a member of my church began the morning prayer on the Sunday following a terrible week, I knew I had come to the right place.

“This has been a horrific week,” he began, “with bombings at the Boston Marathon where three were killed and 170 were injured, a police officer later assassinated, a bombing suspect killed, and then the chemical explosion in the community of West, Texas, where fourteen were killed including firefighters and rescue workers, and 200 injured. Then an earthquake took the lives of more than 150 people and injured 5,550 others in China.”

He invited us to join together in a time of silence and remembrance for the victims and families, after which he offered a long prayer, with words carefully crafted. A few minutes later, our pastor (who last week told us that being nice is good enough) preached a gentle, emotionally charged sermon about God the Good Shepherd.

So what’s the point of all these prayers and sermons in church when the world is torn apart by horrendous pain and suffering? At home after church, while pondering this question, I came across an answer in I. M. Luhrman’s op-ed column “The Benefits of Church,” which she posted April 20 in the New York Times. Luhrman is a professor of anthropology at Stanford and the author of When God Talks Back: Understanding the American Evangelical Relationship With God.

 “We have increasingly better evidence,” she writes, “that what anthropologists would call ‘symbolic healing’ has real physical effects on the body. At the heart of some of these mysterious effects may be the capacity to trust that what can only be imagined may be real, and be good.”

While Luhrman refers to her research in evangelical churches, symbolic healing also takes places in liberal churches like the one where I worship. Here is the prayer that is helping me trust that a peaceful world, something I can only imagine, may be real and at sometime in a future we can only imagine come to pass.

“Creator God and Life-giving Spirit: We gather on this Lord’s Day with Easter only days behind us. While Easter was a time of new awakenings, this past week has been an occasion of both death and new life. Our eyes and minds have been bombarded with images of violence, destruction, injury, and death. We have been filled with both hurt and happiness.

“It is difficult to imagine the historic city of Boston being shut down, the people terrorized and living in fear. It is just as difficult to imagine an entire town on the plains of Texas being blown away by a chemical explosion.

“We come today remembering and praying for our sisters and brother. Our hearts go out to those who lost loved ones and whose lives will be forever changed. With your tender mercies bring healing and wholeness to their brokenness.

“O God, our great Shepherd, healer and helper, we also remember today those who are ill, hospitalized, convalescent, or homebound. We remember those who grieve—the loss of companions and loved ones, the loss of strength and youthfulness, the loss of quality of life.

“We remember the lonely who need friendship, those whose hearts and lives are broken , those who live with their addictions, those needing food, clothing, shelter, and medical care. With your tender mercies bring healing and wholeness to their lives.

“O God of hope and encouragement, enable us to see the world not only as it is but as it can be. Give us a vision of families living together in a global community where there is peace with justice for all, sufficient food and water, housing, education, and healthcare. Teach us the joy of giving and the dignity of caring.

“Use our humble gifts to build a better humanity. Let us never lose sign of the purposes you have for our lives, and grant us the strength to obey your voice. In the spirit of Jesus of Nazareth, our elder brother and friend, we pray. Amen.”

Following public disasters like the Boston Bombings, public officials encourage us to continue our normal patterns of life, vigilant but unafraid. And we want to live that way. What the public officials cannot easily do, however, is provide the symbol healing that gives the spirit of trust in the reality of the world that can only be imagined.

By themselves, prayers are not enough. What must follow is the constant, hard work of seeking justice, overcoming all that causes pain and suffering, teaching, and building. All of this we have to do. But in order to engage in these labors, we need to believe that what we do can make a difference. The disease we face is cynicism, the inaction  that comes from believing that nothing good can be done.

The healing symbols of hopeful expectation enable us to move past our illness into new life.