KNOCKING ON HEAVEN'S DOOR by Katy Butler

On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill. She'd just poured me a cup of tea from her Japanese teapot shaped like a little pumpkin; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. "Please help me get your father's pacemaker turned off," she said. I met her eyes, and my heart knocked.

That's the first paragraph of Knocking on Heaven's Door, Katy Butler's memoir about caring for her parents in their declining years. If you have ever taken care of a demented or dying loved one, or if you know somebody who has done so, you should read this book. If your paycheck comes from the healthcare sector (now 18% of the U.S. economy), or if you find that even the reduced insurance rates under Obamacare are too high for your budget, you really should read this book. Like all good memoirs, it's about so much more than one person's experience.

Jeffrey Butler, a retired Wesleyan University professor of history, had dodged death several times--as a teenager, when he arrived seconds too late to jump into a car carrying several of his friends to a fatal crash; as a young soldier in Italy during World War II, when he nearly bled to death after a German shell blew off his left arm; and again in his late 70s, when a sudden stroke left him helpless.

His wife, née Valerie de la Harpe, was also a survivor. In her forties, she discovered a walnut-sized lump in her left breast. It turned out to be malignant, and her subsequent radical mastectomy--which removed not only the breast but also much of the chest wall and four cancerous lymph nodes--revealed the possibility of further metastasis. After enduring six months of radiation treatments, she chose to have her right breast removed as well. Her cancer did not recur.

Katy, their daughter, was no stranger to loss either. For much of her life she had an on-again-off-again relationship with her challenging parents and her semi-estranged brothers. After a divorce in her 20s, she had trouble committing to a new love. And yet, like her parents, she repeatedly picked herself up and kept going, creating a career as a memoirist and investigative journalist.

But experienced as the Butlers were in suffering and loss, they were not prepared for the technologically enhanced torments of old age.

Knocking on Heaven's Door tells what can happen when a person's mind and body endure a series of shocks that would naturally lead to decline and death--except that, through various technological interventions, the body is not allowed to decline along with the mind.

In Professor Butler's case, a major stroke wiped out most of his ability to function independently and set him on the road to dementia. At the same time, his heart was slowing down. A year after his stroke, over the opposition of his primary care physician, Butler was fitted with a pacemaker. His cardiologist strongly recommended it. He needed hernia surgery, the doctor said, and his heart was not likely strong enough to survive the operation. So he had the pacemaker installed, he had the surgery, and he was rewarded with another six years of increasingly hellish existence--not only for himself, but also for his wife and his daughter. His mind was shot. His body would not do what he wanted it to do. But his artificially assisted heart kept relentlessly ticking away.

Not long after her husband finally died, Valerie Butler, then 84, learned that her own heart was giving out. She would need a double-valve surgery plus a bypass operation, her doctor told her. Without surgery, she had a 50/50 chance of dying within two years. With surgery, she could live another six. There was, however, a risk of stroke ...

Valerie Butler said no. She died within months.

She died of old age, sickness, and death [Katy writes]. She died of a heart calcified and broken by six years of nonstop caregiving. She died of being eighty-four. She was continent and lucid to her end. She took back her body from her doctors. She died the death she chose, not the death they had in mind. She reclaimed her moral authority from the broken medical system that had held her husband hostage. She died like a warrior. Her dying was painful, messy, and imperfect, but that is the uncontrollable nature of dying. She faced it head-on. My brother Jonathan called it a triumph.

This is not a book about assisted suicide or euthanasia. Do not read it to find ammunition for or against whatever you believe about those ethical issues, because that is not why Katy Butler wrote it. It is partly a very personal memoir about an already troubled family who found caregiving much, much harder than they ever expected. It is partly a love letter to the father Katy alternately fled and adored, and to the mother she admired but could not get along with. It is also a look at what the contemporary American approach to healthcare is doing to elderly people and to those who care for them.

And it is a clear-eyed recognition of a truth so many of us try to avoid: that it is our nature to die, that there is nothing we can do to escape death. Thanks to technology, we may be able to postpone it. We may be able to make the dying process take a lot longer (and be a lot more miserable). We can choose to add weeks to our lives and hundreds of thousands of dollars to our hospital bills by dying in an ICU rather than in hospice or at home. But we can't stave off the grim reaper forever.

If we refuse to accept our mortality, if we are willing to pay any price and bear any burden to make our lives longer (though not better), if we continue to pass healthcare laws that refuse to subsidize doctors for discussing end-of-life issues but that give carte blanche to businesses that value corporate profits over compassionate care--then death will continue to be not only an enemy, but an increasingly ferocious one.

What do you mean, "middle-aged"?

[Stages of a Man's Life from the Cradle to the Grave, c. 1848]

Yesterday on Facebook I referred to my daughters, who are in their early forties, as middle-aged. One of their friends, who is 43, wrote, "Middle-aged???"

"For sure," I wrote back. "I know it hurts." But then I Googled middle age and discovered that its borders seem to be shifting. Once defined as ages 40 to 60, it is now often defined as ages 45 to 64 (though Merriam-Webster wants to have it both ways).

When I turned 40, everyone was talking about the midlife crisis, that scary feeling when people in the work force fear their careers may have peaked and when caregivers at home notice their nests are practically empty (except for all that stuff in the basement). Midlife hit at age 40 back then--a bit optimistic, perhaps, considering that U.S. life expectancy in 1988 was 74.9 years. Columnist Bob Greene may have been closer to the truth when he wrote that "middle age starts at 36."

American life expectancy has increased in the last 25 years: it's now 78.62 years. I suppose that makes the shift in middle-age limits understandable, especially since so many people nowadays seem to think adulthood doesn't begin until age 30. But still, isn't Bridget Jones a bit old to be having a midlife crisis at age 51? And what's with those Brits who, in a 2012 survey, thought middle age begins at age 55 or later? Brits do live longer than Americans, but only by a couple of years.

In her lively review of Patricia Cohen's In Our Prime: The Invention of Middle Age, Laura Shapiro suggests why the definition of middle age is so fluid:

Despite the fact that researchers have been studying middle age intensively for decades, the term itself seems to have no fixed definition. Nearly any span between 40 and dementia appears to qualify, depending in part on whether we’re talking about ourselves (“But I feel just the same as I did when I was 20”) or all those people who show up at our college reunions (“Everyone looks so old”).

This is probably why some people prefer a descriptive rather than a chronological view of middle age: see, for instance, Shelley Emling's article "40 Signs You Are Middle Aged." The list is amusing, but the really telling comment comes in her introduction, where she quotes Paul Keenan, head of communications for a healthcare provider. "People no longer see ‘middle age’ as a numerical milestone," he said. "I’m 54 myself, with the mind-set of a thirty-something--perhaps sometimes even that of a teenager!” If anything is a sure and certain indication of middle-age--or even old age--it's a remark like that.

Maybe it's because, at 65, I've just left the ranks of the middle-aged, but I don't see why people want to delay its onset. By the time you're middle-aged, you've probably finished your education and those painful first jobs. Chances are you're in a responsible position, earning more money than you were a decade or two ago. You're probably married. You very likely own a house. If you have children, they are becoming more independent. Your parents are probably still in reasonably good health.

At 40, you are well past the torments of adolescence and young adulthood, and you still have a long way to go before the serious trials of old age begin. You are at the midpoint of your allotted years and at the beginning of an excellent couple of decades. Why pretend to be young long past the time when anybody who is truly young would claim you?

Believe it or not, those truly young adults respect you. They think you may have learned something in the 15 or 20 years since you left college. At the same time, you're not in an entirely alien world like, say, their parents.

In 1935 Will Rogers starred in a movie called Life Begins at Forty. I suspect it still does.

A Canadian who loves her health-care system

This morning a Canadian woman wrote such an interesting comment on an old post of mine, "Rationing is not a four-letter word," that I want to share it with you. I don't know the author, her full name (though she tells me her first name is LaVonne, so she's obviously a great person), or her contact information, so I can't give her full credit. But thanks, LaVonne-in-Canada: I learned a lot from you.

Here's what she wrote about how Canadian health care works for her. I've added a few comments in red, in case you want to compare the situation of LaVonne-in-Canada with that of LaVonne-in-the-United-States.

As a Canadian, I can't understand why a medicare plan such as we have is not feasible in the USA.

As a a retired person, I pay $65/mo. When I was working, it was less - employer paid a touch more than half. [As an American retired person, this year I paid $265.85/mo--that would be $104.90 for Medicare Part B (medical insurance), $44.10 for Medicare Part D (prescription insurance), and $116.85 for Medigap Plan G (to cover Medicare's very high co-pays). When my husband was employed, my insurance cost was half that amount because his employer paid about 3/4 of the total cost--but three months ago, the employee's cost for that policy at least doubled.]

Since 2008 I have had two major operations which didn't cost me anything except $35 per day for a private room in the hospital (my choice...a 4-bed ward would have been free). [In 2011, before going on Medicare, I had a major operation which cost me $2,111.35, which seemed like a real bargain since the hospital bill was originally $172,833.97. Insurance agreed to pay $116,748.28. Earlier this year--again, before going on Medicare--I had an outpatient procedure that cost me nothing, even though the hospital bill was originally $47,914.28. Insurance agreed to pay $15,763.77. It's a strange way of doing business.]

Moreover, no charge to Canadians for doctor's office visits. We don't have to delay need for care, might save worsening condition. [Because I bought a Medigap policy (Plan G), I first pay a $147 yearly deductible, after which I am not charged for doctor's office visits. Under our former Blue Cross Blue Shield plan, I was charged $20 to see my primary care provider and $40 to see a specialist.]

We have a population of less than 35 million. Our population can support a universal healthcare plan. The USA has more than 10 times the population of Canada. Surely 350 million people can support a universal health care plan successfully - many more people to pay into it, and as well, more healthy employed people than sick people by far to support the plan, I should think.

By the way, my $65/mo covers 60% of my dental care, too, however this is an option my former employee-plan (union job) allowed me to take. If I'd wanted to pay in more, I could have opted for 80% dental coverage, or 100%. Medicare without the dental would cost $57/mo.(rather than $65). [Alas, my $265.85 includes no dental coverage. And even though I pay for prescription insurance, I also pay out-of-pocket for prescriptions: in my case another $57/mo as long as I don't need anything next year that I'm not already taking.]

Do you think that if your legislators could corrall Big Pharma and Big Insurance Co., that maybe your country could get something even better going? The current Obama-care is not the whole way your President wanted to go (he wanted something more along the lines of the Canadian plan) but he was hog tied, he had to compromise.

We are not socialists in Canada. We have a capitalist system, too. However we don't fret at the thought of socially subsidized provision for people's health, and I think as a consequence we might have a healthier population. The Native Indian people in Canada have totally free healthcare - they don't have to pay any monthly premiums at all.

Now if you happen to think that the Affordable Care Act (aka Obamacare, in spite of what Jimmy Kimmel's interviewees believed) will give us a Canadian system, please, please, please read "Obamacare vs. Canada: Five key differences." The two systems are very, very different--and the differences help to explain why I pay hundreds of dollars more a month than LaVonne-across-the-border, and get significantly less.

And if you're itching to point out that Canadians have to wait longer than Americans for health care, or that Canadians stream over the border to American hospitals, or that Canadian seniors can't get hip replacements, please, please, please read "5 Myths About Canada's Health Care System" and learn what is really happening across our northern border. It's probably not what you think. It's certainly not what the U.S. anti-health-care lobby wants you to think.

These are short articles. You have time.

The truth is, as LaVonne-in-Canada noted, the Affordable Care Act is not exactly what President Obama wanted. He had to compromise, and as a result, Obamacare is not nearly as effective as Canadian health care--though it's somewhat better than what we had before. And Canadian health-care benefits aren't as amazingly good as, say, French or Swiss benefits (which still cost considerably less than ours, by the way), though if our aim is to keep costs as low as possible while still insuring everybody, we still  might choose to imitate Canada rather than some of the more generous countries.

But until the American people come to realize that our current mishmash of a system is costing them a lot more than a more centralized system could--and until our lawmakers find the courage "to grapple in a systematic fashion with the overall inefficiencies in health care delivery and financing, the administrative burden of multiple payers, providers and plans, and the cost pressures of defensive medicine," as the "Obamacare vs. Canada" article suggests--we will keep on paying more, getting less, and regularly shutting down the U.S. government and (who knows?) maybe crashing the entire world's economy.

Let's talk about food: The body of Christ at the nursing home

[Pieter Breugel the Elder,
Portrait of an Old Woman, 1563]

Deliver us from the presumption of coming to this Table for solace only, and not for strength.

--Book of Common Prayer, from Eucharistic Prayer C

I would like to finish this series of posts with a story about what the Eucharist meant to me during a difficult time about 20 years ago.

My mother had suffered a series of small strokes. She had Alzheimer's Disease as well, and she was seriously depressed. I had moved her into a nursing home near my house so I could visit her frequently.

At that time I was going to Mass almost daily. I needed the solace of the quiet half hour every morning. When my parish offered to train people who wanted to become ministers of communion (parishioners who help distribute the bread and wine), I signed up.

Holding up the consecrated bread and saying "The body of Christ" was easy, as was handing the cup to each person in line so they could drink from it. But some parishioners prefer to have the bread placed directly in their mouths, and that's trickier. The idea is to put it gently on their tongue without getting bitten.

We practiced with one another, the pretend communicant opening her mouth and, ideally, sticking out her tongue; the pretend minister of communion laying the host on it. When we got the hang of it, our training session concluded, and I drove directly to the nursing home to visit my mother.

It was dinnertime at Sandalwood. Mother was in a wheelchair at her table, unable to feed herself, able to swallow only with difficulty. I was not good at getting her to eat, but no attendant was available. So I sat down next to her and picked up a spoon.

I dipped the spoon in the strained spinach and held it up for her to see. She opened her mouth. I put the spinach on her tongue.

I almost said, "The body of Christ."

As I think back on that moment, I see layers upon layers of symbolic meaning. I'm not going to list them or explain them. I'll just say that as I fed spinach to my mother, I suddenly understood a lot more about what I'd been doing in church just 30 minutes earlier.
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This is the last in a series of short posts especially for people who attend St Barnabas Episcopal Church in Glen Ellyn, IL, where I led or will lead conversations about food on September 22, September 29, and October 6. I posted about food every weekday between September 13 and October 4. The first post in the series is here.

Let's talk about food: Practicing the Presence

[Jordaens, The Supper at Emmaus, 1645]

And now back to food as sacrament--what we'll be talking about this Sunday at St Barnabas. In Monday's post I wrote, "A sacrament points to something beyond itself, but it is more than a sign. It has multiple layers of meaning, but it is more than the religious version of a symbol. A sacrament is a special kind of symbol that actually makes present the reality it evokes." The sacrament of bread and wine, then, in some way makes Jesus Christ present.

How does that work?

Catholics still use a medieval explanation called "transubstantiation." Lutherans speak of  "sacramental union." Calvinists talk about "spiritual presence." Other Protestants use terms like "holy mystery" or "real presence." Orthodox Christians like the word "mystery" and, as far as I know, don't try too hard to explain it. Many evangelical Christians celebrate the Lord's Supper but don't really believe in sacraments at all (my husband once referred to their theology as the "real absence"). Anglicans, as John Cleese wittily pointed out in his "Consumers Guide to Religion," have a democratic spirit--"if you want transubstantiation, you can have transubstantiation. If you don't want transubstantiation, you don't have to have transubstantiation. All you do is go down the road to another Church of England church and not have it."

I'm not going to argue for or against any of these positions. I rather like the quatrain that probably originated with John Donne but is usually attributed to Elizabeth I:

’Twas God the word that spake it,
He took the bread and brake it,
And what the word did make it,
That I believe and take it.

Whatever our theology about sacraments, most Christians agree that

• eating together fosters community
• the Christian community is "the body of Christ" (1 Corinthians 12:27)

The earliest Christians "devoted themselves to the apostles’ teaching and fellowship, to the breaking of bread and the prayers" (Acts 2:42). Somehow when they broke bread together, Jesus was present with them and in them, and they were present in him.

Bread and wine are dynamic symbols. Sharing bread and wine is a powerful sacramental act. All explanations inevitably fall short, as the disciples on the Emmaus Road discovered. Only when they broke bread with the stranger did they realize who he was.
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This is part of a series of short posts especially for people who attend St Barnabas Episcopal Church in Glen Ellyn, IL, where I'm leading conversations about food on September 22, September 29, and October 6. I'll post about food every weekday between September 16 and October 4.

Let's talk about food ... and wine!

[Caravaggio, Bacchus, 1596]

A meal without wine is like a day without sunshine.

--Brillat-Savarin, or maybe an Italian proverb

 

I enjoy wine. But I readily acknowledge that some people should not drink wine: recovering alcoholics, of course; drinkers who don't realize they're alcoholics; people taking certain medications; people who are about to drive cars or pilot airplanes; children; and so on.

To be fair, there are people who shouldn't eat bread, either, though not as many.

Yes, wine can be dangerous. In scripture and other literature, it can indicate evil and punishment and terror.

In the Bible, wine sometimes accompanies wickedness and judgment. For example, the Psalmist writes that "in the hand of the Lord there is a cup with foaming wine, well mixed; he will pour a draught from it, and all the wicked of the earth shall drain it down to the dregs" (Psalm 75:8).

St. John of Patmos says that Babylon--herself a symbol of corrupt governments and multinational corporations--"has made all nations drink of the wine of the wrath of her fornication" (Revelation 14:8; 18:3).

In "The Battle Hymn of the Republic," Julia Ward Howe uses wine production as a double symbol, evoking both the Last Judgment and the American Civil War: "Mine eyes have seen the glory of the coming of the Lord; / He is trampling out the vintage where the grapes of wrath are stored."

But more often, wine brings to mind abundance and contentment and friendship.

Hear Moses' final blessing on his people: "So Israel lives in safety, untroubled is Jacob’s abode in a land of grain and wine, where the heavens drop down dew" (Deuteronomy 33:28).

And the Preacher's summary of a good life: "Go, eat your bread with enjoyment, and drink your wine with a merry heart; for God has long ago approved what you do" (Ecclesiastes 9:7).

And the delightful quatrain by Hilaire Belloc:

Wherever the Catholic sun doth shine,
There’s always laughter and good red wine.
At least I’ve always found it so.
Benedicamus Domino.

A drink that can evoke friendship and anger, blessing and corruption, joy and addiction, holiday relaxation and highway death, family harmony and family destruction--what a symbol!

In Prince Caspian, Book 2 of The Chronicles of Narnia, C.S. Lewis describes the Pevensie girls' reaction to a wild party with river gods, forest goddesses, maenads, Silenus, and Bacchus himself:

"I wouldn't have felt safe with Bacchus and all his wild girls if we'd met them without Aslan," [said Susan].

"I should think not," said Lucy.

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This is part of a series of short posts especially for people who attend St Barnabas Episcopal Church in Glen Ellyn, IL, where I'm leading conversations about food on September 22, September 29, and October 6. I'll post about food every weekday between September 16 and October 4.

Let's talk about food: What does bread mean?

[Salvador Dali, Basket of Bread, 1926]

Bread is an especially rich symbol (see yesterday's post about how symbols have many layers of meaning).

Imagine

● a freshly baked, crusty baguette
● a thick slice of heavy brown bread, warm from the oven
● two loaves of challah at the beginning of Shabbat dinner
● scones with clotted cream and jam

--or, on the other hand,

● a dry crust
● crumbs
● day-old bread
● Wonder Bread

I'm guessing you quickly moved beyond taste and smell to highly personal associations--places, people, feelings, stories evoked by thinking about bread. Symbols invite you to do that.

Consider also some of the many Bible stories that feature bread:

● Passover with its unleavened bread
● The manna that fed the Israelites in the wilderness
● The miracle of the loaves and fishes
● The Last Supper (a Passover meal) with its shared loaf

--or some scriptural statements about bread:

● "If your enemies are hungry, give them bread to eat" (Proverbs 25:21)
● "Why do you spend your money for that which is not bread?" (Isaiah 55:2)
● "Give us this day our daily bread" (Matthew 6:11)
● "Jesus said to them, 'I am the bread of life'" (John 6:35)

Ask yourself, what does the bread mean? You'll likely come up with multiple meanings right away. That's how symbols work.

Now think about bread, any kind of bread you choose--

● how its ingredients are grown, harvested, and processed, and by whom
● how it's baked, and by whom
● how it is served and eaten, and by whom

Can you see how bread might enrich your view of life, or Jesus, or God's providence, or ... ?  Again, you're seeing symbols at work--or at play.

I love the prayer in the Roman Catholic liturgy that echoes the Hebrew blessing over bread:

Blessed are you, Lord God of all creation,
for through your goodness we have received the bread we offer you:
fruit of the earth and work of human hands,
it will become for us the bread of life.

A person could spend hours just parsing that prayer. Once you let symbols loose in your mind, everything looks different.

*   *   *

If you aren't yet convinced that bread is an extremely fecund symbol, find more layers of meaning (from the sublime to the ridiculous) in "The Symbolism of Bread."
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This is part of a series of short posts especially for people who attend St Barnabas Episcopal Church in Glen Ellyn, IL, where I'm leading conversations about food on September 22, September 29, and October 6. I'll post about food every weekday between September 16 and October 4.