Wednesday, September 30, 2020

Surfing the Waves of Alzheimer's

Surfing the Waves of Alzheimers: Principles of Caregiving That Kept Me Upright

Renée Brown Harmon, MD (2020, Many Hats Publishing)


        Renée Harmon lived a perfectly charmed life, until her husband started losing his mind. Harvey and Renée went to college together, then through medical school and residency, getting married after the first year of med school. They went into family practice together near Birmingham, Alabama, where they had both grown up (and where I went to high school with Harvey.) The family grew with the practice; they worked out ways to alternate staying home with the two little girls, and later to trade off school pickups and after-school activities. One would cook, the other wash dishes; one would make breakfast, the other lunch. Renée made time for reading, piano playing, and quilting; Harvey trained to run marathons.


        In December of 2009, while the family was vacationing in Costa Rica, she discovered that Harvey's memory and cognition had developed big holes. He got lost on the trails of the resort, and he couldn't follow instructions, because he couldn't remember them. Renée was concerned, then alarmed, and started doing online research. Wasn't forty-nine too young for Alzheimer's? It's rare, but not unheard-of. And what would they do if he couldn't practice medicine? That first year of waiting, watching, and testing was difficult, not least because Harvey was unwilling to talk about it. He did submit to testing at the University of Alabama at Birmingham; the results were awful and Renée let the state board of medicine know, leading to a sudden, devastating retirement.


        Renée describes this book as a teaching memoir, in the sense that she is passing on what she learned over the next eight years, in ways that should be helpful to all kinds of caregivers. The chapter headings tell quite a lot of the story in themselves: "If You've Seen One Case of Alzheimer's, You've Seen One Case of Alzheimer's;" "Put On Your Own Oxygen Mask First;" "Enter Their World;" "Acknowledge Your (Ambiguous) Grief." Each chapter closes with Practices for contemplation, whether that be through journaling, or through conversation with a counselor or support group. It's potentially difficult emotional work; the memoir's through-line makes it clear that Renée experienced lots of ups and downs.


         In the first place, she couldn't discuss her loss with her life partner, because he was protecting himself from thinking about it (or, maybe, that kind of self-awareness was the first thing to go.) She had the wherewithal to build a robust support team: Harvey's medical team; legal and financial experts; counseling help and a caregivers' support group; and the people she hired as caregivers and companions for Harvey, both before and after he went into residential care. With experience, she became more willing to ask for and accept help with simple, day to day affairs as well: who'd like to go with Harvey to walk the dog? Who'd like to help him cook, as long as he was able to wield a spoon? Who'd like to sit with him in church, while Renée played keyboards with the ensemble there? Letting people help, when they were so willing, turned out to be a mutual gift.


           Of course, Alzheimer's is incurable, and fatal. We follow Harvey and Renée through his forgetting how to shower and dress, and his gradual retreat into silence. She had good and bad experiences with nursing home care, especially during the period when he was strong, and strong-willed, but not aware of why he was being asked to do things: "Imagine yourself waking up every morning in a hotel in a foreign country where you don't know the language. Now imagine that a stranger walks into your room, and in the native language, tells you that he is there to give you a shower and change your clothes. As this stranger starts to disrobe you, what would you do?" What's termed 'resistance to care' is entirely predictable, though it often presents the challenge of keeping both patient and caregiver safe.


            She kept hearing, 'Renée, you are so strong!' "I guess I am, but what other option was there? I wasn't going to run away. I didn't cry in public often, so most people didn't really know how devastating it all was to me. And I had to be strong for our daughters. They were so young. And for Harvey. I couldn't very well dissolve into tears when his fate was so much worse than mine." She got good help, she took good care of herself, and she always led with love. In memory of the smart, kind young man Harvey was, I'm surpassingly grateful.

 

Here's more of Renee's story: https://www.reneeharmon.com/media/ 

Any Good Books, October 2020

 

Tuesday, September 1, 2020

How the South Won the Civil War


How the South Won the Civil War: Oligarchy, Democracy, and the Continuing Fight for the Soul of America

Heather Cox Richardson (Oxford University Press, 2020)


The paradox expressed in Heather Cox Richardson's subtitle does indeed run through all of American history. We have always pretended to a democratic ideal that, in practice, has some significant limitations. Richardson traces the original impulse to John Locke's 1690 Treatises on Government. As a Puritan, Locke believed that each person had a duty to seek a relationship with God, without the mediation of a priestly hierarchy; in that case, he wondered, would God really make one man more valuable and important than another? Conditions in the American colonies, especially the basic fact that they were several weeks' travel from the seat of power, "began to align colonials with Enlightenment political ideas simply out of practicality."

After Thomas Paine's Common Sense swept through the colonies,in 1776, Thomas Jefferson took the next logical step with the Declaration of Independence. "It was not simply an act of rebellion against a particular king; it was an act of rebellion against all kings, a resounding declaration that all men were created equal and had an equal right to have a say in their government."

At the same time, the economy and politics of the colonies had been organized around denying many people those equal rights. Especially in the cotton-growing region, men of property enslaved other people to do the hardest, heaviest work, and the slaves could never be considered equal. "How did slave owners make sense of that crucial contradiction?" asks Richardson? "They didn't. In their minds, freedom and slavery depended on each other." Virginia maintained a hierarchy based on denying the humanity of the enslaved, and James Madison rigged the constitution to protect the Virginian system. Universal white male suffrage was indeed a radical departure, but an oligarchy of wealth was already arising to replace that of aristocratic blood; in the scheme of things, the wealthy planters only had to reassure poor whites that they were superior to the black people, though they might never put together enough wealth to actually exert any influence. It's a game of 'let's you and him fight' that has never lost its salience, though the teams have sometimes changed their names.

What's new to me in this book is the place of the West in the North versus South story; the standard mythology of Texas as a place for independent men on empty land paves over a huge amount of contention between Mexicans, Americans, and various other groups of inhabitants. Free and slave states were inevitably in conflict about whose culture and economy would hold sway in the settlement of the West; the Kansas-Nebraska act of 1854 made the Civil War inevitable.

As the South had maintained the pleasant fiction that plantation owners were simply farmers, the mythology of the West posited hardy individuals, who made their living without government help or interference. In fact, mining, cattle, and oil grew up as capital-intensive businesses that rewarded oligarchy, which gave those states a common interest with the South. And while California did not have a substantial number of black people (because slavery was banned) it did have Chinese, Indian and Mexican populations who were excluded from the freedoms accorded to whites. And so it goes.

In the 1950's California was the seedbed of a 'conservatism' that claimed the central government was a very bad thing, and in this, the South was once again a natural ally. The white power structure didn't particularly want to educate black children; to be told they must do so by a bunch of elitists from Washington was all the more galling. And while California pumped out movies celebrating individualism as the essence of liberty, it was getting rich on the largesse of the Federal government. "California alone received more than twice as much annual defense spending as any other state; in the 1950's the Department of Defense poured more than $50 billion into it."

She traces the conservatism of Barry Goldwater and William F. Buckley down into the present day, by way of Phillis Schlafly, Roger Ailes, Richard Nixon, and Ronald Reagan, who turned the rich loose to get really rich, and leave the rest of us behind. Any suggestion that that might not be fair, or moral, was–and is–met with cries of 'Socialism!' And so on, through Grover Norquist, Newt Gingrich, Rush Limbaugh, and Rupert Murdoch, a long parade of anti-democratic activists.

The story of how oligarchy is systematically sabotaging democracy makes grim reading, but the clarity of it is bracing. This is bad news, but good information. Read it and weep, and then get to work.

 

 

 

Any Good Books, via email,

September 1 2020

 

Saturday, August 1, 2020

Bullshit Jobs



Bullshit Jobs: A Theory
David Graeber (Simon & Schuster, 2018)

The world is too much with us; late and soon,
Getting and spending, we lay waste our powers;—

      Wordsworth's words have seldom been better illustrated than by this book, which began as an essay, "On the Phenomenon of Bullshit Jobs." David Graeber wondered if some jobs that seem downright pointless seemed that way to the people who got paid to do them. He tossed the idea out into the internet in 2013; his essay went viral, and elicited a vast commentary, which Graeber collected, by way of research; he also solicited emails, and entered into correspondence with people all over the world. Some 375 people contributed comments or emailed testimonies about how useless their jobs are, and how unhappy they are about it. 
 
    What does Graeber mean by bullshit jobs? One key element is that they are 'pointless, unnecessary, or pernicious;' another is that the employee is obliged to pretend that this isn't the case, which is tough on morale. In general, he's talking about white collar jobs, as opposed to shit jobs, in which actual work is done, however tediously. 
 
      His typology is rough but revealing. 'Flunkies' are people like receptionists and doormen, echoes of the feudal retainers of old; they may be window dressing, or they may be like the competent assistant who renders her boss redundant (though in that case it may be disputed which of them has the bullshit job.) 'Goons' are the lobbyists, telemarketers, and corporate lawyers who are hired to make things harder for other people. 
 
    The term 'duct tapers' arises from the software industry, where it describes people who patch together incompatible software. More generally, they are people hired to work around a fault within an organization so that the fault never needs to be fixed. "There is, it seems, a whole genre of jobs that involve correcting the damage done by a superior who holds his position for reasons unrelated to ability to do the work." 'Box tickers' spend a lot of time filling out reports, as in the compliance industry, which grows every time a new government regulation is published. "The employee is usually aware that not only does the box-ticking exercise do nothing toward accomplishing its ostensible purpose, it actually undermines it, since it diverts time and resources away from the purpose itself." A 'taskmaster' has a bullshit job if the people he's supervising would get along better if he never talked to them. Some taskmasters exist to create bullshit jobs for everyone else. Obviously, these definitions could be split in other ways, since they often overlap, but it's a good start.

       According to stereotype, bullshit jobs are often government jobs; this can happen, but the private sector has generated more and more of them over the past four decades. For one thing, the private sector is not nearly as disciplined as its mythology would suggest; flunkies get hired to give managers someone to manage, and they can prove hard to dislodge. Corporations have shown a tendency to lay off the factory workers and keep the middle managers, just as universities downsize the faculty, and keep the staff. And consider how many people work for health insurance companies, denying claims. During the debate on the ACA, President Obama said the quiet part out loud–we can't have universal public health insurance because some two million(!) Americans are employed to slow the flow of money out to where the care gets done, and it would be too great a shock to the system to get rid of those jobs.

    One pernicious effect of jobs that could disappear without anyone being the worse off is that it abuses a fundamental aspect of human nature: we like to make things happen. Even as tiny children, pushing our bowl of cereal off the table to see what will happen, we measure ourselves by our impact on the world around us. The more we waste our efforts writing reports that no one will ever read, the more we feel like we're disappearing from the world.

     Another is that this situation is a setup for tremendous mutual resentment and contempt. We can well imagine that people on the factory floor grouse about the boss's brother-in-law lounging in the office playing computer games,and marvel that he gets paid so well. On the other hand, why don’t people who want to work as teachers, nurses, or bartenders deserve to earn a decent living? Because they have job satisfaction, and the people who feel useless are envious. And everybody scorns those on the dole, for whatever reason.

    Polling has shown that thirty to forty per cent of people, asked if their job makes ‘a meaningful contribution to the world’ would say No. "We have become a civilization based on work–not even 'productive work' but work as an end and meaning in itself. We have come to believe that men and women who do not work harder than they wish at jobs they do not particularly enjoy are bad people unworthy of love, care, or assistance from their communities. It is as if we have collectively acquiesced to our own enslavement.”

    This is a crisis we haven't had any name for. It's invisible because it's omnipresent, and the solutions (if such there be) lie all over the map, in education and public policy, economics and theology. I haven't treated you to the personal stories that led Graeber to these conclusions, but they are passionate and insightful. (The footnotes also give good value.) I hope you'll track down the essay, if not the book.

8/1/20

Friday, July 3, 2020

The Story of America

The Story of America: Essays on Origins
Jill Lepore (2012, Princeton University Press)

    “To say that the United States is a story is not to say that it is fiction; it is, instead, to suggest that it follows certain narrative conventions. All nations are places, but they are also acts of imagination.” In The Story of America, Jill Lepore’s essays on American history engage deeply with American literature as well, because it’s through the written and printed word that America has imagined itself into being. Lepore ranges widely over the documents that made America, from John Smith’s memoirs and the Constitution, to the massive flood of dime novels that shaped the mythology of the American West, to the strange life of the real Charlie Chan.

    Not everything in those documents is true, but history has been carrying on arguments about that for a long time, and it’s a lively conversation. Lepore’s first essay, on John Smith of Jamestown, introduces the problem of how much we can believe his words. “That Captain John Smith, even before he died, was widely believed to be a liar is of more than passing interest, especially since he was also, America’s first historian.”

    Nineteenth century Virginians made Smith a romantic hero, down to giving him an Indian bride; Henry Adams, a New Englander, demonstrated the unreliability of the Pocahontas story in an 1867 essay. Adams was almost certainly prevaricating, himself, when he claimed a disinterested truth-seeking motive: his work supported the story that the New England settlements should have pride of place over Jamestown in the American origin story.

    Thomas Paine wrote some of the most consequential words of the eighteenth century. His Common Sense was published anonymously in the winter of 1776, a forty-six page essay that made the Declaration of Independence seem not just necessary but inevitable. Not only did Paine turn the tide of opinion, he gave his earnings to supply Washington’s army, and fought for the American cause. None of this was inevitable at all, though: Paine had only been in America a year or so; and he was so ill on the trip over that he might have been left for dead, but for a letter of introduction from Benjamin Franklin that was found in his pocket.

    However invaluable, his note on behalf of Tom Paine was just one of Ben Franklin’s contributions to American history. He signed the Declaration of Independence, the Treaty of Paris, and the Constitution, to say nothing of his earlier scientific and technical accomplishments. His most influential work, though, may have been an essay called The Way to Wealth, stitched together from Poor Richard’s Almanack, which he’d published annually (and very profitably) for twenty-five years. Lepore argues persuasively that the work was taken much too literally and seriously after Franklin’s death, with all that ‘early to bed, and early to rise’ eyewash; Poor Richard was a spoof generated by Franklin’s endless facility for speaking in epigrams, and imitating voices. John Adams, a cranky and humorless man, deplored his humor as ‘infantine simplicity.’

    It’s really a pity that all Franklin’s scientific, diplomatic, and revolutionary achievements should be reduced to warmed-over adages. But oh, the man could write. At the arguments over the ratification of the Constitution, he was over eighty, and had to hand his speech to another delegate to read aloud. Here’s how he talks about having to act when we cannot be sure we are not making a mistake: “‘Most men indeed as well as most sects in Religion, think themselves in possession of all truth, and that wherever others differ from them it is so far error.’ The only difference between the Church of Rome and the Church of England, he said, is that the former is infallible while the latter is never in the wrong.” Delicious.

    It’s commonly forgotten, I think, how little the Founding Fathers thought of democracy. Thomas Paine’s admiration for the French Revolution made him persona non grata in America, even before he wrote a book celebrating an Enlightenment view that religion was unnecessary, indeed, pernicious. At the time of the Revolution, many of the Founding Fathers considered democracy “the government of the worst, the tyranny of the idle, the ignorant, and the ill informed.” As more and more Americans became literate, the tools of government came into more and more hands.

    The rise of literacy was first shaped by the Bible and Noah Webster’s spelling book; newspapers and pamphlets carried political arguments from town to town. Literature, as such, was not far behind. Charles Dickens was immensely popular in America, not least because he was considered a “democratic writer.” In 1842, he came to America to meet his democratic readers, thinking it would be a feast of mutual love; but, for several reasons, it wasn’t. He took what his hosts regarded as an unseemly interest in prisons, asylums, and factories. He was highly resentful that the proceeds of his work went mainly to pirate/publishers, due to the weakness of copyright laws. And, “everywhere Dickens went, crowds crushed him, as much in the fame of fame as in the fame of accomplishment.”

    He met Charles Sumner, the future abolitionist senator, and his bosom friend Henry Wadsworth Longfellow in Boston; they took a ten mile walk. He met Edgar Allan Poe in Baltimore, and promised to help him find a British publisher. After five and a half months, he headed home. “He brought on board the George Washington a spaniel named Timber Doodle; a wife, homesick; and his great expectations for America, dashed. The republic he had admired was a sham: its newspapers vicious, its politics brutal, its people humorless.”

    Dickens’ least successful book is probably his American Notes, written soon after his return, because it was so far from the cheerful humor his fans were used to; Martin Chuzzlewit dresses some of the same disappointment in America in a more familiar fictional dress, but its American scenes are still pretty biting. Dickens didn’t follow through on finding Poe an English publisher, but the raven in Barnaby Rudge inspired “The Raven,” a couple of years later. Small world!

    If, for some reason, you are home-schooling someone in American history, start right here. If you’re looking for a book that will lead you on to other books, here’s a beauty. And it’s wise: “The past isn’t quaint. Much of it, in fact, is bleak. Also, what people will tell you about the past is very often malarkey.” Lepore’s demonstration of how to deal with that reality is heartening and deeply rewarding.




Any Good Books, Revised
July 2, 2020

Monday, June 1, 2020

New Life, No Instructions


New Life, No Instructions: a memoir
Gail Caldwell (2014, Random House)

    Gail Caldwell's previous volume of memoir (Let’s Take the Long Way Home, 2010) was a beauty. It was the story of gaining a best friend, in her forties, with whom she shared a love of dogs, and a hard-won sobriety. Four years later, the friend and the dog have both died. At 54, she is sober, solitary, and lonely, so she decides to get another dog. She wants a Samoyed, bred for pulling sleds; they are big-hearted and stubborn, and so is she. She heads down to Pennsylvania, where there's a breeder she admires, and comes back with a beautiful white puppy she calls Tula.

    What New Life, No Instructions is really about is the reason a Samoyed was a crazy idea: Caldwell is lame, and getting more so. Her right leg has been weaker than her left since she had polio as a baby. With her mother, she did exercises to stretch and strengthen the leg, but only until she was about five. Nonetheless, as we saw in her earlier book, she exercised avidly, either on the water in a rowing shell, or swimming laps. But over a lifetime of uneven use, her weaker leg was also shortened, so her right foot was always stretching down to reach the ground.

    After Tula came, the strain of keeping up with her brought matters to a head. “I had been falling a lot lately, and spending energy trying not to notice.” The doctor she had was pretty good at not noticing, too, sending her to physical therapy with a diagnosis of sciatica. Happily–at last– she went to a new doctor. “I delivered the usual sketch–polio as an infant, years of exercise and strengthening, recent years of pain. When he asked me where it hurt, my brain was so overloaded with information that I became confused. Had no one ever asked me where it hurt before?”        

    That’s not all: “ ‘What did the MRI show?’ There had been no MRI, ever, and I told him so. ‘OK, what about the X-ray?’ Same answer. In the twenty or so years I had been experiencing difficulty–sprains and injuries and progressive weakness and discomfort–no one, in orthopedics or internal medicine or neurology or physical therapy, had ever ordered or even mentioned an X-ray.” This appalls me, though somehow it doesn’t surprise me.

    Caldwell is not as angry about this as I am, perhaps because she, too, had a fixed idea about the reason for her difficulties. “I had been limping around for a decade while friends worried and doctors shrugged, and yet the polio had been such a basic starting point that no one could see beyond it.” Also, she’s learned in AA that sometimes, things just are what they are. "I don't get to be mad at a resident or a therapist or an internist who was working a twelve-hour day  and assumed I needed a cortisone shot or a referral instead of an X-ray. A thousand little subplots converged on the days I didn't get what I needed, and chances are, almost none of them were about me."

    The ensuing hip replacement is at once dramatic and utterly routine. Thousands of people have them every week, but not everybody gets to add 5/8” of thigh bone in the process. ”Most people recover from hip replacement with the same leg they started with, but mine was on its maiden voyage, longer now but unschooled, and I couldn't go far without muscle spasm or fatigue.”

    Friends rally around, both to feed Caldwell and to take care of Tula; she attributes this partly to having neither partner nor offspring, so her friends feel confident that their help is actually needed. Her rehab is both exceptionally painful and grueling, but within a year she is both moving faster and standing more upright than she has in years.

    As always, Caldwell is as wise as she is tough. ”Real change, though, is forgiving enough to take a little failure, strong enough to take despair in small doses. The ocean liner turns two degrees: different destination. You just don't drink for one day. Don't take the bait, load the gun, say the stupid thing. Do make the phone call, throw away the shoes that hurt. Just rest a little and then move another few inches down the path.”


    So must we all, and a sled dog at your side just might help.

Published by e-mail, June 1, 2020