Reading List to mid-July, 2008

Here are the titles, downloaded from "My Library" at audible.com, of books Gary has listened to since January 2006. There are other recordings as well, made by friends, and the live readings by friends and family of current journals and articles.

(Audible titles average $15 each, so you donors get credit here, too!)

The New Yorker
The Zookeeper's Wife, Diane Ackerman
When You Are Engulfed in Flames, David Sedaris
The Man Who Loved China, Simon Winchester
Dreams from My Father, Barack Obama
Executive Privilege, Phillip Margolin
The Blind Assassin, Margaret Atwood
The Iliad & The Odyssey, Homer
For Whom the Bell Tolls, Ernest Hemingway
Don Quijote de la Mancha, Miguel de Cervantes Saavedra

The Soloist, Steve Lopez
The Guns of August, Barbara W. Tuchman
A Prisoner of Birth, Jeffrey Archer
I Don't Believe in Atheists, Chris Hedges
Dorothy Day, Robert Coles
A History of the Middle Ages, Crane Brinton, John Christopher, and Robert Wolff
The Life of Thomas More, Peter Ackroyd
The Lay of the Land, Richard Ford
The Jesuit and the Skull, Amir D. Aczel
Cold Mountain, Charles Frazier

The Appeal, John Grisham
The Great Awakening, Jim Wallis
The Last of the Mohicans, James Fenimore Cooper
Classic French Short Stories

Great American Short Stories

Blasphemy, Douglas Preston
Three Cups of Tea, Greg Mortenson and David Oliver Relin
Extremely Loud and Incredibly Close, Jonathan Safran Foer
The Diving Bell and the Butterfly, Jean-Dominique Bauby
The Ritual Bath, Faye Kellerman
Paradise Lost, John Milton
Proust Was a Neuroscientist, Jonah Lehrer

Siddhartha, Hermann Hesse
The Black Swan, Nassim Nicholas Taleb
Born Standing Up, Steve Martin
Infidel, Ayaan Hirsi Ali
Blackwater, Jeremy Scahill
Power, Faith, and Fantasy, Michael B. Oren
Fresh Air, Clint Eastwood (January 10, 2007) Terry Gross
Power, Faith, and Fantasy, Michael B. Oren
A Ball, a Dog, and a Monkey
The Scandalous Gospel of Jesus ,Peter J. Gomes

The Crusades, Richard A. Newhall
The Brief Wondrous Life of Oscar Wao, Junot Diaz
Our Dumb World, The Onion
World Without End, Ken Follett
Invasive Procedures, Orson Scott Card and Aaron Johnston
Pompeii, Robert Harris
Master of the Senate: The Years of Lyndon Johnson, Robert A. Caro
Finn, Jon Clinch
Hard Truth, Nevada Barr
Evolution, Edward J. Larson

The Tin Roof Blowdown, James Lee Burke
What Is the What, Dave Eggers
Pride and Prejudice, Jane Austen
The Inheritance of Loss, Kiran Desai
Napoleon's Egypt, Juan Cole
Michelangelo and the Pope's Ceiling, Ross King
On Chesil Beach, Ian McEwan
The Persian Wars, Herodotus
Moby Dick, Herman Melville
The Falls, Joyce Carol Oates

True History of the Kelly Gang, Peter Carey
On the Road, Jack Kerouac
The Curious Incident of the Dog in the Night-Time, Mark Haddon
The Places in Between, Rory Stewart
The Tortilla Curtain, T. C. Boyle
The Innocent Man, John Grisham
The Good Guy, Dean Koontz
Blaze, Richard Bachman and Stephen King
The Overlook, Michael Connelly
The Assault on Reason, Al Gore

Einstein, Walter Isaacson
Paradise Salvage, John Fusco
Middlemarch, George Eliot
Simple Genius, David Baldacci
The Looming Tower, Lawrence Wright
Survival of the Sickest, Sharon Moalem with Jonathan Prince
Mark Twain, Ron Powers
The Big Over Easy, Jasper Fforde
The Color of a Dog Running Away, Richard Gwyn
The Echelon Vendetta, David Stone

The Emperor of Ocean Park, Stephen L. Carter
Thomas Jefferson and His Time, Dumas Malone
Heart-Shaped Box, Joe Hill
Alexander Hamilton, Ron Chernow
Linked, Albert, Laszlo Barabasi
On Intelligence, Jeff Hawkins and Sandra Blakeslee
The Life and Times of the Thunderbolt Kid, Bill Bryson
Theft, Peter Carey
The California Gold Rush and the Coming of the Civil War, Leonard L. Richards
American Theocracy, Kevin Phillips

The Night Listener, Armistead Maupin
The Electrifying True Story Behind The Night Listener, Tad Friend
The Lincoln Lawyer, Michael Connelly
Water for Elephants, Sara Gruen
Last Man Standing, David Baldacci
The Metamorphoses, Ovid
WLT: A Radio Romance, Garrison Keillor
iWoz, Steve Wozniak and Gina Smith
Our Inner Ape, Frans de Waal
The Iraq Study Group Report

Q&A Vikas, Swarup
Wuthering Heights, Emily Bronte
Next, Michael Crichton
A Tale of Two Cities, Charles Dickens
Palestine, Jimmy Carter
The Worst Hard Time, Timothy Egan
Contemplative Prayer, Thomas Keating
Wake Up, Sir! Jonathan Ames
1491, Charles C. Mann
Joe, Larry Brown

The Christmas Train, David Baldacci
The Camel Club, David Baldacci
Tulia, Nate Blakeslee
The Aeneid, Virgil
Wigfield, Amy Sedaris, Paul Dinello, and Stephen Colbert
Faith and Politics, Senator John Danforth
Selected Shorts: Lots of Laughs! Nicholson Baker, John Updike, David Schickler, Neil Gaiman, and more
The Mighty Johns, David Baldacci, Brad Meltzer, and Anne Perry
State of Denial, Bob Woodward

Bay of Souls, Robert Stone
War and Peace, Leo Tolstoy
The Late Roman Empire, Glanville Downey
Confessions of Saint Augustine, Saint Aurelius Augustinus
The River of Doubt, Candice Millard
Mayflower, Nathaniel Philbrick
Team of Rivals, Doris Kearns Goodwin
The Four Loves, C.S. Lewis
Elvis in the Morning, William F. Buckley, Jr.
Ted Williams, Leigh Montville

Huckleberry Finn, Mark Twain
The Path Between the Seas, David McCullough
Truman, David McCullough
John Adams, David McCullough
The Pleasure of My Company, Steve Martin
The First Human, Ann Gibbons
The Husband, Dean Koontz
Brother Fish, Bryce Courtenay
Empire Falls, Richard Russo
Shalimar the Clown, Salman Rushdie

Sabbath's Theater, Philip Roth
The Language of God, Francis S. Collins
The King of Lies, John Hart
The Gifts of the Jews, Thomas Cahill
The Human Stain, Philip Roth
High Country, Nevada Barr
New Testament: NRSV
A Generous Orthodoxy, Brian McLaren
A Briefer History of Time, Stephen Hawking and Leonard Mlodinow
Life Works, Stephen W. Hawking (Lucasian Professor of Mathematics, Cambridge University)

Miracles, C.S. Lewis
Reflections on the Psalms, C.S. Lewis
The World Is Flat: Updated and Expanded, Thomas L. Friedman
Mere Christianity, C.S. Lewis
Scientific American, May 2006
Fresh Air, Dr. Dan Gottlieb and Paul Weitz Terry Gross
Ear to the Ground: Sheep Child, Woman Scorned, All's Well Corey Thrasher
Don Quixote , Miguel de Cervantes
The Canterbury Tales, Geoffrey Chaucer
The Last Report on the Miracles at Little No Horse, Louise Erdrich

Benjamin Franklin: An American Life, Walter Isaacson
Breathing, Andrew Weil, M.D.
Gilead, Marilynne Robinson

Giving Care (Madeleine’s Notes)

I like to think that I function at a fairly high level—all things considered. What I mean by that is that it’s been three years since my husband was clearly unwell and not getting any better. It’s been over two years since he was tracheostomized and lost all ability to speak. It’s been more than a year since he became “locked in,” unable even to spell words using eye movements. It’s been more than six months since the church, for which he had worked faithfully for close to 40 years, dumped him into Medicare and left us without any home nursing services.

This is cast iron church policy. It’s uncontestable. Until January 1 of this year we had (through Aetna) 70 hours per week of skilled nursing support. Since January 1 we have had no help from the church whatever. Once they are certifiably disabled, Lutheran pastors are discarded into the Medicare system. End of story. No “Good Samaritans” at the Board of Pensions of the ELCA! Tending the disabled is incompatible with their concept of stewardship—being a “neighbor” be damned. (Luke 10:29 ff.) WWJD (What would Jesus do)? Why get the sick and the hurt off the books as fast as possible!

Nevertheless, I mostly do OK. I teach some, write some, enjoy the friends who have stuck by me, have wonderful support from family and am grateful for the financial support of a nationwide network of contacts. I am grateful that Gary looks good, loves me, lives well, isn’t in pain.

I think it’s easiest for all our supporters to appreciate the monumental physical job my husband’s care entails. His ventilator and circuits, his feeding tube, even the catheter that runs through his abdominal wall—these are obvious, visible. The strain of turning him every hour, of getting him out of bed, is easy to observe. The mysteries of bowel care and bedsores, the management of dozens of medications, the bathing and hair washing, shaving and mouth care, the detailed maintenance of all holes and the machines and the tubing may be harder to envision.

Small wonder the whole project is certified as acute care and something only an ICU can manage (if very badly) in a hospital. Still, I have never left Gary alone with the ICU staff, even at Cedars. They aren’t careful.

Some supporters have an idea of the intellectual and creative care I have sought to render. Convinced that Gary retains all his intellectual faculties, I encourage visitors. I download recordings for him to listen to on his IPod—newspapers and journals, lots of books and NPR shows. I look for movies and TV that he likes. I struggle to make sense of the Brainmaster technology and hook him up for hours every week—hoping against hope that he can learn to signal with brain waves and return to some sort of communication.

So, these are the hands-on things I do. There’s also scheduling and supervising the people I hire to help. There’s shopping for the dozens of supplies and the monumental bill paying.

I cope with all of this fairly competently. Make some mistakes and overlook some things, but basically cope. I have found a number of people to work for us who sincerely care and who understand the humanity of our situation.

What I find utterly draining, even devastating, is the call to explain the whole saga to some new person over the telephone. People who sincerely want to help often advise me to call somebody who “helps with hospice” or “the Jerry Lewis people.” Well-intentioned would-be advisors will suggest I try this agency or call that service. I have made many, many such calls. Every time I end up in despair. In tears. It takes a day just to bounce back. Often the people I reach pass me along to somebody else to whom I’m expected to tell my story. Or I get a voicemail and they call back at their convenience when my fingers are in my husband’s rectum. Nobody has helped at all. Why should I lose another day to despair?

Three times since January an agency has assured me they can help. A nurse comes to the house for an “assessment.” Many pages of questions—asked deadpan—include things like whether my husband enjoys gardening or whether he can climb stairs. Then it turns out their agency doesn’t handle patients on ventilators. But that is clearly his situation. It’s in all the documentation. I made it clear on the telephone.

After cutting off all support, the ultimate church lady, an RN who works for the ELCA Board of Pensions, sent me hundreds of names and numbers of nursing agencies who could help us. The list was totally useless. The help she offered was completely bogus. I made a couple of dozen calls only to realize how, cruelly, she had sent me on a fool’s errand. (Her help was like giving a treadmill, with much fanfare, to someone with no legs, promising a new life as a marathon runner.)

The same dame, three months later, sent along the name and number of a wonderful contact she was sure would be able to help. I called her wonderful contact, explained everything, cried on the phone. She was a very warm and compassionate person. She never got back to me at all!

Are these people wicked? Are they stupid?

To care is to give—time, money, concern. You cannot care thoughtlessly or idly. It takes effort. Sometimes terrible effort that hurts your back and wrenches your elbows and keeps you awake at night.

So many people report that they pray for us. Particularly, it seems, the people who never visit or call or email, never ask what they can do—these are the people who, when I run in to them at church, claim to be praying for us. It may be mean or it may be uncharitable, but I have come to suspect that “prayer” without “care” means nothing at all. To claim to be praying without caring is blasphemy.

And care is costly.

The lessons for a church that prays loudly and often for the sick and the hungry, the destitute and the dying, but is all too often locked into a “self-care” mindset, that avoids the “negative energy” of people who are suffering, that looks to justify its own neglect with myriad explanations and priorities.

The lessons of this life we are living are terrifying!

To pray for others is a serious responsibility. It commits you to care for them. If otherwise, if it’s just asking God to care, it’s idle and irresponsible.

Of course GOD cares!

I’m probably not supposed to post this. A former friend warned me that when I get angry I turn people who want to help away. Manifestly we want our victims uncritical and passive. We doubtless don’t want to hear that our prayers are blasphemous and that our claims to care are idle and irresponsible. On the other hand, I may, through this dire experience, have achieved something like a prophetic competence and perhaps those who have ears may hear something useful in my diatribe. I can always remove the post...

M