From the Files (Madeleine's Notes)

Otosurgical Group Medical Clinic
2080 Century Park East #1700
Los Angeles, CA 90067

March 14, 2008

Dear Sir/Madam:

This bill is insane. Your accounting system is madness itself.

For over a year you billed me for $0.30, wasting lots of money trying to collect a value less than a postage stamp. I ignored the bills, expecting you to somehow see the light.

Instead, you sent me a “final notice” threatening to send the bill to collections!

I called—repeatedly. Finally spoke with a woman who finally, after a long spiel, seemed to get it. She sent me a letter declaring the debt clear.

Today I opened a new bill, this for $138.60. YOU CANNOT DO THIS! I have no way of knowing what’s going on here. I didn’t owe the money a month ago or a year ago. You have rendered me no services whatsoever and now you declare I owe you $138.60!?!

So I called the number on the bill. I was told to leave a voicemail. Then I was told the voicemail box was full and that I couldn’t leave a voicemail.

I have NO IDEA what to do. I could never in clear conscience pay such a dubious charge. Nor, if I were to pay it, would I have any idea whether or not you were going to hit me up for more money, out of the blue.

Sincerely,


Madeleine Marshall (PoA for Gary Marshall, Acct. no. 40310)


Otosurgical Group Medical Clinic
Telephone # (310) 785-9287

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

Madeleine’s Notes

The summer is off to a sweet start.

My sister, Mary (whom many of you know), just completed a wonderful visit. She was a great help to me and spent good time with Gary. Mary thought I should share some of the many wonderful things and real pleasures Gary and I enjoy, despite his severe disability. Our life together -- which might appear grim and depressing from the outside -- is rich in books and music, children and grandchildren, politics and friendship. (We have our grim moments, of course, but they are not the norm.)

Weather and support permitting, we get out pretty regularly. The picture on Gary’s blog profile was taken at Topanga State Park, where we picnicked with Elizabeth and her kids and Katy and her kids and David and Linnea Hillesland, Kate’s in-laws. A couple of weeks ago we visited our good friends Kathryn and Ali at their home in Valley Village. (Margaret was in town and accompanied us.) Just yesterday we went to Roxbury Park to test out the new manual wheelchair, a tilt-in-space I bought on eBay, which Joseph, our long-term caregiver, has outfitted with a vent tray and a basket for the battery.

Our life, while strenuous, is rich in blessings:

Gary’s health is stable and his recent labs all clear. He is not at death’s door. He is not in pain. He gets massage every week and extensive range-of-motion exercises every day.

He is perfectly alert and aware and engaged. He listens to the New York Times and various books and magazines on his iPod every day. (If I could figure out how to do it, I would post the long and impressive list of what he's read.) Sports and movies on TV provide hours of pleasure. His good friend and colleague, Pastor John Rollefson, visits him every week.

The grandkids visit often and lean up against him and pet him and watch children's shows on his big TV.

The new baby (Madeleine!) is a great joy for all of us. We took Gary to the hospital to visit her the day after she was born. They looked into each other’s eyes and bonded seriously.

Margaret and Karl have promised a cousin for little Madeleine in late December.

The Brainmaster technology offers hope—even though it’s a great deal of work, demands technological patience, and the outcome is far from certain. (I’ll share more about that in the days to come, but for now it’s an EEG system that reads brain waves that just might let Gary communicate, perhaps even write, again.)

Only the Lord knows what tomorrow will bring, or next week or next month or next year. (That's hardly a new thought, but it's gained meaning for us in the past three years.) Meanwhile, we have learned patience and grown in love and gratitude for the gifts of God and for the people of God.

M

Getting out of Bed

From Bed to Chair and Back to Bed:

Our Molift was bought with donor help as insurance refused to fund this essential piece of equipment. The lift can go with us to the doctor’s office or on an overnight trip. (See http://www.moliftinc.com/prod-smart.shtml)

We share this tiresome set of instructions as a sample of the crazy effort and detailed care required for a simplest escape from the bedroom to the living room.

OUT OF BED, ONTO MOLIFT:
Position sling under Gary.
Tie circuit to sling loop.
Make sure external battery is securely attached to vent.
Disconnect ventilator from house current so it’s running on external battery.
Disconnect oxygen from vent and reattach circuit securely to vent.
Place oxygen connector in plastic bag.
Turn off oxygen concentrator.
Position Molift under bed; spread lift legs.
Attach loops to lift: purple and green.
Position arms and watch hands carefully.
Attach catheter bag to sling.
Elevate and lift away, placing Gary’s legs on either side of lift mast.
When he clears the bed, close lift legs and put wooden shelf on lift legs.
Place vent on wooden shelf.
Place external battery on wooden shelf.
Move to destination—slowly.

OFF MOLIFT, ONTO CHAIR:
Fold back carpets
Recline chair half-way.
Move vent and battery from wooden shelf to chair/floor by recliner.
Remove wooden shelf. Spread lift legs.
Position lift around chair.
Lower Gary onto chair—stopping mechanism before it hits Gary.
Remove loops from lift.
Remove cath bag from lift and attach to chair—checking flow.
Remove lift & close legs.
Connect vent to house current.
Check vent settings.
Check connections: vent to cord, cord to wall; battery to vent, all circuit connections.
Adjust chair and Gary for comfort: hips, head, hands and feet.
Move lift back into closet.
Replace carpets.

OFF CHAIR, ONTO LIFT:
Fold back carpets.
Position lift, spreading legs.
Disconnect vent from house current.
Attach loops, purple and green.
Check circuit tie—sufficient slack on both ends (tie to trach, tie to vent). Attach cath bag.
Position arms and watch hands.
Raise Gary.
Pull back lift. Position wooden shelf.
Put vent and battery on shelf.
Back to bedroom (slowly).

OFF LIFT, ONTO BED:
Move lift into position between beds.
Remove vent and battery, setting vent on floor or little table, depending on slack.
Remove wooden shelf.
Position lift under bed, spreading legs somewhat for stability.
Lower Gary—stopping mechanism before it hits Gary in the head.
Remove loops. Remove cath bag.
Move lift out of the way.
Reconnect vent to house current, checking cord both to wall and vent.
Check vent settings.
Turn on oxygen concentrator.
Reattach oxygen line to circuit.
Observe that GREEN light is on, confirming that the vent is drawing on house current.
Make certain that external battery is connected to the front of the vent, charging.

Notes on Healing from January 2006

Ministry of Healing

As I prepare my sermon for this last Sunday in January, as I read and research the texts treating Jesus’ ministry of healing, I think, of course, about my own disease and the healing I hope for myself at Jesus’ hands. I think also of the many, many sick people I have visited as a pastor over the years. And I think of the visits I may have foolishly put off or failed to make because other things seemed more important or because I didn’t think my visit would be useful.

Many people have visited me in the past months. Many pastor friends and colleagues have come to the hospital or called and of course I appreciate their concern, but it is the lay visits that stand out in my mind, the visits by people who are simply “called” by the Spirit to bring comfort to the sick.

Indeed, visiting the sick, the ministry of healing, traditionally belongs to all the baptized, to the priesthood of all believers. Everybody is instructed to participate, to bring comfort and to pray with sick people. Everybody has the skill, the talent, the gift. What I need to hear, however wise or educated or old or experienced I am, can come from the mouth of the smallest child: God loves you. I love you. God wants you to be well. I want you to be well.

Words aren’t even necessary. The touch of a hand, the look of concern, the time spent getting to the hospital, the care taken. All these communicate. A prayer offered, silent or aloud, a song or hymn, a few moments of Bible reading. These “do the trick” of ministry, the ministry of the baptized.

Most pastors get a few weeks’ special training in a chaplaincy setting. They may take a class, read some books, go to a workshop on visitation. But it’s not at all the same as what I have learned the past months from you, from the priesthood of believers at Mount Olive as you have ministered to me!

Visiting the sick is not about expertise. Indeed, in the hospital I lay surrounded by “expert” medical people who were not doing much good at all. It’s not about knowledge or saying the right thing. It’s love in action. It’s faithful community. It’s pure Christian action.

So it’s not just about hospitals either. Lying immobile and dependent in my bed I have come better to understand the homebound and the shut-ins in my care through the years. (I hope they have found the consolation in lay visits that I have found!) I thought I had to bring wisdom and answers, expert help or inspiration. I didn’t understand that just “hanging out,” just giving a bit of time, just sitting quietly, was all that was required. Getting involved, offering to help, bringing a book.

Hospitals are busy places. Shut-ins live in a relatively boring, helpless and hopeless space. Shut-ins may get out sometimes. (I didn’t really understand that until recently.) But only with great effort and support, and often at considerable cost and discomfort. Shut-ins have embarrassing bathroom problems and hygiene problems and dressing and grooming problems. Mostly they suffer from a terrible sense of loss and marginalization.

Visits make a wonderful difference. We must remember this as a church community and learn a lasting lesson.

Thanks and blessings,
Pastor Gary