A Year After Our Personal Longest Day

One year ago today, Marge had her cancer surgery. That was the day the Caringbridge journal I wrote really got underway. Remembering the day after a year is painful but somehow essential.

There are parts of the story that we love to tell, such as the fact that Marge showed up for surgery with a smiley face (rendered in ovarian cancer teal) on her stomach. She had been told that “a happy surgeon does his best work.” What better way to ensure that happiness than with a great big smile.

The whole idea of the smiley face was so much fun that we didn’t think it through. Almost by accident the smile was rendered with a washable marker. We’ve been told since that if we had used a permanent marker, the smile might have caused the surgery to be postponed! But Fortuna smiled on us.

I also like to tell the part of the story about how at the end of the surgery I knew the news was good by the bounce in the surgeon’s step. From meeting him many times, however, I’ve since realized that that’s just the way he walks—whether the news is good or bad. That day the news was good. Fortuna smiled once again.

Over the past year I’ve referred a lot of people to the Caringbridge site, secure in my belief that the whole story was there. Yet I now find that the worst moment of Marge’s entire time in the hospital wasn’t mentioned there at all! Here, as the insufferable Paul Harvey used to say, is the rest of the story:

For four days after the surgery Marge endured a ventilator tube. I was there with her when the tube was finally removed. She seemed exhausted and ready to sleep, so I went home and wrote, exultantly, “Great news today! The ventilator tube is out!”

What I didn’t know was that at just about the time I was writing those words, Marge was falling into what is called narcotic induced apnea. In plain English, the pain medicine she was receiving (Fentanyl) sedated her so much that she stopped breathing! As a result, she got Naloxone, the anti-overdose drug, to overcome the apnea. This started her breathing again but left her with the God-awful pain.

I wouldn’t have known anything about this until the next day if it hadn’t been for Carolyn, the minister from our church, who showed up at the hospital just as Marge’s situation began to get dicey and then came to the house to tell me what she had seen. I was set to rush back to the hospital, but Carolyn talked me out of it by explaining that Marge was finally resting comfortably and might actually get some sleep if I left her alone.

The truth about the journal is that I got better at writing down the whole story as the long weeks passed. Several people have asked me why I put so much into that journal, and the answer is that the act of writing helped me find the courage and focus I needed every day as a caregiver and advocate.

I wrote in the journal nearly every day, and it forced me to do my best to understand the swirl of events. An additional benefit was that the journal made it possible for friends and family to know what was going on without my having to tell the story over and over.

The biggest surprise for me now is I don’t want to write about the BIG LIFE LESSONS that the journal always seemed to be bumping against. It’s true that I’m working on a book that will be derived from the material in the journal, but the book isn’t and won’t be about BIG LIFE LESSONS.

I find that I’m much more interested in writing about small lessons, such as how we managed to get through 3:00 a.m. night after night. The short answer to that, by the way, is together. The long answer will be the book.

What Marge and I treasure most now is the normal, uneventful life we are leading. Now back at school full-time, Marge didn’t even remember that today was the anniversary of her surgery until I mentioned it to her. I think this is how it should be.

Is it Torture if Americans Do it?

Last fall I nearly got into a shouting match with some conservative friends of mine when I suggested that the Bush Administration’s handling of the wars in Iraq and Afghanistan involved criminal acts at the highest levels. Specifically, I expressed my concern that the then Vice President had become a war criminal in the service of what he perceived to be leadership and patriotism. In recent months, I haven’t revisited the subject with my friends, but apparently more than a few thoughtful conservatives have begun to worry about some of the same issues.

The October 2009 issue of The Atlantic, for example, has as its cover story an examination of systematic torture in detention centers operated by the CIA and by American military personnel. The article, by Andrew Sullivan, is hard to read both because of its anguished tone (Sullivan was a Bush supporter in 2000) and because of the clarity with which it documents the descent of what were probably good people into the fear, rage and self-delusion that allowed them first to justify torture and then to conduct it with enthusiasm.

Like Sullivan, I find it hard to imagine anything more fundamentally un-American and anti-American than torture. As more becomes known about what went on in the prisons operated in Iraq and Afghanistan (not to mention the CIA’s so-called “black sites”) it becomes harder and harder to believe that any of it happened by accident. Worse, our national conversation continues to include those who insist that anything Americans do is justified and that the face America should present to the world is one of implacable authoritarianism.

This bombastic and imperious drivel from arch right-winger Cal Thomas, for example, seems to be saying that Obama can’t protect us from “them” because he doesn’t make the rest of the world sufficiently afraid of America. Cal assumes that we know (wink, wink, nudge, nudge) that the only thing “they” understand is fear and that “they” are everyone in the world who isn’t a white American who shares Cal’s religion of condemnation and politics of hatred.

No matter how strident the Cals of the world become, however, the truth of the matter remains: torture by any name is horrible and wrong. Torture never rests on the side of the angels, no matter who does it.

But is that even the worst of it? Well, not from where I sit. To my mind, when America becomes a country that tortures prisoners, we cease to be America.

Reflections on “My Evil”

A couple of weeks ago, I spent part of a Saturday at Portland’s Sidewalk Art Festival. I was there as a member of a team of political volunteers working to get people to “Take the Pledge” to vote No on the upcoming referendum to repeal Maine’s new law that allows same-sex marriage.

The morning began at campaign headquarters, and we volunteers were asked to introduce ourselves and say a little about what had motivated us to volunteer. When my turn came, I said something like this.

I am exactly what I appear to be: an aging, straight, white dude, pretty much conventional in every respect. I’m here because the folks on the other side of this have worked long and hard on me to explain how same-sex marriage hurts me, my state, my country, my religion and even my own 41-year marriage. The angrier and more frantic they become, the more I don’t believe them. So here I am.

We all expected that the Art Festival would draw a largely sympathetic crowd, and for the most part we were right. After and hour or so, however, I was approached by a woman who looked as if she might have a question for me.

When I said hello to her, she stuck her finger in my face and practically shouted, “You will burn in Hell for Your Evil!” She pronounced it ee-ville and drew out the word for emphasis.

Somehow, I had the presence of mind not to react at all for a moment. Then I smiled at her and said in the most pleasant voice I could muster, “We’re going to have to disagree about that. Now, you have a wonderful day.” Then I turned away from her and wouldn’t talk to her anymore. I didn’t appreciate being threatened with Hell for following the dictates of my conscience.

The debate, of course, becomes increasingly shrill. Actually, it mostly stopped being a debate long ago. Well-funded groups that claim to be “conservative” have fought same-sex marriage all over the country. The arguments they raise are mostly emotional rather than logical and echo the campaign, a few decades ago, to preserve laws banning interracial marriage.

Then, as now, those seeking to deny marriage relied on a mostly unspoken “yuck” factor. In the case of interracial marriage, the term used was “miscegenation,” a word that contains the notion of mixing different species! The appeal was to the immoral, irrational, inaccurate and downright stupid idea that people of color are somehow subhuman–a different species from white folks. You wouldn’t allow people to marry dogs and have sex with them, would you? Yuck!

The “yuck” factor in the current conflict is even more blatant. Again and again, our attention is directed to the nature of homosexual acts. This must be to stir up the homophobia that is still rampant in our society. Do you know what homosexuals DO? You want to allow people to  call that MARRIAGE? Yuck!

To my knowledge, however, voyeuristic prissiness has nothing to do with either genuine conservatism or any religion worthy of respect. What consenting adults of any orientation do in the bedroom is nobody else’s business.

In the past, marriage was about preserving and controlling money, property and power. Somewhere along the line, people began to recognize the legitimacy of love as a basis for marriage.

In our time, we are finally asked to consider the implications of marriage for love. On what basis do we decide who has the “right” to fall in love with whom? Should we really let the “yuck” factor make that decision for us? If love really is a good reason to get married, then isn’t the “yuck” factor on the wrong side of history as well as morality and common sense?

But I’m not a religious scholar, so maybe the “yuck” factor people really do have a lock on Heaven. If so, I probably wouldn’t have a good time there, away from all my friends. Mark Twain’s thought about this  comes to mind: “Go to Heaven for the climate, Hell for the company.”

Deciding to End a Life

Mom and I sat side by side in a small conference room in Maine Medical Center. We were listening to a doctor explain, as gently as he could, that the time had come for us to make decisions about my father.

A few weeks earlier, Dad had undergone quadruple bypass surgery. He had recovered from it fairly well, but during his first night home from the hospital he suffered a massive stroke. After a few days back in the hospital, he slipped into a coma. Now we were facing the reality that he wouldn’t be coming back to us.

Dad’s condition, in the doctor’s opinion, was irreversible, yet with the feeding tube and ventilator in place, he could be kept alive indefinitely. The doctor asked if Dad had ever prepared an advance directive. The answer was no. As far as I knew, Dad had never said anything at all about what he would want in the circumstances we now faced.

Mom turned to me and said, “What do you think?”

“I think it’s your call, Mom.”

She was silent.

Finally I said, “If you don’t want to decide or if you can’t decide, Mom, I will.”

“I think you’d better,” she said.

I looked at the doctor. “Are you saying he can’t get well?”

It’s the kind of question doctors usually hate, but this doctor didn’t hesitate. “Yes, that’s what I’m saying.”

“We have to let him go,” I said. Then I was in tears and couldn’t talk anymore.

“We’ll keep him comfortable,” the doctor said.

Dad hung on for three more days.

All of this happened 15 years ago, and I still sometimes find myself wondering if I did the right thing. Should I have pushed Mom harder to make the decision herself? Should I have waited a few more days to decide? Should I have asked to talk to another doctor? Should I have just said we were going to wait for a miracle?

These are the hardest questions anyone can face. I did the best I could without much time to prepare or to think.

The kind of counseling that would have helped Mom and me, that perhaps would have led Dad to tell us what he wanted in advance may or may not have been widely available in 1994. But it’s available now.

Sarah Palin and her ilk, however, want to make sure health insurance won’t cover it. With her gift for twisting the truth beyond recognition, she calls such counseling “hav[ing] to stand in front of Obama’s ‘death panel‘ so his bureaucrats can decide” whether someone lives or dies.

It’s hard for me not to take that personally. I had to pull the plug on my own father. It was the hardest decision I have ever had to make in 63 years of living. I could have used some help.

That’s why I wrote to every member of my state’s Congressional delegation urging them to stand up to Sarah Palin and all the rest who want to derail healthcare reform. The story of my father’s last days is old news now, but families everywhere face the same heartbreaking dilemma every day.

Many opponents of healthcare reform don’t seem to care. If you’re someone who does care, however, it’s time for you to speak up.


The headline here is an ironic acronym coined by my daughter Elizabeth and me. It stands for Triumph Of The Human Spirit. We use it to describe a particular kind of fiction in which the hero or heroine overcomes incredible adversity, all the while remaining almost inhumanly Trustworthy, Loyal, Helpful, Friendly, Courteous, Kind, Obedient, Cheerful, Thrifty, Brave, Clean and Reverent.

Books like Wally Lamb’s I Know This Much is True come to mind. Elizabeth, by the way, refers to that particular novel by the name I Know This Book is Long. She’s right. I waded through the thing myself—all 912 pages of it—and I’ve been on a strict Wally-free literary diet ever since.

My wife Marge just finished another TOTHS novel a day or two ago and noticed a couple of surprising typographical/grammatical errors in the thing.  When she told me about this I assumed that she had been reading a cheap edition, but on second thought I’m beginning to wonder if the problem was that the proofreader kept nodding off. There is, after all, a limit to how much TOTHS anyone can take.

Fenway Vanity, Part 3

I swear I won’t go on about this anymore after today. It’s just that it took me a while to figure out how to extract the audio track for the rendition of “God Bless America” that we sang at Fenway Park during the 7th inning stretch.

The video of this, by the way, is definitely not for public consumption. I’m guessing it was shot with a hand-held camera because it’s so jerky. The sound seems to have been recorded from what was coming out of the speakers in the park, rather than through a direct feed from the mics. Also, there is image and recording information visible in the corner of the video frame—rather like what you used to see in home videos in the early days of the camcorder, when people didn’t know how to turn this stuff off.

Anyway, the point is that we got to sing for the 7th inning stretch. This was a song that wasn’t in our repertoire, and we had about three days to learn and memorize it.

In the event, the musical wheels came off a bit just before the final “God Bless America,” but you might not have noticed that without this heads-up from me.

So, without further ado, here are The Grateful Dads singing “God Bless America.”

A Healthcare Letter to Maine’s Congressional Delegation

Here in summary form is the letter I sent today to Senators Susan Collins and Olympia Snowe and Representatives Mike Michaud and Chellie Pingree:

Americans of all persuasions are being subjected to a blizzard of disinformation from well-funded interests devoted to preserving the status quo in the area of healthcare. These advocates are NEVER off message, and they never seem to run out of money.

A single-payer system won’t work, they say. “Socialized” medicine is doomed to failure, they say. Significant changes to our current healthcare system will compromise our freedom, they say.

These claims, simply put, are self-serving lies on the part of the insurance and pharmaceutical industries.

Perhaps it is coincidence, for example, that Big Pharma now spends more on marketing prescription medications directly to consumers than it does on research and development, but the history of American healthcare over the last 30 years suggests otherwise.

The question now is whether leaving millions and millions of Americans without the ability to pay for healthcare is really an acceptable cost of doing business in order to protect record profits in the pharmaceutical and insurance industries. These industries clearly believe so.

I’m asking you to consider whether this thinking represents an America whose government you want to serve. What will America have become when, in the eyes of its elected representatives, corporate profits trump the right to life itself for millions of its citizens?

Here are some simple truths that special interests attempt to stifle again and again:

  1. Single-payer healthcare in Canada, Great Britain and France is a genuine success. Citizens of those nations pay less and receive better care than Americans.
  2. Americans now pay more than ever before for healthcare, yet the health of Americans does NOT improve. America’s infant mortality rates, for example, are shockingly high for the developed world. Americans’ life expectancy lags behind much of the developed world.
  3. One American in six under the age of 65, about 46 million people, now live without health insurance of any kind. The reality for these people is that hospitals turn them away if they cannot pay. For such people, American “freedom” means the freedom to die for the sake of the status quo.
  4. It shouldn’t have to be said that these 46 million American lives matter, but it does have to said. Repeatedly. The current healthcare system condemns many of the uninsured to death every single day in order to protect profits.

America’s healthcare actuaries have the data at their fingertips to say exactly how much profits increase with each American condemned to such a death. Perhaps during the current debate you will have the opportunity to ask what this number is. I think the number would do a lot to clarify the priorities of those who defend the current system.

As a resident of Maine and a voter in every single election since 1968, I am counting on you to do your part to ensure that 2009 is the year that America finally begins to find its way out of the national disgrace of our current healthcare system.

By the reckoning of some, I’m just another malcontent. Maybe writing and sending this letter was just a waste of time, but I have to believe that at some point people will decide that letting people die just to increase profits is just plain un-American.

In Praise of Bobby McFerrin

There’s more to Bobby McFerrin than that inane pop tune Don’t Worry, Be Happy, although I have to be careful how much thought I give to that song. I suspect that it still helps him to pay the bills, but I don’t want to end up with it stuck in my head for the next 36 hours.

And there’s more to him than the wonderful a cappella reimagining of the
23rd Psalm that a group of my friends and I sang in church yesterday.

The guy is a genius about the way music works. Check him out here, using his audience as an instrument and “playing” them amazingly.

World Science Festival 2009: Bobby McFerrin Demonstrates the Power of the Pentatonic Scale from World Science Festival on Vimeo.

I’ve watched this video again and again. The more I watch, the more amazed I become at how little direction the audience actually gets. It seems to be that this is stuff we, as human beings, just know. Bobby McFerrin is the guy who noticed that simple, compelling fact.

Take Me Out to the Ballgame

We did it! Although our efforts weren’t broadcast, we sang the national anthem and “God Bless America” at the Red Sox game yesterday. The adrenaline rush was beyond description, and I am still basking in the memory of 35,000+ cheering fans.

The fact that they weren’t necessarily cheering for us is pretty much beside the point. Red Sox fans love to cheer, and they gave us everything they had. When we sang to them, we did our best to return the favor.

When I finally crashed last night, it was as if someone had dropped a brick on my head. I slept like a stone, but I’ve still been tired today. The truth is that I’ve spent most of the day in a state somewhere between coma and outright death.

The Grateful Dads on the JumboTron at Fenway ParkRed Sox home games are rich with tradition and ritual, a lot of it musical. Since shortly after 9/11, for example, live performers have sung a verse of “God Bless America” at every game during the seventh inning stretch. Since 2002, fans have sung along with Neil Diamond’s “Sweet Caroline” before the bottom of the eighth inning. “Sweet Caroline,” in fact, has evolved into a sort of performance art piece where audience participation is necessary to complete the song. In some ways it reminded me of the audience participation material that has developed and evolved in midnight screenings of “The Rocky Horror Picture Show.” Baseball being what it is, of course, the antics at Fenway are a whole lot more wholesome.

But not necessarily more sanitary. The way vendors sell hot dogs in the stands, for example, was enough to turn my stomach. Here’s the deal: If you’re sitting in a middle of a row in the grandstands and you want a hot dog, the vendor takes the hot dog and bun and wraps a single cheap paper napkin around it. Both ends of the bun are completely uncovered. The vendor gives the hot dog and bun to the person at the end of the row who then passes it to the person beside him. And so it goes. Hand to hand to hand, until it reaches the customer. The customer then sends money back to the vendor, hand to hand to hand. Change, if any, then goes back to the customer, hand to hand to hand.

A young couple with two little boys sat at the end of our row. As we passed hot dogs and money back and forth, I said to her, “Isn’t it fortunate that all the people in in this row just washed and sanitized their hands.” The little boys looked puzzled. The young mother blanched.

The boys did not get vendor hot dogs, and neither did I. Make no mistake. If the Red Sox ask, we’ll go back to sing at Fenway Park again in a heartbeat, but if I want a hot dog I’ll go to the concession stand.