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7/23/09: Kennedy

One summer day in 1963, a family put down $1,000 to buy a furnished house, five acres and a car, and moved to Burden Lake Road in Averill Park, a town near Albany, New York. A picnic to celebrate followed immediately in the back yard. Strange things soon started to happen.

Nearly at once, over the house of the family, the dead started to gather. The family was then made up of a writer, William Kennedy, his wife, and their children. It was the writer who had caused this gathering of the dead, having said one too many times that he doesn't hear the Muses, and that his characters do not inhabit him, but that he prefers to inhabit them to some degree. That made the dead mad, and as we all know, mad dead are the worst dead of all, and they started to agitate. The first thing the dead did, as is well-documented, was vote in the general elections of Albany, Schenectady and Rensselaer counties.

And what a bunch they became. Garrulous and hung over, they were a motley crew: bootleggers, gamblers, cock fighters, hobos, turpitudinous ladies, and machine gun-lugging gangsters who liked to make other people dead, and, of course, politicians whose idea it was in the first place to put the dead on the voting rolls. As time passed and the writer wrote but refused to listen to these gathering voices, the dead began voting in record numbers in the general elections, many of them twice.

The dead had time on their side and they waited, watching, and as the writer chose the subject of Legs Diamond for his first book in what would become known as his Albany cycle, they figured he was going to turn to them for the facts on the life of the murderous man. The writer demurred, instead getting out his notebook. Then he did the death-defying thing that writers sometimes do: He went out and actually reported his story, speaking instead to the living, that wild pack of liars who like to tell tales; and there were hundreds of them, it seemed, who knew Legs Diamond, or knew someone who knew him, or never knew the bum but told stories of him anyway, and the writer was as happy as writers get. And the dead waited on, doing what the upstate New York dead do: voting and milling about until the next general election.

Then the writer whose imagination seemed lit from a light within took on the topic of one man's greatest game of billiards, and the dead had no choice but to move from voting only in the generals to looking for more places to be heard. They learned about primaries and special elections. Suddenly no election was too small. They voted for dog catcher, and even for the Rensselaer County District Attorney; in all, they rocked the vote.

Then the writer took on a book he called Ironweed, whose opening lines are these:

Riding up the winding road of Saint Agnes Cemetery in the back of the rattling old truck, Francis Phelan became aware that the dead, even more than the living, settled down in neighborhoods. The truck was suddenly surrounded by fields of monuments and cenotaphs of kindred design and striking size, all guarding the privileged dead. But the truck moved on and the limits of mere privilege became visible, for here now came the acres of truly prestigious death: illustrious men and women, captains of life without their diamonds, furs, carriages, and limousines, but buried in pomp and glory, vaulted in great tombs built like heavenly safe deposit boxes, or parts of the Acropolis. And ah yes, here too, inevitably came the flowing masses, row upon row of them under simple headstones and simpler crosses.

Marion Roach, who writes for thesisterproject.com, is based in upstate New York..

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5/11/09: Alzheimer’s Op-Ed

I just had a birthday, and to honor such occasions, my sister always gives me silver. Not just any silver: It’s our parents’ simple wedding flatware pattern, which Margaret collects for me, a piece at a time. Over the years that the slender boxes have appeared, I’ve wondered if any of it is from the full service for 12 that I pulled in a suitcase through Manhattan’s diamond district and sold one dreadful day twenty-five years ago.

It had been my assignment to sell it — that, and a ring of Margaret’s, one of mine, and, right off our mother’s finger, her engagement ring and platinum wedding band. The sum received was probably a quarter of their monetary worth, and nothing near their emotional value, but it financed two more weeks of homecare for our mother, an Alzheimer’s disease patient. After five years of caring for her at home, we had run through the family savings.

It was a few years before the sale of the silver that I first wrote about us, in a 1983 New York Times magazine article that, impossible as it now may seem, introduced Alzheimer’s disease to millions of people who didn’t know what it was, including the seasoned magazine editor to whom I first pitched the story. This week, HBO began airing a three-night series about a disease that now needs no introduction.

When I first wrote about Alzheimer’s, I searched out some of the best minds of the time, including Dr. Lewis Thomas, the great science writer, former Dean of Yale Medical School and then-chancellor of the Memorial Sloan-Kettering Cancer Center. He called Alzheimer’s disease ''the disease of the century,'' because, he said, ''of all the health problems in the 20th century, this one is the worst.'' That quote got people’s attention, as did the words “angry, incompetent, hostile and incontinent,” which is how I described my mother. She was then 51 years old, two years younger than I am now.

Doing what no child would like to do, I exposed her for who she had become in exchange for the attention that kind of writing might bring. Sure enough, when the story was published, representatives of various levels of my government called and asked what needed to change. Congressional hearings, state task forces and city committees were formed. Many others stepped forward and their voices were also heard. Research dollars were allotted in real sums.

But those were the 1980s, when Ronald Reagan was president, and despite the fact that embryonic stem cell research has been conducted in the U.S. since the middle of the twentieth century, contributing to such wonders as vaccines for both rubella and polio, it was rebranded, became strongly associated with abortion, and was utilized by a political force whose personal beliefs were allowed to become public policy. And that lasted a very long time.

The great art of political compromise is a fundamental facet of our representative government. Deals are made in which one side cashes in some influence in order to move something along. Such was the heralded charge last month, when White House spokesman Reid Cherlin announced that President Obama had “directed [the National Institutes of Health] to formulate the best method for moving forward with stem cell research, both ethically and scientifically.” In this exchange, the president traded away an essential piece of what he had only recently said he believed. When he campaigned, Mr. Obama said he supported the “therapeutic cloning of stem cells.” But as president, he has already traded that position for one that some see as more politically realistic. Under his compromise plan, the president proposes that federal dollars pay for research only on those stem cell lines created from surplus fertility clinic embryos, but that funds continue to be barred from stem cell lines created in the laboratory to study particular diseases. Also barred is financial support for creating genetically matched stem cells for use in treatment of disease, a restriction that is a challenge mostly to future research, though it is that very “therapeutic cloning” research both the president campaigned as having supported, and the National Academy of Science has endorsed.

Embryonic stem cells, which are capable of developing into any type of the body’s tissues or cells, may provide treatment for Alzheimer’s as well as Parkinson’s disease, by regenerating brain tissue; diabetes, by providing insulin-producing cells; and MS and spinal injuries by regenerating nerves. Cloned stem cells not only ensure a genetic match, but also provide cellular models of the disease they carry, allowing researchers to watch the course of the disease in the laboratory, a technique that could lead to cures. After the president issued his executive order, many scientists shrugged; it was, they said, the compromise they’d expected.

I understand the value of a good trade, but I don’t see what makes this one worthwhile. Every American, everybody everywhere, ought to support all possible efforts to find a cure for Alzheimer’s disease. My mother was one of 4.5 million Americans with it; today there are 5.3 million, and by 2050, experts project 16 million American Alzheimer’s patients, a surge that can be attributed in part to more of us living longer, and in part to increased diagnosis. Worldwide, 26.6 million people have it, with a mid-century surge expected to 100 million. My family paid for homecare with an exchange of goods; Medicaid paid for the next eight years of care in the nursing home, where my mother died at 64. Today, out-of-pocket costs for families caring for Alzheimer’s and the other dementias are triple what they are for other illnesses, and the yearly cost to the U.S economy is now at $148 billion. Every seventy seconds someone develops the disease.

Years ago, as my sister began giving me pieces of silver, there again were the long, flat knife handles that I had gently fingered during Thanksgiving dinners, the forks I balanced on the backs of my hands as my parents told stories, the spoons from which I had fed the dog under the table. There was a time when I thought that people were supposed to have silver and china and crystal, and I expected to have them, choosing them at the time of my own wedding. It seemed a tribal currency that was securely in the bank. Merely silver, perhaps, but to me it had been gold bullion, a representation of the standard below which you did not slip. Then the exchange rate changed, and the flatware would be counted among the least of our losses during that awful time.

Right now the National Institutes of Health, while formulating the research guidelines for the new stem cell policy, is engaging in a 30-day period in which they are accepting comments.

Here are mine: Not all trades are equal. Sell your stuff? That’s easy. But never hock your values. You can’t get those back a piece at a time.

Marion Roach, who writes for thesisterproject.com, is based in upstate New York..

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