Lost memories
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 25 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 home care 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 magazine article that, impossible as it may seem now, 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. Tonight, HBO will begin a three-night series, produced by California’s first lady, Maria Shriver, 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 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, two years younger than I am now. I exposed her for who she had become in exchange for the attention I hoped the article might bring for her disease.
In the months and years that followed, congressional hearings were held, state task forces were convened and city committees were formed. Research dollars were allotted as well. But those were the 1980s, when Ronald Reagan was president, and despite the fact that embryonic stem cell research had been conducted in the U.S. since the middle of the 20th century, contributing to such wonders as vaccines for both rubella and polio, it was rebranded and became strongly associated with abortion. In the years that followed, despite the well-known fact that stem cell research was the most promising path to finding cures for Alzheimer’s, Parkinson’s, diabetes, multiple sclerosis and other diseases, this country allowed the personal beliefs of the antiabortion forces to become public policy. And that lasted a very long time.
The great art of political compromise is a fundamental part of our representative government. Deals are made in which one side cashes in some influence in order to move something along. This is what apparently happened last month, and shortly afterward, 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 his grand exchange, the president traded away an essential piece of what he had only recently said he believed. When he campaigned, 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 the compromise plan, the president proposed that federal dollars be allowed to pay only for research on 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 new, genetically matched stem cells for use in the treatment of disease. That is the very “therapeutic cloning” research that the president supported during his campaign.
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 partly to longer life spans and partly to increased diagnosis. Worldwide, 26.6 million people have it, with a mid-century surge expected to reach 100 million.
My family paid for home care 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 those with 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 70 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 situation changed, and the flatware would be counted among the least of our losses during that awful time.
Right now, the NIH is formulating the research guidelines for the new stem cell policy and has opened a 30-day public comment period.
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.
