A Caveat: This is both a personal and a political statement. It’s subject is one many Americans consider unpleasant or inappropriate, or simply in poor taste. If you are one of those people, rather than warn you away with the standard disclaimer one so often sees when the writer raises a subject that is socially unacceptable, awkward, potentially offensive or simply considered impolite, I urge you to read further. Because this essay, this story, this rant, this manifesto, if you will, is meant for you.
Death stalked my family and I in 2006, more so than at any other time in my fifty years on this earth. And as this crucial and horrid year wobbled to its inglorious end, death’s gaze seemed evermore fixed in my direction. Under other circumstances I suppose I would simply avert my face from its terror and its omnipresence, finding something, anything to distract my mind away from the fear and anger and helplessness which always bubbles up from the emotions I usually keep well buried within the subterranean regions of my unconscious. But, in some strange sense, I feel death itself has a message it wants me to relate, one it wishes told to anyone to whom my poor words may reach. Call me mad, perhaps, but I swear it to be true.
(cont.)
My Grandmother
The personal. This most disastrous of years began for me with the death of my grandmother who died in the first weeks of 2006 at the age of 99, in a nursing home where she felt abandoned and unwanted, and where her care in the last few months of her life left much to be desired. Those who have placed a loved one in one of these modern warehouses for the aged and ailing know of what I speak. All too often the person who is placed in one of these “homes” considers it a death sentence, and with good reason. The care is mediocre at best, the attending physicians and nurses too few and too beleaguered to truly attend to the needs of those in their charge. In far too many instances, a nursing home is nothing more than a place to go to wait to die. Of human contact and affection and simple, common dignity there is little to spare. My grandmother lost her will to live when she was dispatched to what was allegedly one of the best nursing homes in all of Minnesota. It was no surprise to me that she quickly faded once she was removed her from her assisted living apartment, where she had a modicum of privacy and independence, to a full service nursing facility because of her health.
Was it the right decision for her? Who can say with certainty. Perhaps it extended her life a few short weeks, but perhaps not. I do know this. She lost all appetite for food, for conversation, even for the distraction of her favorite Christian television shows. She died with her family around her, and that I suppose was some comfort, but I doubt it justified the humiliation and shame she felt during those last few weeks when she was treated as nothing more than just another commodity in the greater American economic engine of growth and prosperity for — some of us, at least.
The political. Too often, American culture has made an abstraction of death. Even the way we represent death is absurd and unrealistic. It’s something which happens to the bad guys in the movies and television, a visceral moment of joy and exhilaration when we see their villainous plots go awry and the anguish on their faces right before the bombs explode or a cascade of bullets catapults their lifeless bodies off a cliff. Even more grotesque are the horror films, which treat death as some sort of gruesome entertainment, the blood and gore and screaming somehow adding to our own self congratulatory feeling of life. Yet the real process of death in America is hidden away from us. It is far more cruel, far more painful and far more undignified than anything we witness on the big or little screen. We shut away our sick and our dying, those who are emotionally or mentally disturbed, warehousing them out of sight, watched over by the underpaid, the overworked and often the incompetent. The wealthiest of us can afford decent hospice care for our loved ones, but for most people the end of life is brutal, nasty and at its heart unjustifiably inhumane.
My Wife and Sister
The personal. As some of you may remember from an earlier post this year, my wife was diagnosed with pancreatic cancer in June, and underwent an operation which removed her tumor and about half of her pancreas. We were fortunate, very incredibly fortunate, that her cancer was diagnosed before it had metastasized and spread to other organs in her body. Normally pancreatic cancer is a virtual death sentence, because it doesn’t usually show any symptoms of the disease process until the cancer cells have spread to such an extent that surgery and other treatments (chemotherapy and radiation) are of little if any use.
My wife falls into the category of those who have the absolute best prognosis for this killer disease. Her cancer was localized to her pancreas and did not show any involvement of her lymph nodes or other organs. Still, even with all the advances that have been made in cancer treatments and therapies we are aware that statistically there is a very good chance she will not be alive in 5 years, since even statistics for individuals with her level of disease suggest a five year survival rate of no better than 25%. I believe she will beat those odds, but we cannot be certain. As you might imagine this has added a special poignancy to our relationship, both with each other and with our two children.
Since recovery from her surgery, she has completed a ten week course of combined radiation and chemotherapy, and is now on her second course of chemo, this time without radiation, which should last for another 2 to 3 months. Unfortunately the radiation treatments effectively destroyed most of her pancreatic function, so she is now required to take daily insulin shots, one with every meal, and one daily which involves a form of extended release insulin.
Although I am retired from the law due to a disability, my wife has a good (supervisory level) job with a Fortune 500 company, which provides an excellent medical plan. She has returned to work part time, and to date, the majority of our medical costs have been covered. However we live in fear of what could happen should she ever lose her job due to illness of an economic downturn. The cost of her treatments, and the medications I need would be staggering if we had to pay full retail price. As it is, we still spend easily $15,000 to $20,000 out of pocket each year for our family’s medical expenses (primarily co-pays for medications and doctor visits).
But my wife was not the only loved one of mine to suffer this dreaded affliction in 2006. On December 19th, I learned that my only sister had been diagnosed with Stage II or III breast cancer (complete diagnosis is pending the completion of a PET scan she will undergo today). Within a week or two she will be scheduled for a double radial mastectomy and reconstructive surgery. My sister is my daughter’s favorite aunt, so this has been another blow to her especially in a year of blows.
My sister lives in a medium sized city in Northern Colorado, and although she works for a multinational company her health insurance is not the best. Initially her primary care physician wanted to send her to a local general surgeon without any prior consultation by an oncologist (i.e., a cancer specialist). Fortunately she was able to win that fight with her doctor, and her insurance has agreed to pay most (if not all of her treatment) at a reputable cancer center in Denver. She is expecting months of chemotherapy following her surgery, months when her income will drop because her disability policy will only replace half of her income. Still, she and her husband have no children and a fair amount of savings. Financially they should be able to weather this health crisis, assuming she doesn’t lose her position at work, or the extent of her cancer turns out to be worse than what we currently know regarding her condition.
The political. The political side of this story should be obvious. No one in America should have to face life threatening diseases without assurance that they will receive care that is the equal of any other American. And yet we know for a fact that this happens every day. A good example of this sad fact can be found in my recent diary pleading for help for Lee Kinchen, a poor, young black woman who was unfairly denied medical treatment for a brain tumor because she was denied coverage under Louisiana’s Medicaid program. Yet Lee is only one of innumerable people who lack adequate health care coverage to deal with catastrophic illness, much less the everyday garden variety kind. Meanwhile, we, as a nation, continue to spend far more for our health care than any other developed nation in the world despite the fact we have more uninsured people than any other developed country, and despite an infant mortality rate which ranks us below Fidel Castro’s Cuba. It’s an absolute disgrace that we are, in essence, rationing health care, and allowing many people to suffer and die, in order for certain large companies to make exorbitant profits. The richest country in the world? The greatest country in the world? The country that demands we treat all of our citizens as equals? What a absurd joke.
But even if you are one of the lucky ones whose insurance will pay for your treatment in the unhappy event that cancer manifests itself within your body, consider this fact. Since Bush took office, funding for cancer research (indeed for medical research of all kinds) has been reduced from the levels it enjoyed during the Clinton years. Here’s what I had to say about Bush’s medical research priorities back on August 15th of last year:
I have no doubt that the federal government’s commitment to cancer research, education and treatment over the last 35 years made a difference in the my wife’s treatment, and, god willing, her complete recovery. Thirty years ago medical professionals didn’t have the tools to detect tumors like hers, nor did they have the right drugs to treat her cancer, and the cancers of other Americans. Now they do, in large part to the effort initiated by President Nixon and every other administration, democrat or republican since.
This is a major success story of how Big Government can mobilize scientific resources to improve the health and lives of ordinary Americans in ways that otherwise would have never happened without that intervention. Maybe you, or some of your family members, are alive today because of the progress we, as a country have made to fight cancer. A fight largely funded, organized and led by our Federal Government.
Which brings me the current political climate and the administration of President Bush. Go back and look at the text in my last blockquote, the part about the 60 NCI centers established to pursue cutting edge research into the causes and cures for cancer. You see, I’d like to believe that the National Cancer Institute is engaged in cutting edge research. But it just isn’t true. One cutting edge area of research has been limited by Presidential fiat: stem cell research.
When George Bush limited stem cell research by his veto of legislation that many in his own party voted for, he also limited research into possible causes and cures for cancer. You see, research into stem cells is one of those cutting edge areas of research that shows a great deal of promise for discovering both the causes of, and possible new cures for, cancer:
“We expect to generate a panel of molecular markers coming from embryonic stem cells that could be used in diagnosis and in the management of these preventable diseases,” [Dr. Gabriela Cezar] says.
Jessica Quam, a graduate student in endocrinology and reproductive physiology, has been working as a research assistant in Cezar’s lab since last August.
“The work we’re doing could help effectively predict what’s going to happen with new drugs and chemicals in the environment,” Quam says. Lab results are correlating with in vivo observation of birth defects, she adds. “We’re starting to make a lot of progress.”
Cancer research in Cezar’s lab focuses on isolating and characterizing cancer cells in order to explore treatment alternatives. By comparing parental and tumor cell lines, Cezar’s team hopes to learn why some cancer cells become resistant to chemotherapy and radiation treatment.
“The cancer cell, in a way, is an adult cell that starts behaving like an embryonic cell,” Cezar says. She says that it’s no coincidence that some of the best cancer drugs are severe teratogens – agents that interrupt normal development, causing birth defects.
We can’t do anything now to prevent the cancers that are threatening the lives of my wife and sister, but shouldn’t we be doing everything possible to prevent future cancers in our children and grandchildren? Isn’t that what a culture of life really represents?
My Father-in-Law.
The personal. The day after we learned of my sister’s cancer, my father-in-law, grandfather to my two children and a brilliant physicist, mathematician and meteorological research scientist died suddenly from the likely effects of an inoperable aortal aneurysm. Needless to say, this could not have come at a worse time. Christmas and New Years, normally a festive and joyful time for our family, instead became an exercise in grief, despair and (for the adults) fatigue. We tried to do our best for the children (my two and my brother-in-law’s three) but there was no way to avoid the disconnect between a season of “glad tidings and good cheer” and our own private season of mourning.
My father-in-law came to America as an immigrant from Japan in the mid-1950’s. A brilliant physics student at Tokyo University (he placed third in his class) he was unable to continue his education because his father, a businessman, saw no practical benefit to continuing his son’s studies. Unable to get any job except as an observer for the Marine Observations Division of the Japanese Meteorological Agency, he spent 2 years living aboard ships off the coast of Japan. His job entailed making meteorological observations which were useful for navigational purposes for shipping and aircraft, and thus were not subjected to funding cutbacks by the American Occupational Authority at the time.
Through good fortune, and connections with other Japanese scientists who emigrated to America after the war, he received scholarships and grant monies to come to New York University and obtain his Ph., D. Eventually he would go on to conduct atmospheric research and advanced computer modeling at both the National Center for Atmospheric Research (NCAR) in Boulder, Colorado and later as a senior hurricane researcher with the National Oceanic and Atmospheric Administration. A measure of the esteem and respect with which he was held within the community of atmospheric scientists can be seen in this excerpt from NOAA’s announcement of his retirement in 2003:
… During the years Ooyama worked with the Hurricane Research Division, he studied a variety of basic problems related to tropical cyclones, particularly the application of advanced numerical methods for three-dimensional modeling. He published three landmark papers on these numerical modeling efforts that earned him three NOAA distinguished authorship awards, and which served as basic reading for a whole new generation of tropical cyclone modelers.
… Ooyama’s scientific legacy to the hurricane community through these developments and his interactions with numerous colleagues will have a long-lasting impact.
In 2001, he retired from federal service but continued working with HRD as a part-time research scientist through the University of Miami’s Cooperative Institute for Marine and Atmospheric Studies. Among his many accolades are the American Meteorological Society’s Meisinger Award of 1968 for “the successful generation of a simulated tropical hurricane by an electronic computer,” and the Meteorological Society of Japan’s Fugiwara Award of 1971 for tropical cyclone research. Ooyama is also an honorary member of the Meteorological logical Society of Japan and a Fellow of the American Meteorological Society.
In short, my father-in-law was the quintessential American immigrant. A man who came to this country to pursue his dream, and through hard work, intelligence and opportunity achieved a success greater than he could have imagined back in those dark days in occupied Japan following the war. His death was a great loss, not only for his family but also for his adopted country which has benefited from his scientific achievements in hurricane prediction and computer modeling of storm systems.
The political. My father-in-law was not at heart a very political figure. The only real passion in his life (outside his family) was his obsession for his research. Yet in the years before his death I had a few occasions to discuss current political issues with him, and what he had to say about the current state of America frightened me a great deal. He was deeply disturbed by what he saw as the rise of militarism in this country, an attitude that he recognized from the Japan of his youth. The same glorification of the military and religion, often going hand in hand (compare, e.g., Japan’s Emperor cult and it’s connection to the Japanese military with the evidence of infiltration of our own armed forces by radical, fundamentalist Christians, especially in the US Air Force). The same pursuit of overseas wars for imperial aims; wars allegedly based on ideals of freedom or liberation, or on the need for national security, but in truth based on the desire to steal another country’s resources.
And the parallel between the Japan of the 30’s and America under the rule of Bush and Cheney is not that difficult to see. We easily spend a sum for our national defense (i.e., soldiers and weapons systems) equal to what the rest of the world spends on their military forces combined. One of our country’s largest exports are arms. In effect, America is the greatest arms dealer in the world. We have entire industries devoted to profiting from wars, whether our own or ones in which we do not directly participate as combatants, but for which we provide the planes, tanks, bombs, guns and ammunition.
Everyday, I read of American soldiers who died the day before in Iraq, or in Afghanistan, some of them stories of local boys or girls (literally) in my hometown newspaper. My neighbor’s son died in the Marines. Former members of my son’s Boy Scout Troop have joined the military and either have already deployed to Iraq, or are training for the day when they will go “over there.” My thoughts on their safety and well being are always with me.
And what does all this war-making accomplish? Peace? Security? Freedom? Hardly. What war does best, what it is certain to accomplish, is to kill people. Our soldiers kill Iraqis, sometimes Sunnis, sometimes Shi’ites, sometimes defending themselves, sometimes mistakenly, and –yes — sometimes cruelly and deliberately after a complete breakdown of discipline because they have been stationed in a war zone for no reason for too long under stress that I cannot even begin to fathom.
And the Iraqis in turn kill our soldiers, out of anger or hatred or because they want us to stop occupying their land. Or because it benefits their leaders politically to stand up to America by killing a few of the men and women George Bush painted a bright red target upon with his school boy taunts of “Bring ’em on.” Only those who benefit from death, the Halliburtons and Blackwaters of the world, and those who stand ready to profit from all those oil resources under the Mesopotamian landscape, favor this obscene war. The generals and officers who win promotions, the lobbyists who win fat fees, the defense contractors who literally pump our tax dollars into their balance sheets. The militarists of my father-in-law’s nightmares. These are the people who want this war to continue.
The Reality of Death
The reality of death has a way of focusing one’s attention. When we deny that reality, when we fail to see what death really looks like, what it really smells and sounds and feels like, we end up with a culture that denies life. A culture where death is a game, or a necessary sacrifice, or an opportunity to turn a profit; anything but what it really is — the end of all the hopes and dreams and desires of a living human being, an individual as deserving of respect and dignity and simple common decency as any one of us. A culture like the one we have now.
So, that is the message I believe death has asked me to relate to you, all of you who still think our wars are necessary sacrifices for the greater good, who believe a “surge” or an “escalation” of forces in Iraq is a good strategy, or that the invasion of yet another country will somehow finally bring you those other cherished notions of yours — freedom, democracy, security, prosperity — which are just as abstract and empty to you as death has become.
Because, when you deny the reality of death, and especially when you deny any responsibility for the deaths of other human beings which you are willing to accept in the name of righteousness or freedom or free markets or whatever the current conservative ideal du jour, those other noble ideas for which you shed tears are simply hollow, meaningless words.
I’ve been looking at death all year now. Not the glossy Americanized version, but the real deal. It’s not a pretty sight. But I recommend it to you, anyway. It’s the only way I can see to start building a real culture of life that’s more than just a talking point for politicians to abuse and misuse. A culture where everyone gets the same medical care regardless of wealth, celebrity or social status. A country that spends for education and scientific research before it donates money to a fraudulent defense contractor. A nation that views war as truly the last resort, not the first option of someone who has avoided the stink of death his entire life. May we someday have such a country and such a culture.
