I was unprepared at the power of disability advocates who speak from the authority of their own experience to say they are not dead yet . They are leading a resistance and opposition to those who too blithely dismiss life in a wheelchair, or blind, or brain-damaged as not worth living.
Maybe this is the beginning of a real debate in America's marketplace of ideas over the value of a human life and it's taking place in the context of the Oscar win of Million Dollar Baby (M$B) and in the case of Terry Schiavo.
Here are what some cripples say about Million Dollar Baby with its "better dead than disabled" message.
John Hockenberry asks whether suicide is the only option available to someone with a spinal cord injury and are they going to tell that to the wounded soldiers at Walter Reed hospital.
Mary Johnson says don't confuse the disability rights opposition with either conservatives or the Christian right, don't dismiss it as part of the left-right culture debate and don't ignore it.
Diane Coleman, an attorney in a wheelchair, wished she had brought a sign to M$B saying, "I Am Not Better Off Dead."
Disability advocates are shocked by Judge Greer's recent order which they call an order of execution because it requires Michael Schiavo to begin starving and dehydrating Terri Schiavo on March 18, 2005 absent a stay from the appellate courts.
"Ordered and Adjudged that absent a stay from the appellate courts, the guardian, Michael Schiavo, shall cause the removal of nutrition and hydration from the ward, Theresa Marie Schiavo, at 1:00 pm on Friday, March 18, 2005."
Disclosure: I've not yet seen Million Dollar Baby and plan to do so; I have a disabled sister; I've great admiration for Clint Eastwood; and I believe that we all have the right to forego extraordinary means to keep us alive if we have executed a proper health care proxy or living will. I'm not against the right to die, I am against euthanasia and murder. I am for the right to live for the old, the retarded and the disabled. Inconvenience, unattractiveness, and expense are not reasons to put them to death.
UPDATE: Wesley Smith writes about the Million Dollar Missed Opportunity Clint Eastwood missed.
[T]he bigger sin of the movie is its peddling of dangerous ignorance. For example, the movie depicts Maggie as a mere slave to medical protocols. In reality, she would have had the legal right to refuse medical treatment--even if it meant that she would die. Thus, she could have ordered her respirator turned off. Indeed, given today's increasing utilitarianist tendencies in health care, bioethicists, social workers, and doctors involved with her care might well have repeatedly reminded her of that fact (hint, hint).
Secondly, while it is true that many people who become quadriplegic later in life become very depressed and suicidal--like Maggie in the movie--studies show that such existential despair is not usually permanent. Indeed, one medical report published several years ago found that the level of depression in people disabled later in life to be no different five years post-injury than that found among the able bodied. Moreover, people suffering the emotional agony that Maggie experienced in the film can be treated for their depression and their suicides prevented--without being force-sedated.
The most important point omitted from the film is that people with quadriplegia, when they are not merely warehoused in a nursing home, live very rich and satisfying lives. That Eastwood never seems to have given this matter any thought is odd, given that Christopher Reeve demonstrated famously that becoming quadriplegic does not mean that meaningful life ends. Similarly, Joni Erickson Tada became a world famous artist, disability rights activist, and Christian apologist after becoming near-quadriplegic. Meanwhile, every day tens of thousands of our disabled brothers and sisters lead meritorious and productive lives, aided by respirators and wheelchairs that come to be seen not as dignity-robbing impediments, but facilitators and tools of independent living.
UPDATE 2 I failed to say that YOU have the responsibility to execute a health care proxy and appoint someone you trust to make the life and death decisions in the event you cannot. No one else can do it for you. I wish Terry Schiavo had done so.
UPDATE 3 Gerald Vanderleun writes on The Passion of the Pope about what we are learning from the Pope as he shows us how to die.
Joseph Cooper writes in the Christian Science Monitor about monuments to decent lives as he reflects on Presidents' Day. If you ever wondered whether the experiences of your life are worth passing on, listen to what Cooper says.
Let's face it, there are few Mount Rushmore lives.
Still, each of us, in our own way, carves out a bit of history that should be set down - for our own edification, and for each of our families and a few friends.
So, he's taken upon himself to write about himself for his son about those experiences in his life he wants his son to know. We all have had high shining moments in our lives that stay bright in our minds. We also all have had crushing disappointments and mistakes that sometimes turn out to have directed us on to a better path. I think that what we think of some of the moments our lives will turn out to be a treasure for those generations that follow us. It's the stories of our lives that are worth saving.
Here's more of what Cooper wants to tell, memorialize and save for his son.
I have only one constituent - a son. Without fanfare, I have inaugurated my own campaign, not just for approval ratings but to pass down a bit of my history - a sense of the little moments that made big impressions, and are housed in my mental archives.
I want my son to know how I felt when:
• As a Little Leaguer, inexplicably, I struck out with consistency.
• As a Babe Ruth sub, I once got a walk and, miraculously, stole second and third.
• As a college freshman, with my father in the stands, I ran a distant fourth in the 100-yard dash, having stayed up the night before to participate in fraternity pledge inanity.
• As an ROTC cadet, I experienced abject fear crawling under barbed wire with machine-gun fire spraying that sector at Indiantown Gap Military Reservation; I endured slurs and condemnations as I walked to and from Ivy League classrooms every Thursday; and I was conflicted when officially advised that I was medically unusable in the jungles of Vietnam.
• As an infantry reject about to enter law school, I saw a college track teammate return to campus in uniform, medals thick on his chest, taking big strides on crutches, and with a trouser leg shortened to above the knee.
• As an infantry reject who had just entered law school, I learned of my ROTC company commander's death in action in Vietnam.
• As a law student, I learned to be cynical about the law and lawyers.
• As a political volunteer, I learned to be cynical about politics and politicians.
• As a teacher, I learned to be cynical about public education.
• As an underemployed public relations writer, I learned about job searches and became cynical about human-resource professionals and economic recovery.
• As a writer of personal essays, I learned that my cynicism was not helpful, and that more could be conveyed by working through disappointments, by purging resentments, and by trying to understand and explain how good things come about.
He also points out, writing these down doesn't require a book-length memoir, nor are they written in stone. You can always rewrite and revise. The point is to begin. You begin where you are. Start with notes on your computer, polish them up and give one or more stories to your children on their birthdays.
Hat tip to Christopher Bailey at the Alchemy of Soulful Work who writes after reading Cooper's essay.
I immediately thought of my two daughters. There will be times in their growing lives that they will wonder who their father was: what he saw that amazed him, what he experienced that influenced him, and he did that made a difference. And there's room to include the less than perfect moments that taught hard lessons.
This isn't an exercise that needs to be put off for when we reach a certain age. Consider it an organic document, one that lives to be added on to.
Carol Colleran had just completed treatment for alcoholism when she learned that her oldest daughter, then only 23, had inoperable ovarian cancer. Colleran took care of her daughter until she died.
"Those 15 months that I shared so intimately with Cathy formed everything that I have done with my life," said Colleran. Cathy had a vision for her mom and didn't hesitate to share it. She told me, 'You have to go back to school and become a counselor,' " said Colleran.
Liz Best of the Palm Beach Post tells the story of the woman now considered the foremost expert on aging and addiction in the country.
Once Cathy died, Colleran's youngest child, Dan, called her and encouraged her to keep the promise she made. Colleran had no money and no job. She told Dan she couldn't do it.
"He told me that he'd decided that I was going to be his project for the next year," she said.
He sent her $750 a month for the year it took her to carry a full course load and finish school. She got a job with Hazelden in Minneapolis, then was offered a job as clinical director at the Hanley-Hazelden Center here, now known as the Hanley Center.
Colleran moved to South Florida where she learned that no one was addressing the growing problem of addiction among the elderly. The US House of Representatives' Select Committee on Aging had released a 1992 report stating that 70% of all elderly hospital admissions were for an alcohol or drug-related illness or injury.
Colleran decided to do something about it and she did, thanks to the vision of a dying daughter and the love of a son.
The failure to execute a health care proxy, a simple thing to do, can break families apart, cause long-lasting feuds, cost hundreds of thousands of dollars, involve legal wrangles that last for years and mean quite literally the difference between life and death.
Without a health care proxy designating someone you trust to make life and death decisions for you, you may be done in by someone, like a disgruntled spouse, who looks forward to your death as a way of inheriting your money.
That's what's happening to Terri Schiavo in what most of the media refer to as a right-to-die case, like the Karen Quinlan case. To me, it is more a right-to-live case. It shows, in all its legal twists and tangles, just who realizes what a terrible precedent this case sets. I tremble at the anxiety the infirm, disabled and elderly must feel as they follow what happens to Terri. We have reached the line between letting people die naturally and killing them.
Terry has severe brain damage since suffering cardiac arrest in 1990. Michael Schiavo, as her husband, is the default person under Florida law, absent a written health care proxy, to decide what his wife would have wanted. He insists that Terry never wanted to live as a "vegetable", in the state she now is in. He wants the feeding tubes removed so that she can die slowly by starvation. There is no corroborative evidence concerning Terri's wishes. Since Terri was considering divorce before her cardiac arrest, since a bone scan in 1991 show numerous injuries including a head injury suggestive of a history of physical abuse before and perhaps after her cardiac arrest, since Michael has moved in with his mistress by whom he has two children, Michael's motives in wanting to disconnect the feeding tubes are suspect.
Nor is Terri in a persistent vegetative state. She is not hooked up to any life support equipment. She is alert, makes direct eye contact with visitors, and responds to and interacts with her parents and others. Because she can not swallow, she does require feeding and hydration tubes. Twelve doctors have testified in court that Terri is not in a persistent vegetative state and with proper therapy could improve significantly, be taught to speak and learn to eat food again
After Terry's cardiac arrest, her husband won an award for medical malpractice amounting to over $2 million which he stands to inherit if she dies. He will receive nothing if he divorces her.
Although he swore under oath at trial in 1992 that he would take care of his wife for the rest of her life, once he received the settlement totaling some $1.7 million, he ordered all rehabilitative services for her be stopped
Heidi Law, a certified nursing assistant who took care of Terri in 1997 sworn in an affidavit:
• Terri has spoken words, 'Hi', 'Momma', and 'Help Me'.
• Terri, was often in a "cold sweat" and silent for hours after visits by her husband
• Terri was denied rehabilitation by her husband who intimidated staff at the nursing home.
• Michael limited the radio stations Terri could listen to only one.
• Terri would chuckle or laugh as she listened to stories.
• Terri adored baths, having her hair combed, enjoyed sweet-smelling lotions and soft nightgowns.
• It was obvious that her mother was Terri's favorite person in the whole world.
Terry's parents have been utterly devoted to her and want to take care of her for the rest of her natural life. Since 1993, Michael Schiavo has ordered information about her condition to be withheld from her family, according to her brother who also says,
When we visit with Terri she is always happy to see us. She lights up when she hears my mom's voice, beginning with a huge grin and laugh, then by trying so hard to talk. No doctor in the world can ever convince my family that Terri isn't resonding to us when we visit her and that Terri isn't trying to communicate with us. It is sad that we are unable to understand what she is trying to say as she desperately needs speech therapy. She has not had any speech therapy in over twelve years. She usually gets tired and then just listens as we tell her about the latest family events. She sometimes cries when we say we are leaving.
Who decides whether Terri lives or dies? Her husband who wants her to die, her parents who want her to live or the judge who is also acting as Terri's guardian ad litem is ruling for the husband.
Terri is not brain dead, she is not on life support, so pulling the plug is not an option. She is not a terminal cancer patient, weak and gaunt. She lives brain-damaged in a healthy body and weighs 138 pounds. If her feeding tubes are removed, Terri faces a slow, extended death of starvation. Starvation to kill people was used in Auschwitz, Bergen-Belsen, Treblinka and in the countless Stalinist gulags.
We don't allow people to starve dogs. Or convicted felons on death row. Why would we allow a vulnerable person to be deliberately starved when her parents and siblings want to take care of her?
Will her family be allowed to see Terri as she is starved which might take two weeks?
Is this not torture of the cruelest kind? By what authority does any U.S. Court have to allow this?
Convicted murderers who are sentenced to death, have years to make legal appeals, and, if their sentence is affirmed, get lethal gas that kills them real quick in the end. For the love of God or the love of humanity, if Terri is to die legally, can't it be done more mercifully.
I had written this post before I came across "What if This was Our Daughter or Sister or Wife? What If It Was 'Only' A Stranger's Life which details far better the background with links to court affidavits. I can only echo Donald Hawthorne's conclusion.
As observers from afar, we cannot independently confirm the veracity of all of the information described above. But reasonable people must admit that the information pattern raises enough material questions about the behavior of Terri’s husband and the judge to have concerns.
And that leads us back to the more fundamental question about what value we will place on human life, including that of an ill woman. If we begin to say it is okay to kill off "weak" human beings, think where that will take us over time. It will take us to a place where certain people will seek to play "God" so they can set the criteria for who lives and who dies. Why not then an elderly parent or a young child, should either become a financial or emotional burden? The freedom to do such great evil will only invite more profound evil over time.
Holocausts do not begin with operational concentration camps; they start on a smaller scale and steadily break down our resistance while many people plead that they are "too busy" to pay attention and get involved.
The stakes are enormous here and there is no neutral ground. Not to decide is to decide. The fight for Terri’s life is another battle to determine whether we are to live in a culture of life or a culture of death.
Terry Schindler-Schiavo Foundation to see documents, the latest information and videos of Terri. With so much demand on this website, it may be down or slow to load.
Hospice Patients Alliance has many of the documents online as well
John Grogan, a newspaper columnist changes his mind
Blogs that are following the Terri Schiavo case
Blogs for Terri has an aggregator, a growing blogroll of supporters and copies of documents and affidavits
Interview of Bobbi Schindler, her brother on February 18, 2005
A certain slant of light
UPDATE: Settlement offer rejected
I just learned that Terri's parents sent a letter to Michael Schiavo in October, 2004 in which they offer to
Michael has refused the settlement. Apparently, nothing less than Terri's death will satisfy him.
UPDATE -2 -Status Feb 25
Judge Greer has ruled that the husband may remove the feeding tube on March 18. The New York Times reports.
He is "no longer comfortable" granting stays. He said that the Schindlers would have to take any further motions to appellate courts before March 18, the date he chose "so that last rites and other similar matters can be addressed in an orderly manner."
UPDATE -3 -What death by starvation is like
Dr. William Burke, a neurologist in St. Louis describes the process: "A conscious person would feel it [dehydration] just as you and I would. They will go into seizures. Their skin cracks, their tongue cracks, their lips crack. They may have nosebleeds because of the drying of the mucous membranes, and heaving and vomiting might ensue because of the drying out of the stomach lining . . . death by dehydration takes 10 to 14 days. It is an extremely agonizing death."
For some people, their collections become their legacies. Many museums and libraries have started from the collections of people who were obsessed with collecting. Think of the Frick or the Getty or the Boston Athenaeum or the Isabella Stewart Gardner Museum or the Smithsonian.
Tony Strading is clearly an obsessive collector. Take a look at his collections and see what I mean.
via Boing Boing: A Directory of Wonderful Things.
Hundred of New England families can't be sure that they were given the right ashes. Two days ago, New Hampshire authorities shut down Bayview Crematory, known for its high volume and low prices, that had been operating without a license for six years.
The Boston Globe reports in "Scandal, uncertainty spur crematory probe" that inspectors were horrified at what they saw.
The discoveries this week at Bayview chilled investigators: unlabeled urns filled with ashes; two bodies stuffed into a single oven; a body rotting in a broken freezer; and a trash bin heaped with charred pacemakers, hip replacements, and prosthetics.
New Hampshire law requires initial licensing of crematoriums and proper handling of dead bodies. Violations of those laws carry minor penalties, he said, but prosecutors would attempt to strengthen the case -- even possibly seeking jail time for the crematory's owners -- by pressing charges for every body that was mishandled.
The Bayview Crematory handled the remains of hundreds of New Hampshire and Massachusetts residents as well as cadavers from Harvard Medical School.
Noemi Costa, whose mother's body was cremated at Bayview after she died three months ago, said yesterday that she was ''very upset."
''When you go through what you're going through when you lose someone, you trust someone to take care of your mother's remains," she said. ''God knows how many remains I have in that little box I have."
The investigation began last year when the deputy New Hampshire medical examiner was arrested on charges that he had stoled prescription drugs from death scenes. Rockingham County Attorney Jim Reams, in charge of the Bayview case is quoted as saying, "Unfortunately, in New Hampshire your car is inspected much more frequently than a crematorium,"
Great reporting by Ralph Ranalli and Raja Mishra of the Boston Globe.
Joan Kennedy's three children sought and were granted legal control of her day-to-day affairs last spring amid her continued struggle with alcoholism
reports the Boston Globe after her son U.S. Representative Patrick Kennedy revealed the legal steps taken yesterday in a statement issued on behalf of all three children.
My brother, sister and I love our mother very much," Patrick Kennedy, 37, said in a statement issued on behalf of him, his 43-year-old brother, Edward Kennedy Jr., and his sister, Kara Kennedy Allen, 44.
''She has done so much for us throughout our lives, and we will take whatever steps necessary to ensure she gets the medical treatment and care she needs and deserves. Families across this country struggle to make decisions for the long-term care of their parents each and every day. These decisions are never easy, and in our case, all too early in our mother's life. . . . We will continue to do whatever is necessary to protect our mother and make certain she receives the necessary treatment for her disease, and hope that others will join us in praying for her well-being," the statement said.
Nearly half of those victims that died in the September 11 attack on the World Trade Center can not be identified despite the best efforts of NYC's medical examiners. All those grieving families will never experience the comfort that comes from properly laying a body to rest or scattering remains in the manner the deceased wanted.
Those unidentified remains will be placed in a memorial when the World Trade Center is rebuilt.
I suspect it will take the place of the tombs of unknown soldiers in people's hearts as they stand before the memorial, stricken dumb with the senselessness of it all and the cost. Today, no soldier killed goes unidentified. It's the citizen victims who endure this last sacrilege.
Joe Rosenthal's great legacy was a photograph he took that became the most reproduced photograph of all time.
The editors of US Camera said, "In that moment, Rosenthal's camera recorded the soul of a nation."
Here, you can read more about how it was taken.
Of the six in the photo, only three survived the battle of Iwo Jima. What astounds me and makes me forever grateful is the sacrifice of the young Marines. Nearly 7000 killed and nearly 20,000 wounded to take the island so that it could be used as an emergency landing base for B-29s bombing Japan. John Hinderaker at Powerline has more.
I was reminded of this quote from Ronald Reagan
Freedom is a fragile thing and is never more than one generation away from extinction. It is not ours by inheritance; it must be fought for and defended constantly by each generation, for it comes only once to a people. Those who have known freedom, and then lost it, have never known it again.
I never cease to be amazed at the variety of burial and cremation choices now available for aging boomers as they plan their last wave out.
I've already written about creative cremains, fantasy coffins, rocket rides for remains to rest in space, green burials, dust to mulch, and in boomer remains how diamonds are forever, silk urns get through airport security, and the promessa process to turn your body into compost.
But I never knew about harleycaskets where you can choose the "custom casket built for bikers" with a velvet interior and custom "highway to heaven panel and decals"
Or the DNA Genome Vault to preserve your genetic strands inside a miniature pyramid with a 3-D memorial bust on the top.
Golfers - and some golf widows - should know that cremated remains can be poured down one of two putting-green holes that lead into two large ossuraries or containers, underneath the putting green for eternity on the greens at Catawba Memorial Park in North Carolina.
If you love parties and fireworks, why not go out with a bang with the help of Angels Flight for a "scattering from within a beautiful fireworks display".
The Eternal Ascent Company is offering franchise opportunities to join their growing business - and the patented process of sending cremated remains on their "final flight to the heavens in a giant balloon."
If you want to make a statement and an environmental tribute at the same time, consider Sea Services for burial in a bio-degradable "Ocean Urn that gently cradles remains at the ocean's depths than safely dissolves".
Sea lovers or scuba divers might really like the idea of eternal reefs where your ashes are mixed with concrete and buried at sea, part of an artificial reef where you sleep forever with the fishes.
Or, in Italian style, you can become one with nature again, buried in Mother Earth, naked and in the fetal position, all tight and cozy in a biodegradable pod from capsulamundi with a tree planted as your marker.
And this is only the beginning of the Long GoodBye.
UPDATE: Just one day after I posted this, I learn that Hunter Thompson is going to have his remains fired from a cannon.
If you hear of any more, let me know.
Sometimes great pain can be transformed into a great legacy. Ani Kalayjian was inspired to become a traumatologist after her personal experience recovering from long-term effects of genocide in Armenia.
A psychology professor at Fordham University, Kalayjian spearheaded the Mental Health Outreach Project that has provided mental health support after disasters in Armenia, Turkey and Japan and now in Sri Lanka.
Our initial seven-member team coordinated with UNITED SIKHS, a worldwide humanitarian organization, to set up a unique ongoing mental health program, working with Ananda Galappatti, the local psychosocial authority, and local psychosocial groups to deliver services and identify local people who can be trained to offer emotional support to those affected by the disaster.
While tradition here holds that people do not talk about their feelings, when given a chance to share their terrifying experiences, emotions poured out.
“Emotional release is important in every culture to purge intense sadness and fears in order to prevent long-term suffering,” says Kalayjian.
You can read more about Finding Life in a Living Hell here
Take some sex, drugs and rock and roll, add guns, lots of alcohol and a ground-breaking, profanity-laden mind-bending prose style, and you were off on a wild ride with Hunter Thompson at the wheel on "a savage journey into the heart of the American Dream"
Those who first read him in the early 70's saw a striking prose talent and felt the frisson of listening to an outlaw tell his outrageous stories in the back of a smokey bar. A colleague Paul Krassner said
It was hard to say sometimes whether he was being provocative for its own sake or if he was just being drunk and stoned and irresponsible," We were willing to risk all of his irresponsible behavior in order to share his talent with readers.
But unlike his model Jack Kerouac, Hunter Thompson never grappled with larger questions of meaning and purpose. He never grew up or grew larger, he grew cartoonish, the model for Uncle Duke in Garry Trudeau's comic strip Doonesbury.
James Lileks writes
A great writer in his prime, but the DVD of his career would have the last two decades on the disc reserved for outtakes and bloopers. It was all bile and spittle at the end, and it was hard to read the work without smelling the dank sweat of someone consumed by confusion, anger, sudden drunken certainties and the horrible fear that when he sat down to write, he could only muster a pale parody of someone else’s satirical version of his infamous middle period. I feel sorry for him, but I’ve felt sorry for him for years. File under Capote, Truman – meaning, whatever you thought of the latter-day persona, don’t forget that there was a reason he had a reputation. right
To some, like Ken Layne who met him once, he was kind
Even though we’d met only once—one long, sunny San Diego poolside afternoon that affected me deeply and permanently—and even though I was just another young punk writer wanting a little wisdom from the Good Doctor, Hunter S. Thompson was kind and generous to me, and he will always be one of the great pillars of my life.... Hunter Thompson was a great American writer, and the finest wordsmith of the West since Mark Twain. His was a rare and special talent, never to be seen again.
But his life and the legacy he left behind never matched his talent. Gerald Vandeleun used to drink with him.
This morning I think even less of him. Yesterday, it would seem, he left in the same way that he lived -- gun-crazy, thoughtless, self-obsessed and selfish to the last second. A gunshot suicide at home, leaving his wife and son to discover and deal with his ruined corpse and clean up the room. What a man.
Interestingly, he had been interviewed after Ernest Hemingway killed himself in Idaho in 1961
"I think he killed himself because he couldn't write anymore," Thompson is quoted as saying in a chapter of Paul Perry's book titled Totally Unclassifiable. "He couldn't write, he was too sick to hunt. He just didn't have it anymore, so he decided to end it."
UPDATE: An unserious man, he could be very funny.
One of Mr. Thompson's more colorful antics occurred in 1970, when he ran unsuccessfully for sheriff of Pitkin County, Colo., on the "Freak Power" ticket. The gonzo candidate " whose platform included changing the name of Aspen to "Fat City" and decriminalizing drugs " decided to shave his head, so he could denounce his crew-cut Republican rival as "my long-haired opponent."
Fran known as the redondowriter has another one of her "Ancestor Deck Cards" up, this one for her grandma Grace.
This is an example of the creative art anyone can do. It's scrapbooking made digital to preserve in your personal and family archives. It's using the present to preserve the past and pass on the future.
A lot has been written about Arthur Miller, and I agree that the Death of a Salesman is a great play but others of his that I saw on Broadway weren't and I'll leave it at that. I can't resist though in quoting Colby Cash who I think has the last word.
When I think about the man who wrote plays about how capitalism thwarts human aspirations, and then got married to Marilyn Monroe, I'm afraid about all I can do is giggle.
Massachusetts General Hospital plans to remove a 79 year old patient from life support next week, against the wishes of the woman's family and despite a court ruling that said her daughter had the right to decide when to pull the plug reports Boston.com today. Via the Corner
Barbara Howe has advanced-stage amyotrophic lateral sclerosis, often referred to as Lou Gehrig's disease, an incurable and degenerative muscle disease. She has been in a hospital bed on a ventilator since 1997. She cannot speak and can barely move, but remains mentally alert, her daughter, Carol Carvitt, told the Boston Herald.
"Her face lights up when you talk to her," Carvitt said. "I visit her four times a week, and my sister visits her every single day. You can see the eye move back and forth and her mouth starts moving."
Dr. Britain Nicholson, the hospital's chief medical officer, said on Wednesday that he ordered Howe taken off life support next Wednesday because her condition has worsened.
"Our hospital's position is Mrs. Howe's condition has continued to deteriorate to the point that it needed to be readdressed," and that it is "in Mrs. Howe's best interest to discontinue life support."
Nicholson informed Carvitt of the hospital's position with a phone call and a letter earlier this month.
"I'm devastated and I'm angry," Carvitt said. "Devastated because they're trying to terminate my mother's life. And angry because they're violating a court order."
What ever happened to the Hippocratic Oath, First Do No Harm? If this Barbara Howe is not brain dead, how can the hospital justify pulling the plug? Is it the family or the hospital who decides when to cut off life support? What kind of legal advice are they getting? Seems to me MGH could be liable for wrongful death.
I'm not an bio-ethics specialist, but I find this profoundly troubling. Really serious issues of life and death are becoming more evident every day as medical technology advances. These matters of life and death are getting very blurry at the edges.
When I was in law school, the rule against perpetuities was something everyone had to learn and had to explain. Think of it as a rule against dynasties, against a family or a group maintaining economic power for several generations.
The rule against perpetuities comes from the common law and prevents property from being held perpetually in trust by voiding any agreement (which varies from state to state) which does not end twenty one years after a life in being, or one generation from lives presently in being plus twenty-one years.
When trusts were drafted back in my early days of practice, they would end twenty one years upon the death of the youngest grandchild or Carolyn Kennedy, both then lives in being.
The rule against perpetuities is now being flagrantly flouted. Thanks to the Wall Street Journal research, I learned that in Alaska and South Dakota, trusts can last forever; in Delaware, most trusts can last forever but real estate can be held in trust for only 110 years; in Wyoming, trusts can last for 1000 years, and in Florida, trusts can last for 360 years. These states are particularly egregious because they don't impose income taxes on trusts created by or for nonresidents. Some fifteen other states have changed the rule against perpetuities and permit dynasty trusts which last forever or for hundreds of years. You don't have to be a resident of the state to take advantage, so long as a trustee is located there.
The result could easily be predicted. The Wall Street Journal reports that $100 billion in assets has flown into personal trusts in those states. The bank and trust companies managing the trusts and holding the assets have collected about $1 billion in annual trustee fees. Families can avoid all federal estate and generation skipping taxes FOREVER under the current federal tax laws. With such trusts, people can protect their assets against bankruptcy, divorce, lawsuits and other creditors. Some estate planners are urging their clients to fund their dynasty trusts now.
Hats off to the research by Robert Sitkoff and Max Schanzenbach at the Northwestern University School of Law and to Rachel Emma Silverman who reported for the Wall Street Journal.
If Congress doesn't do something, we can look forward to more and more of the nation's wealth and economic power concentrated in the hands of bank and trust companies. This is not the recipe for a future great society. I have seen the disastrous effects that great inherited wealth has on too many people who struggle to find a purpose in their lives.
With the nation debating how to protect and fund social security for the future economic health of all Americans, nothing seems more repellent and un-American than the rush by those wealthy and socially unconscious to set up their own economic dynasties and avoid all taxes in doing so. Dynasty trusts are the opposite of great legacies.
UPDATE: While I believe that trusts can be a good vehicle to pass on wealth to people that you know like your children and grandchildren which are the lives in being the Rule of Perpetuities envisioned, trusts that last beyond that time are vehicles to perpetuate the accumulation and protection of wealth for bloodlines forever, a perpetual oligarchy that's antithetical to the American dream.
If you knew that your body after your death could save two people's lives would you sign an organ donor card? Think of the happiness and gratitude of the families
Maxine Walters did. Well, she didn't sign an organ donor card, but she told her long term partner while watching the news of the tsunami in South Asia, "You see all them people dying? If anything happens to me, you should help them."
Maxine came from Barbados to New York City eight years ago and died of a sudden stroke at age 44.
Fortunately, her children understood what their mother and gave permission to harvest the organs.
In addition to the small acts of charity that seem easier to recall in sadness, her family said, Ms. Watson subscribed to the broad view that each person had an obligation to his or her neighbor. In her native country, Barbados, that was just the way of things. "Everyone from Barbados is family to one another," said her sister, Pauline Ellington.
Read the whole story, Linked Forever by the Ultimate Gift
Each of us is here for a brief sojourn; for what purpose he knows not, though he sometimes thinks he senses it. But without deeper reflection one knows from daily life that one exists for other people— first of all for those upon whose smiles and well-being our own happiness is wholly dependent, and then for the many, unknown to us, to whose destinies we are bound by the ties of sympathy. A hundred times every day I remind myself that my inner and outer life are based on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving...
I have never looked upon ease and happiness as ends in themselves— this critical basis I call the ideal of a pigsty. The ideals that have lighted my way, and time after time have given me new courage to face life cheerfully, have been Kindness, Beauty, and Truth.
The most beautiful experience we can have is the mysterious. It is the fundamental emotion that stands at the cradle of true art and true science. Whoever does not know it and can no longer wonder, no longer marvel, is as good as dead, and his eyes are dimmed. It was the experience of mystery— even if mixed with fear— that engendered religion. A knowledge of the existence of something we cannot penetrate, our perceptions of the profoundest reason and the most radiant beauty, which only in their most primitive forms are accessible to our minds: it is this knowledge and this emotion that constitute true religiosity. In this sense, and only this sense, I am a deeply religious man.
A human being is part of a whole, called by us the Universe, a part limited in time and space. He experiences himself, his thoughts and feelings, as something separated from the rest—a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest us. Our task must be to free ourselves from this prison by widening our circles of compassion to embrace all living creatures and the whole of nature in its beauty.
Eileen Mitchell writes about why she likes to read obituaries in Every Picture Tells a Story
I read the obituaries all the time too, although my 40-something peeps are rarely in imminent danger of dying from natural causes. It happens, sure, but not often.
No, it’s the pictures. Those haunting, grainy, black and white photos of the deceased that accompany the obituaries. They draw me in, nip at my curiosity, and often tug at my heart. .
...The dates on their obituary merely suggest an aged, wizened person whose time had simply come. Each photo, however, reminds me otherwise. This was a parent, a friend, a co-worker, a jokester, a lover, an athlete, an activist. Someone once loved whose absence others now mourn. And with their lively, vibrant, half-inch face beaming before me, I too feel a twinge of sadness for the passing of someone I never knew
Oh, I am not going to die, am I? He will not separate us, we have been so happy.
(Spoken to her husband of 9 months, Rev. Arthur Nicholls.)
Charlotte Bronte, writer, d. 1855
(In reply to her husband who had asked how she felt.)
Elizabeth Barrett Browning, writer, d. 1861
I love you Sarah. For all eternity, I love you.
(Spoken to his wife.)
James K. Polk, US President, d. 1849
Here's to my love! O true apothecary!
Thy drugs are quick. Thus with a kiss I die.
Romeo in Romeo and Juliet by William Shakepeare
Yea noise? then I'll be brief. O happy dagger!
This is thy sheath; there rust, and let me die.
Juliet in Romeo and Juliet, William Shakespeare,
You all know Ben Stein, writer, actor, game show host. He's been a columnist for Entertainment online for some 7 or 8 years and today he wrote his farewell column - How Can Someone Who Lives in Insane Luxury Be a Star in Today's World.
It's worth quoting because too many people think that money=legacy, that money and stuff is the only thing you pass on. How we live, how we are of service to others, how we love in the end is what matters. That's what we leave behind and pay forward into the future, that's our legacy. Think of your life as star you get to shine, or not. Are you a blazing comet, a steady light, a collapsing star or a black hole?
Ben, living close to many so called "stars" writes
How can a man or woman who makes an eight-figure wage and lives in insane luxury really be a star in today's world, if by a "star" we mean someone bright and powerful and attractive as a role model?
Real stars are not riding around in the backs of limousines or in Porsches or getting trained in yoga or Pilates and eating only raw fruit while they have Vietnamese girls do their nails. They can be interesting, nice people, but they are not heroes to me any longer.
A real star is the soldier of the 4th Infantry Division who poked his head into a hole on a farm near Tikrit, Iraq. He could have been met by a bomb or a hail of AK-47 bullets. Instead, he faced an abject Saddam Hussein and the gratitude of all of the decent people of the world....
A real star, the kind who haunts my memory night and day, is the U.S. soldier in Baghdad who saw a little girl playing with a piece of unexploded ordnance on a street near where he was guarding a station. He pushed her aside and threw himself on it just as it exploded. He left a family desolate in California and a little girl alive in Baghdad...
There are plenty of other stars in the American firmament. The policemen and women who go off on patrol in South Central and have no idea if they will return alive. The orderlies and paramedics who bring in people who have been in terrible accidents and prepare them for surgery. The teachers and nurses who throw their whole spirits into caring for autistic children. The kind men and women who work in hospices and in cancer wards.
Think of each and every fireman who was running up the stairs at the World Trade Center as the towers began to collapse.
Now you have my idea of a real hero.
....I came to realize that life lived to help others is the only one that matters and that it is my duty, in return for the lavish life God has devolved upon me, to help others He has placed in my path. This is my highest and best use as a human.
The Buddha says it more succinctly - Fashion your life as a garland of beautiful deeds.
Some people fight to be born and some fight to wake up, both to ponder if you are responsible for making life and death decisions for another person.
This baby survived three abortions, was born alive at 24 weeks in a case documented in the Journal of Obstetrics and Gynaecology.
She claimed she had been told that an ultrasound scan had confirmed the child was dead - but shortly afterwards she went into labour.
The 24-year-old mum - who has not been named - changed her mind about wanting to keep the baby after she felt him move on her way home.
Her son is now two years old and is the first long-term abortion survivor to have been born so prematurely.
This woman awoke from a 20 year coma.
"Hi mum," she said to her mother.
The words were a shock and a joy for Scantlin's parents.
"There's just no words," mother Betsy Scantlin told a CBS television news show. "I've just laughed ever since because it's just so amazing."
And this woman emerged from a six week coma to be told that she had been stricken with meningitis and cancer ----and that she had given birth to a baby girl!
David Pogue who writes a weekly column in Circuits of the New York Times also writes a weekly newsletter a
and by far, his most popular subject is how to Rescue Old, Outdated Media. Here from his newsletter are some links that might be helpful to you as you create and maintain your personal and family legacy archives.
TRANSFERRING AUDIO TAPES TO CD:
If you have a Windows PC:
If you have a Mac, here are a couple of different approaches:
TRANSFERRING VINYL RECORDS TO CD: Take your pick of free tutorials:
TRANSFERRING VHS (AND OTHER ANALOG) VIDEOS TO DVD:
Here are several sets of instructions, all variations on the theme.
They're here for Windows: http://www.pcworld.com/howto/article/0,aid,97624,00.asp
http://reviews.cnet.com/4520-3000_7-5071953-1.html . . . .
and here for the Mac:
TRANSFERRING OLD FILM TO DVD: This one's not so easy. There is such a thing as a mirrored apparatus that lets you play your old films from a projector directly into a modern camcorder, but it's a royal pain, it's time-consuming and the resulting quality isn't so great. That's why most experts concede defeat on this one and recommend that you send your reels off to a commercial transfer service. That's the conclusion by this online columnist, for example, which includes links to several such transfer companies (which I haven't tested):
A Connecticut woman who was artificially inseminated with the wrong sperm gave birth to a healthy baby boy in January. While the woman and her fiance are African American, the sperm belonged to a white man. DNA tests are underway to confirm the child's paternity.
Her doctor tried to convince her to terminate the pregnancy, but the woman refused. believing this may be her last chance at motherhood. She said, "The race is unimportant and I want this child to be happy and I want this child to grow and feel complete and whole."
While the lawyer from the infertility clinic was not available for comment, her lawyer said, "While she's thrilled to have this baby, this error has made her life much more complicated."
I'll say. Like who's responsible for child support.
One of the more familiar phrases we hear during Lent is "ashes to ashes, dust to dust." I always thought it came from the Bible until I learned from Ken Collins that the phrase comes from the funeral service of the Book of Common Prayer. Wherever it comes from, ashes to ashes, dust to dust reminds us that life is short.
Ivan Noble had a short life and died at 37 early this month but not without leaving behind a Great Legacy.
Ivan was a BBC journalist who was diagnosed with a malignant brain tumor in 2002. What he decided to do with this terrible twist of fate was to write about it online in a blog he called "Tumor Diary." As the BBC reported that his blog was read by 100,000 people a day
He movingly described his odyssey of chemotherapy and brain surgery, his marriage, the birth of a baby son last year, and a surge of hope -- quickly dashed -- that the brain tumour was in retreat.
But in a final posting on Thursday, Noble wrote: "This is my last diary. I have written it ahead of time because I knew there would be a point when I was not well enough to continue.
"That time has now come."
Ivan felt his main achievement against cancer was that he didn't surrender to fear.
Sure, he had many low points along the way. But, somehow, he kept going, kept his dignity and learnt to get something out of just about every day.
A sense of humour was never far away
When Ivan was first told he had a tumour, his daughter was just six months old. He was days away from going part-time at work to help care for her. Illness changed the kind of father he could be. Balancing his needs with those of a young family was desperately hard, but his children gave him enormous delight. Ivan died having done much to promote awareness of cancer. He was hugely proud that his diaries would be published as a book. ....Ivan died surrounded by love from his wife and children, his parents, brother and friends.....
He kept winning a little bit every day, because he managed to conquer fear.
Ivan made something good out of bad, responded with strength to a situation in which he seemed powerless, with gratefulness to his medical team and his colleagues at the BBC and with overarching love for his family including a new baby. By sharing his journey with tens of thousands online, he heartened other cancer patients and helped them deal better with their own personal struggles and triumphs. By writing, he created a lasting legacy.
In the end Ivan proved he deserved his name. He was truly Noble. Requiescat In Pace.
In Forever Ours, by Janis Amatuzio, tells real stories about life, death and immortality that she, a forensic pathologist and coroner, either witnessed or heard from grieving families.
Her professional responsibility as a coroner is to “speak for the dead.” As a writer, she speaks of the experience of death and the spiritual and supernatural experiences of those near death which are often ignored by medical professionals who only record ‘the cessation of breath.”
If you or anyone you know is dying or grieving, Forever Ours can be consoling, inspiring and comforting. Dr. Amatuzion writes from her heart about experiences for which there is no explanation, but a deep knowing that somehow she’s encountered a glimpse of the Divine and that our loved ones are forever ours.
William Albert Kenyon was born about 3 months prematurely, weighing slightly more than one pound last October. His parents John and Mary Kenyon started a blog to tell the story of their very little boy, to understand better neonatal care and to educate people about pre-eclampsia, the pregnancy-induced hypertension that occurs in about 8% of all pregnancies.
Sadly William died on January 22, 2005 after 3 months spent in neonatal care at the University of Iowa Hospital despite the expert and loving care of his medical team and the great, big love of his parents who said about their son.
Will was a strong fighter, fending off numerous challenges. He liked to hold his hands next to his face and chin. He was most comfortable lying on his tummy. He had a strong grip when offered a finger to hold. A parental hand cupping the top of his head kept him calm and comfortable. Sometimes he tapped his feet as if hearing music in his head. He was soothed listening to a lullaby CD and hearing his parents read stories, especially Goodnight Moon, Two Little Trains, and Jamberry.
What they have done is create a family legacy archive about young Will they will treasure forever, even if and I hope do, have many children. Will's young life and his fighting spirit will affect others for many years to come because his parents transformed a tragedy to a great legacy by documenting his life, their feelings and sharing with us all at willkenyon.blogspot,com.
As with most things in my life, I made meticulous plans about how we would prepare for his arrival and what we'd do once he was here. I signed up for childbirth, parenting, and breastfeeding classes. I read all I could about cribs, car seats, and strollers. I planted tulips and daffodils that would come up just as we were ready to venture out after spending a few weeks inside getting used to each other.
Will's early arrival turned all my plans on end and forced me to focus on each single day. No planning. No long views. Just each day, each hour, sometimes each minute. I never had any idea what was coming next and had to brace myself for each new emotion as it washed over me. Joy. Pain. Fear. Anxiety. Impatience. Confusion. Triumph. Defeat. Love. Love. Love. Will gave me the gift of time. The only thing that mattered during those 12 weeks and four days was how many hours I could spend at his bedside before collapsing into sleep in my own bed back home.
Ghana may have its Fantasy Coffins, but California's got Creative Cremains. A San Francisco company is bringing a unique, personalized alternative to the traditional funeral urn. You can commission a work of art for a custom designed urn in any medium.
Funeral expenses are often the third largest purchase people ever make. Cremation is much cheaper and if you can place ashes in a commissioned work of art that reflects the personality of the deceased, it begins to be a very attractive alternative. Here are some of their custom designed urns.
Carpenter David Ricconi, one of the firm's two co-founders said, "If you spend $10,000 for a casket, you're burying $10,000 worth of bronze. For a fraction of the cost, you can have something done by a future Picasso."
Or you can modify family keepsakes or artifacts to hold the ashes of the deceased. When a mother who collected frog ceramics died, her children chose to modify her collection to hold her ashes so each child could have a special momento.
You can even commission an urn for a beloved pet.
Iraqis Who Died While Daring to Vote Are Mourned as Martyrs by Edward Wong in the New York Times
Salim Yacoubi bent over to kiss the purple ink stain on his twin brother's right index finger, gone cold with death.
"You can see the finger with which he voted," Shukur Jasim, a friend of the dead man, said as he cast a tearful gaze on the body, sprawled across a washer's concrete slab. "He's a martyr now."
The stain marked the hard-won right to vote that Naim Rahim Yacoubi exercised Sunday, and the price he paid for that privilege
Jeremy Brown says it's Reclaiming the Word 'Martyr' and I agree. We are also reclaiming our sense of how powerful freedom is to those who never had it.
We are reclaiming and rebonding.
The rebonding of the American people with the Iraqi people that began with the personal courage shown by millions of Iraqis voting in their first election, took shape at the President's State of the Union address in the form of two women, One a mother of a soldier killed in Iraq, the other a daughter of man killed by Saddam Hussein. Grave at the cost of freedom, both touched by death, they locked in embrace.
Cormac McCarthy wrote "The closest bonds we will ever know are the bonds of grief. The deepest community is one of sorrow." Americans and Iragis are now bound with bonds of pride and grief, of gratitude and grief, more tightly than we can now appreciate. Those bonds will last for decades into the future, great legacies with great impact.
And if their men forget, their women will remind them. Women like Janet Norwood and Safia Taleb al-Shuhail.
The 124th Carnival of the Vanities is posted today and one of my Business of Life posts - Learning Goodness - is featured for which I'm quite pleased. Using Edward Abbey to tie the various entries together, Ken Sain, the host of this week's Carnival, offers up a nice tasting of Abbey's writing. What struck me most was this account of Abbey's last wishes.
Abbey also wrote a message directed to his wife and pertained to what Ed Abbey wanted done for him, and not to him, after his death. A bit of it was published in Outside Magazine in June 1989: He wanted his body transported in the bed of a pickup truck. He wanted to be buried as soon as possible. He wanted no undertakers. No embalming, for Godsake. No coffin. Just an old sleeping bag ... Disregard all state laws concerning burial. "I want my body to help fertilize the growth of a cactus or cliff rose or sagebrush or tree." said the message.
As for graveside ceremony: He wanted gunfire, and a little music. "No formal speeches desired, though the deceased will not interfere if someone feels the urge. But keep it all simple and brief." And then a big happy raucous wake. He wanted more music, gay and lively music. He wanted bagpipes. "And a flood of beer and booze! Lots of singing, dancing, talking, hollering, laughing, and lovemaking." said the message. And meat! Beans and chilis! And corn on the cob. Only a man deeply in love with life and hopelessly soft on humanity would specify, from beyond the grave, that his mourners receive corn on the cob.
Edward Abbey, author of The Monkey Wrench Gang, was an environmental writer who wrote passionately about his love for the desert Southwest in beautifully written essays that made you cry and laugh out loud, sometimes at the same time.
About death, he wrote:
"Death is every man's final critic. To die well you must live bravely."
"If my decomposing carcass helps nourish the roots of a juniper tree or the wings of a vulture - that is immortality enough for me. And as much as anyone deserves."
His chosen epitaph: NO COMMENT
I don't know why I find this so distasteful. I think people trying to communicate with the spirit of a dead person are saner than those who phone a dead body.
A German inventor has come up with the long-life battery powered cell device, the "Phone Angel" so that people in mourning who couldn't make it to the funeral or the gravesite can call the deceased and "keep in touch." Making a Connection with the Dead. The phone is buried in the grave but just below the surface, so when the battery runs out, it can be dug out and returned for a deposit refund. He's sold three at $1953 a piece.
Looks like you don't have to go the Ghana to see Fantasy Coffins. If you're in Dallas, there's the National Museum of Funeral History with an exhibit of 12 fantasy coffins carved by Ghanaian sculptor Kane Quaye. Among the twelve, you'll see a fish, a fishing canoe, a leopard, a Mercedes Benz, a KLM Airliner and a Yamaha Outboard Motor .
In 1932, Julia Lawrence Terry of New Jersey who was working as a volunteer in a food depot during the Depression noticed that many people who came for help had vision problems but couldn't afford eyeglasses, so she began collecting glasses from friends.
Her charitable entrepreneurship has become a national organization with an international mission - truly a great legacy. New Eyes for the Needy collects, recyles and distributes eyeglasses for free to visually impaired people in over 25 countries. Today they are getting ready to send eyeglasses to the tsunami victims.
If you want to make a difference in just a few hours, you can organize a eyeglasses collection drive. For a starter kit, call New Eyes for the Needy at (973) 376-4903