Monday, December 29, 2008

Poetry to cope with one's mortality

In an essay that pays tribute to a friend who died of cancer, a writer in the New York Times magazine shared how her friend's poetry expressed the "clarity" cancer brought to his life.

She quotes her friend, Jason Shinder: "Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality."

In a brief poem, he expressed his inner fear of his disease:

I've been avoiding my illness
because I'm afraid
I will die and when I do,
I'll end up alone again.

However, his journals of poems also express his philosophical belief in hope and something bigger than self:

"The hours are left for vanishing and also for joy and for blessing and gratitude."

(Photo by Deb; used by permission.)

Fiction is more beautiful than reality . . .

. . . at least when it comes to escaping the Nazis.

This story from the New York Times tells of the von Trapp family (of Sound of Music fame), which is now in its third generation of operating a ski lodge in Vermont. Like any other family, the von Trapps have had their share of happiness as well as disputes.

Also from the Times, a soon-to-be-released memoir was revealed to be a fabrication. In the "memoir," the author claimed he survived a Nazi concentration camp in his childhood and then grew up to meet and marry the girl who showed him kindness by throwing apples to him over the camp fence.

The fiction of both stories is beautiful like a fairy tale, but, unfortunately, true-life inspirational stories are exceptionally rare.

(Photo by Emi Yañez; used by permission.)

Sunday, December 28, 2008

End of life series from the Dallas Morning News

The Dallas Morning News ran an excellent five-part series on end of life decisions and difficulties. The "Edge of Life" series follows a palliative care team at Baylor University Medical Center. Nurse Min Patel and several of her patients discuss, prepare for, and address the family, health, and spiritual dimensions of dealing with death in the face of modern medical technology.

My nut-shell summary:
Old way: "Aversion to their own mortality was at the core of doctors' inhibitions in helping patients at the end of life . . . . It made physicians hide behind stiff white coats, rush from room to room, and turn clinical and cold when they couldn't fix or rescue."

New way: Palliative care professionals address all relevant issues head-on. "[They] can't fix everything, but [the patients] don't have to go it alone." The outcomes are better for all those involved when they realize "that using more drugs and devices wasn't always the best way to show love."

The stories in this series are so touching it makes you wish all death and grieving could be as good as this featured approach aspires to.

Also, check out my previous post on hospice care.

(Photo by blueskygirl; used by permission.)

Gay marriage in a positive religious light

Gay marriage is not going away as a national issue (rightfully so), and Newsweek takes a look at the frequently overlooked religious dimension of the pro-gay-marriage advocates. The author explores the biblical references to family, marriage, sexuality, and love, and how the biblical interpretation has evolved over the centuries.

In support of gay marriage, the following excerpt summarizes the article:
People get married "for their mutual joy," explains the Rev. Chloe Breyer, executive director of the Interfaith Center in New York, quoting the Episcopal marriage ceremony. That's what religious people do: care for each other in spite of difficulty, she adds. In marriage, couples grow closer to God: "Being with one another in community is how you love God. That's what marriage is about."

(Photo by tico24; used by permission.)

Tuesday, December 23, 2008

Nursing home "five star" rating system

Medicare has launched a new online system for rating and comparing nursing homes. Besides the various tools to explore nursing home information, the site also provides some basic information on alternatives to nursing home care.

In a charmingly colloquially phrased opinion piece, the Honolulu Advertiser summarizes the new system this way:

The long-term care of Hawai'i's kupuna [honored elders] will become a bigger issue in the future, as more of the population gets older and in need of more intensive care.

Certainly, efforts to put more state and federal funding into at-home care — so-called "aging in place" — should be a priority. It can be more cost-effective, more comfortable for the kupuna and help open up nursing home beds for those who really need that higher level of care.

Making sure Hawai'i's nursing homes offer the highest quality care possible is a joint responsibility — the government, the industry and consumers all have a role to play.

The rating system, while not perfect, provides a useful measure of how we're doing and more important, how we can improve.
A recent report (pdf) on effectiveness of programs for helping low-income Wisconsin residents to live at home or in facilities than nursing homes shows that alternatives cost less than typical nursing home care. The next big goal is to expand the programs across the state so that the alternatives are available to all who want them.
(Photo by laughlin; used by permission.)

Monday, December 15, 2008

End of life decisions

Jane Gross of the New York Times, continues her excellent blog on aging, with which she frequently reflects on her own mother's aging, final illness, and death. This entry is indicative of her series, both in its personal dimension and in the useful information provided.

Gross shares the process of her mother's decisions and actions just before her death:

She often longed for the oblivion of Alzheimer’s disease. But her sharp mind — she never skipped a beat — entitled her to organize her own death, within legal limits, which she did by deciding to stop food and hydration. We had discussed and researched this option, and we had read enough to be reasonably confident this manner of dying was not a frightful ordeal but rather a gentle death. We trusted that an enlightened nursing home like the one she was in wouldn’t force her to eat and drink. They had readily accepted earlier decisions to forgo diagnostic tests or hospitalizations, and later antibiotics for pneumonia.

Our study of what is known as V.S.E.D., or “voluntarily stopping eating and drinking,” was impressive for amateurs, if I do say so myself. My mother had a pretty good death, on her own terms, and we had the nursing home’s full support. I’m proud and grateful to have been able to advocate for her and to have been by her side.
The end of life process will only continue to get more attention as hospice and palliative care programs expand and become better known. Also, advance directives for health care and good powers of attorney for health care can undergird a person's decisions, even when the person is not capable of expressing his or her wishes at the time.

(Photo by mike 23; used by permission.)

We love our pets... part five

If you need something to lighten your mood, or if you want to see what some people do when they have more time or money than most of us, check out the doghouse designs featured in the L.A. Times. The gallery of photos is entitled "Dogitecture."

Many designs parallel human residential styles: modern, country, green. The photos with dogs are the best, such as the big house with the little dog, the dog lying on the roof of the doghouse, and, my favorite, the St. Bernard in front of the Swiss chalet.

We love our pets--part four

Divorcing and pet custody?

Earlier this year, the Santa Barbara Independent ran this piece on divorce, pet "custody," and hints on prevailing in court on the subject.

Tuesday, December 9, 2008

A man famous for his amnesia passed away

Last week Henry Gustav Molaison, known to his medical and scientific observers as H.M, died at age 82. At age 27 Molaison was the subject of surgery to treat severe seizures he experienced, but ultimately the surgery left him with amnesia--he could not remember anything beyond selected memories of his pre-surgery life.

Here's a snippet from the New York Times obituary for him:

For the next 55 years, each time he met a friend, each time he ate a meal, each time he walked in the woods, it was as if for the first time.

And for those five decades, he was recognized as the most important patient in the history of brain science. As a participant in hundreds of studies, he helped scientists understand the biology of learning, memory and physical dexterity, as well as the fragile nature of human identity.
From the Times account, it seems that he led a pleasant, if not traditionally fulfilling, life.

In conjunction with noting Mr. Molaison's death, Slate.com offered a brief explanation of amnesia, including this description:

There are two main types of amnesia: retrograde and anterograde. Retrograde means you lose your memories from before the surgery, injury, or whatever incident caused the memory loss. . . . Anterograde means you lose the ability to form new memories but can still recall things from before the inciting event. That was the case with H.M., who could remember scattered childhood memories.
(Photo by erat; used by permission.)


Pearl Harbor anniversary

The anniversary of the bombing of Pearl Harbor was December 7, and the Honolulu Advertiser had this piece about the annual remembrance and the dwindling number of veterans who were there. Most surviving veterans are in their eighties and nineties, and the last official reunion was held in 2006.

Here are comments from one of the veterans at the remembrance:

"I feel very proud that I've survived," said [George] Smith, of Washington. "I'm very honored by all these people. I'm no hero. I was simply doing my duty."

In a related anniversary, on December 18, 1944, the U.S. Supreme Court decided Korematsu v. U.S., which upheld the racially discriminatory Japanese interment camps during World War II. Here is a link to the ABA Journal's short piece on Korematsu.
(Photo by Andrew Shimabuku / The Honolulu Advertiser.)

Wednesday, December 3, 2008

International Day of Persons with Disabilities

December 3 is the United Nation's International Day of Persons with Disabilities. This year's theme is "Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us."

Slate.com offers this incredible photo gallery of persons living with various disabilities--truly a testimony to the power of the human spirit.
(Photo by Dan Kamminga; used by permission.)

Tuesday, December 2, 2008

New link: Exceptional Parent

Check out the Exceptional Parent website for numerous resources for parents and family members of those with disabilities. I have added the link to the list on the right.

To access articles or information, you need to register, but it is simple and free. In addition, you can see topics covered in the print version of the Exceptional Parent magazine, and you can subscribe or order individual copies.

Mental perception can be "fooled"

A fascinating piece on psychology and mental perception appeared in the New York Times.

"[N]euroscientists have shown that they can make [mental roleplaying exercises] physical, creating a “body swapping” illusion that could have a profound effect on a range of therapeutic techniques. At the annual meeting of the Society for Neuroscience last month, Swedish researchers presented evidence that the brain, when tricked by optical and sensory illusions, can quickly adopt any other human form, no matter how different, as its own."
The end result, through special camera-equipped goggles, creates an alternate point of view by fooling the brain into "inhabiting" the body of another.

(Photo by reportergimmi; used by permission.)

Can surrogacy ever go "mainstream"?

Recently, the New York Times magazine told the story of a woman whose child was carried by a gestational surrogate.

In expressing her conflicting emotions, the author writes, "It was a desperate measure, to be sure, and one complicated by questions from all the big sectiors: financial, religious, social, moral, legal, political."

Even amidst her mix of feeling inferior and feeling elated, the new mother shares her joy of participating in the miracle of life: "The miracle of [our son's] existence speaks to the generosity of humanity--and to the magical, unified coordination of more than a dozen people in the act of his creation."

Earlier this year, Newsweek reported about military wives who become surrogates for numerous reasons, including the extra income.

(Photo by anyjazz65; used by permission.)

Father Damien's leper colony has come a long way


In 1873, Father Damien, a Belgian priest, arrived in Hawaii to begin a mission for those permanently exiled from society, patients suffering from leprosy, now known as Hansen's disease.

As the New York Times reports, a community of patients remains in the village on Molokai where the mission began. "Today, just 24 patients are left: 24 people who experienced the counterintuitive twinning of loneliness and community, of all that dying and all that living. Here, you may have grieved over the forced surrender of your newborn; you may also have rejoiced in finding a life partner who understood. "

The story of the survivors is a testament to their dignity, which was first championed by the nineteenth century missionary who lived, served, and died among them.