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Is it Melanoma or a Benign Mole? It Depends on Who You Ask.

To follow up on this post: the pathology report indicates all the affected lesion was removed and I have been given a clean bill of health. I’ll be monitored by a dermatologist. But the news could not be better.

An article on “diagnostic drift” today in the New York Times sheds light on a personal experience I’ve had the last month. Four weeks ago I underwent a biopsy for an unusual looking mole. The pathology report came back indicating it was melanoma in situ, a malignant lesion. I had skin cancer. A form of cancer that is successfully treated but which in later stages can be fatal. This is not exactly the kind of news that makes your day.

I was referred to a surgical oncologist and after a ten-day wait marked by anxiety, questions and numerous visits to the Mayo Clinic webstite and WebMD, I heard from the oncologist that a second pathology reading indicated the mole was more likely a melanocytic nevus, a benign mole. According to this interpretation I did not have cancer. Never the less, he said, the chances this mole could develop into a malignancy were good and it needed to be removed.

This is the diagnostic drift referred to in the study highlighted in the article–the growing tendency of some physicians to diagnose benign moles as malignant cancers.  The reasons are discussed in the article. What the article does not discuss is the dilemma of the patient. After having the bejeebers scared out of you, how do you evaluate such discrepancies? To the patient it’s more than an academic reading of the data. Regardless of the second opinion, the diagnosis that stuck in my mind is the first. I had cancer or I would get cancer.

These conflicting opinions presented me with several issues, not all of them related to health. I tend to keep my own counsel on such matters and would have preferred not to make this health condition public. However, given the earlier interpretation, I agreed with the oncologist that the lesion should be surgically removed. As it happened the only surgical date available fell on the same day as a meeting of the board of directors of our organization. I could not leave a meeting of my own board of directors without providing a good reason, so I told them about the situation. They were understanding and supportive.

And I cancelled attendance at another meeting out of town out of concern for hauling and lifting luggage with an incision on my shoulder. So now the word is out.

The surgery was uneventful. I am surprised at the length of the incision (six inches). It’s considerably longer than I expected, but the surgeon said he believes the excision removed all the affected tissue and the prospects for a positive outcome are quite good. I’ll get that pathology report on Thursday.

Whatever it says, I’m convinced we did the right thing. And I learned an important lesson. You have to arm yourself with knowledge from reliable sources. You have to ask questions. You have to assert yourself into the process. And you have to balance your fears against objective information and keep your head in the conversation. This isn’t easy but it’s necessary in order to manage your own care.

It falls to the patient to swim through the cross currents of diagnostic drift.

Depression: A Silent Global Burden

In twenty years depression will affect more people globally than any other disease, according the World Health Organization. A BBC report points out the prevalence of the disease among the poor and those living with disabilities. The BBC says developing nations spend only 2% of their health dollars on mental health while developed nations spend 200 times more.

However, the persistence of depression in the developed world reveals how difficult it is to treat the disease successfully. In a fairly comprehensive article U.S. News says medications are effective for 30 to 40% of the depressed.

Mental health is a sensitive subject, often misunderstood worldwide. The burden of depression adds to the struggle to survive in places where hardship is daily reality. Yet it’s a silent disease, often untreated and in some areas unrecognized.

The seeds of mental health treatment are being sown in many countries where these conditions haven’t been identified before. But they are very few and of limited scope. Anyone who’s seen people traumatized by war, natural disasters or political oppression, those left vulnerable by physical disabilities and diseases, and those struggling with emotional pain of the daily grind of poverty has also seen how these external conditions exacerbate depression. In most developing nations this includes the majority of the population.

WHO’s identification of the problem is a good first step, but many more steps will be required if the projection is correct.

Health Care is About How we Care for Each Other

Despite all the talk about costs, the health care debate is about more than money. It’s about how we care for each other. It’s about connection and community. By connection, I mean our recognition that we are connected as a human family and in a social network. We are no stronger than our concern for the most vulnerable among us. By community, I mean the principle that has been a foundation of the democratic experiment: that in addition to individual rights, we have a mutual shared responsibility for each other and this wider social network protects and assures rights for all of us. Civic responsibility and morality. The political posturing that has marked the debate the past few weeks could not be further from this reality and that’s a national disgrace.

Many of the most vulnerable are those with chronic diseases, some of which are untreatable but for palliative care; the poor who cannot afford access; seniors of limited means; children, who by their innocence are dependent upon adults for proper treatment. In a society of abundance, yes, even in the great recession we live abundantly, the idea that we are unable to care for all our citizens is disgraceful. Health care is a measure of what we strive to be, or what we have become. It is a moral issue.

It’s deeply disturbing that living wills and advance directives have been mischaracterized as death panels. I’ve found these to be among the most helpful and comforting tools available when I’ve faced agonizing decisions for which there are no easy answers. In those difficult decisions, I’ve wanted the wishes of a loved one to be followed and the sanctity and dignity of their lives respected. I’ve not wanted others who don’t know them to impose their views or judgments upon them. That’s the value of living wills and advance directives, exactly the opposite of the description of some political operatives today.

The inaccuracies and outright misrepresentations about reform add to the concerns and emotional burden of people who are already living in a vulnerable state. The harm done by introducing the fear they will lose even more of their access to health care is too high an emotional price to pay for political maneuvering. Many have already experienced significant cuts. Fortunately, some religious leaders in the mainline denominations and progressive evangelicals see it in this way. They are speaking out and organizing. This is as it should be.

If the religious community were to remain silent on this issue of civic responsibility and morality, it would risk betraying fundamental values about the dignity of human life and the value of our connection in community. The real cost of our uncivil debate on health care and our failure to reform, is not the loss of dollars but the loss of connection and community.

A Good Week

It’s been a good week. I traveled to Geneva with United Methodist, Lutheran and United Nations Foundation colleagues to meet with staff of the Global Fund to Fight AIDS, Tuberculosis and Malaria. United Methodists and Lutherans are partnering with the United Nations Foundation and the Global Fund to raise funds to eliminate malaria. The conversation was stimulating and exciting. I have more hope that the world can conquer malaria than I’ve ever had. The goal is 2015, a date called by UN General Sec. Ban Ki Moon. It’s great to leave a meeting feeling more excitement and hope than when you began.

Sen. Bill Frist and Larry Hollon A day after this, Sen. Bill Frist and a colleague came to our offices. Along with two of my staff colleagues, we had a very hopeful conversation about common concerns in global health. Since leaving the Senate he’s devoted his time to global health and poverty. We discovered several places where our interests intersect. And I learned that he played a key role in creating the Global Fund. Along with him, I believe the Global Fund is one of the greatest hopes the world has for significantly reducing the human toll of these three major diseases.

We also discovered we share relationships with people and organizations working on health and communications. The role of communications is often overlooked in addressing poverty and disease. But the challenge of getting life saving information to people, especially in underserved remote, rural regions where poverty is endemic is a function that deserves our careful consideration. I’m glad we were able to talk about it.

All in all, at week’s end I looked back and reflected; it was a good week.

Malaria and Hope: Why Domingos Antonic Matters

This is about hope. I ask you to stay with me and I’ll get there. But first I need to recount an experience that put hope to test. It starts with this lead-in to a story in Interpreter magazine about efforts to prevent malaria:

Watching a small child die from malaria is a horrific experience.

First come the headache, tiredness, weakness in the joints and general malaise,

followed by a very high fever.

Then the fever’s effect on the brain causes the child’s muscles to jerk, just before the end.

As I read this lead, I felt my heartbeat quicken and a sense of deep sadness came over me. I’ve seen children die in too many places. Honduras. Cambodia. More places in Africa than I can recall. This story is about 8-month-old Domingos Antonic who died of malaria in Malanje, Angola. One of the thousands whose lives are stolen by a disease of poverty.

But Domingos reminds me that every death is real. A face, a family, and real tears.

As I write these words I continue to feel a mixture of fear, frustration and anger. Fear because it’s so disorienting to see a child, or anyone else, overtaken by the symptoms of malaria and to be utterly helpless to change them. To witness the inexorable, uncontrollable ebbing away of life is fearsome.

Frustration, because this is preventable and treatable if addressed early on. And anger because it’s preventable and treatable, and economically feasible to end it. It doesn’t have to happen. Children need not die from this disease, nor many of the other diseases of poverty. And that alone is enough to cause a simmering boil of frustration within.

I know that emotional reactions are easily spent and sometimes they don’t generate much in the way of real change. I know that good people are doing all they can to bring health and healing to the world. In fact, Sen. Richard Lugar writes in the same edition of Interpreter about his legislation that would increase agricultural aid to combat hunger (Senate Bill 384, The Global Food Security Act). And I know that donors want program plans, measurements and outcomes–rational, systematic and manageable responses. But the Interpreter article set aflame old frustrations.

After all these years children are still dying in the poorest nations for lack of knowledge about preventing this disease and a ten dollar bednet. How many more? For how long?

Reading the article, my mind’s eye recalled the look on the face of the young indigenous mother I met thirty years ago at a health clinic in El Paraiso, Honduras cradling her malnourished infant. Her quietness and deep, brown eyes still haunt me. The memory of the labored breathing of the tiny child lingers. Then I recall a little body wrapped in white linen and laid into the ground in an African village near a river. And the look of pain on the face of a teenage boy in Cambodia, his brain swelling, unable to resist the progression of the disease.

The death of one child, when you know about it, doesn’t fade into the mists of memory to be forgotten. It stays somewhere in the pool of life experiences and comes to the surface with a word, a sound or an image. And the pain it carries is sharp and cuts deep for you know this is not the way life has to be.

Pain and grief are part of what it means to wake up to poverty every day in the developing world, but these conditions aren’t mysteriously inevitable. We can do something about them. They are not immutable reality. Nor should we be unaffected by them, not after looking people in the face and seeing what poverty means.

Hunger and disease are not about huge numbers. They are about one face at a time. Sometimes I think we let words mask our pain or gloss it over too easily. Lubricated with sweetness, they slide from our lips. “Hope never dies. Hope springs eternal.” Stand over your dying child, unable to do anything to wrench him or her from the grips of death, and then come and talk to me about hope.

I remember sitting with a mother in Brazil in a stinking favela talking about her son who was marked for murder by a vigilante group called “justicieros.” She had moved here hoping it would be safer. She was constructing a hut with boards scavenged from a wooden piano crate. We talked of life and hope. She was trapped in poverty. With tears sliding down her cheeks Maria spoke of the fears she had for her son. As she weighed the challenges she said, “But we have a saying in Brazil. Hope is the last thing to die.”

I think Maria’s view of hope is more accurate. When neglected, hope does die. Every day. With Domingos and every other child taken by the diseases of poverty and the injustices of life. That’s why we dare not forget Domingos nor all the others and turn away from them. If we do, we will lose our own humanity and hope will die. Hope, against all odds, is one of those qualities that defines our humanity. We must not let hope die.

There are many ways to keep hope alive:

  • Give to the Imagine No Malaria campaign to eradicate malaria in The United Methodist Church or the organization of your choice.
  • Participate in a volunteer partnership offerred by many local churches and other groups that provide volunteer opportunities to distribute bednets and provide hands-on labor.
  • Support Sen. Lugar’s Global Food Security Act, Senate Bill 384.
  • Read Nicholas Kristof’s comments in which he says we might get more support for humanitarian assistance by focusing on stories of individuals and opportunities rather than mass numbers.
  • Read Bono’s op-ed this morning and reflect on how we are all connected by our common DNA and consider how the death of any child is a loss to the whole human family.

It comes down to this. Hope is our responsibility. It’s not some mysterious force disconnected from hard realities. But it may, indeed, be written into our collective DNA, activated when we recognize that Domingos and every other preventable death by poverty is a call to us to be responsible for each other. When we care for each other, there is hope.

So you absorb the pain, fear and frustration and carry on. I laid the article down and walked away, collected my thoughts and re-grouped. Then I set about telling this story. I did it because Domingos is inside my brain. Look into his eyes and you cannot turn away your gaze. Domingos matters. And as long as I believe that, I can dare to hope and work to keep hope alive.

A Hopeful Postscript: The people of The United Methodist Church have entered into a campaign to raise $75 million to eradicate malaria. They have contributed well over six million dollars so far.

An article in the NY Times reports that Pres. Obama is asking the world’s wealthiest nations to contribute $15 billion to help the world’s poorest farmers feed themselves and their countries.

The Media and Junk Culture

Update : Bob Herbert writes a compelling assessment of the culture that has developed in the wake of the Jackson era. He says Michael mania was the beginning of extreme immaturity and grotesque irresponsibility.

Around three in the afternoon on July 2, three cable news networks simultaneously played and replayed a video of Michael Jackson’s last rehearsal taken two days before his death. California was effectively  bankrupt, issuing IOU’s for the first time since the Great Depression. Unemployment was up and stocks down, depressing hope for the end of the Great Recession. Sen. Kennedy announced a plan for national health care costing far less than those proposed before. But Michael Jackson, whose tragic death is as revealing of the paucity of celebrity culture as anything, led the news.

The video was provided by the company that bankrolled his planned comeback. There was much speculation that it was released as a preview of marketing plans yet to come. The cable networks took the bait.

That we are told more about Jackson’s will and the custody of his children than we are informed about the "public option " in the health care debate, war in Congo or the current state of Darfur , might understandably lead a reasonable person to wonder how the sideshow of popular culture became the main event.

In a provocative post on Alternet, Chris Hedges writes about the compliant relationship between junk culture, junk politics and the media. Hedges says over the years major media succumbed to corporate propaganda enabling corporations to undermine long held cultural values, redefining "American culture" and replacing it with a manufactured commodity culture. We are left with junk.

I thought his thesis severe until I turned on the TV that afternoon and saw it lived out before my eyes. David Shuster even analyzed it as he participated in it on MSNBC.

Chuck Todd, NBC’s chief White House correspondent, spent a quarter hour of Hardball, a program dedicated to politics, on Jackson. Talk about the marriage of junk culture and junk politics.

CBS and NBC led their national newscasts with Jackson. ABC opened with the unemployment figures released that day, the cutback in state government services and comments by President Obama about the state of the economy. To their credit, ABC got to Jackson eight minutes into its nightly newscast.

Hedges claims this  insidious, corrosive process has undermined journalism and traditional cultural values.

Recently I’ve been reading a lot about key issues confronting traditional institutions and organizations and their constituencies. I recall research by the Barna Group that says 18 to 34-year-olds say they can’t see a difference between professed Christians and others in the culture. One would assume that claiming the values of faith would distinguish a person of faith from the wider culture, especially if that culture is based on consumption, the attainment of personal wealth and idolizing celebrity.

These cultural values are in conflict with those of Jesus who called his followers to give up their material goods and serve other others, not hoard their wealth, take advantage of others for material gain or seek fame.

When Christianity, or at least those who claim Christianity, becomes indistinguishable from junk culture it has a problem. In fact, junk or not, it’s fair to ask if those who follow the teachings of Jesus can identify with any culture, or must stand within culture and remain in tension with it? If following Jesus is an ultimate claim, a claim that gives meaning to life and reshapes it, then that claim will, at some point, result in conflict with virtually any other system, most especially a lifestyle of consumption, excessive admiration of celebrity and political maneuvering.

It begs the question: What difference does belief make? What difference does it make to follow the teachings of Jesus? H. Richard Niebuhr addressed the issue in Christ and Culture and concluded that dynamic interaction between Christians and culture will change both.

The answer to these questions will be more determinative for the future of faith communities than the current cultural debates dividing them. The earliest followers of Jesus described their faithfulness as following The Way (Acts 19:23). The Way was an active journey through which commitment to God and other persons was expressed. And it brought them into conflict with the existing order. It was about what you live for, and in those early days, what you were prepared to die for.

More than dogma, it was how you lived your life in faithfulness, and it remains so today; ideals that cannot be contained by the smallness and shallowness of a culture of celebrity, consumption and politics.

Hedges holds out a glimmer of hope that a form journalism could emerge that combines rhetorical ideals with authentic storytelling, respecting but not misusing emotion, and it could help us to reclaim a more genuine, humane culture. Communities of faith will require a similar dialogue if they are to re-affirm that following Jesus really does make a difference; faithfulness to a way that is open to new possibilities, expansive, compassionate and committed to justice for all. A faith that does no harm, does good and helps us stay in love with God.

It isn’t rooted in popular culture and it’s unlikely to abide with it easily. But it could be a transformative presence in an otherwise sad and shallow culture of distraction.

Faith and Religious War in Somalia

Quran student As if fractured Somalia were not divided enough, a report this week says Islamic groups are realigning for renewed fighting. Somalia disintegrated 15 years ago when a corrupt government fell. Clan fighting plunged the country into anarchy and it’s remained there.

Jeffrey Gettleman writes in the New York Times that Sufi moderates are joining the fight against the Islamic Shabab insurgents. The Shabab teach an extreme form of Islam and have destroyed Sufi mosques. It’s a new and dangerous turn. Gettleman says Western nations hope the Sufis taking up arms will give moderates the upper hand.

More likely, however, it’s a sign of an intractable situation and a desperate hope for change. Trading clan for sectarian warfare is a dangerous exchange. In a society riven by division, it’s yet another deadly divide. The idea that changing the configuration of violence as a path to civic stability indicates the hopelessness of any other path and it takes more than a leap of faith to believe it will work.

It requires ignoring the potential for wider regional instability and rationalizing away the cultural and religious tensions that have long simmered in Ethiopia, disregarding the religious cleavage that is a major factor in the genocide in Darfur, minimizing destabilizing border tensions between Ethiopia and Eritrea and long-standing rivalry between Somalis and Ethiopia.

If the Sufis resist the insurgents and establish a working government with support across Somalia, it will reverse a decade and a half of bloody fighting that has taken a horrible toll on the Somali people and has made the region a tinder box. But the long term solution is to address the poverty, disease, land disputes and the need for justice. In Somalia’s anarchic state these have not been at the top of the list of policymakers. But the risk of Somalia becoming a base of operations for terrorist training and international lawlessness is clear.

Somali pirates have reminded the world of the danger of this failed state, once considered so remote and insignificant it was virtually forgotten. We now understand that’s an inaccurate perception.

It’s a long shot that a moderate government can take control. If it does, however, it will need more than moral support. It will need development assistance, infrastructure reconstruction and technical assistance. The last thing the Somalis need is more bloodshed and the last thing the world needs is a prolonged religious war in the Horn of Africa.

Are Institutions Obsolete?

Institutions. We don’t like them or trust them. Sometimes we want to bring them down a notch or two. They’re cumbersome, territorial, political and dysfunctional. They’re always behind the times. It’s easy to dislike them.

Writing in the 19th Century about governing institutions the sociologist Thorsten Veblen said, “Whatever is, is wrong.” He was observing the rise of institutions for a newly affluent “leisure class” in the Industrial Revolution.

Veblen said we form institutions out of our social experiences. But circumstances that cause us to create organizations have already passed by the time we get organized to deal with them. Therefore, institutions are always behind the times. It’s a social paradox.

I just sat through three weeks of non-stop meetings of an institutional church. Thinking about the institution is top of mind right now.

There’s no doubt in anyone’s mind that this institution must change. It’s organized around human experiences of the 1950s, 60s, 70s and 80s. The need to change is urgent. Not merely for financial reasons. That focuses attention, but the change was needed long before the global economy fell off the cliff.

Bishop Gregory Palmer, President of the Council of Bishops of The United Methodist Church, told the Connectional Table and General Council on Finance and Administration this week that the church is not structured for life in the digital age. “Life happens,” he said, “off-cycle of the General Conferences of The United Methodist Church. And we’re not structured to make certain movements that might need to be made in a world, in a digital age that is changing everyday.” The General Conference is the legislative and governing body of the church.

Bishop Palmer repeated his call for a realignment of the church to allow for faster response to its mission.

I think he’s right on target. When the last general conference met barely one year ago Twitter wasn’t even known to the delegates. Most had probably heard of Facebook but weren’t using it. That’s changed. Today young adults and youth are moving from Facebook as older adults are flocking to it. Twitter is the current most popular tool for social media and many others are also out there. And we’re still learning how to use it.

These tools have affected how people relate to each other and form communities. They obviously affect how we communicate with each other. Community is a central part of the life of the church–worshiping, learning, supportive community. But community enhanced by digital tools is something the institution hasn’t known before. And we’re not organized to adapt to it quickly enough. Veblen was as right for our day as for his.

The institutional church isn’t obsolete, but it must change. I’m skeptical of anyone who claims to know precisely what the change should look like. But I’m also in agreement with Bishop Palmer that the need for change has arrived, if not passed, and we must get on with it. We’ll probably stumble and make a mistake or two along the way. But that’s OK with me because we are trying to find new ways of being the church and making its teachings relevant in a whole new social context, one unlike the human race has ever known. A bit of humility and a lot of forgiveness seem necessary prerequisites as we journey to find a new way. But we must make the journey and it’s already begun.

From Instant Gratification to Deferred Gratification?

Can the U.S. move from a culture of instant gratification to deferred gratification? The question was inspired by a program on NPR this morning. From the car radio I went into a meeting where the same thing was being talked about.

There’s a lot of conversation and writing that says we’re re-considering our personal finances today. We’re saving more and we’re starting to live within our means. Some are asking, “How much is enough? What’s the difference between needs and necessities?”

I heard The Rev. Beverly Wilkes-Null in a meeting today speak about this and found her ideas thought-provoking. I asked her to do a brief Flip cam video interview and she graciously accepted. The video can be found here.

I’m interested in what readers of this blog think. Can we make the move from instant gratification to living with “just enough?”

Flip Video of Rethink Church Launch

I just posted my first Flip video. It’s the Rethink Church launch event at a Home Depot parking lot in Washington, D.C. last week.

I shot the video with a Flip HD videocam. Edited with iMovie, the basic Mac movie editor. Recorded the narration with a Blue Snowball USB microphone.

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