Tuesday, September 2, 2014

YOU are the Agent of Change

It was the end of the day and we were approaching the line for the tram at Disney after the fireworks.   It was many people deep and even with Disney’s infamous efficiency, we were going to be there a little while.  Our parking lot was not that far away and Noah and I were inclined to walk it instead.  The rest of our crew preferred waiting.  I hate lines. 
At the other end of the spectrum - when I was out in LA for Pancreatic Cancer Action Network leadership training a couple of weeks ago, I was surrounded by folks that don’t want to wait.  If it ain’t happening, these are the kinds of folks that will make it happen.  It was awesome!
The Pancreatic Cancer Action Network is representative of concerned people-power pushing against the way things are to bring about the reality that they long to see.  Pan Can’s goal is to raise awareness of and maximize funding for research to double the 5-year survival rate (from its’ current measly 6%) by 2020. 
The Pancreatic Cancer Action Network represents one of three legs that support the stool upon which most change happens in this country.  Besides charities and non-governmental organizations, I see the government and faith communities as the other most significant agents of change in our society.
The direct actions of dedicated people working through NGOs and charity organizations to achieve change are similar to the responsibility placed on each of us in this democracy.  Sadly, this is a trait that we have readily relinquished in America.  We set up a system that provided a mechanism (albeit imperfect) for groups of individuals to be the change that they long for.   Very sadly, we have lazily and irresponsibly relinquished that vast potential for good by vilifying the very means to accomplish all things for ourselves – mainly owning (our role as) the government.  We have accepted the ruse of railing against the government.  We have been bamboozled into forgetting that we have been given a government of, by, and for the people.  We are conveniently forgetting that we are the government - the ones responsible for the way things are and the way things could be.
I see direct parallels between the challenges of tackling this most difficult and deadly cancer and the undermining of our American democracy.  In each case, a beautiful and lofty idea is stymied by a current of other competing intentions.
Coming under a few basic themes, here’s how I see the competing intentions of the pancreatic cancer fight and our democracy challenge:
  1. 1.     The complexity of the cancer itself (the location of the organ, the pathology of the disease, etc.), and the inherently complex problems we face as a nation - , seemingly resistant to the very best that we are able to throw at them. 
  2. 2.     Our personal and democratic health are market based.  The relatively low (but rising) incidence rate (~40,000 Americans/year) discourages for-profit Pharma from making a targeted effort to solve this most challenging cancer problem.  Similarly, the concerns of the average American are being ignored because the money spent under the guise of corporate free speech calls the shots. 
  3. 3.     Finally, the politics in this country put ideology ahead of the very real (sometimes deadly) realities of people’s lives.  Even cancer doesn’t make the cut for funding these days.  In the same way, our politics prioritize maintaining current power bases rather than addressing the very real suffering that many Americans face every day.

The passion I saw at the PanCan leadership training taught me that every competing interest can be overcome by people-power.  No problem is too complex.  Free markets need not be the only solution to our problems.  Ideology need not trump reality.  Everything is possible and we are just the folks to do it.
Although maybe a subset of the charity and NGO category, faith communities function in a similar way – by rallying people behind an idea or set of beliefs.  I set them apart because it is a particularly unique and beautiful thing when faith is seen as a verb, an action, not passive.  People of faith are responsible for many of the non-governmental hospitals, schools, social service and disaster relief agencies in our world.   On a large scale, it is groups of individuals that band together to address society’s ills and bring just relief to the neediest among us.  Catholic churches and organizations have been doing it for a long time.  Protestant denominations, Jewish synagogue groups and   Muslim organizations all do amazing good in our society.
The hunger for better exists but charities and faith-based organizations don’t appeal to everyone. In that sense, the tendency to vilify the government and so distance ourselves from the widespread and necessary good that we are called to do is so disturbing to me.  It takes out of play one of the three biggest agents of change in our society.  For some our shared nation-hood is the tie that binds.  I hate to lose even one outlet in the struggle to change this world.
Lord knows that there are many issues in this broken world for us to make progress on.  There’s no need to make excuses for the line.  Don’t wait on it either.  If you don’t see what you want, find like-minded someones and start walking.

Wednesday, June 25, 2014

Advocacy (Every )Day 2014

I am not a research oncologist. Boy do I wish I was right about now. I have enormous respect for these folks. They volunteer to attempt to solve some of the most difficult challenges of our time, plugging onward even though the chances of success are small. Those trying to crack one of the very toughest nuts, namely pancreatic cancer, are a breed apart. Whereas other research oncologists are mustering all of their energies to push a very large rock just a few inches, I see those researching pancreatic cancer trying to push that same rock up a hill one inch at a time. To be honest, I don’t know that I have the fortitude to step into that void myself, even if I had the right education and credentials. For this reason I applaud each and every one of the doctors that do.
Instead I wonder about what CAN I do? Thank God - we live in an absolutely amazing and maddening country.
I just returned from my fourth Pancreatic cancer Advocacy Day in Washington D. C It is an annual event where folks from across the nation come to D.C. to urge Congress to take action in the fight against pancreatic cancer. The push during my first couple of years of attending was to get a bill passed that would put a plan in place and increase the research dollars that the National cancer Institute (a branch of the National Institute of Health) devotes to pancreatic cancer. “When the Recalcitrant Cancer Research Act was signed into law in January 2013, it was the culmination of five years of effort by the Pancreatic Cancer Action Network’s passionate advocates and volunteers—who sent 76,000 emails, made 14,000 calls to Congress and participated in 1,500 meetings.” Then came sequestration and the promised funds have never materialized. The fight in the years since has been to restore the planned funds.
The problem is that there is no early detection for pancreatic cancer – ala a mammogram or colonoscopy for breast and colon cancers. For most people diagnosed, like my Papa, diagnosis is a death sentence because it is already too late to do much about it. Which brings up the second problem – few treatment options (besides the Whipple surgery that I was able to have) that can save the life of a pancreatic cancer patient. The 5-year survival rate is an anemic 6% and has barely budged in the past 40 years. Survival rates for most cancers are, thankfully, increasing but while the incidence rate for pancreatic cancer is increasing survival rates are not appreciably. For this reason, pancreatic cancer is projected to be the second leading cancer killer of Americans by 2020. Given the potential genetic link in my family, this is an untenable situation for me and my babies.
This year, approximately 480 citizens from all 50 states and several U.S. territories came to ask Congress to make more funds available. This is an astounding show of force and the sea of purple walking the halls of Congress is a sight to behold. For me, seeing survivors from across the country year after year inspires hope. But hearing the stories of loved ones lives cut suddenly short by the tragedy of this disease is heart-wrenching. D.C. in all of its grandeur makes me proud to be an American and the opportunity to meet with my Senators and Representatives is a testament to the democratic ideals that our Founding Fathers intended for us. It is awesome. Democracy is not (only) about availing oneself of the right to vote every year or four. It is about bringing about the change in this nation that you desire by expressing yourself on the other 364 days of the year to the leaders we’ve elected to represent us.
There are two main arguments that our representatives offer against additional funding for research into the deadliest cancers. They are (1) that we can’t afford it, and (2) our government is already too large and should not be involved in this activity.
In my mind, both of these are purely ideological. The first argument denies the fact that Congress is making spending decisions like this every day. It is, after all, exactly what our elected leaders are paid to do. Besides, the “ask” for cancer research is negligible compared to so much else. If I understand the argument, we can afford tax cuts for corporations and those who are already wealthy in this country but not to help save lives and avoid suffering for all Americans. It is simply a matter of our priorities. The second argument denies the ample evidence that when government funds basic research, cancer survival rates increase (see breast cancer as a glorious example). We the people empower the government to the things that otherwise could not be achieved – like national defense, education, infrastructure, etc. Both lines of refusal are based on flawed logic if not outright lies. Meanwhile, people are dying. Please do not buy this bill of goods. Not for this cause that is of primary importance to me. Nor for your own cause. Advocate for yourself and those you love. Responsible citizenship means writing, calling and visiting our elected leaders. That is the beauty of this wonderful and maddening nation of ours. Embrace it!

Sunday, March 16, 2014

My Oman Odyssey

I am incredibly blessed. As if to put an exclamation point on that fact, I started the year with a two-week travel seminar to Oman (on the Arabian Peninsula). As a student at New Brunswick Theological Seminary, I went to attend lectures and meetings with Ibadi imams and scholars, engage in interfaith dialogue, meet missionaries of the American Protestant Mission in Oman, and explore the interfaith context of Oman.
My first discovery was the amazing culture, sights, people and geography of the otherwise unknown Sultanate of Oman. It is a gorgeous land! We visited the country’s historical sights – the many forts throughout the land, mosques ranging from the Sultan’s Grand Mosque in Muscat to some of the oldest mosques in Islam, and natural wonders like (the Grand Canyon equivalent at) Jebel Shams and the majestic dunes at Wahiba Sands. We stayed in the thick of Muscat (the capital), only a stone’s throw from the dazzling Mutrah Souk (bazaar). I enjoyed sunrise runs along the Corniche that runs along the shoreline of the port. We were repeatedly treated to unmatched hospitality in government offices, religious centers and homes – Omani style.
The second aspect of learning was the class presentations, discussions and exercises. Our hosts at the Al Amana center led some sessions and offered us Imams from the Ministry of Religious Affairs, Omani and U.S. government officials, and leaders of local religious communities. Several sessions of Scriptural Reasoning - where we considered particular biblical or Qur’an texts and engaged in interfaith dialogue – were increasingly stimulating and revealing.
As astounding and inspiring as the first two learning vehicles were, the third may have been the most impactful. Besides the three of us participating from NBTS, we were blessed to be accompanied on this odyssey by five exceptional Muslim students from Hartford Seminary. We had many hours together, especially in cars travelling between sights, to talk theology and ask all that we wondered about each other’s faith traditions. (My constant peppering of questions became a source of good-natured ribbing.) Witnessing their worship practices and experiencing their intentional submission to Allah day in and day out was a welcome, thought-provoking challenge to my own beliefs and spiritual discipline. Despite many months spent (cumulatively) in Muslim countries in my life, I learned more about Islam in these two weeks than in all of my years thus far.
The challenge of interfaith tolerance, dialogue and, beyond that, understanding was a focal point of the trip throughout. It is a testament to the efforts made by Sultan Qaboos and the Ministry of Religious Affairs that such religious acceptance can exist in a conservative and overwhelmingly Muslim society. The Ibadi School of Islam is unique, faithful and tolerant – with none of the extremism we sometimes see in the other, larger schools of Islam. “People of the Book” (especially) are esteemed as believers, even if they do not recognize Mohammed as a prophet. The Omani people seem to have grasped that people longing to worship God need an outlet and that offering them such opportunities is the best way to avoid extremism and societal strife. I have come to see religious exclusivity (i.e., my way is the only way) as the greatest challenge to the achievement of the ideals of religious understanding. It’s a tough nut to crack.
Our visits, presentations and discussions brought me face-to-face with a number of my long-held beliefs. Contrasting the two religions made me consider the difference between being a servant rather than a slave of God. What does submission to God really mean? I became much more acutely aware of the differences in one’s (personal?) relationship to God and the attributes of that God that get most stressed in a particular tradition. Just as there are a variety of different focus points amongst Protestant denominations in the U.S., I also enjoyed considering aspects of faith that I may downplay in my own spiritual life – like standing before God on the Day of Judgment, for instance. I also appreciated the different emphases that I encountered – like the consistent acquiescence to God’s will captured in the phrase “Insha’Allah” (God willing).
One of the most impactful visits we made was to Eloise Bosch, the surviving wife of a missionary couple that spent over 50 years of their lives providing medical care and education to the people of Oman. In thanks, the Sultan built a stunning residence on the coast for them to live out their days. Such gratitude is a testament to all that the Boschs did for the people of Oman. In a moment alone with her, I commented on the courage it must have taken to come to an unknown and undeveloped land like Oman in 1955. This humble servant responded almost matter-of-factly that there is little else one could do when called by God. It was a beautiful thing to witness.