Rare Impressions

Rare Disease Day focuses attention on the major challenges that patients with rare diseases must cope with every day. One of those challenges, access to care, was also a topic of some discussion at the NORD (National Organization for Rare Disorders) Rare Summit – “A New Era of Patient-Focused Innovation.”

Before attending the summit, I’d never heard of neurofibromatosis, even though it’s the most common genetic disorder caused by a single gene, and affects three times as many people as muscular dystrophy and cystic fibrosis combined. Nor was I familiar with multiple system atrophy (MSA), until I met Neil Versel at the summit. A journalist and volunteer with the MSA Coalition, Neil’s father had passed away from the rare neurodegenerative disorder.

Over the course of the two-day summit, I took in many more ‘rare’ impressions that reflected the passion of the patients, caregivers and healthcare providers in attendance. The patients, some who were panelists, were awesome in the way they freely shared their powerful stories and the challenges they face. Unfortunately, many of those challenges have been subjects of discussion and debate for 20 years and more.

Patients and their families, for example, still worry about having access to the therapies they need. They described the isolation they and their families have experienced. They also conveyed the frustration and fear that is part of the diagnostic odyssey many must travel before being correctly diagnosed.

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“The Answer, My Friend, Is Blowin’ in the Wind”

Bob Dylan played to a packed house last night at the Hard Rock Casino in Atlantic City.  I’m not sure what I was expecting.  The 77-year-old iconic artist’s voice hasn’t improved with time. It sounded like a muffled rasp.  But Bob Dylan has never been known for his voice. He has been known for his unvarnished commentary on the times.

As Barbara and I leaned forward in our seats trying to divine what song he was singing, it became clear it wasn’t Dylan’s muffled rasp of a voice.  It was the way he rearranged the music. The instrumentation for some of his greatest hits – “Blowin’ in the Wind,” “Like a Rolling Stone” and others – had been dramatically altered so that they were barely recognizable.

When an artist’s voice yields to the ravages of time, it’s understandable that some rearranging is necessary. But Dylan, it seemed, had rearranged his songs not in a way that accommodated the limitations time had placed on his voice, but as if to give them a fresh sound, or maybe to suit his own muse?

Rolling Stone magazine reported that his new rendition of “Like a Rolling Stone” was described by one fan as “a lovely new arrangement with slow passages where [bassist Tony Garnier] bowed the double bass.”  Kudos to Tony, and I don’t mean that in the least way facetious. He and the other members of Dylan’s band are all talented and accomplished musicians.

Besides, Dylan, in fairness, has always marched to the beat of his own drum. It’s one of the reasons his music has played a meaningful role in America’s changing social landscape.

On the other hand, we went to the concert hoping to hear new music of Dylan’s and expecting to hear some of his old songs, performed in a way that was recognizable to us. But as The Guardian reported about Dylan’s 2018 tour, “You don’t get what you want; you get what he needs.”

I’d be fine with that, if I was Dylan’s therapist and he was paying me $200 to sit on my couch for 45 minutes. But I paid $200 bucks along with several thousand other people to sit in his audience and listen to him “get what he needs.” Iconic artist or not, I have a problem paying for someone’s narcissism.

Maybe I need to leave the sixties and seventies in my rear view mirror. Maybe life has a way of coming full circle.  And maybe the answer has always been blowing in the wind.

Open Letter to Rep. Brian Fitzpatrick

Note: My following open letter to Rep. Brian Fitpatrick, who represents Pennsylvania’s Eighth Congressional District, appeared in this week’s edition of the Bucks County Herald.

Dear Congressman Fitzpatrick,

I appeal to you not as a Republican or Democrat, but as a fellow American and resident of Pennsylvania’s Eighth Congressional District. During your years with the FBI where you served with distinction, surely you strove to enforce the law equally and fairly without regard for political affiliation.

Such is the essence of justice, which was viewed in ancient Greece as the structure of civic bonds which were meant to benefit all – rich and poor, powerful and weak.  Those civic bonds, which underpin our democracy, have been eroding for decades.

For the past two years they have been under direct attack by of all people, the president of the United States.  Donald Trump strives daily to undermine our institutions including the FBI and our intelligence agencies, which have consistently assured him that Russia interfered in the 2016 election.

He attacks the press, which the Constitution holds as vital to democracy, seeking instead to impede the work of a free press by barring certain news organizations and news reporters from press briefings and by constant references to fake news. Ironic to say the least, given his advisor Kelly Ann Conway’s use of the term “alternative facts” as a euphemism for false statements.

So, I ask you Congressman, do any of the president’s behaviors and spiteful rhetoric concern you as an American? Do you believe the press is the enemy of the people? Do you think the president should take the word of a former KBG agent and president of our greatest adversary over those of our intelligence agencies?

Do you support treating longstanding allies with disdain and establishing ruinous tariffs that have already sparked a trade war? What is your position on the separation of children from their families at the border and remanding them to holding camps? And do you think public policy should be announced and even created on Twitter in the early morning hours?

We are fast approaching a crossroads where you and your colleagues in Congress will have to decide whether you are going to protect and defend the Constitution and the structure of our civic bonds, or a president whose erratic and spiteful behavior serves to hasten their erosion.

I respectfully ask you to respond to these questions, here in the Op-Ed pages of the Bucks County Herald, so that your constituents and fellow Americans can know where you stand.

Sincerely,

Christopher Florentz

Saying Goodbye and the Power of Faith

I have been fortunate to call Steve Kutner my friend since we met at the tender age of 14. When he passed away just over a week ago after a difficult struggle with leukemia, I, like many others who cared for him, felt relief amid the sadness.

Steve was among a dozen or so of us who have maintained our friendship over the years. I like to think of us as a unique group of men of a certain age, although we’re probably beyond what is considered “a certain age.”

We are unique not so much in that we forged a strong bond during our formative years at St. Pius X Preparatory Seminary in Long Island, New York, but in that we maintained it over the years despite the miles that separate us from New Hampshire to Texas. As one of our friends once put it, “We knew each other in our pre-adult personas.”

Despite attending seminary school, becoming a Catholic priest wasn’t in the cards for Steve or the rest of us in our immediate group of friends from St. Pius.

We went into fields from education, business and psychology to law and communications. We married and had families, some divorced and remarried. And most remained committed to the Catholic faith including Steve. It was a comfort to him until the end.

One of our high school teachers and mentors, Rev. John Martin, celebrated Steve’s funeral Mass. In his homily he said that during Steve’s illness, he was asked by a family member, “Why is Steve suffering so.”

Father Martin’s response to the question surprised me, and I wondered if it was the same answer he would have given all those years ago as a young priest teaching at St. Pius.

“With all my years of theological training,” Father Martin, who is now in his eighties said, “I could only respond, I don’t know.”  He went on to say that on one of his visits with Steve during his final days in Sloan Kettering, Steve told him, “I’ve always tried to do the right thing.”

Father Martin asked all of us present to look into our hearts and recommit ourselves to always trying to do the right thing.  “God is within each of us,” he said, and he reminded us of the words of Jesus, “‘Whatever you do to others you do to me.’”

As someone who stopped practicing Catholicism some 40 years ago, I sometimes struggle with the concept of faith. Father Martin’s reference to the God within each of us resonated with my beliefs that have evolved over a lifelong spiritual journey.

I believe the essence of love and faith is recognizing and honoring the God within each of us, whether we are a different color or ethnicity, speak a different language, have a disability or disorder, worship a different God or no God at all, love a member of the same sex or opposite sex.

There could be no more poignant example of the power of faith and love when, at the end of Steve’s funeral Mass, one of his daughters who has Down’s syndrome reached up her arms to hug Father Martin, and he bent down and gently kissed her.

On that sun-drenched Saturday morning in a church in Valley Stream, New York, I felt God’s presence among my friends of a certain age, among Steve’s family, and among all who loved him.

Farewell old friend.  I will miss you.

A Christmas Wish and the Journey Home

Some years ago, a man I worked with at the New York City Board of Education who I greatly respected told me that most people just want to live their lives peacefully and with dignity. Over the years I have found Jack Wengrow’s words ring true no matter the era or current fashion.

Today we live in turbulent times when living peacefully is not always easy or even possible. Times, when our most humanitarian inclinations notwithstanding, the dignity of the individual is often trampled. Perhaps that is the way it has always been.

At this magical time of year, despite all that has transpired in the world, in my life and in the lives of family and friends, I still feel a sense of hopefulness. The music and tidings of joy proclaim a prevailing spirit of goodness and kindness that will ultimately transform the world.

Jesus, like the Buddha, was a light unto the world who transcended the limitations of religion. He spoke to the side of us that longs for peace and righteousness to prevail so that no one has their dignity violated. Jesus taught a better way, as did the Buddha. To live with compassion and love for one another isn’t a Christian, Buddhist, Jewish, Hindu or Muslim ideal. It is a human ideal.

I hope one day we can embrace each other as pilgrims, and respect and honor the unique journey that each of us is on. We are all moving toward a distant star in our hearts, and there are many ways to reach it; there is no one true way. Despite all our differences, it may be that we are seeking the same thing after all, and when we discover it, we will have found our way home.

The French novelist Marcel Proust wrote, “We do not receive wisdom, we must discover it for ourselves, after a journey through the wilderness, which no one else can make for us, for our wisdom is our point of view from which we come at last to view the world.”  Wisdom, as the “Serenity Prayer” reminds us, is our point of view that enables us to recognize the difference between the things we are able to change and those we cannot.

My Christmas wish is that all the citizens of earth will one day live their lives in peace and with dignity. For family and friends, as we continue our respective journeys in 2018, may we have the courage to change the things in our lives and in our world that we are able to change, the serenity to accept the things we cannot, and the wisdom to know the difference.

Namaste and Merry Christmas!

Best first job in America, if you believe the McSpinners

You’ve probably seen the television commercial, the one where a young McDonald’s worker gets the news he’s qualified for tuition assistance, all to the applause and congratulations of his co-workers. At first, my naive side thought the commercial was heart-warming, after all, we Americans love a good old-fashioned success story.

But after a sentimental moment, during which I replayed one of my first jobs in high school – flipping burgers at a White Castle – it hit me.  The real message wasn’t about a success story in the making or even about McDonald’s tuition assistance program. The real, albeit thinly veiled message cleverly repackaged by the McSpinners in the Oak Brook, Ill. home office, was that the minimum wage was never meant to be a living wage. It was intended as compensation for entry level workers. And, oh yes, the proposed $15 minimum wage is completely unreasonable.

That may well be. After all, the average net profit for businesses in the U.S. is 7.5%, while the average net profit for McDonald’s franchises is 6%. How could they possibly pay entry level workers $15 an hour?  On the other hand, McDonald’s corporate net profit margin was over 19% in three out of five years between 2012 and 2016, far outstripping the average net profit for major integrated gas and oil companies, which realized an average net profit of 5.1%.

What’s wrong with this picture? McDonald’s is raking in above average net profit, while its franchises, which are required to have $750,000 in liquid assets up front, realize a below average net profit. Maybe $15 is too high for McDonald’s franchises to pay entry level workers.  Never mind that McDonald’s CEO Steve Easterbrook received $15.4 million in compensation last year, a 94% increase over his compensation in 2015? As for the shareholders, shares of McDonald’s gained more than 1.6% this week, sending McDonald’s to a new all-time high.

But the entry level rationale for keeping the minimum wage below $15 breaks down in light of the fact that the average age of fast food workers in the U.S. is 29, and 26% of fast food workers have families.  No doubt these workers could put a higher minimum wage to good use, using the additional money to pay for housing, food, car insurance, their kids’ braces, etc. And they might even have a few extra shekels to put toward their health insurance, since only 13% of fast food workers receive health insurance benefits.

Adding insult to injury, McDonald’s McResource line for its employees recommended breaking their food into pieces so they eat less and still feel full. The same tip line suggested selling unwanted items on eBay or Craigslist to make extra income, and taking two vacations a year to lower the risk of heart attack. Of course, if you’re making $9 or $10 an hour the likelihood you can afford two vacations is slim to none. But try telling that to the “trickle down” folks, who think the more revenue businesses and the extremely affluent take in, the more that will trickle down to the rest of us.

By the way, have you ever watched water trickle down?

Close to Home

11:35 p.m. July 12

A press conference is scheduled for midnight in the Logan Square shopping center a quarter mile from our house. Surely, the news won’t be good. Police and FBI have been turning over the earth at a farm just two miles down the road since Monday, looking for the bodies of four young men, all seemingly unconnected, who recently went missing in this bucolic corner of Bucks County, Pa.

There could not be a more peaceful setting anywhere, rolling hills, long stretches of green pastures with grazing horses and the stone houses for which Pennsylvania is known. Yet, you sense something very bad has happened to four young people in this community where people routinely leave their doors unlocked and children’s voices echo in the summer night.

For the last three days on my way to work I drove past the news trucks camped out across from the farm on Route 202, creating a surreal overlay. Tonight, a vigil is also planned for the young men, as the investigation continues under flood lights. A person of interest whose family owns the farm in question was taken into custody, released and subsequently arrested.

One can only imagine what their families are going through.  Maybe, just maybe, there is hope.

12:15 a.m. July 13

Barb and I drove over to the press conference. A small crowd of 75 or so people including news media were present when the Bucks County DA broke the heartbreaking news. One body had been recovered in a 12 ½ foot grave at the farm and identified as 19-year-old Dean Finocchiaro. A second body yet to be identified was recovered, and two others remain missing.

A reporter asked if one man could dig that large of a hole. Another questioned how the two individuals whose remains had been found died. The news was all the more surreal, being delivered right in our own backyard. We teach our kids the world can be a dangerous place, and that they need to be mindful. It is a lesson that, sadly, needs to continually be reinforced. Even in the bucolic rolling hills of Bucks County, where tragedy has struck close to home.

 

Did Donald Trump Wake a Sleeping Giant?

Yesterday was one of those days when I felt especially proud to be an American. As we walked west from Philadelphia City Hall topped by the statue of William Penn, a massive crowd was building around Logan Square for the Women’s March. Nearing the area, we were met by a sea of posters with messages that spoke of the deep concern many Americans have been feeling since the election of Donald Trump.

Soon all of us, men, women and children of all ethnic and racial backgrounds, approximately 50,000 strong, were slowly making our way along the Ben Franklin Parkway toward Eakins Oval and the Art Museum. It was a powerful experience, strangers packed shoulder to shoulder, all with the common goal of proclaiming to the world in a peaceful way – Women’s rights are human rights.

It was a cathartic experience, being with so many like-minded Americans and sharing my own misgivings about the next four years, though my concerns were not as great as some. Yesterday’s protest marches brought millions of strangers together, far eclipsing the crowds in attendance at Trump’s inauguration on Friday.

Even “alternative facts,” a new euphemism coined this morning by one of Donald Trump’s mouthpieces, can’t change the numbers or mask the divide that is growing day by day between Americans and their president. And he’s only been in office two days.

An acquaintance asked me, “Can you articulate what rights the group thinks are in jeopardy?” The short answer has to do with a woman’s right to choose, especially women from low-income backgrounds who rely on Planned Parenthood for a range of essential health services. But there is an over-arching question – why are so many Americans filled with anxiety over The Donald’s presidency?

For some, I think it’s as much about the climate Donald Trump is fostering in America as it is about specific policy concerns. After all, what kind of society elects a president who brags about the part of a woman’s anatomy he likes to grab, who refers to some women as a fat pig, and who remarked that if Ivanka wasn’t his daughter, he’d date her. And who can forget his disgusting mockery on television of a reporter with a disability?

It is painfully obvious that Trump does not share former President George H. W. Bush’s vision of a “kinder, gentler nation,” although he hasn’t yet explained his vision for America, other than to say he’s going to “make America great again.” The experience I shared yesterday with 50,000 fellow citizens made it clear to me that America never stopped being great, and that we do indeed have a kinder, gentler side to us as a people because many of us care about each other.

One march does not a movement make, and time will tell whether Trump woke a sleeping giant. I suspect that he has. I didn’t get the impression from the men and women I marched with yesterday that they’re going to go away any time soon. I know I’m not. Quite the contrary. One test will come in less than two years when mid-term elections are held. If yesterday’s marches truly herald a movement, there may even be some Republicans in the Senate and House looking for work.

The Ugly American

For the first time in my life I’ve witnessed fellow Americans threatening what might happen if their candidate loses the election for president. Seditious words, to be sure. And just yesterday a colleague told me she’d shifted her investments because of the uncertainty swirling around the presidential race. These are scary times, indeed.

The late 1950s when The Ugly American was published was also a time of fear and uncertainty with the Cold War at or near its height.  The term “ugly American,” incorrectly based on the novel, came to describe brash Americans who were full of themselves and disdainful of other cultures.  Now we are faced with an election that has polarized us. I find it discouraging that we, the people, have allowed brash, arrogant and smug politicians who are full of themselves to divide us.

In general I lump politicians in several groups. Unfortunately, the group that is smallest in number is made up of those politicians who are truly altruistic and whose sole agenda is to make the world a better place for everyone. Neither of the two presidential candidates, in my view, are in this category.

A much larger group is comprised of those whose main agenda is to get and stay elected and reap the benefits of their position. Politicians in this group sit on both sides of the aisle. Still another group is made up of politicians who are ideologues who fit Carl Sagan’s description of believers whose beliefs are not based on evidence, but on the need to believe. (In some ways, they may be the most dangerous.) The fourth and I suspect largest group is made up of candidates and elected officials whose defining characteristics are a combination of the first three.

Regardless who is our next president, the Republic will survive, a bit worse for the wear, perhaps, but we will survive. After all, we overcame one of the mightiest powers on earth in the 18^th century. We survived a bloody civil war in which brother literally fought against brother. We prevailed over slavery, world wars, the Great Depression, the Cold War, and now the ongoing threat of terrorism. Through it all we remain intact.

On Tuesday, we have the opportunity to tell the world we identify with the candidate who is more like the character in The Ugly American, Homer Atkins. Homer is an engineer who moves to Southeast Asia, rolls up his sleeves and gets to work helping the people of an impoverished country overcome their circumstances. He is a man described in the novel as one whose “calloused and grease-blackened hands always reminded him that he was an ugly man.” While I doubt Hillary’s hands have ever been calloused, at times she has demonstrated a willingness to roll up her sleeves and work on behalf of the less fortunate.

Or do we identify with the loud, brash and bellicose candidate who has disdain for so many people, whether with disabilities or immigrant backgrounds, or women who do not meet his sophomoric and superficial standards. A man who has the unmitigated gall to proclaim he knows more about terrorists than our generals, and who incites white supremacists and others to commit or threaten acts of violence, all the while encouraging our Russian adversaries to hack our computers.

I wish I could say I genuinely like Hillary Clinton, but I don’t. At times she comes off as arrogant and smug, and I would have preferred to cast my vote for Joe Biden or Elizabeth Warren. But I don’t have to like a person to vote for them. I just have to believe he or she is the best qualified to do the job, no matter which party they represent. I believe Hillary Clinton is far and away the most qualified candidate to be the next president of the United States.

The beauty of our system is that whoever is elected will have four years to demonstrate whether he or she has the right stuff for another four. Whatever the outcome of this election, the Republic will survive because it’s not about Donald Trump or Hillary Clinton. It’s about we, the people. And while we don’t have to agree with each other or even like each other all the time, we need to live together – one nation, indivisible, with liberty and justice for all.

Colin Kaepernick, Civil Rights Activist?

Last Sunday as I walked across the pedestrian bridge that spans the Delaware between Lumberville, Pa. and Bull Island, N.J., the American flag billowed in the wind in all its glory. It was the fifteenth anniversary of 9/11, a somber day when we should all feel solidarity as Americans.

For some reason I thought about Colin Kaepernick, the NFL quarterback who has refused to stand during the playing of the national anthem before a game. That he is making a statement about the disproportionate number of black Americans who are injured and killed by police by refusing to stand for the national anthem is noble in a naïve sort of way. But as many others have suggested, there are other ways he could express his outrage at police brutality.

What turns me off the most is when he chooses to do so in the presence of members of our military who lay their lives on the line for all of us. Many of them are missing arms and legs lost on the battlefield, and yet they must stand silently by while Colin disses a symbol of the nation they served so valiantly.

I can’t help wonder if Colin is a committed activist for social justice, or a backup quarterback seeking to regain relevance after being demoted from the starting role? If that sounds harsh, other than taking a knee during the national anthem, what is Colin doing to further the civil rights of black Americans?

Since I don’t personally know him, maybe he attends vigils and demonstrations when the civil rights of black people are violated. Maybe he spends time in inner city schools and with community leaders and law enforcement engaging in meaningful dialogue about social justice and what needs to be done to heal divided communities. If that’s the case, then I take back the question whether he’s a true champion of social justice.

Even so, what Colin doesn’t seem to understand is that he isn’t dissing the national anthem or the American flag. He’s dissing what it stands for. He’s dissing the sacrifice millions of Americans – black, white, Hispanic, Asian, native American – have made over the last 250 years. Their sacrifices made it possible for him to get a free education and make millions playing football.

If for no other reason, it behooves Colin and his NFL colleagues who lock arms before football games as a sign of solidarity for social justice to step up their game, if they haven’t already, and lock arms at vigils and demonstrations to protest the injustices being done to black Americans.  It behooves them to engage in any of the many programs and initiatives throughout the U.S. that are having a meaningful impact on the unjust treatment of black Americans by police.

If they can’t make that commitment, then they should just play football and leave the cause of social justice to those who are truly committed and who are on the front lines working to make a difference.