Politics

When Compassion Meets Anger

This past week we witnessed anger vented at our government like we have never seen from Americans in our lifetime. I wondered how to address it in a blog meant for bleeding disorder topics. I couldn’t ignore that it happened. I tried to focus on something positive this week. I found myself thinking about compassionate heroes: those who put themselves in harm’s way to get footage of the riots; who tried to help people who were injured; who used kinder language to soothe anger and hate.

As I was thinking of this, I recalled our own situation in 1992, when I attended my first national hemophilia meeting in Atlanta. My book Raising a Child with Hemophilia was being promoted, and I was so focused on that, and raising my 5-year-old with hemophilia and 2-year-old daughter, that I was shocked when during an interview a newscaster asked me what I thought about what was happening at the NHF meeting down the road. What was happening? I didn’t know what she was talking about. I was oblivious.

I soon found out. Stepping into the exhibit hall, where pharmaceutical companies promoted their booths, I saw protesters yelling, waving their arms, scaring people. One had red paint smeared on him and wore a death mask. They then marched together throughout the hall, banging a drum, calling out companies. It was grim. Some pharmaceutical reps fled the scene. In fact, most did. The booths were being emptied quickly.

At one booth, a lone rep stood his ground. I was standing next to him when Michael Davon, a person with hemophilia and HIV from Boston, walked up to him and began yelling. Michael was quite taller than the rep and intimidating. He threw packages of needles in the man’s face and yelled, “And your needles are the wrong size!”

I wondered what could possible happen next.

Joe Pulgliese, general manager of Armour Pharmaceuticals, the man who had the needles thrown in his face, responded calmly, “I think there are bigger issues here to talk about instead of needle size. Tell me what the problem is.”

The rage, absolute rage about being infected with HIV from contaminated blood products; pharma’s role in this; cover-ups; not being believed and not being heard; the deaths of friends and colleagues.

Laurie Kelley and Joe Pugliese 2000

By simply exposing himself to the anger, absorbing it, taking a stand and offering a listening ear, Joe calmed Michael down. They sat. I watched from the sidelines in amazement as Michael quieted but continued his list of accusations. When everyone else fled, Joe had stayed, unafraid.

I saw the power of compassion, even in the face of potential violence, and the power of listening. Angry people want to be heard. But often our first reaction is to retreat, or defend ourselves. Or even fight back. No one ends up listening. Angry people have a right to be heard. Violence is not acceptable, but not being heard and not feeling compassion can lead to heightened emotions, and even violence.

Today is Joe’s birthday, and I’m proud to say he has been a friend since 1989. He was my first contact in the hemophilia community, and he has been a friend to the community for decades. He secured funding for so many nonprofits for family programs and camps. He approved my book in 1990, when I was a complete unknown. And he works today still, overseeing the Hemophilia Alliance, which helps HTCs with funding, to keep them viable, to serve us.

Laurie and Joe a few years ago

There will always be angry people, there will always be protesters, and there will always be wrongs that need to be righted. But there aren’t many people who stand in the face of it all, look it in the eye, and say “Tell me what’s wrong.”

Happy birthday, Joe! We have been and still are blessed to have you in this community.

A Bittersweet Celebration


I had the great privilege to attend a private event that was to have been a fundraiser for friend and US Senate candidate Bob Massie, of Journey fame. For you hemophilia young-ones reading this, Journey was I think the very first book on hemophilia ever written. Certainly the first written by parents of a child with hemophilia. The book details life for one family in the 1950s and 60s, who later became famous as parents Robert and Suzanne authored and published the classic Nicholas and Alexandria.

But back to the event. The entertainment for the evening was the humble, humorous and infinitely talented Noel Paul Stookey of the incredible group Peter, Paul and Mary, perhaps best known for their song “Puff the Magic Dragon.” I arrived early to the stunning home of Mark and Becky Levin in Boston–the traffic was light and the weather warm. What a great night to hang out in Boston!

Noel was so gracious and unpretentious. He and Bob have been friends for 30 years, since Bob was young. The group became friends of the Massies, and I recall from the book Journey, how Noel would sing to Bob when Bob was trying to survive terrible bleeding episodes. And here they were together again!

We were all very sad to hear that night that Bob would the very next day announce his withdrawal from the US Senate race. He gave it a good fight, and spent countless hours traveling the state, meeting everyday people, and rallying people to hear his thoughts about our country and his plans to represent Massachusetts. As someone who suffered, truly suffered, with hemophilia, then HIV and hepatitis, he really could speak out on issues of chronic healthcare. Bob is incredibly intelligent, down-to-earth, educated and passionate. He has already had an amazingly accomplished life, but still wishes to do more in public service. What a hero he is to us all!


He read his withdrawal speech, which included: “I know how hard people are struggling today. In a hundred speeches I have defended the right of every citizen to a good home, a good school, a good doctor, and a good job. I have also said that despite the difficulties we are facing today, we must not forget our opportunities and responsibilities for tomorrow.” And towards the end, “We all have a role to play in this. This is an extraordinary state filled with extraordinary people and we are capable of extraordinary achievements. I plan to play my part moving forward.”

We sincerely hope this means he will return to public life, for if anyone could represent the needs of those with hemophilia and chronic disorders, it’s Bob Massie.

After his speech, Bob and Noel played a song together; Noel on guitar and Bob on banjo. Guests offered their tributes to Bob and congratulated him on his efforts and praised him for his dedication. All in all, a wonderful evening, filled with gratitude to Bob, pride in our state.

To read Bob Massie’s Speech, please visit www.BobMassie.org

Great Book I Just Read
A Hole in Our Gospel
Richard Stearns

Stearns, the president of World Vision, offers an inspiring call to action to help the world’s poor. He attempts to answer the question, “What does God expect of us?” He does not let fellow Christians off the hook just because they go to church, know the Bible, attend Bible study classes and help their neighbors. He wants them to take part in a social revolution to save the world, specifically, to help those in need in Africa. Stearns shares his startling story about life as a high-rolling, wealthy CEO of Lenox, the provider of luxury china products. When tapped to be the next CEO of World Vision, Sterns had to make a difficult choice: uproot his five children and wife to Seattle, and take an enormous cut in pay and lose all his corporate perks and benefits. After much soul searching, he accepted. He shares what he has experienced in his job, along with his theology of Christianity in action.

It’s a compelling read, and certainly makes you look at your own life, your possession (how much do we truly need in this life anyway? What would we really miss if we gave more to help the poor?) and your beliefs about the poor. It’s not flawless, and some of the reading gets quite heavy-handed. A book review on The Gospel Coalition website says, “The Hole in Our Gospel is also theologically flawed and economically misguided… but its overall charge to care for the poor and put our faith into action is a good and necessary challenge.”

And despite taking a pay cut, Stearns still takes home a healthy $400,000 annual salary; World Vision is also not without criticisms of how the $800 million organization is run in the field. Still, you can’t doubt the author’s sincerity and depth of his calling. I don’t agree with his hero-worship of Bono; and the pages and pages and pages of glowing testimonials in the beginning actually cause the antithesis of purpose—I was very suspicious of any book that must call so much attention to itself. Why not allow the reader just to read and form their own opinion first without biasing them? But I read, and was profoundly moved as I had just returned from Africa, have seen what he has seen, and believe what he believes about social justice and about how we can each do more to help those in poverty. There’s a lot of theological interpretation you can argue, as he quotes and interprets the Bible throughout, but his social message is loud and clear, and he is a man who is walking the talk. He visits the poor; he strives to solve their problems; he does it with love; he makes results. Kudos to him! Three stars.

Putting One of Our Own in the Senate


There was a welcome article when I picked up the Boston Globe this morning: “REMEMBER BOB Massie? The 1994 candidate for lieutenant governor doesn’t think so, and he’d like to reintroduce himself. “I’ve been away a long time,’’ he said in an interview.”

Of course we remember him. Son of Pulitzer Prize winning author Robert K. Massie, and author Suzanne Massie, who served as one of Ronald Regan’s advisors on Russia. They are most famous for the book Nicolas and Alexandra, the last Tsar and Tsaress of Russia who had a son with hemophilia. High powered parents, and an extraordinary childhood, all chronicled in the parents’ deeply stirring book Journey, arguably the first book ever on hemophilia. Many of us know Bob, and many of us just saw him at NHF in New Orleans. Yes, he has been away, with good reason. He no longer has hemophilia, thanks to a liver transplant in July 2009.

Bob has been through a lot. I saw him last January, when he donated all of his remaining factor to Project SHARE; with a new liver, he no longer has hemophilia and doesn’t need factor anymore. I visited him in his Cambridge home and got to meet one of his sons. I noticed all the photos of Bob with politicians: Bill and HIllary, Al Gore, and Ted Kennedy. His family has close political ties with many of our country’s top figures. And when we saw him in New Orleans in November, his transformation was remarkable. He looks fabulous, and obviously feels great. He is now a contender to unseat Republican Scott Brown in the Massachusetts Senatorial race in 2012.

Bob’s the first Democrat to publicly declare his candidacy. The Globe article notes: “Massie is certainly an unusual candidate. An ordained Episcopal priest with a PhD from Harvard Business School, he
is an award-winning author and social entrepreneur who also happens to be one of the longest-surviving HIV
patients on the planet.

“Is he a strong candidate? His ability to raise money and build an organization will tell…. he also knows he needs to get an early start on 2012, and is performing the necessary obeisance to political figures around the state. He formed a campaign committee, is establishing a depository account, and will have a website up shortly.”

For us, the hemophilia community, Bob could be a true godsend for health care reform. The Globe reports, “He believes
the American medical system (at least until the recent reforms) is a disgrace: tending to deny care to those who
need it most. ‘In addition to the burden of illness, people are being punished — there’s no other word for it — with
bankruptcy, misery, poverty,’ he said. ‘In my view that’s un-American.’

“…Massie has also deeply studied the health care system, its economics and history, from the inside out. At age 12 his family spent a year in France, where all his hemophilia drugs and treatments were covered ‘as a fundamental right of citizenship.’ Health care policy is not theoretical with him. Besides, Massie is no anti-business scold. He has worked with many of the world’s largest companies, including Sunoco and Ford, to develop the first standardized measures of corporate social responsibility.”

It will be interesting to see if Massachusetts, which stunned the nation when Scott Brown was elected, is ready to re-evaluate. Long considered a liberal state, and fertile ground for Democrat hopefuls, Brown overturned all the tables. Bob could represent a return to the roots of liberalism in Massachusetts. His candidacy can perhaps be a litmus test to see how Massachusetts is transforming. Was Brown a blip? We will wait and see. The idea of having someone who has suffered from hemophilia and hepatitis most of his life at Capital Hill could only be great for the hemophilia community, and perhaps for all who suffer from chronic disorders.

From “The timely return of Bob Massie”
By Renee Loth
January 16, 2011
Renee Loth’s column appears regularly in the Globe.
© Copyright 2011 Globe Newspaper Company.

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