Bob Massie

Memorial Day with a Memoir

Laurie Kelley May 28, 2012

I often think of Memorial Day as a time not only to think of those who died serving our country, but of those veterans from the hemophilia community, who died from HIV, or who are still fighting the good fight, so that our sons could live. Their infections and/or deaths expedited the call to identify the virus that stalked the blood supply, and to find treatment fast.

Bob Massie is one of those. And he’s written about his experiences in a new autobiography called A Song in the Night: A Memoir of Resilience (Doubleday, 287 pages, $24). I urge you to buy it and read it. It’s the newest book in the hemophilia marketplace, and it is a gem.

You may know of Bob from one of several places; he’s a rolling stone, despite his health issues. Episcopal priest, author, researcher, politician, human-rights activist, father of three, nonprofit leader. You may recognize him as one of the people profiled in 2010’s documentary Bad Blood. You also may have met him first like I did, through his parents’ book Journey, from 1973. Journey was truly the first book about hemophilia, told in alternating chapters from the parents, Pulitzer-Prize winner Robert K. Massie and then-wife Suzanne Massie. This stunning book put hemophilia on the map, and revealed painstakingly what it was like in the 1960s and 70s to raise a child with this rare genetic blood disorder.

Bob now shares his own perspective on his life and also continues where Journey left off. Without a shred of self-pity, he shares the searing pain that left him crippled as a child; the loneliness of being left behind and unable to participate in school or playground activities like the other boys. Not surprisingly, but admirably, he turned his suffering into something greater, something that would eventually benefit many. Bob became a crusader against social injustice in its many forms (his influences reached South Africa at one time) and despite his physical limitations, he achieved more than an average person would, without any limitations. His list of accomplishments is stunning, leaving the reader feeling a bit inadequate: if a person who spent years ill in bed could do all this, what’s our excuse?

Bob has excelled in many areas and following a successful lived transplant two years ago, is going stronger than ever as president of a nonprofit, following a year of campaigning for US Senate. Despite spending years in a drug-induced wait for a new liver, watching life pass him by, he is back, strong and focused, and continuing still to make a difference. A Song in the Night is less a memoir of what life did to him, but rather how he has made a life despite so many hardships and setbacks. Bob references his faith often, which has been unshakable and contributed to his desire to overcome his illnesses and in turn, help others.

Like our war veterans, Bob Massie has served on the front lines, earned his battle scars, works to make the world safer and better, and above all, is inspiring. He inspires us, I think, to see the challenges we face, however hard, as perhaps a calling from Above, a way to persevere and then to serve our fellow humans, with love. In one passage of the book, Bob describes his ordination as a deacon. The bishop looked him straight in the eye and told him his responsibility, his mission, was “to serve all people, particularly the
poor, the weak, the sick, and the lonely.” Bob has accomplished all this, and more.

This is a well-written book, full of history, personal narrative and profound inspiration. We should be proud of Bob Massie in our hemophilia community; he has overcome, with his unconquerable soul.

A Bittersweet Celebration

Laurie Kelley October 10, 2011


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

Laurie Kelley January 16, 2011


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.

Bobby Massie Cured

Laurie Kelley August 24, 2009

The Massie family is about as close as the US has ever come to having a royal hemophilia family. Robert Massie Sr is a Pulitzer Prize winning author, famous for his books Nicholas and Alexandra and Peter the Great. He began writing about Russian royalty while working as an editor for Newsweek, after the birth of his son Bobby, who was born in 1956 with hemophilia. Suzanne Massie is also an author, mostly on Russian culture and history, such as The Land of the Firebird (of which I own an autographed copy). They are both fabulous writers.

But it was their joint book Journey which sent shock waves to the world. For the first time, hemophilia was documented in all its detailed pathos. Both parents write in alternating chapters: he focusing on the scientific aspects mostly, she on the emotional aspects. It makes for a gut wrenching, blistering page-turner; a roller coaster of emotions at a time when there was no factor concentrate. The Massies were propelled to stardom following the release of Nicholas and Alexandra, which was later made into a movie. There were movie premiers, evenings with celebrities like Stephen Stills, Oscar de la Renta, and dinner at the White House.I was a huge fan of Robert K. Massie by age 25, even before my own child with hemophilia was born. Call it weird, fate or whatever, but there I was, in labor in the fall of 1987, reading Peter the Great while waiting for my child to be born. When my child was hospitalized later and the bleeding wouldn’t stop, I suddenly recalled my mother’s words from a few years ago, when she gave me the book as a Christmas gift: “The author writes about Russian history because his own son has hemophilia.” Little did I know Bobby Massie lived only two miles from my house at the time, Through our treatment center nurse, I was introduced to someone whose whole family I admired. Bobby and I met, and I found him very down to earth, intelligent, and above all stoic. He was suffering from not only hemophilia, but HIV and hep C. I later became friends with his mother, who worked with me to help kids with hemophilia in Russia, something she had been doing for some time. Suzanne became such an expert on all things Russian, that President Ronald Regan relied on her as an advisor for Russian policy, and she welcomed him to Russia, to the Pavlosk Palace, which she had helped to renovate. Remarkable family!

Bobby is also well known in Massachusetts for running for public office: he made history in 1994 by becoming the first person in the US to have HIV to run for Lieutenant Governor. He ran with Mark Roosevelt, a descendant of Teddy Roosevelt. And now I just read over the weekend that Bobby has been cured of hemophilia. How? A liver transplant on July 10. If you never heard of this, factor VIII is produced in the liver. Transplanting a liver from someone without hemophilia will give you a liver that makes factor VIII. It’s only for life and death emergencies, though. The risks of it being rejected are too high, as are the risks of bleeding. Bobby needed it as his liver had been failing.And true to his family heritage, he did it while making history. In a 10 hour surgery, he received a liver from someone who was receiving a liver from someone else… at the same time! A side by side liver transplant. This is called Domino Surgery, and this was performed at Emory University in Georgia.We wish Bobby a good recovery! Journey, a marvelous book about hemophilia in the 80s and 70s, is out of print. There are limited copies available on Amazon, and eBay. It’s worth reading.

Book I am Reading The Shack by William Young

I bought this at an airport and though being a best seller, i’s just not my style, I guess;  I could not get past the first few chapters. I skimmed through later the plot thesis: little daughter is murdered while family is on vacation (murdered in the shack), father Mack loses his faith, father receives a letter from God one day asking Mack to have a chat with him in the shack. Mack, who had turned skeptic, blindly says “Ok, sure, because maybe the letter is from God” and so on. So I stopped there; I guess I will miss the unfolding plot about how God is an overweight Chinese woman, Jesus is a lumberjack and I don’t even know what character the Holy Spirit was… maybe the postman? Dan Dick, ordained minister of The United Methodist Church, writes: “The Shack is a spiritual Twinkie – sugary sweet with little or no nutritional value. The fantasy tale is very unevenly told, but framed as a might-have-happened second-person narrative. The spiritually naïve and immature might find this to be a deeply satisfying treat. Without a sound theological basis or the application of even the most basic critical thinking skills, a reader might mistake this as more than just a fairy tale.” I won’t rate it given I didn’t read it it and will add that someone I know and respect very much read this, was moved about the message of forgiveness and subsequently reached out to a family member long lost and repaired a relationship. In that regard, this book has great value! It just wasn’t my spiritual cup of tea.

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