Robert K. Massie Jr.

Memorial Day with a Memoir

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.

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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