Robert K. Massie

A Mother’s Journey

Laurie Kelley May 14, 2012

Today is Mother’s Day, a special day for mothers of children with chronic disorders, like hemophilia. The sacrifices and suffering they endure creates women of strength and compassion, and they deserve to be celebrated. Me? I was treated to “The Avengers” by my three children, with an extra large popcorn and soda. Perfect way to celebrate!

And a perfect book to read this week is Journey, by Robert K. and Suzanne Massie, first published in 1973. The intimate story of a young couple facing the diagnosis of hemophilia in their infant son, Journey has become a classic in hemophilia. It is, arguably, the first book written about hemophilia. It slowly unveiled the suffering and disruption hemophilia causes, and what life with hemophilia was like before the advent of clotting factor. The story is written in alternating chapters by Robert and then Suzanne. They each have distinctive styles. Robert shares the history of hemophilia, the genetics, the science behind it and the treatment. He also delves into the blood banking industry, and the shocking policies and politics of blood. Suzanne shares the family’s story, day to day, and the exquisite pain a mother experiences while watching her son suffer through the night.

But these are not ordinary parents. Robert K. Massie is a Pulitzer prize winning author, and having a son with hemophilia and being a writer at Newsweek, led him to research and eventually write Nicolas and Alexandra, the captivating masterpiece about the last Tsar of Russia, whose son also had hemophilia. It reads at once like a great historical novel, highlighting the tragic love story between the two royals, and postulates how hemophilia might have contributed to the downfall of the empire and the take-over by the Bolsheviks. Suzanne helped research and edit the book extensively, and in time, became an expert on Russian culture and history. The family gained notoriety when the book was published and then made into a Hollywood movie.

The story concludes when their son Bobby is 18. Later editions included an update: Bobby survived, contracted HIV and hepatitis C, attended Ivy Leagues colleges and became an Episcopalian minister. He also became a social activist (most notably against South Africa’s apartheid system) and a politician, running for Lieutenant Governor of Massachusetts, and later, the US Senate. He has dedicated his life to public service and has accomplished so much.

Suzanne, his mother, became an author in her own right, on Russia, and later became President Ronald Regan’s advisor on Russia during the Cold War! She could never have seen where her journey as a young mother of a child with hemophilia could have taken her.

As mothers of children with hemophilia, we know the limitations our sons can sometimes face. Reading Journey makes you appreciate what is possible, how much we as women can endure as mothers, and gives hope that despite the suffering, crippling, hospitalizations, pain and days or weeks lost from school or work, all things are possible. Suzanne is an extraordinary mother who raised an extraordinary son.

I am very proud to say that we will be honoring this mother and her son at our second annual spring gala for Save One Life this Thursday in Topsfield, Massachusetts. This is another story to add to their journey. Suzanne is now 81, lives in Maine, and is still writing! Bob has just published his memories (which I will review in a future blog) and Suzanne hopes to publish her story on being Regan’s advisor. It is an honor to know this mother and to celebrate her life and accomplishments on Thursday.

Happy Mother’s Day to all those with children with hemophilia!

You can order used copies of Journey through Amazon.com; the book is out of print and new copies are not available.

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.

Sunday Night at the Movies

Laurie Kelley August 16, 2010

Movies are on my mind for two reasons: 1) we finally broke down and bought a real TV (no one in our house has watched TV or movies in months, possibly years, since we cancelled cable and then our TV died, and 2) I was privileged to watch the new documentary “Bad Blood,” by director Marilyn Ness. This movie debuted July 28 in New York City, and I was invited and couldn’t attend due to travel. You can watch the trailer on YouTube. It’s about history, our history, the history of hemophilia, AIDS and hepatitis C. I want to blog about what I saw, but…. you’ll just have to wait for the review to come out in PEN in November!

Instead, let me offer you another movie about hemophilia history: “Nicholas and Alexandra.” Made in 1971, based on the Pulitzer Prize winning book by Robert K. Massie, who is the father of Bob Massie, who was in the film “Bad Blood,” it’s the story of the most famous historical figure with hemophilia: Prince Alexis, heir to the Russian throne.

Massie boldly hypothesized that hemophilia was influential is causing the Russian Revolution of 1917, in which the Communist came to power, as the royal family was preoccupied with their only son’s suffering from untreated bleeds. Enter the evil, mad monk Rasputin, one of history’s most easily recognized figures, who was able to hypnotize the boy and calm him, and gain control over the affairs of state, and you have a true story that is almost too unbelievable to be true. And it starts as a beautiful love story between the royals. I loved the book, but the movie deserves praise too.

Directed by Franklin J. Schaffner (known for “Planet of the Apes” and “Papillon”), it was nominated for Best Picture, and is sumptuous in its costumes, settings and scenes. The acting is superb. There are heart-wrenching moments watching the parents agonize over the pain their son suffers. You’ll learn about Russia, history, hemophilia and human nature. The film ends abruptly and brutally in August 1917, as the story of the Romanovs did, in real life.

Rent it on Netflix this week, or buy it on eBay. It’s worth having; if your child has hemophilia, be sure they watch this to know the importance their disorder made to the world. World War I changed the entire world forever, and so perhaps, did hemophilia.

Great Book I Just Read

The Turn of the Screw by Henry James
And speaking of classics, I read Henry James’s The Turn of the Screw in one night. A psychological thriller, beautifully written, and it always keeps you guessing. This is one book meant for a book club. In the nineteenth century England, a governess is sent to live in a huge, remote mansion, to tend to a young brother and sister who have no mother. She soon believes that the former caretaker, Peter Quint, has returned from the grave to possess the children’s souls… or is she only imagining the apparitions, the noise, the children’s own secret glances and whisperings, as though they were in on the scheme? Cleverly written, there appears no right or wrong answer, despite the happenings and events, or is there? Enjoy a spooky night at home with this book, also made into an excellent movie by the name of “The Innocents.” Four stars.

A Christmas Gift of Life

Laurie Kelley December 21, 2009

Bob Massie was given a second chance at life this summer. In a previous blog I shared how this famous person with hemophilia, made famous by his own parents who tell his life story of growing up with hemophilia in the 1960s and 70s in the incredible book Journey, received a liver transplant this summer in Atlanta, in a historic operation. Bob is doing much better, and looks great. I was honored to get a phone call from him, and an invitation to his home in Somerville. I visited him last week.

I hadn’t seen Bob in years, not since he decided to run for the office of Lieutenant Governor of Massachusetts, the first person with HIV to do so. It was great to see him, and I had kept up with him periodically through his sister, Susanna, who also has a son with hemophilia. Bob wanted more than to just visit; he wanted to give back the gift of life: his remaining inventory of factor.

His gift of 120,000 IU of factor will indeed give life to many in developing countries. We have a long list at Project SHARE, and this meant tooth extractions, surgeries and emergency stores could be provided.

The Massie’s home is lovely, one of those solid, stately colonial homes that is so firmly built it could withstand a hurricane. Somerville is a densely populated city, with little space. Houses sit in a row, closely together. The Massie’s house has an ample back yard, with garden and trees. Inside, framed photos are everywhere: his family, including his lovely wife Anne, and his three children, John, Sam and Katie. A photo of young Bob in a wheelchair with Muhammad Ali caught my eye. I remember the wheelchair shot (sans Ali) in the book Journey. Other photos included Bob with Hilary Clinton, Bill Clinton, and Al Gore.

I got to meet John, who is a college student, a polite and friendly young man. It sounds like the Massies are all doing well; mother Suzanne, who is an expert on all things Russian and served even as advisor to president Ronald Regan, still at the age of 79 dashes off to Russia and continues her work there. Amazing, but when you read Journey, you are reminded again of her strength.

From the many people around the world this holy week of Christmas who will receive a most wonderful gift of factor, a gift of life, thank you, Bob Massie. We all wish you continued good health and happiness!

Great Book I Just Read
What Strength Remains by Tracy Kidder

I’ve been a fan of Kidder’s since reading (three times) Mountains Beyond Mountains. In this wonderful book,
Kidder tells the remarkable story of Deo, a third-year medical student, and a refugee from Burundi, who arrives in New York in 1994 penniless and suffering from post-traumatic stress disorder. He escaped one horror to face new struggles: no knowledge of English sleeping in abandoned tenements in Harlem, working for $15 a day. Occasionally Deo, who survived horrors in Burundi, is disturbed by flashes of memory of his past. Kidder accompanies Deo for 6 months, documenting his progress, recording hsi story and eventually returns to Burundi with him. When recording his story about the genocide in war torn Burundi and Rwanda, Deo panics. Deo describes what his people call “gusimbura,” the ability–the unwillingness– not to recall bad things, and begs Kidder not to “gusimbura” him. He wants to forget.

Kidder is one of our greatest skilled, journalist writers; the story moves effortlessly, and deeply: Deo is first befriended by a nun, then an older couple, a sociologist and his wife, an artist, who pay for him to enroll at Columbia University’s School of General Studies. He eventually gets to medical school; you will be inspired at his determination and intelligence. All seems well. But all is not well. His return to Burundi is heartbreaking and healing; in the end, a glorious thing happens. Please read this book: it will make a wonderful holiday gift for someone you know–or yourself! Be inspired by the amazing life of Deogratis, whose name means in Latin, “Thanks to God.” Four stars.

The Royal Disease Defined

Laurie Kelley October 11, 2009

You probably already know that hemophilia is referred to as the “royal disease.” It’s not a royal disease, of course, but it was made famous by the royal families of Europe, some members of which had the blood disorder. Britain’s Queen Victoria is the world’s most famous carrier: she had nine children, but only son Leopold had the disorder.

Up till now, no one knew which type of hemophilia the royal line carried: A or B?

Read Nicolas and Alexandra, by Robert K. Massie, if you want a fascinating look at history that reads like a love story. This was also made into a spectacular movie. And for children, I offer my own book Alexis: The Prince Who Had Hemophilia, free of charge through my website. If you have hemophilia in your family, this is a story you must know!

The results are in; the DNA results, that is. Britain’s Queen Victoria’s family had a severe form of hemophilia B. Our own University of Massachusetts’s Dr. Evgeny Rogaev has conducted DNA tests on the remains of the Romanovs, the queen’s Russian relatives. Victoria’s granddaughter Alexis married Nicholas II, the last Russian tsar. Rogaev examined the remains of Prince Alexei, himself, who had hemophilia, and who was killed with his entire family on Lenin’s orders.

This is one of history’s most fascinating stories: how hemophilia played a part in the overthrow of the Russian dynasty and perhaps led to the Communist take-over. Communism helped to define much of world history following World War I.