Robert K. Massie

A Christmas Gift of Life

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

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.

Bobby Massie Cured

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.

ADVERTISEMENT
HemaBlog Archives
Categories