Nicholas and Alexandra

What a doll!

Our eminent researcher of all things hemophilia, Richard Atwood of North Carolina, has found a book with “paper” dolls related to hemophilia! I certainly had paper dolls growing up, and apparently, we still have them for kids these days.

Nicholas and Alexandra Paper Dolls, published in 1998, is an oversized book (9”x12”) on the family of the last Romanov Tsar, Nicholas II, whose son Alexei had hemophilia B. The book includes 11 dolls on 16 plates printed on lightweight cardboard. There are two pages of text with notes and instructions to provide historical insights and fashion commentary. Alexandra has two dolls, accompanied by six dresses, including her 1894 wedding dress and 1896 coronation dress, plus ball gowns. Nicholas has two dolls, accompanied by five uniforms. Alexei’s older sisters, Olga, Tatiana, Marie, and Anastasia all wear the same casual dresses, that may be covered by two sets of identical dresses. Alexei is dressed in a sailor suit that may be covered with a uniform. Other dolls are the mad monk Gregory Rasputin in a monk’s garb and Clementy Nagorny in a sailor suit. The book cover illustration could also be used as dolls for Nicholas, Alexandra and Alexei.

The life of Alexei is briefly summarized. Alexei was born in August of 1904. From his mother, he inherited hemophilia B that was soon evident to the family, who did not publicly reveal it. Hemophilia was a deadly disease then, with no known cure. The bleeding bouts caused pain. Gregory Rasputin is described as a healer who used hypnosis to relieve Alexei’s suffering. Rasputin is also described as a lecher, a drunkard, and a con man. Clementy Nagorny was one of two sailors who acted as Alexei’s nanny.

Alexei is correctly shown with a bent left leg, though the metal brace he wore for most of 1913 is hidden. Something not revealed in the text is that Alexei’s accident at Spalo in 1912 caused femoral neuropathy (or paralysis of femoral nerve) due of an iliacus hematoma (or an iliopsoas muscle bleed). This was the medical reason for his hip flexion and bent leg. The metal brace, not Rasputin, straightened Alexei’s left leg. The instructions printed in the book do not mention the need for a sharp cutting tool such as an X-Acto knife in order to remove the dolls and clothes from the book pages.

The author, Tom Tierney, who is an artist, has signed each of the 11 dolls. Tierny is known for his series of paper dolls for a variety of historical figures, including Queen Elizabeth II, Michelle Obama, Abraham Lincoln, Shakespeare characters, and more.

And, you can still buy this on Amazon.com!

From Mineola, NY: Dover Publications. 32 pages.

Sunday Night at the Movies

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.

Best Film on Hemophilia

Tonight are the Academy Awards, and I am bound to watch the end to see if Daniel Day-Lewis wins Best Actor for his portrayal of a wildcatter in “There Will Be Blood.” The movie’s name could have aptly suited its rival, “No Country For Old Men” (which I think is the better film overall and should win Best Picture) with the amount of blood shed in it. But blood is something Hollywood and its fans feast on these days.

Blood is our domain, too. The Awards got me thinking of movies about hemophilia. And the first that came to mind is the spectacular “Nicholas and Alexandria,” the story of the last Tsar of Russia, whose son Alexis had hemophilia. Actor Michale Payton uncannily resembles the Tsar. The movie is based on the Pulitzer Prize winning book of the same name, whose author Robert Massie, has a son with hemophilia (who lived, oddly enough, about 2 miles from my house in 1987. I happily met him and confided his father was one of my favorite authors). The book is of course much better than the movie, but the movie does a tremendous job of bringing to the screen one of the most endearing love stories, most tragic leadership failures, and most climatic political outcomes of the 20th century. No spoilers here: everyone knows how the story ends. The royal family is gunned down and Lenin assumes control of the country, ushering in the Communist regime. The movie invites you into the intimacy of the royal family, reveals the sinister designs of the monk Rasputin, and relives the horrors of a world at war. As painful as watching little Alexis suffer is watching his father sign a document, renouncing the throne–300 years of Romanov rule ended–then turn and cry like a child.

It’s interesting that the movie opens with the birth of Alexis, the long awaited heir to the Romanov throne. But immediately the family, who knows hemophilia is a risk, sees signs of the disorder. I strongly encourage you to rent this movie through iTunes, or purchase it on Amazon to get an appreciation of historical hemophilia. Never before or since has Hollywood so carefully and beautifully made hemophilia the center of world events, or the center of such an epic film.

Anniversary of Tsar’s Death


Today, 89 years ago, Tsar Nicholas II of Russia and his entire family, including Alexis, the prince who had hemophilia, were assassinated in Siberia. This event shocked Russia and the world, and the elimination of the Tsar and the monarchy fueled a bloody civil war in which tens of millions of Russians died. The deaths of the Tsar, Empress Alexandra and their five young children have been the subject of many books and movies. One recent book is “The Kitchen Boy,” by Robert Alexander, which I just happened to read last night, not even aware that I was reading it on the eve of the anniversary.

The book is fiction, but draws on certain facts, and is narrated by the “kitchen boy” who served at Ipatiev House, where the royal family was imprisoned. As a servant, he had access to watch all that happened at the house, including the family’s death. He becomes close to the royals, and details their personalities, flaws, loving manner toward one another, and even their brutal deaths. The “kitchen boy,” now 94, lives in Illinois and wants to share some details he has never revealed before to his granddaughter. He records his memoirs, which becomes the narration of past events in the book. He eventually reveals who killed the Tsar and his family, and what became of the two missing bodies, believed to be Alexis and Anastasia (about whom there are also many movies and books). He reveals that actually Alexis and Maria were missing, and he tells how and why, and how that impacts his life, even now.

The book is easy to read–I read it in one sitting–and the language and style is a bit too easy. It reminded me of the kind of book we had to read for junior high over the summer. Interesting but light. You can almost believe the conversations and events took place, and I think that’s the best part of the book–the way Alexander makes the royal family come to life. But the book loses credibility towards the end. It tries to read like a da Vinci code a la Dan Brown, but it’s much too simplistic a plot for that. The plot takes a sudden radical twist at the end, which kind of left me head-scratching. I just didn’t get it.

Part of the ending included reference to someone with hemophilia (no spoilers) who had mild hemophilia, apparently had no manifestations of hemophilia his whole life, then got into a car accident, hit his head on the steering wheel and died at the scene. I am not a doctor, but this just didn’t sound accurate to me. There were plenty of accurate references to Alexis’s hemophilia, and how the poor boy suffered.

All in all, I would recommend this as a read, but don’t expect a great historical book or a great mystery. It’s light, not perfect, but a great summer beach book that can be read fast, and you may come away with a new appreciation of the Russian royal family. Hemophilia is a pervasive theme throughout the book, and plays a part in solving the mystery of what happened to the royals, and the two missing bodies. (Two stars out of four)

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