in 1904 at the age of twenty-five. In 1906, he began tutoring Alexis’s sisters in French. For six years, he came to the palace almost every day to tutor the girls without ever really knowing the Tsarevich. He saw the boy as a baby in his mother’s arms; later he caught glimpses of him running down a corridor or out in the snow riding his sled, but nothing more. Of Alexis’s disease the tutor was almost completely ignorant.
“At times, his visits [to his sisters’ classroom] would suddenly cease and he would be seen no more for a long time,” Gilliard wrote. “Every time he disappeared, the palace was smitten with the greatest depression. My pupils’ [the girls] mood was melancholy which they tried in vain to conceal. When I asked them the cause, they replied evasively, ‘Alexis Nicolaievich is not well.’ I knew that he was prey to a disease … the nature of which no one told me.”
In 1912, at the request of the Empress, Gilliard began tutoring Alexis in French. He found himself confronted with an eight-and-a-half-year-old boy “rather tall for his age … a long, finely chiseled face, delicate features, auburn hair with a coppery glint, and large grey-blue eyes like his mother.… He had a quick wit and a keen, penetrating mind. He surprised me with questions beyond his years which bore witness to a delicate and intuitive spirit. Those not forced to teach him habits of discipline as I was, could quickly fall under the spell of his charm. Under the capricious little creature I had first known, I discovered a child of a naturally affectionate disposition, sensitive to suffering in others just because he suffered so much himself.”
Gilliard’s first problem was establishing discipline. Because of her love and fear for him, the Empress could not be firm with her son. Alexis obeyed only the Tsar, who was not always present. His illness interrupted his lessons for weeks at a time, sapping his energy and his interest, so that even when he was well he tended to laziness. “At this time, he was the kind of child who can hardly bear correction,” Gilliard wrote. “He had never been under any regular discipline. In his eyes, I was the person appointed to extract work from him.… I had the definite impression of his mute hostility.… As time passed, my authority took hold, the more the boy opened his heart to me, the better I realized the treasures of his nature and I began to feel that with so many precious gifts, it was unjust to give up hope.”
Gilliard also worried about the isolation which surrounded Alexis. Princes inevitably live outside the normal routine of normal boys and, in Alexis’s case, this isolation was greatly intensified by his hemophilic condition. Gilliard was determined to do something about it. His account of what happened—of the decision by Nicholas and Alexandra to accept his advice and of the anguish they and Alexis suffered when a bleeding episode ensued—is the most intimate and moving eyewitness account available of how life was really lived in the inner world of Tsarskoe Selo:
“At first I was astonished and disappointed at the lack of support given me by the Tsaritsa,” wrote Gilliard.… “Dr. Derevenko [coincidentally, the Tsarevich’s doctor had the same name as his sailor attendant, although the two were unrelated] told me that in view of the constant danger of the boy’s relapse and as a result of the religious fatalism developed by the Tsaritsa, she tended to leave the decision to circumstance and kept postponing her intervention which would inflict useless suffering on her son if he were not to survive.…”
Gilliard disagreed with Dr. Derevenko. “I considered that the perpetual presence of the sailor Derevenko and his assistant Nagorny were harmful to the child. The external power which intervened whenever danger threatened seemed to me to hinder the development of will-power and the faculty of observation. What the child gained possibly in safety, he lost in real discipline. I thought it would be better to give him more freedom and accustom him to resist the impulses of his own motion.
“Besides, accidents continued to happen. It was impossible to guard against everything and the closer the supervision, the more irritating and humiliating it seemed to the boy and the greater the risk that it would develop his skill at evasion and make him cunning and deceitful. It was the best way to turn an already physically delicate child into a characterless individual without self-control and backbone even in the moral sense.
“I spoke … to Dr. Derevenko, but he was so obsessed by fears of a fatal attack and so conscious of the terrible responsibility that devolved on him as a doctor that I could not bring him around to share my view. It was for the parents and the parents alone to take a decision which might have serious consequences for their child. To my great astonishment, they entirely agreed with me and said they were ready to accept all risks of an experiment on which I did not enter myself without terrible anxiety. No doubt they realized how much harm the existing system was doing to all the best in their son and if they loved him to distraction … their love itself gave them the strength to run the risk of an accident … rather than see him grow up a man without strength of character.… Alexis Nicolaievich was delighted at this decision. In his relations with his playmates, he was always suffering from the incessant supervision to which he was subject. He promised me to repay the confidence reposed in him.
“Everything went well at first and I was beginning to be easy in my mind when the accident I had so much feared happened without warning. The Tsarevich was in the classroom standing on a chair, when he slipped and in falling hit his right knee against the corner of some piece of furniture. The next day he could not walk. On the day after, the subcutaneous hemorrhage had progressed and the swelling which formed below the knee rapidly spread down the leg. The skin, which was greatly distended, had hardened under the force of the blood and … caused pain which worsened every hour.
“I was thunderstruck. Yet neither the Tsar nor the Tsaritsa blamed me in the slightest. So far from it, they seemed intent on preventing me from despairing.… The Tsaritsa was at her son’s bedside from the first onset of the attack. She watched over him, surrounding him with her tender love and care and trying a thousand attentions to alleviate his sufferings. The Tsar came the moment he was free. He tried to comfort and amuse the boy, but the pain was stronger than his mother’s caresses or his father’s stories and moans and tears began once more. Every now and then, the door opened and one of the Grand Duchesses came in on tiptoe and kissed her little brother, bringing a gust of sweetness and health into the room. For a moment, the boy would open his great eyes, around which the malady had already painted black circles, and then almost immediately, close them again.
“One morning I found the mother at her son’s bedside. He had had a very bad night. Dr. Derevenko was anxious as the hemorrhage had not stopped and his temperature was rising. The inflammation had spread and the pain was worse than the day before. The Tsarevich lay in bed groaning piteously. His head rested on his mother’s arm and his small, deadly white face was unrecognizable. At times the groans ceased and he murmured the one word, ‘Mummy.’ His mother kissed him on the hair, forehead, and eyes as if the touch of her lips would relieve him of his pain and restore some of the life which was leaving him. Think of the torture of that mother, an impotent witness of her son’s martyrdom in those hours of anguish—a mother who knew that she herself was the cause of those sufferings, that she had transmitted the terrible disease against which human science was powerless. Now I understood the secret tragedy of her life. How easy it was to reconstruct the stages of that long Calvary.”
* Today, at the first sign of severe bleeding, hemophiliacs are given transfusions of frozen fresh blood plasma or plasma concentrates. New non-habit-forming drugs are used to lessen pain. Where necessary, joints are protected by intricate plastic and light metal braces. Most of these developments in the treatment of hemophilia are quite recent. The use of plasma, for example, was a medical outgrowth of the Second World War, while the design of new lightweight braces is the result of new syntheses of metals and plastics. Hemophilia today is a severe but more manageable disease, and most hemophiliacs can survive the difficult years of childhood to live relatively normal adult lives.
CHAPTER TWELVE
HEMOPHILIA is as old as man. It has come down through the centuries, misted in legend, shrouded with the dark dread of a hereditary curse. In the Egypt of the Pharaohs, a woman was forbidden to bear further children if her firstborn son bled to death from a minor wound. The ancient Talmud barred circumcision in a family if two successive male children had suffered fatal hemorrhages.
Because over the last one hundred years it has appeared in the ruling houses of Britain, Russia and Spain, it has been called “the royal disease.” It has also been called “the disease of the Hapsburgs”; this is inaccurate, for no prince of the Austrian dynasty has ever suffered from hemophilia. It remains one of the most mysterious and malicious of all the genetic, chronic diseases. Even today, both the cause and the cure are unknown.
In medical terms, hemophilia is an inherited blood-clotting deficiency, transmitted by women according to the
