A Delayed Life

by Dita Kraus

  Michaela was six years old when we left the kibbutz. On a truck provided by the kibbutz, we loaded our belongings, including our cat, Tonda, and drove to our new home: Hadassim Youth Village. The children were delighted; they kept running in and out of our three rooms, kitchen, veranda, and garden. They were only sad because in the middle of the journey, our cat had jumped off the truck. To our surprise, he found his way back to the kibbutz, and a few days later Otto brought him to us.

  * * *

  That September, Michaela—she was now called by her full name—started first grade. There were too few six-year-olds in Hadassim, so the first and second grades were merged and taught by one teacher and her assistant. Only very few pupils of such a young age were being sent to the boarding school, so most kids in the class were children of the staff. They had an excellent teacher, Hadassa, who was more than a teacher; she was an inspired educator whom the children adored and who, I believe, had an influence on them that lasted for life.

  Our children also became friends with the Meyer boys, Shimon with Dany and Michaela with Gaby. Their father was the handicraft and drawing teacher, his wife a housemother in one of the dormitories.

  Hadassim was, in a way, not much different from the kibbutz. The students and staff ate in a communal dining room, and the dormitories were much like those in the kibbutz. Our children had the additional advantage of having a private home as well. We used the dining room only for the midday meal; mornings and evenings, we ate at home.

  Every week there was a film. One day they screened Swan Lake. Michaela was entranced by the marvelous ballet. For some reason, the small children were allowed to watch only till eight o’clock and had to leave although the film was not over. She couldn’t take her eyes off the screen, walking backward as I was leading her out. To this day, I feel her pain as she wept that she couldn’t stay till the end.

  A year later, we heard that there was a circus in Tel Aviv. I took the children to see the show. As we were traveling back by bus, I noticed two ticks on Michaela’s left earlobe. I had experienced ticks before and knew how to take them off. I removed them and thought no more about it.

  Three days later, Michaela became ill. Our doctor, Dr. Matatias, came and examined her. The diagnosis was unequivocal: typhus. Otto and I became terribly frightened; we had seen hundreds of prisoners die of typhus in the concentration camps. But Dr. Matatias reassured us, “Nowadays typhus is being treated with penicillin and can be cured.” He didn’t even send Michaela to the hospital. It took just a few days, and she recovered.

  On a Shabbat a few weeks later, we went to Caesarea to see the archaeological excavations. But Michaela became so weak she couldn’t walk, and Otto had to carry her on his shoulders all the way back. Dr. Matatias suspected some ear infection and sent us to an ear and nose specialist.

  We took Michaela to Ramat Gan to see Dr. Kraus, a friend and campmate of Otto’s. He also treated Shimon’s frequent ear infections. The first thing he asked to do was a blood test. The result was very alarming; she had an extremely low sedimentation rate. A thorough examination was necessary to find out what was wrong. We brought her to Tel HaShomer Hospital. For the next six weeks, the renowned Dr. Rotem tried to diagnose Michaela’s disease. The poor child underwent painful examinations. They pricked her veins for blood samples almost daily, and she had no appetite and lost weight. She was shocked when an Arab boy with a heart disease died on her ward. One night she soiled herself in bed, and this broke her spirit.

  Then came a consulting specialist from America, who concluded that Michaela was suffering from juvenile cirrhosis. In his experience the symptoms were usually evident early on. So much for the initial medical advice.

  There is no cure for this disease. When we came home that evening from our daily visit, we broke down and cried. When Shimon saw his parents crying, he too cried. Trying to console him, we said that it was easier for him to accept than for us, Mother and Father. He never forgave us, blaming us for excluding him from sharing the pain.

  The American specialist suggested giving Michaela a large dose of cortisone in an effort to stop the progress of the disease. She was allowed to go home and returned to school. The side effect of the treatment was a swelling of her face, the well-known “moonface.” But she seemed better, was stronger, regained her appetite, and apart from the regular checkups at Tel HaShomer Hospital, led a normal life.

  Nevertheless, we continued searching for a cure locally and abroad, knowing that her present state was only a reprieve. We took her to Haifa to a specialist who treated many young Arab patients with the disease and had a lot of experience. We contacted hospitals in the US and in Switzerland. Everywhere they experimented, but no one had found a cure.

  Otto decided we should have another child, and one day I found myself pregnant. We didn’t tell the children until the fifth month of my pregnancy to shorten their anticipation. The morning when I told them about the coming baby, they were so happy they just couldn’t stop clapping their hands, jumping up and down, and shouting for joy. When Ronny was born, Michaela was ten and Shimon thirteen. It was a few months after his bar mitzvah.

  For the next few years, there was no worsening of Michaela’s disease; the tests showed even a slight improvement. She went to school regularly and learned well and even participated in end-of-school-year trips. Her best friends were her classmates Bettina and Zehava, who often stayed overnight. Each of them came from problem families, like the majority of the children who were sent to Hadassim. One year I made identical costumes for Zehava and Michaela for Purim: they wore dartboards with circles in black and white in front, on the back, and on their heads. They were a great success.

  When Michaela was sixteen, Aunt Ella invited us to London. It was a very successful vacation. Ella sent us on day tours to Oxford, Hampton Court, Berkeley Castle, Blenheim Palace, the Cotswolds, and other tourist attractions. Of course we went with her to Kew Gardens, the Tower of London, Kenwood Park, and the open-air theater in Regent’s Park, where we saw Cyrano de Bergerac and A Midsummer Night’s Dream.

  Ella was a very generous and loving person, but she had to be obeyed and did not suffer contradiction. One day, when Michaela did not get up in time for some trip, Ella pulled off her blanket and exclaimed in a loud voice, “Up! Up! Up!” Michaela burst into tears and rolled herself into the fetal position. Ella was stunned. She had not expected such a reaction, and I could see the pain in her face. But after that, she was much gentler with Michaela and bought her many presents.

  When we returned from London, though, there was a sudden change. Michaela’s next blood test was alarmingly bad. I remember the moment when the laboratory secretary handed me the results. From her worried stare, I understood that my face must have been white. I felt my heart pounding hard but hoped that my expression stayed calm. I was gripped by the anxiety that I would lose control and show my fear in front of the child.

  This had been my greatest fear throughout the years of Michaela’s illness. I dreaded the moment she would become aware of what her father and mother knew: that she would die. Not that we would tell her, heaven forbid, but that she would read it in our faces, in our gestures. When I bought her new shoes or when I sewed a new dress or blouse for her, I could not banish the thought that this could be her last dress or her last pair of shoes. Will she live long enough to wear them? Can she read the anxiety in my eyes? I forced myself to seem cheerful or at least composed, to smile when my heart contracted with fear for her young life. I did not know how long her disease might last. I did not, as Otto did, look for information about cirrhosis patients’ average life expectancy and the manner of their death. On the contrary, I avoided finding out the details and possible complications of the disease. I felt that it was better so; it gave me more strength to pretend to her that soon she would get better.

  After our return from London, there was no more respite. Michaela became irritable, and there were constant conflicts between her and Otto. She was moody and often unpleasant
and nagging. Otto didn’t have patience with her. She wanted to go away and live in a kibbutz.

  Otto consulted with a friend named Ephraim in Ein HaHoresh, and he proposed that Michaela come to the kibbutz as an “outside” student. She would join the group of kibbutz children of her age, live with them in their dormitory, and study with them. Ephraim and his wife would become her foster parents and look after her. It was a generous offer; they both knew of Michaela’s disease and her difficulties, yet they were ready to take the responsibility. Michaela was enthusiastic. She had been a kibbutz child till age six, and for her it meant a kind of return to better times. Ein HaHoresh is next to Kibbutz Givat Chaim and is not very far from Hadassim.

  The plan did not work out. Michaela moved to a room with three other girls in the dormitory of her age group. The school year began; she was in grade ten. But soon there were problems. She didn’t feel well, and her foster parents began to worry. We visited her once or twice a week. It soon became apparent that she could not stay there. Her relationship with the roommates also didn’t add to the situation; kibbutz children are known to be a close-knit group that does not easily integrate outsiders.

  After less than three months, we brought her home again. She could not join her former class; she had lost many days due to spells when she had stayed in bed feeling unwell and didn’t go to school. It was therefore decided to have her repeat grade nine. She was not too upset by this because she also had friends in that class, and the teachers were the same. They all knew of her illness and treated her with consideration, although she did not demand any privileges.

  The cortisone treatment had been long abandoned, since it had not brought any improvement. She now only got medication for her symptoms, and when her blood count went down, she got blood transfusions, which rapidly improved her strength, although not for long. What bothered her most were the painful cramps in her legs, which she got frequently, especially in bed.

  We got advice that organic foods could improve her state, and a specialist in organic diet, Yitzhak Ben-Uri, was recommended to us. He lived in the outskirts of Netanya, where he grew many kinds of organic vegetables and herbs. He had built an annex where a few patients could stay and be under his constant supervision. He tested Michaela by examining the irises in her eyes. He had a chart with explanations, and amazingly, even we could see where the damaged liver was indicated. He was aware that he could not cure her and told us so, but he promised she would feel much better if she followed the diet he prescribed.

  Michaela was eager to cooperate and agreed to stay in the little hut in the yard but often joined the family in their house, where she was welcome and treated kindly. For the first days she had to fast, but Ben-Uri did not dare leave her completely without food. In just a few days Michaela was feeling better; there was no doubt that the diet was beneficial. In a week she returned home much improved; her skin had a healthy look, and she was cheerful.

  However, to keep the diet was a complicated task. First of all, she was not allowed to eat anything that contained salt, which meant I had to travel to a health shop to buy unsalted bread and other items that, until then, I never thought contained salt. No animal products were allowed, neither milk nor cheese, and no eggs or baked goods made with eggs. Only unsprayed vegetables and fruit, which we bought from a farmer near Netanya or in a health shop in Tel Aviv. Many kinds of vegetables and fruit were also forbidden, such as tomatoes, eggplants, and oranges. It became a very time-consuming—not to mention expensive—task, but of course I did it all to the best of my ability.

  Yet it turned out that Michaela was cheating. She would sneak into the fridge and take a piece of cheese or a pickle. She developed an obsessive craving for salt and did not hesitate to open other people’s kitchen cabinets and help herself to things she was forbidden from eating. Neighbors told me secretly, not that they minded, but they worried for her, because they knew that she was on this strict diet.

  In those years, when she was sixteen, seventeen, and eighteen, she loved new clothes, and I would sew dresses and skirts and blouses and knit her sweaters and pullovers. She was impatient and moaned at me when I needed her to try them on, which caused family conflicts. Otto became angry when she raised her voice at me, and he shouted at her that she should be grateful that I sewed for her; at me he shouted that I should stop making dresses for her when she was only abusive and didn’t appreciate it. I had a hard time keeping them apart.

  Michaela was about eighteen when her childhood friend Gaby reappeared. He was already in the army, serving at a base not far from Hadassim, and he started visiting quite often. She liked his visits. When he and Michaela were together in her room, I could hear her giggling; he was funny and amusing. In time I understood that they had become lovers. She confided it to me when she realized that she might become pregnant without knowing it. For several years, she had not had her monthly periods.

  I made an appointment with the gynecologist Dr. Gross in Netanya. She examined her and then looked at me with a worried expression. “I cannot find her uterus; it is completely undeveloped,” she said. I told her of Michaela’s disease, which explained the situation. On the one hand, I was relieved that there was no danger of her becoming pregnant; on the other, I mourned the fact that she would never become a mother. As improbable as it was, my heart still hurt at the certainty.

  Michaela was in the last class of high school. It was clear she would not be able to take all the matriculation exams; her attendance had been irregular, and her mental capacity was also affected. I didn’t know it then, but later I understood that her brain was not receiving enough oxygen because of her low blood count. The school principal, Zeev Alon, spoke to her and gently explained that instead of a matriculation certificate, she would get a school-end certificate, which proved that she completed eight years of high school.

  The question now was what she would do. Her classmates all went to the army, so she no longer had friends in the village. We thought she could learn some handicraft. She was talented in that field; she produced very pretty batik hangings and ceramic objects, and she also drew tasteful fashion designs. There was a handicraft workshop in Hadassim, led by Fili, the artistic wife of the school principal. She encouraged Michaela and paid special attention to her. In those years enamel jewelry came into fashion, and Michaela decided that this was what she would like to learn.

  There was a shop that sold all the necessary tools and materials for enamel jewelry on Sheinkin Street in Tel Aviv. The owners, a husband-and-wife team, imported the materials from a German firm, and the wife also taught a course for beginners. Michaela started to learn there twice a week.

  I drove with her to Tel Aviv. Sometimes I would stay with her and watch, helping her to understand the instructions and so learning them myself; other times I waited for her in a café. She loved the work, and we decided to establish a small work corner in her room, so she could start making things at home. I bought a sturdy worktable (the metal bases of the pieces had to be hammered into shape), a firing oven, tools and dies, clasps and chains and pins, and a lot more. But after a few weeks, traveling to Tel Aviv tired Michaela, and we stopped the course. She was also unable to grasp the more complicated procedures; her memory did not retain what she learned. From then on, she only worked at home.

  Michaela did not suffer pains from her disease; the liver itself does not hurt. As I said before, she would get very painful cramps in her legs, which could last as long as half an hour. It helped a little when I massaged her leg muscles. Another problem was that her arms and legs, and even her abdomen, would become swollen, and she would gain several kilos. Against this (and without my knowing) she took diuretic pills, which expelled the water but made her skin dry and peel. She also suffered from dryness of her mouth, and there was a kind of alcoholic smell in her breath.

  Nevertheless, she had a new boyfriend, Avi. He was a good-looking boy from Kfar Netter, a neighboring village. A nice, regular, down-to-earth, friendly fellow, doing his army ser
vice. On his free days he borrowed his parents’ car and came to visit Michaela and sometimes took her out. When she was with him, she somehow revived, dressed up, put on makeup, and looked charming. Avi probably wasn’t aware of the seriousness of her illness.

  The disease had been dormant between her tenth and sixteenth years, but following our London trip, it progressed slowly but steadily, and the necessity for blood transfusions became more frequent. Each of us donated blood to the blood bank so that she had an ensured supply. After age twelve, Michaela was no longer treated at the Tel HaShomer children’s department but in the department for internal diseases at Meir Medical Center in Kfar Saba.

  One evening in September 1970, Otto suffered a heart attack. He was put in the cardiology department, where he had to lie without moving for twenty-one days. At the same time, Michaela was hospitalized two floors below, being treated for her edemas and getting a blood transfusion.

  The stress I was under was almost unbearable. Here was my husband, his life in acute danger; there my daughter with her suffering. Moreover, this time she was more confused than ever, repeating endlessly some silly phrase and giggling uncontrollably. I became frantic with worry. Little nine-year-old Ronny was at home, being cared for by our friend Lea and by neighbors. Shimon was already in the army.

  After a few days, Michaela was well enough to be released home. The blood transfusion had helped. Otto returned three weeks later. He was not allowed to go back to work and had to take it easy. But he felt well and soon became his old self again.

  Keeping the saltless diet was all the time a great problem for Michaela. I would cook all kinds of appetizing food without salt, using dried celery leaves, which seem to taste salty but do no harm. She had a craving that made her seek the most salted foods she could lay her hands on. No warnings, no talking to her helped. Her legs and feet were constantly swollen. She tested them herself, pressing a finger into the flesh, creating a depression that did not disappear after she removed her finger. Somehow she managed to get hold of diuretic pills, which she hid in her bedside table drawer. I was discreet and never opened her private hiding places, but Otto did. He saw the pills and confiscated them. But after a time she had new ones. It was clear that she bought them frequently without a prescription at a pharmacy in Netanya, when she occasionally went for a haircut or just for an outing with Avi.