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On wings and prayers By Esti Ahronovitz Tags: israel, prayer, Jerusalem  Every time Amit Gefen was hospitalized, the doctors brought a group of students to his bedside and said, "Look at this kid." Finally his father, Ehud, decided to put a stop to it. Gefen calls the rare disease with which his son was afflicted "the bad cousin of cancer." Last April 30th, on his 21st birthday, the disease killed Amit. Multiple endocrine neoplasia is an inherited disorder that first attacks the thyroid and other glands, eventually reaching the adrenal glands of the kidney. Ten years earlier, when Amit was 11, his mother, Yael, died of the same disease. Amit underwent endless diagnoses, operations and hospitalizations, but constantly engaged in birding from an early age. What began as a hobby became, despite the physical difficulties, his whole world. In the last years of his life he was a volunteer at the birding centers in Kfar Ruppin and in the Hula Valley. He loved to photograph birds and above all to draw them, which he did with great skill. Advertisement Ehud Gefen published some of the logs his son kept, which include drawings, illustrations and photos, in the form of a book dedicated to his son's memory and entitled, simply, "Amit." The limited edition was lovingly received by Amit's friends and by bird lovers all over the country, including those who did not know him. A second edition will soon be published by the Society for the Protection of Nature in Israel (SPNI). Ehud and Yael Gefen met on the bus to Mount Gilo, south of Jerusalem, where they were headed for a brief vacation sponsored by the SPNI, which runs a field school there. He was a student of geography and Land of Israel studies at the University of Haifa; she was a graduate of the Seminar Hakibbutzim Teachers College in Tel Aviv. Yael was already sick when they met. "Most doctors heard about the disease during their medical studies, but never actually treated anyone who contracted it," Gefen says. After removal of the thyroid and adrenal glands, which supply hormones to the body, patients with the disease must take drugs for the rest of their life. Carriers of the disease are underweight and suffer from fatigue, muscle weakness and digestive problems, as well as fatty protrusions on the eyelids and tongue. "When I met Yael the disease was in a dormant stage," Gefen relates. "Yael maintained her equilibrium with the help of pills and was very active. We went to live on Kibbutz Gadot." When Yael was pregnant with Amit the couple consulted doctors, but at birth Amit was an infant like any other. He also developed reasonably well. "We did not push for tests," Gefen says. Amit was monitored by the same physicians who treated his mother, and was diagnosed with the disease at the age of one and a half. "There was the start of a tumor in the thyroid gland. The doctors' recommendation was unequivocal: to remove the growth surgically." Did they consider not having children? Gefen: "I entered the relationship with Yael in full awareness. Maybe things moved too fast and I did not have time for judgment and more thought. But we had good years, and good years with Amit, too. Amit made me a father and gave me a great deal of happiness. He was a wonderful gift and I would not have forgone him. He taught me a great deal. And apparently there is a fate that cannot be avoided, for good or ill. That is part of my fate." How did Ehud cope with the terrible news at first? "I was still a bit naive and thought things would work out. I thought we had discovered it at an early stage and would remove the tumor. The doctors also said it was not certain the disease would spread, and that you could live with it. I hoped Amit would be able to continue as a regular child. I knew he would have limitations." Gefen was optimistic, but, "there were blood tests all the time, and visits to doctors and consultations. And with all that we tried to lead a normal life." In 1989, Yael's condition deteriorated. After a long hospitalization she underwent surgery at Hadassah University Hospital in Ein Kerem, Jerusalem, and recovered. "At this stage Yael knew that her life would be short and that she was living on borrowed time," Gefen relates. "She was like a pellet of mercury, a burst of energy. She was on a hyped-up trip of working, creating and finishing things." Amit's condition was also worrisome. "Despite the operation to remove the tumor, tests indicated another growth in the thyroid. He was a thin, weak boy of seven, undergoing medical imaging, but the physicians could not locate the source of the growth and decide exactly where to operate." By now, Amit already knew everything and understood, his father says, "but nevertheless did not talk about the disease." Over the years, Ehud and Yael's relationship began to suffer, and eventually they divorced. Amit lived with his mother and visited his father twice a week and every other weekend. In 1994, Gefen met Ariela, his partner today, with whom he now lives on Kibbutz Kinneret. 'What will I do?' Yael Gefen died in 1997 at age 36; Amit was 11. In the family-roots project he did a year later at school, which he dedicated to her, he wrote: "A few days after Mom died, I started to ask myself questions. What will I do? Where will I study?" What can you say to a boy who has the disease that killed his mother? "You try to give him as normal a life as possible," his father replies. "The disease is there all the time. You cannot ignore it. But you try to live, to give him a home, education, outings. After Yael's death Amit moved in with Ariela and me." Ariela and Amit connected very quickly. She teaches nature studies and the environment, and he became interested in those subjects. Amit was in sixth grade and doing very well academically, but not socially. After school, when his classmates hung out together, Amit went home. During this entire period he did not mention his mother. In 2000, Amit's family expanded: Ehud and Ariela became the parents of twins, Noga and Nitzan, and three years later, Neta. Amit was delighted to have siblings. In the summer vacation between grades seven and eight, he started to go to the fish ponds by the Degania dam, sitting patiently with binoculars, an observation logbook and pencils. His father thinks it was no coincidence that he was attracted to bird-watching: "He was drawn to the freedom birds possess. To their ability to wander. Birds are free, healthy, strong, untethered - the very things he was not." Bird-watching gradually became Amit's whole world; every new and rare discovery thrilled him. The list he kept - like all birders - of the types of birds he saw, grew longer and longer. "He looked for the rare breeds," his father explains, "and the better his equipment became, the more his list thrived." Amit listed the birds he saw in the field and then, back home, sat with the authoritative volume "Birds of Israel" - known in the family as "the Bible" - and filled in the missing details. Family outings on Shabbat, when he observed birds, exhausted him, but this did not prevent him from continuing his activities, sometimes alone. "But close to home, because he was afraid and I was afraid, too. He was not independent," says Gefen. "He was chronically weak." Amit bought a telescope and camera, and described his bird-watching experiences in a forum on the subject on the Tapuz Web site: "She [the bird] was so lovely. Pecking away indifferently just a few meters from me as I clicked off almost the whole memory card, about 200 shots ... This is the first close-up meeting with this bird and I enjoyed every minute. I don't know how to explain it, I don't know if you will understand, but after encounters like this I really feel that anyone who is not a birdwatcher is missing out." Amit underwent tests every few months. In May 2000, his father consulted with the doctors about the continuation of the treatment. Prof. Eitan Friedman from Sheba Medical Center at Tel Hashomer, an expert in the genetics of malignant diseases, helped Ehud Gefen make contact with Prof. David Gross, an endocrinologist at Hadassah in Ein Kerem. "We hit it off very quickly. I would call him on his cell phone, set up an appointment and arrive with Amit. His door was always open. He [did] everything he could to get in touch with the best doctors in imaging and surgery. He did everything for Amit." Negev adventure As the treatment with Prof. Gross progressed, during more than two years, Amit's interest in nature and ornithology increased. One day when Ehud got home from work, Amit showed him an ad in a nature magazine about registration for the coming year at the High School for Environmental Education at Kibbutz Sde Boker in the Negev. His father asked to think it over. "I pondered the matter for a couple of days, and finally said to myself: It could give him so much. It will demand tons of worry, endless trips, instructing teachers and others about his condition - but why not?" Around this time Amit began to record the migration routes of birds, and everything seemed to be fine. But shortly before he went to Sde Boker, tests done by Prof. Gross showed that in addition to the tumor in the thyroid gland there was also a growth in the adrenal gland. Surgery involving the insertion of an optic fiber was scheduled for a month after the start of the school year. "Amit got cold feet," his father recalls. "He asked me: 'How can I start the school year with an operation? How I will go back?' I told him: 'Never mind. You will start the year, have the operation, recuperate and make up the material you missed.'" The first day at the boarding school at Sde Boker was emotionally charged; to this day his father is unsure whether he or Amit was more thrilled. "I brought him there with a duffle bag and another bag, with sheets and towels. There was all the chaos of getting a room. There were three of them in the room: Amit, Nimrod and Omer. They became very good friends, and I am still in touch with them. It's a very small school, two classes in each grade, with the emphasis on nature, environment and outings - everything children in Israel don't get enough of, regrettably." Three weeks after the start of the school year, Amit had surgery. A few days later he was already on the Hadassah lawn, armed with binoculars, watching birds. Amit was small, weak, never weighing more than 30 kilograms and frequently absent from class. Nevertheless, at Sde Boker, he shed some of his insularity and learned how to get along. He traveled, went on outings and made friends. His father says he inherited this strength and desire to cling tenaciously to life from his mother: "In her last years, Yael did a great many things. She painted, did ceramics and other crafts, created enrichment corners for children and devoted herself to the house. She kept herself constantly busy. And all the while carried this burden of what lay in store for her." Amit and his father also knew what lay in store. The tumors continued to appear. At the end of 2004, when he was in his senior year, surgery was scheduled to remove a growth from his thyroid gland. This was a complex operation requiring cooperation among doctors from various fields. Amit did not share his feelings, but his father was deeply apprehensive. "We hardly talked about the fears. The disease was present enough without us talking about it," says Gefen. He asked Prof. Gross whether there were other people in the country with Amit's disease. Gross told him he was treating another patient, a year older than Amit. Not long afterward, the endocrinologist said: "That fellow I told you about - he died." Gefen was stunned. "I think it was only then that I fully realized what awaited us." The operation on the thyroid was partially successful; some of the growth was removed, but not all. As predicted, Amit's vocal cords were damaged and a communications clinician helped him to learn how to talk again. After 10 days in the hospital he returned to Kibbutz Kinneret, and a few days later went back to Sde Boker. After the operation he noted in his observation log: "How good to see the desert again. A new tripod for the telescope, and a fresh scar." Ehud remembers the trip back to Sde Boker: "We saw for the first time a bird called turit znavanit [namaqua dove]. Amit made a drawing of it. Afterward, on a return trip to the area, we saw the bird again - a true spiritual uplift for him." Amit tired quickly. On one occasion he fell asleep while watching birds, and afterward jotted down the dream he had: "At Neot Smadar [in the Arava] I was seized by a pleasant drowsiness. I threw myself beneath an eucalyptus tree and closed my eyes. And in my dream, little herons. Two. And here is the third. Chasing one another ... And warblers. So many warblers. What a nightmare. I had returned to the Hula! Luckily it was only a dream, I thought to myself, and woke up in a cold sweat." But after a few months in which he felt well, Amit was again hospitalized - this time for the removal of a tumor in his other adrenal gland. Even though he was absent from class a great deal, he made up the material and completed school with high grades, his father says: "I will never forget what the principal at the time, Dr. Ze'ev Zivan, said at the graduation ceremony. He said the graduates of Sde Boker will be heard from in the future as leaders. These are a different kind of young people, with different qualities ... who later go to all the elite [army] units." A dose of humor How does a weak boy feel among robust young people who are categorized as the most select from every point of view? According to Ehud Gefen, Amit channeled any anger he may have felt in the direction of humor. "He did not ask: 'Why me?' He accepted it and knew what lay ahead for him. He knew that his life would be one of sickness, operations, limitations and medicines." With the aid of Shlomit, a nonprofit organization, Amit did national service at the SPNI's bird-watching center at Kfar Ruppin. He acted as a guide for visitors, carried out bird-migration surveys and ringed birds. He lived in a hostel and met new friends from the birding world. In his second year of national service he was stationed at the birding center in the Hula Valley. One of the closest people to him was Yoav Perlman, an educator and birder, who shared an apartment with Amit in nearby Kibbutz Ayelet Hashahar. Amit also became Perlman's assistant. Cautiously, Amit and his father tried to map out the future. Amit planned to study at Jordan Valley College, which was close to home, and perhaps rent a modest apartment nearby. He started to take driving lessons, intending to buy a small used car: Bird-watching was one thing he was not going to give up. On the birding Web site he wrote: "Who risked his life on one of the hottest days of October and went bird-watching on his battered bicycle, his shoulders cut by the straps of a heavy knapsack containing a telescope, water, guidebook and food? And with only his faithful camera, nested safely in his pocket, ready to be pulled out and document rarities which, needless to say, he did not encounter." Amit was not able to realize his plans. In 2006, during his second year of service, he was hospitalized repeatedly at Poriah Hospital in Tiberias, due to weakness, dehydration and stomach pains. He came to his father's home and stayed there one day, another day, enervated. Still, he had some accomplishments as a birder. "A few days before the start of the Second Lebanon War," Gefen relates, "Yoav Perlman and Amit made a discovery of international proportions. While ringing birds in the fish ponds of Kibbutz Lahavot Habashan they came across a species called the Basra reed warbler, which is indigenous to the Basra marshes in Iraq. This bird is in danger of extinction and was not known to have survived anywhere else. They caught it, in a net. They verified the finding and there was great excitement. And then the war began - and Amit's private war, too." Amit's private war began on Thursday, August 3, 2006. He didn't feel well at night and woke his father, who drove him to Poriah. "Very quickly they discovered a serious intestinal infection and said an emergency operation was needed to save his life," Gefen recalls. "I raised the possibility of taking him to Hadassah, but they wouldn't hear of it. They said he would not survive the trip there." Amit never recovered from the operation. Even during lengthy periods in hospital thereafter, he did not feel well. "We always arrived at the hospital with him in pain, weak and dehydrated. He barely ate or drank." In October, Gefen decided, in coordination with Prof. Gross, to move his son to Hadassah. After an operation there he spent six days in intensive care, three of them under full sedation. "When he began very slowly to regain consciousness, he was not able to communicate," his father relates. "He was full of tubes. We got him a pencil and paper. The first thing he wrote was: 'How long was I asleep?'" He was transferred to the surgical ward, under the personal supervision of Prof. Avi Rifkin, the ward's director. "His recuperation is slow," Gefen recalls. "He eats a little. He takes a step out of bed accompanied by a physiotherapist. He has tubes everywhere, bandages and open wounds. A great deal of suffering. And you have to be strong, for the sick person and for everyone. Everything collapses - the family, the children, work, commitments. How is it possible to go on? Mentally, no one can stay in a hospital for so long. At first I slept there. Then at my sister's place [outside Jerusalem], and finally at the home of friends of Ariela in Jerusalem. I hardly went to work. We set up rotations in the family. The grandparents came, and occasionally Ariela was able to come. "At a certain point," Gefen continues, "I started to talk to the ward's social worker about the possibility of organizing volunteers to help Amit. She started to recruit students. Some of them did not connect with him and found it hard. But in others you saw the beautiful and amazing 'Land of Israel.' People who came after a day of work or study and sat with Amit and forged a connection with him. And when communication with him was impossible they sat by his bed and read him a story. I think we have to accept this challenge and create a body of volunteers for families in which someone is sick: people who will be there, not to treat the patient, but just to be with him and give themselves. We needed that so much." Amit was hospitalized for half a year. On good days he was able to get out of bed for a time and sit in an armchair, read, play computer games, listen to CDs. His friends from Sde Boker visited him. If he was sleeping, they wrote him something in his notebook. On bad days he lay in bed with eyes closed. He told people that he missed the birds. "He wanted to go outside, but knew he couldn't," his father says. "One time friends took him to the Sataf nature reserve outside Jerusalem. He got very tired there. We all knew that his place was in nature and not in a hospital." Toward the end of December he went home for a brief period. His father took him out to observe the birds, and he was happy. Those were his last forays into the wild. Into the world of birds. Afterward he returned to the hospital. At a certain stage, Gefen says, he just wanted it all to end. "I saw him suffering so much. How much can a person suffer? I was already in the process of parting with him. I knew where we were going." Amit returned to Hadassah on December 31, 2006, and never left. It was only then, for the first time, that he spoke to his father about the disease. "I talked to him about the future, about getting better, and he said: 'Dad, what future? What chance do I have? Where do you see a future?' That was the first and only time he said it bluntly, and led me to understand that he understood and had internalized the fact that there was no reason for him to go on. I told him: 'Amit, you must not lose hope. You must not surrender. You have to keep fighting.' He replied: 'What is there to fight for?'" Amit's dream was to see a large, real-live albatross. He wanted to go to the Scottish islands, home of the seabirds to which he was so drawn. That dream was not realized. On the morning of Monday, April 30, 2007, he died. The day before, the hospital psychologist had visited him. She tried to encourage him to do things, but he told her he felt extremely weak. She left a pencil and paper by his bedside. Eyes almost shut, Amit drew the head of a bird.W Bookmark to del.icio.us   Get a job The Interior Minister tells the ultra-Orthodox to find work and enlist in the IDF. Trapped in Gaza An Irish woman and her daughter are stuck in Gaza after Egypt seals the border.   1.   Reading about Amit, z"l. 09:21  |  sandra chitayat 02/02/08   2.   On wings and a Prayer 10:41  |  Sandy Ashri 02/02/08

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