Doron Almog's Battle on the Home Front
July 19, 2014
Nahalat Eran – ALEH Negev
By Doron Almog, father of Eran
Read Doron Almog’s moving memorial to his son Eran upon the conclusion of the thirty-day mourning period. At the memorial ceremony the ALEH Negev rehabilitative village was renamed Nahalat Eran, in memory of the young man who was the inspiration behind the village’s inception.
In the chapter of Psalms that speaks about the departed we read: “For there is no completely righteous person in the world who does only good and does not sin.” This verse does not apply to our Eran. Eran Almog was completely righteous, free of any sin.
Some people live long. Some people speak a great deal. Eran lived a short life of only 23 years, during which he never spoke a word. Yet as we saw during the week following his passing, Eran inspired a sensitivity and feeling in tens of thousands of people in Israel and throughout the world. A constantly flowing river of people poured into our home all week long. An ocean of letters, telegrams, emails and SMS messages still continue to flow. I ask myself, how did this occur? How did a boy who never spoke a single word bring about such powerful feelings and emotions, and are we capable of translating these emotions into a significant legacy?
This ceremony is meant to be part of the answer of what is the legacy of Eran Almog, our beloved son.
We all know that Eran was the moving force that established ALEH Negev, the rehabilitative village that from today on will bear his name. This village is here thanks to Eran, who never called me Abba, or Didi Imma, or Nitzan Sister. He was a pure and holy child and we were his messengers. We who chose to establish ALEH Negev are honored to name it Nahalat Eran, a rehabilitative village for people with severe disabilities, a future of hope for special people like Eran, who are unable to say even one word of thanks. If I would be asked to define in one sentence the essence of Nahalat Eran, I would say it is the result of a tremendous undertaking that expresses unconditional and boundless love for our Eran and others like him.
Eran loved the village that today bears his name, but to our sorrow, our dream of seeing him live out his years here did not materialize. As our great leader Moses gazed at the Land of Israel from the peak of Mount Nevo and heard the prophecy, “To your children I will give the land; you have seen it with your eyes but you will not cross over,” so too Eran’s illness cut off his short life and left us with his nahala, his legacy and will. Unspoken and unwritten, it is everything he taught us about our task as parents and as a society regarding our obligations and commitments to the weakest of our children. Just like Moses, who stuttered and spoke with difficulty, required his brother Aaron to serve as his mouth, so we were Eran’s mouth during his lifetime. And today his legacy demands of us to establish the nahala, the portion that he so desired. But the portion in itself is not his legacy. His legacy is the way we as parents and as a society cope with and treat the weakest amongst us. His legacy is built on layer upon layer of difficult tests that we, as his family, had to overcome.
The first test was the challenge of the shattering of expectations. As John Lennon wrote it in his song Beautiful Boy, “Life is what happens to you while you’re busy making other plans.” A few months after Eran’s birth we found out that he would suffer his whole life from a combination of cognitive disability and autism. We had hoped and dreamed that he would be more successful than us. That he would reach higher plateaus. All our expectations crashed on us at once. No bar mitzvah, no wedding, no children, no academic titles. This would not be the child that we would be able to boast about his accomplishments. There were those who suggested that we not even take him home; that we leave him alone, like my brother Eran who bled to death lying for hours next to a burning tank during the Yom Kippur war. And I swore that I would never leave a bleeding soldier behind. We all swore that we would never abandon our son Eran.
The second test, the hardest of them all, was the challenge of love. What is love? Is it a yearning for something we desire? We made a decision to love Eran. We decided that love means boundless and unconditional giving. This test was a difficult undertaking all the time, minute by minute. I am the father of a 23-year old boy who still travels with diapers in his car, a father who for 23 years cared for his son as if he never stopped being an infant. This love carries with it an unparalleled depth of commitment, unending worry and nonstop activity.
The third test was the challenge of shame. How do you tell people that you have a disabled child? How do you deal with primitive opinions and stereotypes? A society that is ashamed of disabled people is a society lacking human sensitivities. These children are part and parcel of our own selves, and every single one of us can find himself in a split second completely dependent on the kindness of others. We decided that we would never be ashamed of Eran. We would give him the best we possibly could, and we would expose ourselves and our son to the public whenever we wished. We decided to speak openly about Eran and his world. Today, at this time when Eran has become a national symbol, is a day of maturity. It is a day when sensitivity has proven victorious over narrow-mindedness. A great breach has been made in the wall of stereotypes and primitive ideas regarding the world of people with cognitive disabilities. But the road ahead is still long. The wall still stands powerful and tall. The breach that Eran created needs to be expanded and widened further and further, until the wall is broken and shattered completely.
The fourth test was the challenge of routine accomplishments. To worry that he shouldn’t be discriminated against, that he should receive the conditions appropriate and fitting to his needs. To fight that his special-education school opens each year on the first of September. To make sure there is an appropriate educational program. To see that he is challenged. To ensure appropriate medical treatment. To make sure he is neat, clean, dressed well and put together. To see to it that his shoes are not too small, that his socks don’t have holes. He needs to constantly be watched to make sure no one hits him or hurts him. After all, he can’t tell us if he is abused. He can’t complain. At best, he will smile as an expression of his thanks.
The fifth test was the challenge of challenging him. We needed to teach him how to surpass the boundaries of his capabilities. We needed to help him acquire new capabilities, new habits. It took us three years to teach him to drink by himself. It took another three years to teach him to eat alone. He ate with a special spoon and plate, in big chunks, but he ate alone. We taught him to play ball. We taught him to swim. We taught him to throw away garbage. We taught him to clean a table. We didn’t stop challenging him for a moment, for to challenge him was to challenge ourselves. To stop challenging him was to make ourselves more limited, more enclosed in our narrow worlds. And all the time he seemed to say to me, “Abba, don’t be autistic like me. Think, do, don’t stagnate. Move forward. Try to learn about my feelings and my world, about my problems and issues. Don’t close yourself off in a world of personal achievements to glorify your ego. For if your ego is the center of your world, I will be left out in the street. Don’t ever stop thinking about my existence. Don’t ever stop the tremendous effort to create for us a better future.”
The sixth test was the challenge of increasing function ability. We needed to constantly search and adapt means and methods that would bring about advancement, growth and joy. We needed to constantly create stimulation – through water, computers, music, television, animals and multi-sensory rooms integrating lights, sounds, soft mattresses and music. We needed to work on developing specialized computer programs, special bikes, special plates, special silverware and special equipment.
The seventh test was the challenge of aesthetics. To ensure that everything around him is beautiful and well-groomed, that there is greenery, parks and gardens. To make sure that the colors, shapes, furniture, design and pictures should all be coordinated and pleasing to the eye. To make sure that everything radiates warmth and love, softness and comfort. We felt as if we were designing the house of our dreams, for it was meant to benefit the purest of our children, for those who never harmed another soul. Yet at the same time, these are the children who are the most vulnerable. These were the children who are denied freedom of choice. They are the ones who will never go with their friends to tour India or South America or any other place. They are the hostages against whom we measure the quality of kindness within each of us.
The eighth test was the challenge of doing. We needed to join forces and work harder and harder, again and again, day after day. To undertake to do small things and big things. The test of love manifests itself in action – action that is the result of thinking, of planning out details, of doing out of joy. Action that integrates the world of the most severely disabled to the world of strong and successful. Action that connects people from the opposite ends of society’s rainbow. Religious and secular, Jews and Muslims, Israelis and people from abroad, people from underdeveloped countries and people from the wealthiest countries, poor and rich, light-skinned and dark-skinned. This doing led to the great undertaking of establishing a village that has no parallel anywhere in the world. A village that will give employment to hundreds of people in the south of Israel. A village that will develop knowledge centers and learning methods, vocational opportunities and medical care. A village that will create a vibrant community for the most disabled, people abandoned by regular society. A village that will create a future of hope and will be a source of pride for humanity. A village that from today on will be called Nahalat Eran.
The ninth test was the challenge of breaking through consciousness. Going to all corners of the world and telling the story of Eran, over and over and over again. Without stop. To Christians and Jews. In synagogues, halls, conferences, private homes, interviews, ceremonies and special occasions. To inspire hope in parents of disabled children whose world was destroyed. To inspire action. To speak again and again about the measuring stick of human sensitivity that demands nurturing from when we are in kindergarten. To create a better, more tolerant, more human society. A society that cares about and acts on behalf of its weaker members. A society that remembers that the power of our humanity is measured by the way we treats the weakest amongst us.
And the tenth test, the most difficult challenge of them all, is to continue to do all this without Eran. To come to the village and see Eran’s bike standing forlorn. To see his room, his ball, his bed and his clothes and miss him anew. To know how much he loved it all but can no longer enjoy it. And despite this pain, to continue to do more and more because now it is not only on his behalf; now it is truly for everyone else, and that is what he wanted – that we act to benefit everyone. That we never ever leave them bleeding behind.
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