I awaken each morning and wait until I see the rise and fall of his chest. When we say goodnight, it is with knowing we may not see each other again.. How does one say goodbye to a life partner? There is no way. We have been each other's lives for over 50 years. It has been a good ride, filled with so many good memories.
Neil is fully aware of how quickly he is slipping. He is sad , but at peace. He talks to me about Kafka, Gimple the Fool, Lady of the Lake and his deep love of Yiddish.
He is a lover of life, of news of any kind. He loves good food, good movies, good friends and good jokes, emails from friends. He is happy when I laugh or make him laugh. That does not happen as much as we would like these days, but we are not without laughter. Good friends brought over a beef stew and a delicious honey cake (as per Neil's request) Friday night, and then introduced us to a very funny" Curb Your Enthusiasm" episode that we had not seen.. We laughed until we cried. Laughter.. .such a sweet release. He said he wants to die laughing. I think he came close Friday night.
Neil is first and foremost a family man; I know no one who enjoys being with his children/grandchildren more than he does. Our children have honored him by coming many times this summer and calling/skyping often.. Some days he is too weak to talk, but loves to listen in.
Neil once asked me what I thought were the highlights of our life together. I listed trips, weddings, special events and then asked him the same question.. For me, he said, the best times were the simple ones... waking up next to you each morning, holding your hand, walking on the beach, looking at the faces of my family and friends around the table. That was before the grandchildren, who delight him more than he can say.
He is teaching me how to die with grace and dignity. ..Together we observe his loosing pieces of himself . This disease has shaped our lives and it will continue to shape mine. I will strike back at ALS and take my revenge by to working towards a cure. Neil's love and concern for sick children drove him to create the Rudin Family Giggle Fund . My anguish and hatred of ALS will lead me to supporting and fundraising for ALS/TDI, a research institute in Boston that works 24/7 for a cure.
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A very dear friend told me she heard a rabbi say that a death should be a celebrated event, even more so than a birth, because at a birth we do not know how a child will turn out or if the child will lead a good and moral life., But at death we know how a person lived, and if it was a good and decent life, it should be celebrated and honored. ..Morality, fairness and decency, humor, devotion to family, concern for those less fortunate have been consistent values in Neil's life. There is so much more he would like to accomplish, but that task must be left for us to continue.
cheryl
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