<p>Sunrise, I’m glad you are in good spirits and energy. I am sending my best wishes and thoughts towards you. I admire you so much.</p>
<p>When I read this, I was in tears… in a very good way. I am a very lucky woman.</p>
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<p>On a flight from San Francisco to Newark – 3/29/12</p>
<p>A few days ago, sitting at the kitchen table, I told H that I came to accept the idea that she may die long before I do, possibly in a matter of a few years or even a few months. I hope this does not come to pass. I believe that if anyone can have a long term relationship with a deadly disease, it’s my wife. (She was able to deal with me for the last 27 years.) But if it does come to pass, I accept it. Her premature departure from my life will sadden, but not devastate me. </p>
<p>Still, I really would like her to be with me for a very long time, I’d like for us to get old together, to enjoy travel and grandchildren, to keep each other company as our bodies become frail and our capabilities gradually diminish. Our bond has a strong spiritual element, and the spirit is less vulnerable to decay than the body. We don’t play golf together, we don’t draw pleasure from snorkeling in the ocean. We just love talking to one another. Our never-ending conversations nurture and sustain our relationship. At times the conversation is sad, at other time it’s funny, but it is always interesting (well, almost, let’s not get carried away) and it is very rewarding. It is through spoken words that we feel close to each other – if you know H at all you’ll be quick to understand that long loving gazes into her eyes is more likely to elicit a ‘snap out of it’ response than an adoring gaze. But she loves to talk to me, and I, in turn, would like to go on talking to her for as long as I can. </p>
<p>As you will see soon, there is another conversation in which H has an important role – the inner dialogue that I have with myself. During my childhood, my inner voice got off to a bad start. I don’t want to kvetch about my mother. I pay a lot to do this with my therapist. But over the years, my real conversation with H gradually reshaped my inner voice – the one that is narrating my past, guiding my actions in the present, and defining what I see as my future. It’s an inner dialogue. But because of our intense emotional bond, because of our soul searching and honest exchange of emotions, observations and ideas, the inner dialogue became another way of conversing with H, and this conversation with her will continue even if she is not around to engage in real life dialogue. Being able to continue this conversation will sustain me, it will make her presence in my life real as long as my consciousness is not altered. </p>
<p>Our kitchen conversation was rather short. I was not yet able to articulate the my thoughts. I just said that I came to accept the idea of her premature departure from my life. As often is the case, H surprised me. She cried with relief, happy with the thought that my life will not be devastated. Her first reaction, after learning about her condition, was a resolution was to do anything within her power to protect her loved ones. She told me how intent she was not to leave a scorched earth behind. She is doing a fine job in preventing this from happening, but that’s a topic for another email.</p>
<p>One reason for my new found resiliency is the realization that she will not be out of my life. I will continue to see the world through her eyes. I don’t always agree with her construction of reality, but most of the time, I know what it is, ‘where she is coming from’ what dimensions of reality she focuses her gaze on. I will continue to listen to the world through her ears. Listening to meaningful conversation with great intent and enthusiasm, shunning the voices of chit-chat and small talk. I will continue to frame the questions through her eyes, even when I disagree with her answers. We often hold opposing interpretations of events and experiences. But I’m always able to understand her perspective, her motives, her intentions. So I will continue to hear her say that “noting worth doing should be done in moderation” and that “sometimes you just have to work really hard at things that you don’t like in order to do things that you do like” or “don’t keep your loved ones on a leash – make them come to you for the cookie that the learned to expect.” </p>
<p>H will continue to be my inspiration. Her conduct is central to so many things that I’m doing, so many new behaviors that I try. In fact, this essay in itself is inspired by her writings. On a side note, H and I always compete with one another. “Anything you can do I can do better” is our favorite duet, and we sang it enthusiastically to a room full of friends and strangers. I don’t believe that I have quite the neck for writing that she does, but hey, I’m not ready to give up the competition. I can still score some points toward the grand tally. And I’m a much better dancer. Ha!</p>
<p>Her voice will always be with me, too. Encouraging me, expressing trust and appreciation, telling me that I’m a good person. Making me feel that I’m good for her even when we bitterly argue and she goes on and on how my personality is faulty. The secret is that she got me to believe that, fundamentally, I am a very good person. And that even when she complains vociferously about my imperfections, she knows that I’m really a nice person and that I’m treating her well. </p>
<p>In the first few years, oh twenty or so, I was annoyed with the fact that H was always appreciative of the things that I did for her. While I, on the other hand, had little reason to appreciate the things that she did for me. Because she didn’t! She went out of her way to not accommodate my every wish, neigh, my any wish! So there was relatively little in her deeds that merited gratitude. Instead, I was appreciative of who she was, and what I learned from her. Unfair, I thought to myself. I have to work hard to accommodate her, and all that she has to do is be herself. But as I told my kids: life is not about being fair, it’s about a package deal that you get and it is either good for you or not. You don’t get to pick and choose and if you try to take out one thorny stick, the whole structure may unravel. </p>
<p>In retrospect I came to recognize that the fact that H never tried to please me out of a sense of obligation or duty was very good for our relationship. The fact that I could not make her to do things for me gave both of us a tremendous amount of freedom. Since day one, we do things for each other because we want to, not because we have to. And we make this choice again and again, every day, every hour. And at any given time each one of us is free to say, “no, I don’t feel like doing this” and “I don’t feel like it” is a good enough reason. Though, as my kids will tell you, there are always consequences to the choices that one makes.</p>
<p>There is another bright side to the sad prospect of H’s premature departure. Her condition was a catalyst for wonderful changes in our lives. I’d trade those in a heartbeat for the chance to grow old together, but this is not our choice to make. We don’t choose the events in our lives, we only choose the manner in which we respond to them. And if H were to die before me, it gives me a great opportunity to find peace and joy in the knowledge that I can be there for her, that I have an extraordinary opportunity to express my love to her. I know I can be there for her all the way. I’m not scared. I can be her soul mate as she goes through the emotional turmoil of facing one’s own death, of saying goodbye to loved ones. I can be there physically holding her hand, caressing her body, lovingly gazing in her eyes. I will be sad when the time comes to for the last goodbye, but I’ll be there. And I’ll organize for her the best ‘last goodbye’ experience that I can. If it comes to pass, I want to be there and help her let go of us To make it possible for her to leave us without feeling she failed us. I know how happy it will make her to feel. My hope is that the last voice that she hears will be mine, telling her how much I loved her and what a wonderful gift it was to have her as my life partner, as the love of my life. </p>
<p>I am married to an amazing person. And if I end up outliving her, and I still hope that this would not happen, the sadness of my loss will be balanced with a deep realization of how lucky I was to have her in my life. I was lucky to have met her and wise to recognize her virtue. Meeting her has profoundly changed the trajectory of my life. </p>
<p>We sat down for lunch at Lox Stock and Bagels – a student joint in Champaign Illinois. We talked for hours on end, six or seven hours. Before too long, H was telling me how much she would like to see the full colors of my parachute. That she would like to see me spread my wings and soar.</p>
<p>Oh, oh, my inner voice got startled. That’s alarming - there is a danger of commitment here. Nah, don’t worry! I’m going to go back to Israel in a couple of months. This is just a summer fling, and she knows it.</p>
<p>Well, she did get to see the full colors of my parachute, she did get to see me spread my wings and soar, but not as an observer. She was a participant, an enabler, she helped me make it happen. H challenged me to soar and convinced me that I could do that. She showed me the courage of the eagle, a bird who dares go higher and higher, and I rose to her challenge. I feel that the two of us are soaring in heights that few people get to explore. We see the world with clarity and calm. And if her time comes, and she is no longer able to fly with me, I will do this for both of us. I will soar above our children and grandchildren for as long as I can, and share with them the view from above, the world according to H. Through me, and through my boys, her courage, wisdom and generosity of heart will continue to inspire all who feel affinity with her. All those who appreciate her legacy.</p>
<p>your marriage is an inspiration…how beautiful to be loved like that</p>
<p>honored to read it…and inmy mind’s eye when I see his essay and his attempt to let you know how he is…keeps going back to how your friendship, your outlook, your companionship, your very voice and your years of open dialogue with your husband…became his true north in life. I also like so much that you are married to a man who recognizes the spiritual dimensions of existence where you are ever yourself and ever a force for your sons and your dearest loved ones. Your spirits are separate but entwined, and the separateness had a magic of its own that graced your union with the ability to lend strength to each other in turn. Your union will bless your children and you are united in your decision that even with the challenges of illness… they will always carry within them that your marriage was a garden, a place for growth and change, ever green.</p>
<p>Sunriseeast…I love what your husband wrote. Beautiful.</p>
<p>WOW. You are indeed a very lucky woman, just as he is one very lucky man. It appears you do deserve each other.
Thank you so much for sharing such a very intimate and moving message.</p>
<p>I have never met you but through your writing and now your H’s, I feel I know you more than I know my closest friends IRL! </p>
<p>All I can say about you and your H is you are both very blessed to have each other!</p>
<p>wow- what a blessing to have a man like that in your life- and what a blessing he has in a woman like you. It’s been amazing going on this journey with you vicariously.</p>
<p>Very beautiful!</p>
<p>Wow … just wow. How incredibly moving.</p>
<p>Regarding my husband’s note: yes, I was very touched. I cried over and over when I read and re-read it. I feel like enormous burden has been lifted off my shoulder knowing that he will be fine no matter what. I am planning to stay around long time, but realistically, I am dealing with a medical condition that has a very unpredictable path. I have already outlived the life expectancy of my diagnosis. I am living on so called a borrowed time. No matter what happens, I am at peace. I will do my best to be a long term survivor, but it’s not 100% up to me. I accept that. </p>
<p>Throughout this period, my husband and my two kids have been thriving, and I am so enormously grateful for that. They are concerned, but that’s not what consumes their life. This is a true blessing.</p>
<p>So beautiful and moving. You are a very lucky woman, sunriseeast … and Mr Sunrise is an equally lucky man.
Blessings to you both.</p>
<p>You are both amazing people.</p>
<p>Use the days, weeks, months, years left to you to max out on life. Enjoy what you have and the people you are with. I’m so glad you were able to pull off that party. Make your time enjoyable- you have certainly studied enough and worked hard enough on your health. Take pleasure whenever, wherever you find it. Quality, not just quantity, of life. You are so intense you need to be told to relax and enjoy the simple things. You did a great job with your kids and marriage- let your family take care of you and never feel guilty when you don’t adhere to your srtict regime.</p>
<p>one of my summer plans was to visit my family back in Asia. I hope I can do that.</p>
<p>S1 volunteered to accompany me - though my home country is not his favorite destination for summer vacation - been there multiple times and there is nobody for him to talk to, and can’t speak the language. Furthermore, this means that he may have to give up the summer internship that will pay him $25,000 - he said instead he will take unpaid research assistant position that will give him far more flexibility in terms of time. I told him “whoa, that’s a lot to give up!”</p>
<p>He said, “mom, once I get a job after I graduate next spring, I won’t have this kind of flexibility. So, twenty years down the road, am I going to regret not having that money or am I going to regret that I did not a few weeks with you traveling - just the two of us”. </p>
<p>I asked him whether it’s because he thinks I am going to exit the stage anytime soon. He said, “no. but at the same time, I am aware of the fact that your future is not entirely predictable”.</p>
<p>This is the same kid who made me cry by showing up at the door step with a bouquet of flowers the night before last thanksgiving when he was supposed to be joining his friend’s family nearby in Chicago for the thanksgiving weekend. (This is when my clinical trial was deemed a failure. I encouraged him to stick to the original plan because I did not want my family’s normalcy to be a hostage of my ups and downs. He defied me and made me cry)</p>
<p>I think he is a better human being than I am.</p>
<p>your family is beautiful, a testament to you and your H.</p>
<p>Better human being? Who knows? What difference does it make?</p>
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Superb sense of priorities? Yes</p>
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Perhaps… but those are big shoes to fill…</p>
<p>And, although it was not what you would have asked for… you have been able to teach your sweet sons the most important lessons.</p>
<p>He is an exceptional human being, all credit to you and your husband.</p>
<p>This really took my breath away… I have been following your journey and how you are able to express yourself but had not posted before. You and your husband are special people indeed.</p>