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    Default Your Thoughts on Dying.

    I've been holding off from starting this thread because I was unsure of how comfortable members would be about discussing the subject. However, it would seem from the initial reaction that it is a topic many would like to contribute to or at least read and consider. It is inevitably going to include religious beliefs so if it is OK by Andrew, I'd like to wave the ban for this thread. It would be nice to think that we could consider another point of view without starting a flame war!

    Wegener's is a life threatening condition, we all know that. We have also probably considered the fact that if it has not killed us yet (true for most! ) then it may well shorten our life expectancy and quality of life. These things mean that coming to terms with death is something many of us have done, are working on or just trying to avoid thinking about. One way or another, the subject is more real to us than most even though it is a natural part of the life cycle that everyone must face at some time.

    My own experience of death has been through that of family and friends. I've seen my parent die very quickly and painlessly in old age, mother-in-law very slowly and in terrible condition and friends through brain hemorrhage and suicide. A real mixture that helps gain an understanding of how transient life is and the many ways it can end. I feel grateful to still be here after surviving Wegener's, but wonder what is in store for the future. I'm not getting any better and that's for sure!

    The moment of dying is not something I fear. I have come to terms with its inevitability and have no idea what it will bring. I have no religious beliefs to tell me the answers, but I'm sure that it will either be a great adventure or nothingness, so that would be OK too. The process of dying is something different and I fear a long drawn out deterioration similar to that my mother-in-law had to endure. I've made this known to everyone close to me so that if a decision has to be made on my behalf, they can let me go in peace and with a clear conscience. Withdrawing treatment, feeding and water is fine by me if there is no future that I would consider worthwhile.

    The problem with all the plans is that they exist in a future that I can not control. I expect that in the end, I will have to play with the cards that fate deals me as best I can. One thing for sure, I'll end up dead some day.




    And so will you.


    (Hope that went OK. I was not too sure what direction it was going in, but now the thread is live it will take on a direction of its own.)

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    Wow, deep subject but one we all need to face.In all the reading I have done of your writing Jack you seem like a wise man. I hope you do get better. I know the day will come when this humpty dumpty won't be able to be put back together again so here are my thoughts. I am a Christain and have been most of my life. I won't go into my religous beliefs but most of you probably know where I stand. I have come to terms with my mortality. I have tried to tell my adult children that I am a peace with life and death. I have had and am still having a good life despite this illnness. I have never felt that I have wanted to repeat any part of my life but have most of the time enjoyed looked fore ward to the next step in life.
    My children won't even consider talking about such things. It really upsets them.
    The hardest part is thinking about how my family and how they will cope when I am gone. They depend on me and I on them alot. Physically and emotionally. They are my best friends.
    My brother had aids and died 15 years ago, about 2 weeks after I got out of the hospitol the first time I got sick. We talked to each other on the phone daily for our different hospitols. It was the worse and the best times we have ever had. He had a humorous outlook on death. He would upset me so bad when he would come for visits he would lay on the sofa with a lilly in hand and make references to his death. Now that I look back I cherish those things that used to upset me so. It was his way. I guess we all have to cope the way our beliefs and personality allows.
    My goal is to enjoy my husband, family and friends as best I can and to leave memories to them all that are good and fun. I would like to think that I am leaving tools for their lives. I had so many people that are gone now that helped shape me into the person that I am and I think of them often with love. I want to leave that.
    Thanks Jack I really felt good to share all that even if no one gets any thing out of it. I did!!!!!

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    I don't want to die, but I know it is going to happen some day. So when the bright light comes to pick me up I will be ready. I am hoping I can stay alive till my children are grown. I have noticed with all the medicines that I am on....I am a complete space cadet! Thanks Jack for starting this thread. Not really wordy lately.

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    Life is a gift. I think in ways having Wegs is a gift, it forces us to consider our own mortality, we know that our lives may be shorter so we have the opportunity to cherish and find closure and meaning in things that we often take for granted. If I never got Wegs but died on the way home from work in a car accident, there are so many opportunties to reconnect and reprioritize that I would have missed.

    I consider myself spiritual but not neccessarily religious. I am not afraid of death, although I love life. I think the energy we create (positive or negative) is what we take with us and perhaps bring back. As an ICU nurse I have seen many deaths and I have never had one person wish for time at the office (lesson to self) they all wish for more time with loved ones. I don't know if any of the other nurses on this forum have noticed but I have frequently experienced the dying person talking to someone by name, smiling, without exception family has always said that the person or people they were talking to were dead loved ones (never live missing ones)......interesting.

    The families with the least trauma are those who have a clear understanding of what the dying persons wishes were. It is such a tragedy when death has never been talked about and 1/2 the family says that keeping Grandma on a vent is torture and she would never want to die that way, while the other 1/2 calls the ones who are in favor of allowing a natural death murderers. (Yes those words have actually been used) and it creates such strife and hurt within families. I have completed something called Five Wishes Aging With Dignity Five Wishes It goes into great detail about end of life issues in a loving way.

    I hope to have leave the world a bit better place for my having been here. I do worry about my children and grandchildren financially because I am sole support of my grandchildren, but I have to leave things as legally locked up as possible and then let go and understand that I raised smart children who even though they don't have my income capacity they will figure it out, even now they are trying to figure out alternatives if I lost my job, my insurance my benefits and it is allowing them to grow in ways I didn't anticipate. I might feel, I'm sure I would feel differently if they were all small. Okay, there I go with my totally innacuarte percption that I can control things.

    Ultimately life and death are all part of this amazing circle and each season has its strengths and lessons. I hope to live and die each one well.

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    I do not want to die. I am afraid of suffering and pain with death and I do have young children I would like to see live to adulthood. I want to have grandchildren. I want to outlive my mother and my grandmother.

    I think that WG reminds me that we are all broken. Even when you are whole you could be, potentially, at any time, broken, physically, mentally, spiritually. I think that it's good to be able to look into that abyss and and say, "I'm still here." It has been my horrendous misfortune, and great gift, to have this disease. Easy for me to say, and feel, because most of the time I feel pretty good except for my ankle. I think of all of the others who are broken out there that I don't even know about, like many don't know about me, and I try to be kinder, more patient, more empathetic. I wonder about the pain they are hiding.

    I have had a good life so far; I have no regrets. I have never once thought "why me?" with this disease. Why the hell not?

    Needing the doctors I do need, I am grateful that I have the insurance that I need and I live right outside of what I consider to be one of the greatest cities in the world. I remember right after 9-11, we all had signs that said I <heart> New York more than ever, and that's still how I feel. We were all so, so, close to death then...so much closer than I feel now.

    There have been times in my life when life went from one thing in an instant to another: "Your father' is dead" "I do" "It's a girl" "It's a boy" "The blood test is back and shows that you are positive for Wegeners" "You will need surgery to fix your windpipe -- you do not have even two months to wait." Everything goes quiet and all you can hear is the blood rushing through your veins. And even in that moment you know the news is not all bad or its not all good. It's just the first step into a new world. I hope that death is like that too.

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    Jack, you took the words from my mouth so I will not repeat them. My experience with death and feelings about it are so much like yours. I do not fear it, after all I am living on borrowed time. Before cyclophospamide prognosis was 3 to 8 months if lucky. So every day is a gift. I have no problem getting old and cranky , but definitely do not want to become a burden to my kids where I can't take care of myself. I have already told them that I welcome going to an old folks home, I will enjoy the company and activities and would much rather prefer being with people my age and having peace and quiet than being a pain in the donkey. I am too young to think about dying but if it comes quicker rather than later I am ready. I would like however to see my kids settle and would like to be able to play with grandkids. If that is written for me I will be even hapier if that is possible. I love my life, would not do anything different and enjoy everyday. My husband is very outdorsy active, hiking, backcountry skiing, mountaneering, paragliding, kayaking, rock climbing, scuba diving. He will enjoy his life style for as long as he can, while I can't do these activities anymore (no regrets there except for skiing and scuba diving) I live the aventures thru him and so I am happy here too.
    Wegs has given me a precious gift - I don't sweat the small stuff anymore, I don't get angry or disapointed and take events for what they are. I am a happy person and will die happy.
    Jolanta

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    Quote Originally Posted by JanW View Post
    I do not want to die. I am afraid of suffering and pain with death and I do have young children I would like to see live to adulthood. I want to have grandchildren. I want to outlive my mother and my grandmother.

    I think that WG reminds me that we are all broken. Even when you are whole you could be, potentially, at any time, broken, physically, mentally, spiritually. I think that it's good to be able to look into that abyss and and say, "I'm still here." It has been my horrendous misfortune, and great gift, to have this disease. Easy for me to say, and feel, because most of the time I feel pretty good except for my ankle. I think of all of the others who are broken out there that I don't even know about, like many don't know about me, and I try to be kinder, more patient, more empathetic. I wonder about the pain they are hiding.

    I have had a good life so far; I have no regrets. I have never once thought "why me?" with this disease. Why the hell not?

    Needing the doctors I do need, I am grateful that I have the insurance that I need and I live right outside of what I consider to be one of the greatest cities in the world. I remember right after 9-11, we all had signs that said I <heart> New York more than ever, and that's still how I feel. We were all so, so, close to death then...so much closer than I feel now.

    There have been times in my life when life went from one thing in an instant to another: "Your father' is dead" "I do" "It's a girl" "It's a boy" "The blood test is back and shows that you are positive for Wegeners" "You will need surgery to fix your windpipe -- you do not have even two months to wait." Everything goes quiet and all you can hear is the blood rushing through your veins. And even in that moment you know the news is not all bad or its not all good. It's just the first step into a new world. I hope that death is like that too.
    Wow, thanks for that, that was amazing to read, made me cry though. My husband has WG and we have a 1 year old daughter. I've been so devastated by this and frightened what the future holds in store. But I guess I should keep my chin up and thank god for each day as it comes.

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    Thank you lightwarrior and Jack.
    I am the primary caretaker for both my father (81, and dying of advanced Parkinson's disease) and principal advocate for my oldest daughter (24, Crohn's disease and Weg). I have struggled with being 'emotionally reactive' in previous dire situations, and have found acceptance and wisdom can be elusive when stressed with concern for someone you love. I practice finding wisdom daily, and work on small parts of myself at a time. This is life, no?

    So death is something to meet with acceptance and wisdom as well. I really appreciate lightwarrior's shared experiences through her work. A very timely message for me.

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    Beautifully stated, Palmyra.

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    Quote Originally Posted by Jack View Post
    I've been holding off from starting this thread because I was unsure of how comfortable members would be about discussing the subject. However, it would seem from the initial reaction that it is a topic many would like to contribute to or at least read and consider. It is inevitably going to include religious beliefs so if it is OK by Andrew, I'd like to wave the ban for this thread. It would be nice to think that we could consider another point of view without starting a flame war!

    Wegener's is a life threatening condition, we all know that. We have also probably considered the fact that if it has not killed us yet (true for most! ) then it may well shorten our life expectancy and quality of life. These things mean that coming to terms with death is something many of us have done, are working on or just trying to avoid thinking about. One way or another, the subject is more real to us than most even though it is a natural part of the life cycle that everyone must face at some time.

    My own experience of death has been through that of family and friends. I've seen my parent die very quickly and painlessly in old age, mother-in-law very slowly and in terrible condition and friends through brain hemorrhage and suicide. A real mixture that helps gain an understanding of how transient life is and the many ways it can end. I feel grateful to still be here after surviving Wegener's, but wonder what is in store for the future. I'm not getting any better and that's for sure!

    The moment of dying is not something I fear. I have come to terms with its inevitability and have no idea what it will bring. I have no religious beliefs to tell me the answers, but I'm sure that it will either be a great adventure or nothingness, so that would be OK too. The process of dying is something different and I fear a long drawn out deterioration similar to that my mother-in-law had to endure. I've made this known to everyone close to me so that if a decision has to be made on my behalf, they can let me go in peace and with a clear conscience. Withdrawing treatment, feeding and water is fine by me if there is no future that I would consider worthwhile.

    The problem with all the plans is that they exist in a future that I can not control. I expect that in the end, I will have to play with the cards that fate deals me as best I can. One thing for sure, I'll end up dead some day.




    And so will you.


    (Hope that went OK. I was not too sure what direction it was going in, but now the thread is live it will take on a direction of its own.)
    Okay, here is the original thread and post by Jack. If anyone wants to continue this discussion I think this is the place to do it. If I remember right the discussion did not get out of hand.

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