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Thread: Your Thoughts on Dying.

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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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    Wow! This thread is prompting some really good writing and it all seems so positive. I think that considering death must just bring home how much life means to us rather than raising too many fears.

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    All suffering or illness is a great grace or gift from God whether we realize it or not.

    For myself I found it a little hard to realize that WG was a gift from The Lord Himself. I almost was on deaths door before being diagnosed with WG. I had fully accepted death and was prepared to die. I had seen a Priest during the day and He heard my Confession and in the evening I told my parents where my 2 life insurance policies were and other such matters to be taken care of once I passed away. But at the time I did not see suffering or illness as a gift from God while I was in the hospital starting treatment of Wegs. It took me a few weeks to come to terms with my new normal and soon realized this was a wake up call from God and a great grace as well.

    Getting back to Death:

    We know that 3 things are certain about death:

    1. Death is a punishment for sin. God said to Adam and Eve: "Of tree of knowledge of good and evil, thou shalt not eat. But in what day soever thou shalt eat of it, thou shalt die the death." (Genisis 2:17). After their sin, He solemnly pronounced the sentence: "In the sweat of thy face shalt thou eat bread till thou return to the earth, out of which thou wast taken; for dust thour art, and into dust thou shalt return." (Gen. 3:19). "Wherefore as by one man sin entered into this world, and by sin death; and so death passed upon all men, in whom all have sinned." (Rom. 5:12). "For the wages of sin is death." (Rom. 6:23).

    2. Death is the moment on which our enternity depends: For after death there is no more time for repentance or merit. "I must work the works of him that sent me, whilst it is day: the night cometh, when no man can work." (John 9:4)

    3.The time and circumstances of death is uncertain: "Be you then also ready: for at what hour you think not, the Son of man will come." (Luke 12:40)

    I could go on and on and write hundreds of pages about death. This would take me the better part of a few months I suspect and would have to post it in sections as there is a 5000 word or character limit on posts.

    Let us on the other hand rejoice in our suffering and be glad God has given us another chance and be thankful for it.

    And let us be thankful for one another and for Andrew who keeps this site going.

    I will again say that all of you on here have greatly improved my life. I learn something from all of you on this site every time I log on. You are all truely a gift from God to me.

    This is Divine Providence.

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    Some strongly held views expressed there. I hope that if other members disagree they will just let it pass.

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    I think this thread is great. I don't mind hearing other people's views that are different from mine, because we're not trying to convince each other of anything, just expressing where we are on this topic.

    I'm comfortable with death. In Buddhism the contemplation of death and impermanence is constant. To us, it's part of cyclic existence-- if there is birth, there is death. The time of death is considered to be a very potent time for a Buddhist practitioner. It's too long to explain why or what liberation is, but one can attain liberation at the time of death more easily than at any other time. So we actually look forward to the time of death, hoping we have practiced well enough to accomplish the Path.

    That doesn't mean we want to hasten death, though! We want very long lives to be able to purify our minds and to benefit others. I've had a number of times with Wegs that I've been on the brink of death. My only thought has been that I don't want to die because I have so much work to do on my mind. To Buddhists, the mindstream is the only thing that continues throughout all lives. Also, the longer we live, the more we can purify our negative karma and create positive karma for future lives.

    Wegs is a huge blessing because it's a constant reminder of impermanence. A symptom appears out of nowhere and disappears into nowhere. It's flaring, it's not flaring. I'm on a drug, I'm off a drug. Contemplating impermanence is considered the "king of meditations." Again, too long to explain why, but suffice it to say that the fact that Wegs keeps me in a constant state of flux makes it a perfect opportunity for practice. Of course, I don't celebrate that all the time. I'm sick of being sick. I often feel angry, despairing and afraid. But the part of me that stands back and observes thinks this is a pretty sweet deal.

    I'm reminded of something His Holiness the Dalai Lama said once in an interfaith conference. Someone asked him to compare the lives of Buddhist monks to Christian monks (eg Franciscan). He said "I think Christian monks work much harder because you only have one life. We Buddhists can afford to be a little lazy." I thought it was a wonderful, respectful comment. The Christian leaders did, too.

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