Originally Posted by
JanW
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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