Saturday, August 7, 2010



I am trying to figure out why I am so incredibly worked up about the situation and I think that, for me, it comes down to the following.

When I was tested for CJD and the genetic markers for it I knew that the test results would change our lives forever if they came back positive. What I did NOT realize at the time, though, is that even a negative result is life-changing. The guilt that follows is incredible and is something that family members carry around daily and wrestle with for years, if not forever.

There is also that Second Chance feeling that occurs, as if the surviving sibling feels like they have an extraordinary obligation to fulfill some Higher Calling, to right the wrongs of the world. I wear no cape and claim no superhuman abilities, but I do feel the overwhelming obligation to make the world right. When I see injustice I cannot stand idly by. It seems physically impossible. It doesn’t even feel like a choice to me. Some may say it is a calling since it is something I have done since childhood, but the intense PUSH to ensure that those who cannot speak for themselves find a voice through me is no longer optional.

Tonight I remembered that day, two years ago, when I got the call from the Dr and heard my test results. I remember thinking that there was nothing that he could say that would make me happy. How could I be happy when I get life and he got death in the Great Cosmic Lottery? Either way it’s a punch in the gut. I cried when he told me. It was The Great Way I Failed Him for the third time. A good sister wouldn’t have let him die in the first place and if she couldn’t have stopped it then she would have at least went with him. As a consolation prize she could have, at the very least, had the disease, too. How could I possibly feel GOOD about that?

I’ll live the rest of my life trying to make it up to him.

Tuesday, June 15, 2010

I never

I never even considered the idea of living the rest of my life without you. I just never thought it would happen. I thought we would all sit around in our rocking chairs, watching our grandkids playing, talking about the 'good old days'.

It seems like my good days are few and far between since you died.

I miss you. I don't want to live the rest of my life without you, but I don't want to die right now, either which leaves me with no choice but to be here.......still without you.

I still miss you.

Monday, January 11, 2010

two years

I can't believe that it's been two years since you died. Last year I sat and watched the clock at 3am and drank wine and wrote. I think of it as "The Annual Ritual", but really I've only done this for two years now, last year and this one because exactly TWO years ago I was holding your hand while you died. I held onto you until your hand turned cold. I didn't want to let go and I'm sorry that I ever did.