My Hunt-Dis Friends

Where to begin. I don't know where you all are but I hope that somehow this gets to you.
I miss you so much. I had no idea that there were a number of you who missed me. I remember posting quite a bit some years back when I was at risk and going through testing for HD. I felt like I belonged then. In my way I was a part...I was the at risk part. Everyone I met became like family to me. I cried, I prayed for and loved so many of you. And I know you did the same for me.

When I got my negative results it was like I didn't quite fit in the same. I was the free one. I was also still someone who's mom was battling the disease and who's siblings had yet to test.

I went through burn-out trying to pay off that debt of being negative. I was into every one's life but my own. My own life became enmeshed in others and the people near me felt neglected. My whole identify was changed by HD.

Backing off and seeking counseling helped so much. I never stopped caring. I just had to take care of me before I became completely impotent to be of any use to anyone else. That was difficult to do and I know some did not understand.

My marriage dissolved I became a full time single mom and worker. I also got healthy.

In the midst of this I never forgot my HD family. I was afraid if I jumped back in I would fall back into neglecting my family. My divorce did not occur because of HD or the community. It occurred because of an affair that he chose to have.

My mom passed away two years ago last January. I took it hard. I was there. It took me a year not to blame myself for her death. She pulled her feeding tube out yet again and this time because she had no quality of life left that we could see, we told them not to put it back in. But for a year the what if's kept coming. In my mind since her death I could see her lying there on her death bed. Did I cause this I would think?

Nothing could take the pain away. Not alcohol, not any form of distraction. After one year of this I was tired. I woke up one morning toward the beginning of 2007 and prayed. God I am so tired of this pain. I feel so bad. But it was like something was different. It was as if I could hear God saying that He was and is bigger than all my efforts or doctors or whatever. That He took her when He wanted and not before. That He could have kept her going without feeding tubes if he wanted. But He didn't. And He didn't want her to suffer anymore. And so He took her home and made her whole. I didn't do it. He allowed it out of love.

Once that really sunk in I stopped blaming myself. It still hurts but I feel much better. The Survivor guilt is minimal. I have spent 2007 healing and back to myself.

This disease takes a toll on everyone in some form or another. I wanted to be super woman but I am just human. Maybe that is why I have this blog. It's a place to just be me.

If I can in my own imperfections be of some encouragement to another than that is a God thing because I know in and of myself I fail.

It's okay to do that. I accept that in myself.

So what do I have to offer now? Well, I walked the road of being at risk. I walked the road of testing. I have been a spokesperson for HD through the media and on a local level. I have also learned my own humanity and shortcomings. I have lost someone I love to this disease and I still have three siblings and a niece and nephew at risk. So, it didn't leave me when I tested negative.

It is still here. And as always, I pray for a cure and will love with a love that can't be explained my fellow soldiers in this fight.

I am here. I am so not perfect. But I am here.

If you have read to this point....thanks. We all still need each other right?

This is from my heart to you.

Jva

PS. I remarried two years ago in July. I am so happy. It is a huge gift in my life.