I was in this burning house! It was so hot and it burned my eyes and singed my skin. I wasn't alone. There were numerous others inside with me. I could hear their screams, see their fear and understand their terror. It was my terror too!
We tried to get out but just couldn't find the way. It seemed we tried for so long. Some voices grew silent while others in desperation tried to break free.
Some worked together hoping, praying, begging, crying, pleading. Some were alone choosing to fight by themselves seemingly oblivious to the others around them. We all wanted out. It was hot, it became difficult to breathe. We couldn't see our eyes felt the sting and the burn.
Something grabs a hold of me and pulls. It is now dark and cold. I stumble to the ground. I have been rescued. I am shocked. I cannot seem to shake this stunning change of events. I hear a voice in the crowd, "thank God you are free", thank God you are alive", you should shout for joy, dance, celebrate. I think to myself, perhaps I should but somehow I cannot.
I can hardly stand. I get to my feet and as I catch my first full breathe of air I begin to walk. Step by step I walk back toward the burning house. I want back in. I want to, I need to, I must try to bring the others out. I am almost to the blazing door, I am reaching, I'm here, I'm coming I yell.
Hands are pulling me back, away. They won't let me go. Arms surround me pulling me farther and farther away.
You don't understand I cry. I know those people, I was in that fire. I smelled the smoke, I felt the burn. I was there. I want to get them out but I can't. So I don't dance. I don't sing and I don't forget. With just a word it all comes back and I am there.So here I am and the house it still burns. It never stops burning and more people are inside, trapped. There is no hose, no water, no amount of effort that can stop it from burning. Until they come up with what will finally put that fire out I will always remember and I will always know what it's like and I will be in pain for those who remain.
That is what it is like to test negative for Huntington's Disease for me. Traumatic, indescribable and life changing. And all I dream about is someone handing me the hose so I can help put it out.
6 comments:
Wow! Words really escape me at the moment but I was wondering whether you minded if I put a link to this post on the HD Advocacy Centre's forum? I'm not too sure if you're already aware of the website (www.hdac.org) but through posts on the forum I hear about so many people who are going through the same things and have similar feelings. I thought reading your amazing post might provide a little comfort in knowing they are not the only ones who feel this way ...
Yes, you can link to this site. I do know about HDAC. The individuals who run that site are friends of mine. They do not as of yet know that I have created this site. I am kind of getting my feet wet with writing again. I am glad you could relate. I used this analogy at a HDSA Convention in Arlington around 2000 and it was well received and seemed to hit a note with many others. That is what it is about.
Thank you! I have included a link to the thread here in case you're interested in following it http://www.hdac.org/phorum/read.php?5,23135
Keeping wetting your feet, the writing is great :)
OMG, JVA.... you are a WONDERFUL writer and explain your emotions so precisely!! I LOVE this blog.. HEY, AL says HI.... lol... Love ya, Pat Dushkewich Wolf!
When I read this for the first time, my insides where in a turmoil and I felt as I was holding the hose but couldn't reach anybody to save them. Your words describe how I feel since I tested negative in 2001 after my precious mother was diagnosed with Huntingtons Disease. I lost my mother in 2001 and though I know I am free of this disease, I don't feel good inside. There is a fire in me and I struggle every day with survivor guilt.
bwjw,
I hope you get this. I understand how you feel. I dealt with survivor guilt for some time. Now and again it crops up. I lost my mom two years ago. There are five in my family at risk. If you would like to talk more please email me at Jvabean2@aol.com.
This can get better.
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