When I tested negative I was stunned and relieved. Relieved for my two boys who now would no longer have to worry about this hanging over their lives as I and my siblings did (and the three of them who remain at risk, still do). I was also numb. I have found that this reaction, this numbness is common amongst many of us regardless of our results. I am unsure if it is the answer itself that brings that numbness or the awareness that now we finally know that brings this on.
I would have expected myself to jump for joy if I tested negative. I know I imagined that I would feel that way when I thought about that moment over and over again in my head. Similarly I imagined times of being strong and courageous if it were a positive result that I was given. At different times I imagined different reactions within myself. I imagined it because it was my way of preparing for what I knew I would one day face - testing. That decision was already made, it was timing that was up in the air for me.
I am not too proud to say that I fell hard after getting my negative result. I felt such a debt. I joined our local chapter, I was very involved here online in many various HD communities. I had a family at home and friendships that needed attention but I was too busy giving my best to pay this debt that I owed. After all it is a worthy cause and I certainly can understand it better than an outsider right? YES! But at what cost?
I listened to other people share their pain and I could empathize. I had so many idea's and dreams that I visualized coming true within the HD community here where I live and at large. The energy and enthusiasm were there. I was writing and calling newspapers trying to get the word out about HD. I was willing to be used to tell my story if it would help because I knew that very few individuals who are at risk or have tested positive for HD would be comfortable risking their privacy and facing any potential discrimination if they went public.
