This is my journey through Huntington’s Disease. As such, I should start with the most basic detail: I do not have Huntington’s. I tested negative 14 years ago, after both my grandmother and mother tested positive. The journey I’ve been on since that day, the day I heard the incredible words: “You’re negative,” has been a twisty, turny, crazy ass ride— filled with moments of fear, joy, humility, horror, relief, confusion and more grief than I can bare some days. How can I not be grateful, when I dodged this lethal bullet? That, my friends is a tricky question. I am grateful that I will not get sick, that I will not die of HD. I am eternally grateful that my children have been spared ever having it. Those are big things. But, I will bear witness to the decline and suffering of countless people I love, three already. My younger sister is positive (making my niece a candidate) and we believe my brother is positive (adding 3 more nieces and nephews to the mix).
I hope to chronicle the paths I travel and share my story. It is my story alone. However, I have met other families who walk beside me, and I know that there are many places that our paths cross. I hope you will leave a comment, share your own story. I hope that what I have to say illuminates something for someone else out there who is facing HD, or living with someone they love who has HD.
Hard to say where this will go. Join me and see.