How strange to be starting a new blog, starting over. My other blog, Tales From the Motherland, has been up and running since June 2011. It has 500+ subscribers, and I send it out each week via all kinds of venues: twitter, Facebook, etc. I write it, put it up and readers come. It’s been a long time since I knew there would be no readers. This is different. I’m not sure what I want for this blog yet, I just know that it has been building inside me for about a year. The words that I think, the words that spin in my head, about Huntington’s Disease— about the costs, the impact, the losses, the sticky feelings that come with HD, all need a home. I need an outlet. But how to share it? Who is the reader? That is where I struggle.
I have had my moments with my other blog… there have been more than a few, when family and friend didn’t really get it. Family, in particular. This is not my journey alone. They are in the train, on the train, driving their own cars on the Huntington’s Train and what I share is not always what they would share. If I am honest, and I am, what I share I don’t always want them to read. It’s harder to express myself when I wonder who it might hurt, who it might startle. who might read it.
So, I started this by re-blogging all of the posts from my old blog, that pertain to Huntington’s in my family… mostly they are about my mother’s death, in December 2011. Starting there serves two purposes: 1) It gets me started. I paid for this site months ago, and have been sitting on it, unsure where to begin. Might as well begin with posts that fill in the background. Go back and read them. 2) It saves me telling the story all over again. I might do it anyway. I’m still grieving, and things replay in my head. It’s bound to happen; but, with these old posts, you can read how it was in the moment. Not how I reconstruct it. Not how I see it with my 20/20 glasses. Real time.
Re-blogging them, I was struck by how visceral it all was, as it happened. After years of living with Huntington’s it was startling how blindsided I felt by it all. My grandmother’s (70) death 15 years ago, my aunt’s (49) death four years ago did not prepare me for losing my mother. I didn’t watch their illness on such a daily basis. Their illnesses were not so close up and in my face. I didn’t even see my aunt sick. She was sure she’d dodged the bullet; as was I. I tested negative, fourteen years ago. My sister is positive, my brother— we suspect he is too. So, my aunt and I reassured each other, that we would have each other’s backs. We’d be the ones left behind, to bear witness. Only 5+ years older than me, we could be like sisters in the battle to survive and remember. But, she stumbled one day, then the next, and she was dead in barely 9 months. It was so fast, we’d barely seen it coming before it was gone. She left me alone to bear witness to her as well. And in her case, a lousy witness I am. I didn’t get it. I didn’t reach out the way I could have, should have, would have… if I’d known. My head was still in the sand. Not buried, but hiding.
And so, I am starting this blog as a place to put it out there. This is the chronicles of my Huntington’s journey.