Is it a wonder that I rarely write at this blog? I think about HD every single day, but I don’t want to think too hard. A friend recently sent me a note and told me she’d read Lisa Genova’s Inside The O’Briens, a fictional account of a family living with HD. She loved the book and found it so interesting… she couldn’t believe how horrible this was… she thought I might want to read it. I know she meant well; they all do–– they, being every single person who forwards the latest HD article, book, story, thinking that somehow I want more HD in my life. I don’t. I know people mean well. Hell, I read Inside The O’Briens on my own. I chose it. But, half way through (a quarter?), I realized it was just more self-punishment. I could have written a more realistic portrayal. It’s a good book. I suppose it hits the key nails on the head, for those who want a meaningful, informative read… but it’s much uglier. It’s much more insidious. Not taking anything away from Ms. Genova; I enjoy her writing, but it was a story she wrote. I live it. No bitterness or hard feelings, but a book is a a book. Those of us living it, know that it’s much harder.
I felt the same way when I went to see the devastating film Do You Really Want To Know? (You can watch the entire 1+ hr film with that link). It is a gut wrenching, incredibly real look at HD and it’s impact on families, regarding the decision to get tested. I felt like I was in it. After 10 minutes, I truly wanted to run out of the theater, my two friends sitting awkwardly, tried to be comforting. But I feel like I owe it to my mother, my sister, my aunt, my grandmother… the ones I love, who have HD, to read that book, watch that movie, bear witness. Guilt. I have to be grateful with each article, news story, item that people recommend… when I just want to escape, pretend it’s not real, forget about all of this. In those cliché movies where someone sells there soul to get something, this is the part where I sign the contract.
So, this is what Christmas felt like. I’m not making excuses or apologies for it not being more thoughtful, more grateful, more or less anything than what it is. This is what it was… unedited.
Watching my sister pause, step, pause; seeing her hands dance ever so briefly in the air, and her eyes focus, wander, focus… that inevitable HD dance, that I’ve seen before. Taking deep breaths to calm my own sense of panic, my own desire to retreat. Knowing that this may be one of the last years that we can really talk and connect… or maybe next year will be, or maybe it was last year? Grateful that we can be together, but desperately wanting to turn back the clock and shake fairy dust on the scene. I catch myself watching her beautiful daughter, my niece, and wishing I could spare her all of this, but I know that none of us will be spared. Guilt, guilt, guilt. Longing, longing, longer. Wishing, wishing, wishing. Love, love, love. LOVE.
There’s no rhyme or reason; there’s no silver lining. I know I must accept what is and not what I wish were true. I know I need to accept my sister where she is, and not where I want us to be. None of this is fair… to her, to me, to any of us. I feel so grateful that she found R and that he loves her and understands all of this. I’m grateful for his patience and compassion. And yet, when he asks her if she took her pill, or asks her if she’s done something she needs to do, and we all stop and listen, and we’re all watching her, but trying to pretend this is normal… I resent the spotlight HD shines on her. Fucking HD… always taking the spotlight––always sucking the oxygen from the room, the light from our day. Taking the people I love away from me; taking our opportunities to work through things we still carry; coloring my past, my present and my future. Guilt, guilt, guilt… who am I to say all of this? I was spared.