Un-Edited Thoughts From Christmas Day, 2015

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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.

About Dawn Quyle Landau

Mother, Writer, treasure hunter, aging red head, and sushi lover. This is my view on life, "Straight up, with a twist––" because life is too short to be subtle! Featured blogger for Huffington Post, and followed on Twitter by LeBron James– for reasons beyond my comprehension.
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5 Responses to Un-Edited Thoughts From Christmas Day, 2015

  1. the HD queen says:

    thank you so much for writing this. my mum has HD and i found out two years ago that i also have the gene. i’ve just started “reaching out” and trying to find people going through the same kind of scenario but i’m yet to decide if it’s a good idea or not. like you say, it’s all very well when people send you articles/clips/blogs where people talk about what they’re going through so that you find people you can relate to – but it also just makes it more present and harder to ignore. and i think we need to have that time where we can just be without it entering into every single thought.
    occasions are always a tough time – i find birthdays worse because while it’s another year gone, it can feel like another year closer to developing symptoms or symptoms getting worse. but i’m also just thankful for still having time with my mum, despite the shitty circumstances and i also think how much joy it brings to her life (when her quality of life has deteriorated so much) and it makes it all worth it.

    • Thank you SO much for taking the time to read my piece and share your own personal experience. It isn’t always easy to share; we make ourselves so vulnerable. I also deal with the guilt of not having it, and feeling like it’s not my story to tell. This piece caused some distinct issues with some of my family members… but it’s my story too, and I try to share it without hurting others. Again, it isn’t easy!

      I’m so sorry that you are positive; I understand that horrible back and forth of measuring each possible cue and symptom. It is good to let it go, whenever you can, and to try not to let it own you.

      All of my sincere best wishes to you and your family, as you navigate this terrible disease. Thanks again for reading and reaching out; it means so much.

  2. I don’t understand what you are going through, or what your family goes through everyday but I do understand how important it can be to share difficult emotions and that writing can be more powerful than talking. I read your recent post first, then came here. Maybe flinching isn’t what you’ve been doing? Maybe you write when you need to, and there doesn’t need to be a timetable?

    Warmest regards to you, Dawn.

    Kate

    • We all have our own struggles, Kate. I know you get it on many levels. Writing about this, on this other blog, is a constant balancing act. I have things I want/need to say, but I also need to be respectful of other family members who may feel very differently about the same details. Thanks so much for your supportive feedback and thoughts. The best to you as well, Kate.

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