I Flinch

I’ve done a true disservice to this blog, to this topic, to readers, and to my own internal world, by avoiding writing about the realities of living with HD in our family. I started this blog to shine a light on a disease that has devastated our family, and so many others. I started it to find a space to share my struggle, as a family member who does not have Huntington’s Disease… as the “lucky one,” as so many people feel compelled to remind me. Lucky–– such a bitter word in my mouth, when it comes to the realities of HD. I started this blog to shine an unflinching light on so many aspects of this disease and the long, painful road families travels in living with HD.

But, I flinched.

I’ve flinched over and over and over again, allowing doubt and insecurity to hold me back. I’ve flinched every time I try to explain what HD is. I’ve flinched every time someone with good intentions tells me how sorry they are. I flinch every single time I see my sister and imagine what she is going through. I flinch, knowing I can do nothing. Nothing. I can listen, though she rarely wants to share. I can manage my own impatience when HD makes communications hard, or updates necessary. I flinch when those I love tell me that I am selfish for writing about this, or for “using” their suffering to promote my own needs…. Writing? Pity? Sympathy? I’m not sure where my needs come in here. I want to be honest and truthful in the things I write about HD, but I’m not sure that we can really understand each other, as each of us fights our own battles with this disease.

Is it fair for me to write about my observations and my feelings about how this is all going down? Is if fair to the other players in this infinitely unfair dance? I often struggle with where my needs, my rights, my actions intersect with those on the other side. For years, I watched my mother disappear–– picked and pecked to death by time and genetics. Before Mom, I watched my grandmother and my 49 year-old aunt picked and pecked as well. And aside from the quiet conversations between family members, the comparisons and measurements of change, there has never been a safe place to simply rage, and ache and hate and wish and bargain and deny and accept and grieve, and grieve, and grieve.

How can I do any of those things in the face of those I love who are actually living with those mutated genes. Who am I to complain or ache, hate, rage, bargain, or do any of those things when I am the lucky one? I see the looks, the quiet assumptions, that flicker across the faces of friends, family, strangers, when I try to explain what Huntington’s has done to our family. I’m so sorry… but enough already. You’ve said all of this, a million times. I see it. We’ve all got our problems.

So, where do I put it?

Each time I write this down, or try to write it down, I am surrounded by the ghosts of those I love and their own suffering. I’m shaken by the imbalance of suffering. To see my funny, smart, loving sister lose her balance, or struggle for a word, breaks my heart, even as I say a silent, grateful prayer that I have her… still. I stuff the rage and the ache and the pain and the wishes and the bargains, and I try so hard to just freeze her smile and hold on to it. I try to remember my mother before she lost the sparkle that others loved in her. I try to remember that my aunt was once my role model and (at only five years older) the one I’d have riding shot gun. We would bear witness to all of this together… until Huntington’s blindsided her and all of us, and took her in less than a year. I cling to the epic woman that my grandmother was–– the person I looked up to most of my life. I treasure all of the ways that I am like her, and try to forget her bruised, bandaged face and her confused mind, the last time I saw her. I focus on the blue, blue sparkle that not even HD could take from her eyes.

I follow my blogging friend Sarah’s journey, on her blog “Huntington’s Disease and Me” and I am ashamed and humbled. She puts it out there and gives us all an unflinching look at what this disease has done to her, and to those she loves. She rages, grieves, embraces the difficult realities, and celebrates those sweet times when HD doesn’t rob it all. Sometimes I can’t read her posts, for the same reason I can’t do the HD walks and challenges that my sister champions. I flinch, and just can’t do it. I write checks. I donate to research. But I’m a coward. I go to those walks (and I’ve only been to three) and I feel the air grow thin, and the planet squeeze me. I feel surrounded by all the things I have lost and all the things I will lose. I look around and all of those families and their struggles close in on me. I can’t do it.

I flinch at my own selfishness. Shouldn’t I just be able to walk–– on my strong, balanced legs–– beside those who will lose their ability to walk, or who are pushed in wheel chairs, but who are still reaching out. Can’t I show half that strength, and celebrate their will, their determination, and their unflinching ability to keep fighting? But my legs fail me, in those moments. They feel like a bitter taunt, walking easily beside those who can’t, and I resent my luck and good health.

Someone I love was very angry about a post I wrote for Christmas 2015. I got their anger. I could not deny their bitterness and the accusation that I am perhaps not entitled to put all of this down in words… when I am not living it daily. At the time, I was stricken by those accusations and hard words. But I also got that their grief is deep and protective. I flinched and I haven’t written much since.

And then I sat with that and came to this: I am entitled to every thing that runs through me, when it comes to Huntington’s. Yes, I flinch, and I am not living the daily struggle of managing a body with HD, or living with someone daily, who I love and who has HD. But I have a lifetime of loving each of those people. I have memories and precious moments that HD has stolen. I have the guilt of not keeping that monster at bay. While the memories and moments will always live in me, I will lose each and every one of those people who I built them with, and my children, my husband, my friends, and the people who question my writing… they will never get it. They weren’t there. They don’t know what my mother looked like jumping into a swimming pool, fully clothed, on a dare, before HD owned her. They can’t hear my baby sister’s soft breath, in the bed across from me, when I felt alone and scared. They were not at my grandmother’s card table, each Christmas, as she drank her “coffee” and I drank my cocoa, and we wrapped gifts… just the two of us, forever in those moments. They were not there when my aunt Pam skated across the local ice rink, and pulled me along with her, and made me promise to never tell that I’d seen her smoke a cigarette. She was too cool to deny, but we laughed many years later at how silly that promise was.

So, I flinch and I flinch some more, but I am going to try and write more and not let my fears, my doubts and my guilt hold me back. I am going to try and preserve what this journey is, what it looks like from the inside. I will try to flinch less and share my truths, while respecting the private details of those who are living this with me. I will avoid eggshells and comparisons. I will continue to flinch… because it hurts, but I will shake this thing to it’s core, and write about what Huntington’s has taken from us, and what we hold on to.



You can find other posts relating to doubt, on the Daily Post.

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Posted in Family, Genetic Disorder, Grief/ grieving, Huntington's Disease, Uncategorized, Writing | Tagged , , , , , , , | 22 Comments

The dawn of being understood

You can read my comment on this post, at the bottom, but suffice it to say: that spending a day with Sarah, on my recent trip to NC, was incredibly special and meaningful. We had so much to share, and I am so grateful that Sarah made the time for me. I hope you’ll check out more of Sarah’s posts, on her blog Huntington’s Disease and Me. She writes with candor and beauty, about such a difficult topic.

Huntington's Disease and Me

Tales from the Motherland  and The Huntingtons Chronicles  are two blogs written by the same woman, Dawn Quyle Landau, who hails from the northern-most region of Washington state. Her posts are frequently featured on the Huffington Post.

My friendship with Dawn was sparked when I read one of those posts, in which she mentioned the lack of viral success of any Huntington’s disease awareness campaign.

I wasn’t on the right meds at the time, and (instead of angry verbal outbursts) I was as likely as not to send a long rambling letter expressing my dissatisfaction about one thing or another. It is not a period in my life that I treasure, but I am glad that I wrote one of those letters to Dawn.

Being a pie thrower, I was quick to fill her in on the HD Pie in the Face Challenge and to ask how she could deny that…

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I am a huge fan of Sarah’s writing on Huntington’s Disease and Me. This piece really touched me, as it’s an issue that has caused conflict in my own family. Who suffers more: those with HD or those living beside someone with HD? There’s no right answer, folks! We all suffer, in our own way and our own hell. Sarah’s view is so painfully real here, though I imagine those who love her may see it differently. We all walk a hard road with HD.

Huntington's Disease and Me

In the film “Phenomenon,” John Travolta’s character was suddenly able to do amazing things with his brain. Turns out it was because he had brain cancer and (spoiler alert) he died. The end.

Yesterday I had a moment of clarity that reminded me of that film. I wasn’t doing math problems or anything like that. I realized, and as of yet I can’t un-realize, that I have already been seriously screwing with and screwing up the lives of people I love.

I had been projecting into the future my fears of what my family and friends would have to endure as the HD gnawed away at my brain. But the show started without my consent or knowledge. I realized that I’ve been participating in antics, complaints, neuroses, and paranoia. I’ve been demanding, unreasonable and impossible for years already, without even considering that this might be the case.

The people who care…

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Un-Edited Thoughts From Christmas Day, 2015


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.

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Three Steps Forward…

Sharing a post from my other blog, Tales From the Motherland. In the end, it’s all connected.



Words fail me… piles of words, stuck in my head. 

Writer’s Block is an over-simplified term for what I’m feeling about words right now.

“You haven’t written anything in ages,” my friend pointed out, at lunch. “You haven’t even done your Friday Fictioneers–“ she adds, watching me.

I wanted to cry. Again. I seem to do that a lot lately. Cry.

It’s been a really rough couple of months, on so many fronts. Three steps forward in my efforts to evolve, and five steps back– some days.

Generally, that means I have lots to write about. That’s what I do: write. I figure things out that way; I process; I move forward and through things that are challenging, by putting them down and sending them out. But this time, I’ve been paralyzed. I see the weekly photo prompt for Friday Fictioneers (the weekly flash fiction challenge, that I’ve…

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I know this road. I’ve been here before. Some of the twists, the turns, and the road signs are different, but I know where I am. Hell. This is hell, and I know that we’re not even at the worst part yet. Challenge on top challenge, and I’m already exhausted– raw and wounded. And we are walking on eggshells.

I will never be able to make it right. I don’t have Huntington’s; you do. As we have watched our grandmother, then our aunt and then our mother get sick and die, we have inevitably experienced it from very different places. There but for the grace of… a few genetic markers– go I, go my children. Do you know that this keeps me awake at night? Do you know that I cry–unsure whether I wish it had been me, or whether I can be grateful it wasn’t. Is there room for gratitude in this? Along with the anger, the sadness, the torment…

Strong women, all of the women in my family who have been taken and yet each having struggled with their own challenges in life, and then dealt the cruelest possible hand. Unbearable to watch, but that has been my role from the start. Watch, watch, watching– it’s unbearable, but there is no option but to bear. Bear witness. Bear up. Bear with it. Bear the unbearable.

But this twisted road is as horrible as I remember. Memories of having done this with mom flood back and paralyze me. Those early days when I constantly asked: What is Huntington’s and what is her? Is this alcohol or is this HD? Can we work on issues that have made things so hard through the years or does the Huntington’s block our way. I remember the surrender with Mom. So many years wishing I could finally make her hear me, make her understand what I feel, what I need. It all just evaporated, in the realization that she was no longer available– no longer up to the task. No longer accountable. Life ‘aint fair baby; that’s for damned sure!

Do you hate me for being well? Do you hate me for that genetic twist? If you could, would you switch places? Would I switch places with you, if I could make it all better.

But we can’t make it all better; there’s no going back. If we both had dodged this bullet, would things be different now or would we still be struggling to find common ground? Will you always find me bossy? Will you always think I’m judging you– even when I’m not? Do we even know each other? I don’t think so. As much as you hate me telling you what to do, “bossing you” around, judging you– you hold me there, assuming I will always be the big sister I once was, rather than the sister I want to be now. We are both stuck in our patterns, permanently held here now by this diagnosis and all it means.

But, I love you. I carry the guilt of not being able to stop this freight train of loss. I long to make it all go away; I can’t. I have failed you, in my own mind– no matter what I know the truth to be. I miss all that we have lost already and all that will still strangle us. No silver linings for us. Just a wild scary ride we can’t stop. Terrifying.

I am watching you leave me– watching you disappear, and still searching for you in the shadows. I find myself grabbing for any sign of solid ground. I dream of the past and we are all whole again, fighting the old fights instead of the twisted, poisoned fight we are left with. Now, we walk on eggshells… all of the time, feeling them crackle and crunch in our fractured world. Eggshells, everywhere.


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The Ice Bucket Challenge: After The Ice Melts

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Originally posted on TALES FROM THE MOTHERLAND:
Like so many people in the past few weeks, I recently did the ice-bucket challenge for ALS. I was challenged by a cousin, and I in turn challenged four people. Honestly, I was…

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