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

This gallery contains 3 photos.

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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Knowing You’re Gonna Crash…

Huntinton's gene

Huntinton’s gene

When I started this blog, I thought I’d be posting all the time. Because, Huntington’s is on my mind– All. The. Time. However, it’s been the opposite. I seem to avoid these pages for that very reason. I can hardly bear to express the thoughts that come to me, day in and day out, about this horrible disease. It’s so hard to put in writing, all the things that play out in my head. All. The. Time.

My sister’s HD is clearly getting worse, and impacting other areas of her life. That in turn impacts all of us; it impacts me. We had a real scare with her this past weekend, the details of which I will leave out, for her privacy. However, it was awful– absolutely horrible. And as I sat with my husband, Smart Guy, playing out all the possible things that might happen, the thing that hit me square in the face, and left me reeling all over again, was the horrific reality that she has Huntington’s Disease, that her illness is active and symptomatic… and I know  too well where this ride ends.

I’ve always had a love-hate relationship with roller coasters. I ride them because my friends, or my kids sucker me into it. I love Space Mountain, at Disney. I occasionally get on a roller coaster, and after my initial fear, enjoy the thrill. But, the part I have never enjoyed, the part that truly terrifies me, is that moment when you are going up, up, up– slowly, clack, clack, clack.  At that peak the car usually pauses; and for that millisecond I can see everything around me– the view from the top is always so beautiful! But just as I take in that view, and want to linger, the car drops. My stomach drops; my inner organs fly against their cavity; my brain seizes, and I scream. That is where I’ve been living with sister’s diagnosis for several years now: poised at the top, able to see all that will come, but able to still enjoy the positive moments together and the fun we can still sometimes enjoy, yet knowing it will all drop… any minute. Sitting in a restaurant this past Saturday, worrying about my sister, trying to talk rationally with my husband about it, I felt exactly like I do on a roller coaster. I felt like I was dropping, and everything was flying at me… and I couldn’t scream.  I had to hold it together, and make-believe it was ok.

It’s not. It’s not ok. Nothing about any of a life with Huntington’s Disease is ok, in my book. My sister is able to attend HD walks and conferences; she has made friends with others who have HD; she throws herself into the whole scene. I can’t. It’s enough for me to face my own family’s struggle, my own family’s loss, my own family’s grief. It’s enough to choke on. Bearing witness to others’ suffering is an additional step, which I struggle with. I go to an HD event with good intentions, and leave feeling overwhelmed and lost. All those faces of HD; all those families facing this awful death sentence; it’s too much for me to handle. Even typing that, I feel such guilt. Who am I to say it’s too much to handle, when I only have to handle the witnessing?

Sitting at dinner this weekend, faced with the reality (a reality that continues to ambush me, over and over again) of my sister’s future, I was completely overwhelmed with grief. I looked around the restaurant, recognizing several diners, and I wanted to be sick. I wanted to hide. I felt totally naked and vulnerable, in front of everyone.  I knew that my eyes were wide and terrified, as the reality hit me again, and worrying about my sister. Tears kept pushing to the surface, even as I tried to discreetly wipe them away, and push terrible thoughts out of my head. It was nearly impossible. As the realization that I am headed down the same horrible path that I’ve already traveled with three other women sucker punched me once again, I felt myself flying down that roller coaster hill all over again.  I panic. How can I bear this loss again? Frankly, it’s unimaginable. I know I will have to do it, but it’s so hard to conceive of facing this loss yet again. My grandmother (75), my aunt (49), my mother (68), and now my sister. She is currently 45; how long do we have left together? We’ve already begun losing each other.

Alcoholism is the icing on this poisoned cake. It’s prevalent amongst HD sufferers. In my family, three out of four of the people I have loved and have lost or am losing to HD were/are alcoholics.  Cherry on the icing: suicide is the leading cause of death. Is it any wonder? Anyone who would stand in judgement of those facts, hasn’t seen HD up close… and personal. It is personal. It takes away so much, and leaves so little to hang on to. So, is it any wonder that people with the disease want to numb that reality? Is it anything less than predictable that drinking might become a crutch?  However, that adds a whole other layer of pain to this equation. While I can’t blame my sister or my aunt and mother for wanting to numb the reality of what they face(d); alcoholism only adds to the enormity of this loss. I feel guilty when I am angry, knowing that I am spared living that experience– but I resent losing them twice. Losing them to the disease and to the alcohol. I feel so angry.


How much time do we have left together, and what will that time look like? Those questions run through my head on any given day.  I’m fighting two impossible opponents, to hold onto whatever I have left with my sister. The battle is exhausting. It leaves my emotions tied in endless knots, and discarded on the side.  Who do I call? Who do I confide in? My family is broken and fragile, in the shadow of this disease. Discussions are booby-trapped with fear, grief, denial, addiction, fragile hope, recriminations, guilt, blame– on all sides. One false move and things can fall to pieces. How can I be angry with your drinking, when you have so much to face? How can you forgive me for not really getting it? How can you forgive me for not having HD?  How can I expect you to understand how I feel, having dodged that bullet?

I will never feel fully thankful that I am (physically) safe from HD, given the cost. We all tiptoe around the field, afraid to blow each other up.  On days like this past Saturday, this battle– all of it,  feels so hopeless.

Hit the Mute button.  Check out this ride on a roller coaster.  BUT, imagine knowing that the car was going to crash. Eventually.


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For This (and a few other things) I Will Surely Go To Hell…

There are countless stories in the chronicles of my family’s journey with Huntington’s Disease. Sitting and writing them is so much harder than I anticipated. This is stolen from my other blog: Tales From the Motherland. Please leave a comment; I’d love to hear what you’re thinking.


Who knows what brings someone to confess. There are stories ripe with tales of death-bed confessions, but this is not that. There are people who confess to seek forgiveness. In my case, that’s not going to happen; it’s too late. Catholics choose to confess all the time; I am not a Catholic. This is purely a confession for the sake of coming clean. It’s time to tell this tale and let it go. It’s the classic tale of how a lie takes on a life of its own, and you find yourself in a deep pit, willing to do crazy things to cover your tracks. For the sake of full disclosure, my mother is the only one who could have freed my conscience, and I didn’t have the courage to tell her this story, while she was alive. If she’s watching, she won’t be happy.

This story starts with a…

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Friday Fictioneers: Remember Me

It’s Friday Fictioneers— my weekly dose of flash fiction, from a photo prompt. Rochelle Wisoff-Fields brings us together, with photo prompts from various sources. The challenge is to write a story with a beginning, middle and end, and only 100 words.  Check out other stories on Rochelle’s page, here.  My story is 99 words.

Image: Sandra Cooke
Image: Sandra Cooke

“I want to do it on my own, James.” Geraldine’s voice hinted at a whine, she hated to hear. She cleared her voice and continued. “I’ve waited thirty years to explore these ruins again; I refuse to let my… illness, keep me from it.”

“Darling, Huntington’s can’t keep you from that— There’s a railing; please use it.”

“More cold medal, another reminder that I can’t walk on my own anymore.” She paused, afraid she’d cry.  “I want to walk, and remember how sweet it was, the day I met you here.”

“Then take my hand, love. Take my hand.

As soon as I saw the photo this week, the railing jumped out at me. It struck me as jarring to see ancient ruins with the dark line of the rail, running through the view. And then I began to think about the people who rely on that rail. The story was right there.

This post is dedicated to my mother, my aunt, and my grandmother, who all lived with Huntington’s Disease (learn more here), and remained fiercely independent to the end. It’s dedicated to my sister who fights HD, and holds her husband’s hand, because she loves to. It’s a reminder that we don’t need to go it alone.

As always, I appreciate your feedback: positive or constructive, and welcome any comments.

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