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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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.


Posted in Family, Grief/ grieving, Huntington's Disease, Huntington's Disease blog, Loss, Self, The Huntington's Chronicles, Writing | Tagged , , , , , , , , , | Leave a comment

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.

Posted in Huntington's Disease, Huntington's Disease blog, The Huntington's Chronicles, Writing | Tagged , , , , | 4 Comments

Harder Than I Thought…

Writing this blog is harder than I thought. It’s one thing to upload the old posts that I wrote, as my Mom was dealing with Huntington’s and dying. It’s another to look at where that left me… us. My family. It’s not like it ended with her, but there’s been a lull and that quiet time is scary. After my grandmother died, we had this same lull… before my mother was diagnosed, and we knew she would suffer the same fate. That lull was different though, because we didn’t really get it yet. Frankly, we were still in denial. I was in denial. I accepted that the diagnosis was real; I’d done some research, but it still didnt’ seem real. This time, it’s all very real.

My grandmother had been far away from me as she began her painful decline. I was with her just two weeks before she died, unexpectedly of a heart attack, and there’s no pretending that her appearance and mental state was not disturbing. A woman who I had always looked up to, who had been a truly amazing woman in so many ways, was relegated to a wheelchair, barely able to speak so that we could understand, and a prisoner to her body. She refused to go outside or leave the nursing home, where she’d gone to recuperate from a broken hip, when I came to visit. This was not the grandmother I’d know. I ignored her wishes, and wheeled her outside. I talked her ear off. I tried to push away my rising panic and grief. Are you in there? I pleaded. Can you understand what I’m saying?  I wanted desperately to know that she was still there. She stared at me, with the bluest eyes you can imagine, and nodded. “Yes,” she got out. What’s it like being in there? I pushed. She stared at me for a moment, and I wondered again if she was tracking me. And then, she struggled to speak, but said very clearly: “Horrible. I hate it.” I held her, but I didn’t let her see me crying, as I wheeled her back.  I loaded her in my rental car and took her to my aunt and uncles for a lobster dinner, with my  grandfather, her son and daughter (my mom and uncle), her grand daughters (me and my cousins) and her three grand children (my kids). Lobster had always been her favorite, but I think that being seen that way, going out had become scary to her… too much to do. I took her against her will, her complaining as I did so. Complaining the entire drive to my aunt and uncles, on the lake. However, that night, she laughed and enjoyed her food and sat on the deck and grinned. She died two weeks later; that was her last lobster dinner, her last family dinner, the last time she went out anywhere.

I had said my goodbyes. I had said all the things I needed or wanted to say, while I was visiting. I knew that our time together was precious and limited, and I found myself pouring out my thank yous and gratitude, telling her all those things that we say we wish we had said. I said them.  I didn’t believe that would be our last visit, so the news was a hit to the gut. I remember falling to the floor and wailing. She was my other mother, often the more stable one. On the one hand: That the woman I’d grown up with could be gone, was unimaginable. However, that the frail, trapped woman I’d spend hours with, a few weeks before, was gone— was a blessing. For her. I felt empty and devastated, but I knew her suffering was over. Hard not to appreciate that part. And then the lull.

We weren’t talking about HD all the time. We weren’t keeping track of grandma’s condition, or what was next. We were all quiet for a while. Until my Mom decided to get tested. She was in her early 50s. She was still living in Florida, working, doing what she’d always done. She wasn’t a totally stable person, and there was lots of drama. But we had noticed more, at the time. She seemed a little less reliable, and she’d had a few unexplained falls. There was always an uneven sidewalk, a curb that she hadn’t seen, a high heel that got caught in turf… things that we could latch onto as well. But  I suspected. When she said she was getting tested, I knew what we wold hear. We’d gone out to dinner, and in the middle of the evening, she looked at me and her expression was utterly blank. Nothing there. If you haven’t lived with HD, or haven’t been close to it, you can’t really imagine those eyes. I’ve seen them several times now. Blank eyes, where once a mother, a grandmother, an aunt or  a sister lived. That night, I saw such a dark place where my mother’s blue eyes had been, that I excused myself to go outside and cry. I knew what was coming.

The lull didn’t last long. Mom decided she had to know; had to confirm what she’d long suspected. The diagnosis was an exclamation point on what we imagined we’d hear. I had turned 35 years old the day before (my mother chose not to call me on my birthday, with the news) and we were trying to have a fourth baby, after losing one in the second trimester.  I decided that day, that three kids were enough, and agreed with my husband’s pleas that I not get tested. “Let’s just live our lives, and see what happens,” he pleaded.

Posted in Family, Grief/ grieving, Huntington's Disease, Huntington's Disease blog, Loss, The Huntington's Chronicles, Writing | Tagged , , , , | 3 Comments

You’ve Got to Start Somewhere…

images-2How 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.

Posted in Family, Huntington's Disease, Huntington's Disease blog, The Huntington's Chronicles, Writing | Tagged , , , , , | 2 Comments

A Bonus, Love Story


I’m writing this for the Weekly Writing Challenge: Characters. Check it out and give it a try.

Her scent often announced her presence, long after she’d come and gone. Shalimar and cigarette smoked lingered in any room where she’d been, and I could smell it for hours after she’d visited. Other times, I’d hear her growl in our kitchen, as she held the wall phone crooked between neck and shoulder, clutching her coffee in one hand and her Marlboro in the other. She was the consummate multi-tasker, long before our generation coined a phrase for it.  Her voice, gravelly from years of smoking, left little doubt who was in charge. “Go out to the car and get me another pack of cigarettes,” she’d say, and I didn’t dare answer, “when I’m finished eating.”

Her “honey ash,” hair was always meticulously coiffed— each hair ratted and sprayed into place during…

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Posted in Family, Genetic Disorder, Huntington's Disease, Huntington's Disease blog, Mothers, The Huntington's Chronicles, Uncategorized, Writing | Tagged , , , , , | Leave a comment