Sometimes the best gift is staying away

Sara writes with such beautiful, poignant honesty. This may be my favorite piece of hers, but I’ve said that before. There are so many I love, as I admire her so much as well. This reminds me that those I love may feel very much the same sometimes… and I can do better to let them know I am not judging, just loving. When it come to HD, as with so many things in life, we all do our best, and (I believe) rarely mean to hurt each other. But we do. So, we say sorry; we say I love you; we try to do better tomorrow. Sarah says it so much better than I could.

Huntington's Disease and Me

When you want to celebrate achievements of another and you love parties and people, it is gutting to learn that your presence at such events is a source of stress for your loved one instead of a celebration of a shared life experience.

When the potential for happiness is overshadowed by fear of what I may say and what I may do, it makes me feel inhuman and unloved.

When I haven’t even said or done anything wrong but need to be tucked away to preserve future relationships with more important people, I feel like I must hide in the asylum. I was invited by another party goer and gave my loved one the gift of “no”.

I will hide in the opera house for you if it makes your happiness complete and your transition smoother. Just realize please that I don’t belong there. I don’t want to be hidden…

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Truth Roars Like A Lion

*This is simultaneously posted here and on my other blog, Tales From the Motherland.

(Baby steps, friends. Exactly 2 months ago today, I wrote my first new blog post in ages. Then I recoiled. This started as a draft… nine months ago. Baby steps.)

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Huntington’s has robbed me of so much, but the hardest thing it’s stolen is truth. Losing my grandmother (70), my mother (68), and my aunt Pam (at only 49) were visceral losses–– concrete in their finality. Now, watching my younger sister struggle with it, keeps that loss perpetually in front of me. But before these three powerful women in my life died–– before they disappeared in bits and pieces, we lost clarity and truth. We lost the potential for healing through honesty.

As children we speak honestly, with truth, unless we are scared or silenced. As a very young child, I knew truth. I knew sweetness, and the security of people who held me close and loved me deeply. For a short time, when I was young I felt cherished. I trusted the adults in my life; I felt safe and loved. And then so much changed, and I lost all of that–– lost to lies and trauma. Huntington’s further cheated me of the chance to heal that, by robbing me of the chance later for honest exploration and putting some pieces back in place.

Several months ago we saw the movie Lion, a 2017 Oscar nomination for Best Film. (I will not give anything away here, as this is a film really worth seeing.) I went into the theater thinking I was prepared; I thought I knew the story. As a huge movie fan, I go for many reasons, but often it is about escape. This looked like a great movie to get lost in. Lion was just stunning! Stunning. Everything about this film moved me. It was visually gorgeous. The story is heartbreakingly beautiful, and I was swept away on so many levels, for two hours. But I also left the theater completely shaken, and thrust into many nights of hard dreams.

In Lion, Saroo Brierley (the main character) faces memories he’s pushed down, through recurring flashbacks, which eventually lead him to the truth. For all of my life, I have experienced nearly daily pieces of memories–– flashes to moments, scenes, images, experiences–– many of which didn’t fit with the stories my mother told me. The math never added up, and I’ve struggled to make sense of it all. Like Saroo, it took a triggering event to send me on a similar journey to find the missing pieces. Saroo then goes on a journey to find the truth. I’ve been seeking the same thing for most of my life, but the journey changed directions two years ago. The movie Lion crystalized so many details that I’ve been grappling with since spring 2015.

Before Huntington’s robbed my mother of the chance to live out her days and find honesty, or let me unbury truth, she was already a broken woman. She was broken as a girl, and she never healed. Instead, Huntington’s dealt her one final blow, and robbed her of the chance to ever really heal. When she was diagnosed, in her fifties (as I am now) she was already deeply lost in dysfunction and lies. She deserved better, and I wish she could have learned that in her life. No child deserves to have their childhood stolen, for that I have enormous compassion for my mother.

But, she in turn stole my childhood. She robbed me of safety; she took me from the arms of sweetness and love, and took it all away. She lied to us, and led my brother and me to believe our father didn’t love us… enough. She abandoned us, literally (for 18 months) and metaphorically, just as she’d been abandoned by her mother. She was not there for me when I needed protection, so buried in her own history that she missed the one unfolding for her children. She did to us, exactly what she herself had spent a childhood and lifetime trying to recover from. At 54, I still struggle with the cruel irony of it all.

I’ve spent most of my life trying to understand my mother. I wanted to heal her and protect her, when I was a young child and should have gotten those things from her. I tried to forgive her, as the years went on and I watched her slowly die, though she never really heard my pain. Without knowing any better, I emotionally buried truth to preserve a false reality that she pressed on us. As children, we deal with trauma in the only ways we know how to. We push it down; we hide it; we create stories to help us feel safe. As adults, we either stay stuck in those patterns, or seek to move beyond them.

I’ve spent most of my life trying to move on. I’ve looked for the truth, to fill in gaps that have haunted me. I struggle with the knowledge that my fractured past, and broken pieces, have in turn impacted my own three children. I went into marriage and parenting knowing that I wanted to be a very different mother than my mother was to me. I wanted to break cycles of abuse and neglect that have been a part of my family history. But I didn’t have the tools or knowledge needed. My kids are grown now, and I have discussed much of this with them. It’s not easy; I don’t want to burden them with old pain, but I want them to know their mother as a fully fleshed person. I want them to see that I keep moving forward; I keep trying to change, grow and heal. If we don’t heal from trauma, I know we are bound to pass it on.

Sadly, many of the people who might have answered questions for me are gone. I’ve asked myself over and over: does it matter? Does the truth matter anymore? It all happened so long ago, and I am where I am. I struggle with how to let go of all the lies and simply embrace the truths I’ve learned. The truth has allowed my brother and I to finally begin to heal. I now know that he’s spent an entire lifetime feeling lost to the same lies I buried. Now that we can talk about them, and untangle all the knots, we realize that we were simply children, doing the best we could… albeit very differently, and without realizing we could have helped each other.

As I watched the final scenes of Lion, my response was visceral. I was no longer watching a movie, where a young man unwinds his own knots, but reliving my own fears and loss. I found myself talking to myself, reliving painful times that happened forty-four years ago. I cried and cried, and cried some more. Later, my husband told me that watching this same movie scene was the first time he really felt like he could understand what I’ve described for our entire life together.

I wish I’d heard the truth when my mother was still alive; I would give anything to ask her some questions that follow me everywhere. I wish she could have seen this same movie, and maybe realized what her lies have done to my brother and I; we all might have found some healing sooner. I wish she and I could have explored those truths, and maybe both healed… if wishing made it so. Instead, she took her pain with her, and I am pulling apart knots, and seeking peace. A movie reminded me that healing is always possible. I am a…

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GIPYPlease share your thoughts in the comments. I want to hear what you have to say.

©2011-2017  All content and images on this site are copyrighted to Dawn Quyle Landau and Tales From the Motherland, unless specifically noted otherwise. If you want to share my work, I’m grateful, but please give proper credit and Link back to my work; plagiarism sucks!

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In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

I don’t post on this blog enough; anyone who follows here, knows that. As I’ve noted in the past, fear keeps me away. If I hide my eyes, maybe it will go away? It, being Huntington’s Disease.

Anyone living with Huntington’s Disease knows that’s not true. HD follows us, and messes with us, inspires and drives us. If you have Huntington’s in your family, you know there is no hiding! This month, I want to honor my sister and my dear friend Sarah Parker Foster. Check out Sarah’s blog Huntington’s Disease And Me. She writes with visceral honesty and shares her journey with us all. In the past few weeks she has suffered an unbearable setback, and I am sending my love and support her way! Check out her work and add your love.

My family was blindsided by HD. My grandmother was a powerhouse and true icon in the world of Massachusetts’ realtors, for more than two decades. She was named top realtor in the state of Massachusetts, for the top real estate company in the state, for sixteen years! This, at a time when women were still making their way into this area of business. I grew up enormously proud of her, and hugely impacted by her. She helped raise me, and was the solid person in my life. She taught me to shake hands firmly, to make a mean pumpkin chiffon pie, and to be kind to others. I think we all both adored and feared her… she was a huge presence in our family and the community.

When she started tripping, while showing houses; walking strangely; forgetting things she’d always remembered, and a myriad of other strange changes, everyone assumed she’d developed a drinking problem. Family and friends urged me to look for drugs and alcohol, they all believed she was hiding, when I spent summers living with her, during college. I found nothing, and she grew worse.

When my grandmother was finally diagnosed with Huntington’s, our entire family went into denial. We didn’t know what it was. We were overwhelmed with the idea that anyone or anything could impact my grandmother in such a way, and none of us believed it would impact us too. We were an entire family of ostriches–– even after the hard reality of watching Grandma sink into herself, and eventually die of HD. We stayed paralyzed as my mother was diagnosed, but took more notice. By the time my forty-nine year old aunt died (my mother’s younger sister), after only a short nine months with rapid symptoms, we all were terrified. My mother’s illness was prolonged and horrible to watch. My younger sister is living with HD.

A few months ago Therese Crutcher-Marin read one of my posts here on the Huntington’s Chronicles, and contacted me. She has written a powerful new book, Watching Their Dance: Three Sisters, A Genetic Disease, and Marrying Into a Family At Risk For Huntington’s (buy here). The book looks at her husband’s family history with HD. It begins before there was testing–– when love was a leap of faith, and brings us to the present. Anyone dealing with this horrific disease may benefit from reading her book.

Therese Crutcher-Marin went into her marriage knowing that HD was a risk. In fact, she ran toward it, for love. At a time when there were no tests for HD, she embraced the man she loved and hoped for the best. Her new book looks at that decision, and it’s enormous impact.

I wanted to know more, and Therese agreed to be interviewed, for Huntington’s Disease Awareness Month. We both wanted to have this interview come out much earlier in May, to honor and bring awareness to the illness, but two busy schedules made that difficult. In the end, we both agreed that for those of us living with Huntington’s, EVERY month is Huntington’s Disease Awareness month! Purple and blue are the colors for HD. Wear them for someone you love, who is fighting this devastating disease.

Tell us how you first learned about Huntington’s Disease.

In 1978, John Marin, my college sweetheart, and I were graduating from college and planned to be married. His three older sisters, Lora, Marcia and Cindy, who had become my close friends, couldn’t explain to me why their mother had been in Napa State Hospital for 20 years. They asked their father but he would not tell them. The sisters contacted an aunt on their mother’s side of the family, whom they hadn’t seen in years, and on November 3, 1978, the Marin secret was revealed to us. Phyllis, their mother, had Huntington’s disease

Did your husband have a history of HD in his family, prior to that?

Their mother’s side of the family had a history of HD but their father knew nothing about it when he married Phyllis.

How did you and your husband’s family deal with this news, initially?

The Marin siblings grew up with a lot of uncertainty in their lives: a father who was absent, uncaring, and abusive, so the news was just another uncertainty in their life. I remember the day the sisters told us about Huntington’s, and how it was not a big deal to them. I struggled with the thought of John having the disease and questioned whether I was strong and brave enough to live a life at risk with him. I ended our relationship because of it. After having an epiphany, I found my way back to John recognizing the possible consequences of my decision. In my heart I realized if John did become ill or his sisters, “you take care of the ones you love”. Through the years, the Marin siblings never wanted to talk about their at risk status, which was difficult for me, but that’s how they coped, dealing with things only when it became an issue.

Do you have children? How did you deal with this threat?

John and I have two children, Keith and Vanessa. We married in 1980 when there was no test to determine John’s gene status so we chose to take a chance and have children. We hoped and prayed John didn’t inherit the mutated gene but if he did, we believed there could be a therapy or cure for our children by the time they reached the age to show symptoms.

I can totally relate to that! I think most HD families can. So many of us went into this, thinking there would be a cure, before it ever impacted us. How did you tell your children?

Since we cared for John’s sisters, our children watched their aunts through the disease process. When we felt they were old enough to understand, we talked with them about John’s at risk status and how HD could possibly affect their lives.

Have you always been a writer? What were your reasons for writing the book?

I was the marketing/outreach manager for a hospice program in my community and wrote newspaper articles, quarterly newsletters, business plans and enjoyed interviewing patients and sharing their stories. When I retired, I pursued my writing interest and joined two writing clubs, participated in writing seminars/classes and joined a program, Path to Publishing, through a local bookstore.

The initial reasons I began writing my story was to heal and to honor my three dear friends and sisters-in-laws. After the last sister died in 2009, I began to develop my story. Over the next couple of years, I decided the book could be used as a marketing tool to heighten awareness and help in the fight against Huntington’s disease. At that time, I began developing my own social media outreach campaign to connect with the HD community. After working with an editor for two years, and the completion of the book was near, John and I decided to donate 100% of the proceeds from the book to Huntington’s Disease Society of America (HDSA).

Bravo to you! We need more, meaningful stories out there, addressing Huntington’s. What is the theme of your book? 

The major theme of my memoir is mindfulness; focusing on the present moment. Being present in the moment/day calmed my fears and worries about the future. Hope is also a theme as that is what John, myself and the sisters clung to and gave us strength to not give up. Unconditional love is another theme, one that is closely related to forgiveness. Over time, I learned to assimilate these concepts into my daily life, which allowed me to live my life fully with John, his sisters and my children.

How did you write an inspiration story of hope from such a tragedy?

My story is inspirational because of the four inspirational people I kept in my life. Through the love, kindness and friendship Lora, Marcia and Cindy bestowed upon me, I was compelled to share my story. Before the Marin siblings even knew about Huntington’s disease, the sisters were an inspiration because of their positive attitude, ability to forgive, and kind behavior. They were my dear friends who loved me unconditionally and I was closer to them than I was to my own three sisters. As I journeyed through the disease process with each of them, they continued to inspire me through their strength, tenacity and never lost hope. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

Who was affected with HD in your husband’s family?

Huntington’s disease has devastated John’s family for five generations. His maternal grandfather had HD and four of his six children inherited the disease. John’s three sisters were affected and fortunately had no children. John tested negative last year at age 61, which means our children are not at risk. The disease will never harm another Marin.

What is the current statuses of your husband’s family members?

Unfortunately, Lora, Marcia and Cindy have passed away. Lora died in 1989 at age 41, Marcia in 1999 at 49 and Cindy in 2008 at 54. Lora committed suicide, and Marcia and Cindy fought the disease for fourteen and seventeen years respectively.

As I’ve shared with you, I work for Hospice too. It isn’t always easy, and there can be a lot of “triggers.” With your sisters-in-law dying from HD, why did you choose to work in hospice? Wasn’t it depressing?

In 1988, I changed careers, received a Masters In Healthcare Administration and entered the healthcare industry because I knew I would be caring for at least two of the Marin siblings and I wanted first hand knowledge. I spent the last ten years of my career in hospice. To the contrary, I found hospice work encouraging, gratifying and I felt honored to support a family through the loss of a loved one. I believe I was lead into hospice work to keep me mindful of all the good things I had in my life.

How do you manage your own anxiety about the illness?

The Marin siblings were extremely close and each sister-in-law lived with us during difficult times in their lives. During stressful years, I saw a counselor and sharing my struggles was very helpful. John and I have always had a special relationship and love each other deeply because something like HD can tear you apart of create a bond so strong nothing can destroy it. So, John was my anchor and we drew strength from each other especially during difficult times. Early on in our marriage we decided to do the things we wanted to do, when we had the money, and not wait because we didn’t know what our future looked like. When the kids arrived, we continued our adventures with the goal to make as many wonderful memoirs as we could with them.

Are you involved with the HD community outside your family?

For over 25 years, John and I were helping/caring for one of my sisters-in-law while we worked fulltime and were raising two children so my time was limited. I became involved in the HD community three years ago and I joined the HDSA Northern California Chapter Board of Directors last January. I’m in line to become Chapter President in 2019.

What are some of the ways you and your husband address his HD risk? What coping strategies can you share?  

I began writing the story to show the world what it is like to live at risk for a genetic disease. I share how my life was filled with unpredictability, tough choices, and pain, and yet full of love, good times and great happiness. I came to realize that the path I willingly chose, opened my heart to love more deeply; that acknowledging my world could change overnight made my life richer. To find out how we coped for 38 years, living at risk for HD, you’ll have to read my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Could someone with cancer, going through a divorce, or losing a loved one find inspiration from your book?

We all have challenges to overcome in our lives and they come in many forms; a serious medical condition, a divorce, an autistic child, financial devastation, a difficult teenager, death of a parent/child/spouse or living at risk for a genetic disease like Huntington’s disease.  Watching Their Dance is a story of a young woman who learns to live with unimaginable uncertainty by making changes in her life so she could live happily and as fully as possible with the man she loves.  By readingWatching Their Dance a reader will be: inspired, filled with hope, learn about mindfulness, and be empowered to make changes in their life.

Therese, thanks so much for taking the time to share your story with me and readers. I know it will inspire others! 

I’m grateful for the chance to share the book, and chat with you. Thanks for making space here. 

The honor is truly all mine! It is an incredible thing to share your story, and help others. Good luck with the book, and all my best to your family. 

KIRKUS REVIEW

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction. This is a story more about the power of hope than the wages of Huntington’s—a pre-symptomatic test for the disease eventually hit the market, but John refused to take it. As he explained: “I’d rather live my life with the hope I don’t have the mutated gene than find out I do.” Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality. She also tenderly portrays the plight of his sisters—beleaguered not only by the deadly genetic inheritance, but also difficult childhoods stained by loneliness and abandonment. This is a rare treat—a true story that is as uplifting as it is heartbreaking.

For other personal stories on HD, check out Life Interrupted, Living the unimaginable, Huntington’s Disease patients and caregivers share their truth of strength, courage and perseverance, as they travel the rocky road of what has been called the worst disease known to mankind. My friend Sarah has a chapter in the book!

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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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©2017  All content and images on this site are copyrighted to Dawn Quyle Landau and The Huntington’s Chronicles, unless specifically noted otherwise. If you want to share my work, I’m grateful, but please give proper credit and Link back to my work; plagiarism sucks!

 

 

Posted in Family, Genetic Disorder, Grief/ grieving, Huntington's Disease, Uncategorized, Writing | Tagged , , , , , , , | 26 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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Phenomenon

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

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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.

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