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!

 

 

About Dawn Quyle Landau

Mother, Writer, treasure hunter, aging red head, and sushi lover. This is my view on life, "Straight up, with a twist––" because life is too short to be subtle! Featured blogger for Huffington Post, and followed on Twitter by LeBron James– for reasons beyond my comprehension.
This entry was posted in Family, Genetic Disorder, Grief/ grieving, Huntington's Disease, Uncategorized, Writing and tagged , , , , , , , . Bookmark the permalink.

26 Responses to I Flinch

  1. Reblogged this on TALES FROM THE MOTHERLAND and commented:

    Some of you know, many don’t, that I have another blog. I don’t write there very often… for so many reasons. Today I did. I’m sharing it here this time.

  2. mamaheidi60 says:

    I think you are entitled to write about this because it IS your story. HD DOES affect you. You are honest and sharing the raw feelings of being the granddaughter, daughter, niece and sister. Where you are today, is in part because of your family history. I think it’s important to put it out there. Says the woman who is just getting past the ‘what will others think when they read this’. I was thinking about writing earlier today, before I read this. I remember thinking that I was looking forward to being my grandmother’s age (may she was 55 or so when I was analyzing her behavior). I was sometimes afraid of her bluntness, but mostly I admired her no holds barred attitude about laying it out there. I thought it was a factor of age. Okay, I think I’m starting my own blog piece here. I just wanted to say – write it and tell it like it is. No one can tell you you don’t have any right to it.

  3. Pingback: When I Am Older – Coffee With Mama Heidi

  4. nmarkos says:

    Please keep writing, Dawn. Everything that you say matters. And your special gift of being able to write in just your way helps the rest of us to understand and care. Please keep writing.

    • Thank you so much for these kind words. Each time I hit publish, I spin every detail round and round. I write to express something, but I’m not always sure where the lines blur. Thanks for the supportive words.

  5. Good for you — two blogs- I can barely keep up with one. Keep sharing this story, Dawn. It’s of value to many.

    • I don’t really keep up with or do justice to the Huntington’s Chronicles… nor do keep up with this! So, smoke and mirrors my friend! You just keep writing those letters and fighting for our liberties! xo

  6. Cathy Ulrich says:

    Dawn,
    You are one of the most courageous people that I know. It takes courage to put yourself out there to the world on so many levels about HD and the many other topics that you so eloquently and fiercely proclaim. And perhaps it wasn’t just a trick of fate that you emerged from your family without the gene. They needed your strength, love, support and kind heart to be there for them and to be the voice that rages against this terrible disease.

    Thank you for being you.

    Cathy

    • Thanks Cathy; your friendship means a lot. But let me be very clear here: I am not the one with courage here. My sister has courage–– living out each day with this hanging over her head, and still showing up to march and smile and cheer others on. My blog buddy Sarah has courage, baring herself so totally and letting us all into her HD world. I write because that’s what brings me clarity and healing… I feel grateful for the lovely comments, but I do not feel courageous. Honest, not courageous. But thanks so much; your words are a hug. xo

  7. I think the last word anyone would use to describe you and what you are going through would be “coward”. Be kinder and gentler to yourself..

  8. I can understand wanting to keep the peace, but even if someone else is suffering more, it doesn’t mean you don’t have your own wounds to clean. By taking HD out of the shadows you are helping many people feel less alone and bringing attention to the problem. If this exposure causes pain, my hope is that it will also be freeing because HD should not be shameful (and take this from someone who hid her catheter bag after surgery). I’ve learned its better to face things head on than hide.

  9. Jackie Weber says:

    You have the right to share how you were impacted. This is your own way of dealing. Others may not understand but you keep at it. You’re not a coward, everyone deals with things differently. I salute you for your ability to write so vulnerably and candid. It’s a gift.

  10. I inherited the defective gene that will eventually cause Huntington’s disease. Did you know Suicide is the second leading cause of death in the terminal Disease? That’s why awareness is so imperative.

    • I do know that, Douglas. It is a very serious and disturbing statistic, that I have seen up close. I am so sorry for your diagnosis, and wish all the best as you cope with this information and the outcome. Thank you so much for taking the time to read my piece, and share your personal information.

    • Rachael says:

      You are correct in that. I too am gene positive still no symptoms at 48. I’m praying for a cure or at least some good meds to help. The anxiety that I have can be huge at times knowing it’s coming for you. It does get better. Sorry to here you have to fight this as well!

      • I think we all hope for a cure, and yes, anything that helps in the interim. The more you can live your life fully, and try to meditate, exercise, do whatever helps the anxiety and fear, is the right to do. Take care of yourselves, but don’t let this beast have any more of you, don’t give up any of yourself, before you have to!! Wishing you the best in this journey.

  11. HowardGutman says:

    First, a disclosure. I am not a doctor or even a researcher, just someone who is concerned about HD and has done some research. Second, please consider supporting the Good Guy Classic, a fundraiser exclusively for Huntington. https://www.youtube.com/watch?v=hQ4zddFZwss. Here awo items I have written.

    I have been interested in the relationship between Huntington’s and cancer. Huntington’s patients have a significantly lower rate of cancer. See Significantly lower incidence of cancer among patients with Huntington disease, An apoptotic effect of an expanded polyglutamine tract?, Cancer J. (1999). A later study found that expression of a gene associated with Huntington, (Huntington-interacting protein or HIP1) was connected associated with prostate cancer progression and metastasis. Huntingtin-interacting protein 1 is overexpressed in prostate and colon cancer and is critical for cellular survival, (2001).

    Three issues arise in my view,

    1) how can we get existing chemotherapy and immunotherapy drugs evaluated for Huntington patients. Cell and animal studies should help us get an understanding of whether the drugs are promising and if these drugs are already FDA approved, development costs should be dramatically lower,

    2) do the tissue evaluations of Huntington patients provide any insight. For example, were their readings for HIP1, Ogg1, a gene associated with cancer and Huntington.

    3) can we get pharmaceutical companies or other entities interested in joint trials of cancer and Huntington drugs.

    __ __ _

    The trinucleotide expansion that causes Huntington is basically a mutation. Typically the body has a group of controls which include cell repair and cell-death to stop or fix abnormal genes. Defective repair in an area called mismatch repair (MMR) has been identified as one cause of Huntington’s. Basically, the bad genes that should have been detected and repaired somehow get through.

    It appears some cancers also involve mismatch repair and we have chemotherapy drugs that impact the systems of cell repair. In one study, a group of colon cancer patients were identified with tumors exhibiting defective mismatch repair (MMR). (1) Chemotherapy drugs were more effective with this group indicating the drugs improved the system of cell repair. On its surface, there are similarities between Huntington’s and cancer; both involve duplication or multiplication of cells without regard to the system’s needs, and both seem to escape the systems of cell regulation that satisfactorily address many other cellular problems. One type of cancer associated with mismatch repair, hereditary nonpolyposis colon cancer, involves a hereditary component like Huntington’s.

    It’s conceivable that some existing chemotherapy drugs could help Huntington’s. This points to research partnerships involving some forms of cancer and Huntington’s. Development of a new drug addressing a new cellular target can take a decade and involve expenditures of hundreds of millions of dollars researching and creating the drug, evaluating its impact in animals and humans, checking side effects and determining its efficacy. However, using existing drugs for new uses could dramatically cut costs and the time for development. If FDA approved, the safety of the drug has already been evaluated. Our hope for a cure may include an old drug for a new use, and evaluating FDA approved cancer drugs for Huntington’s.

    For people with Huntington’s and their families, one goal is to expand research, which in my opinion includes trying existing drugs for Huntington’s. Discussion of possible partnerships, or targets for research is a start in my opinion. Perhaps HD families and patient can help to seek grants or funding for research, and play a role in seeking a cure.

    Conflict Disclosure

    The author has no association with any company conducting HD research.

    References
    (1) Defective mismatch repair status as a prognostic biomarker of disease-free survival in stage III colon cancer patients treated with adjuvant FOLFOX chemotherapy, Clin Cancer Res. 2011 Dec 7470 .
    (2) Implications of mismatch repair-deficient status on management of early stage colorectal cancer, J Gastrointest Oncol. 2015 Dec;6(6):676-84.
    (3) Fox, A genetic study confirms that minute differences in DNA repair genes can influence the age of HD symptom onset, HD Buzz (May 2, 2016)
    (4) Role of DNA Mismatch Repair Defects in the Pathogenesis of Human Cancer, J. Clin. Onc. 1174-79 (March 2003)

    • I’m not sure what any of this has to do with what I wrote, and it feels a bit insensitive (given what I wrote), AND your link does not work…leading me to question who you are and why you put this here. But, if anyone with HD, benefits at all from this, I’ll leave it here.

      That said, it seems like spam, and that is pretty astounding to me, if you understand HD and it’s impact. I did not question whether you were a doctor, because most drs would be more thoughtful about posting something like this.

      I’ll be curious to see if there’s any response…

  12. HowardGutman says:

    Sure, I’ll be happy to respond and I can appreciate that you are concerned with spam.
    You wrote, “How can I do any of those things in the face of those I love who are actually living with those mutated genes. ” It’s important to work for cure, and there has been substantial progress in many areas of cancer, and the hope is thinking about approaches can help. I am happy to review, discuss, and debate this, with the goal of working toward cure.

    Just last year, two researchers found, “We show here that suppressing somatic expansion {of OGG1} substantially delays the onset of disease in littermates. ” Suppression of Somatic Expansion Delays the Onset of Pathophysiology in a Mouse Model of Huntington’s Disease, (2015). There are two areas people can write and post, discussing the personal and family challenges of Huntington Disease (something I generally try to do privately) and discussing medical research and possible cures.

  13. Thanks for your response. I appreciate you clarifying.

  14. Rachael says:

    You go girl!!! I love your thoughts and stories. I’m gen positive with no symptoms yet, have a mother sick with it and a sister sick as well my other sister tested negative. You are doing the right thing I’m sure so many feel the same way!!

    • Thanks so much Rachael, and thanks SO much for sharing your thoughts. I was away and missed the notification, but it means a lot to me to read your feedback. This is such a hard path, and each step has to be individually made… no one step is right for everyone! Thanks for taking the time to share your kind words; they mean so much.

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