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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