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. Huntington’s Disease 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.
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. I grew up with people who loved me, in a place that became my home. But, there was another family, and another home, that has followed me all my life.
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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