As I got older, I saw more and more how HD impacted me too. As a pre-teen, grabbing cash from his wallet while he slept all afternoon and evening and walking a mile round-trip to the small family-owned grocery store to get food for dinner. When fending for myself, it was quesadillas, grilled peanut butter and jelly, or frozen items from Schwann’s. I lived off their breakfast pizzas. Cooking together meant endless beans, spaghetti, and popcorn chicken. As my friends started driving, I was able to stay full by getting meals out with them. I didn’t really know it then, but making sure I was fed and using all the resources I had wasn’t normal.
As a teenager, I remember standing around in a circle with some players and their parents after beating our biggest rival in hockey. We were all chatting happily about the best plays, where we would eat to celebrate after, and whether or not to buy the tournament sweatshirt. I remember looking at my dad and pausing, my mind blank, realizing how my dad kept folding and unfolding his arms. Crossing his hands as if to hold them down against his chest and stop them from moving. I saw one dad watching him from across the circle and then our eyes met. I felt shame and embarrassment. All these parents knew and loved my dad, I was aware of that, but that moment was seared into my brain. This wasn’t normal. My family wasn’t normal, just me and my sick dad. I wasn’t normal.
As a graduating senior, I was always searching for him on the sidelines of my lacrosse games, but internally knew this wouldn’t be the time he came. His anxiety took over too much and he rarely left the house. Every week I had a game at home, I would write the time on a piece of scrap paper on the kitchen table, hoping my silent gesture would be enough to encourage him to come out this time. With a sharpie, I would scribble…
Dad, they’re honoring seniors this game.
Dad, they’re honoring captains at this game.
Dad, this is my last game. I love you.
At some point, he came to his last game and I never knew. I had to start coming up with excuses for him as all the other parents crowded around after the games. I knew he was probably sleeping his depression away, or fighting every thought in his head filled with anxiety. Those excuses I came up with became reasons and rationale. I had to start telling the story from my perspective. A young girl impacted by Huntington’s disease.
By 8th grade, I knew HD was genetic and I knew I had a 50% chance of inheriting the mutant gene from my dad. Over the 4-5 years following, I started weaving how I told my story together.
My dad has HD. He’s a single dad. He does his best.
I could have HD. I want an education and future with big hopes and dreams. I want my life to be meaningful.
I don’t want to make another human in the world go through this like I am. Like I did as a kid. I won’t pass this on to anyone else. I don’t want to be alone.
That seemed like something I could control.
It made answering teachers’ questions about college and family members’ prods about my future plans easier.
Maybe I’ll get married. Maybe not.
A simple “I don’t want kids. I never have.”
And then, when family and outside sources pressured me to go to a certain college and get a specific degree, I could say no. My future could be much shorter than everyone else’s. When you plan school, your degree and career path, you expect to work until you’re 60, live until you’re 90, and have a long, successful career. What I saw my future as was an identical replica of my dad’s. Get sick in my early 30s, stop working right away, be homebound and depressed for a long time, get injured from your lack of coordination and loss of balance and not be able to do the activities you enjoy anymore. Get divorced. Live alone. I couldn’t go to 8 years of school to be a doctor if I was going to get sick at 35.
It was rational, controlled, with purpose. Through all of that, telling my dad’s story morphed into telling my own.
Every time you tell someone new, or explain a new thought process about HD, or tell someone about a progression, you practice telling your story and how HD impacts you separate from your loved one. With practice, you fine tune each piece. You try to anticipate what each person can handle.
You navigate these damaged pieces of yourself over and over again, trying to make something that is meaningful and whole. As a kid, your personality, your interests, and dreams come together piece by piece as you discover more of the world. But HD spreads and infects every single one of those pieces. It changes how you view the world, how you view yourself and your worth, and how you think the world sees you.
Being an advocate for HD allowed me to tell my dad’s story until it became my own. It helped me navigate those tarnished pieces of myself and try to polish my dreams for the future. I was able to reclaim my story as I learned more about my own identity in the world and in the HD community.
I come from an HD family. My grandfather had HD. I’m a daughter of someone living with HD. I’m a daughter who was at risk and learning how to be a caregiver for my dad. I’m my dad’s daughter, caregiver, and now share this gene with him. Wait, I’ve always shared this gene with him.
I carried the gene when I was the daughter in college learning how to be a caregiver from afar. I was a gene carrier when I was writing papers, doing art projects, and telling everyone I could about HD in school. I was gene positive when I was looking for him on the sidelines at 17, walking to the grocery store at 12, and dancing on his feet in the living room at 7. My story shifts.
I’m a gene positive, pre-symptomatic person, who is a caregiver for my dad entering mid-late stages while starting my social work career.
I’m a gene-positive, caregiver, professional in the HD community.
This is my story now. And I come to you with a trifecta of personal and professional experiences.
“Social work” Anna and “HD community member” Anna are separate sides of myself that are entirely intertwined. Everything in my life helped me develop these parts of myself, but now they are coming together in one space to support others impacted by HD. Navigating that is difficult and requires a lot of brain mapping to remain professional in a setting that is so deeply personal. If you know others in the HD professional world that come from HD families, I’m sure they would share similar challenges.
I believe it would be even more difficult if I hadn’t had that practice of learning how to tell my story, separate from my dad’s, in different settings as a kid, teenager, and young adult. Advocating for HD as a young person allowed me to find an identity within HD that was my own. It gave me opportunities to practice the skills necessary and the natural ability to talk about HD in a way that serves others. It provided me a safe space to develop all of my identities within the HD community, as a gene carrier, caregiver, and professional.
I would encourage you to extend this grace and support to your kids, siblings, or other loved ones who are trying to navigate a similar experience. Telling our stories helps us find out who we are. It allows us to separate our HD experience from our parents and family members and become advocates for something that deeply impacts each part of us. That practice and empowerment can lead to making a difference and doing important work. I wouldn’t be here with you all if I didn’t have that. And I think that’s pretty special.
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