I Have Gained Many Things Because of Huntington’s

I walked through the door of my condo at 9 p.m., kicked off my running shoes, and dropped my gym bag on the floor. Crap, he’s not back yet, I thought to myself.

I had just returned from my fifth run of the week. I was beating down my body and my mind with exercise. It was one of the only things that helped calm the constant panic I felt ever since being diagnosed as gene-positive for Huntington’s disease (HD).

I filled a glass with tap water, took a sip, then leaned against the kitchen counter while wondering where my husband was. My home used to be a place of refuge but at that point I couldn’t stand being alone in it. It was always during those quiet moments when my mind started racing and the panic returned. I am going to get HD. I am going to get HD, I thought over and over. My body slumped toward the counter and I broke down crying. In that moment I didn’t understand how I would ever feel happy again. I had no way of knowing that the worst time of my life would lead to some really great things.

After my diagnosis, it was difficult to see anything positively because I was so depressed. I had a therapist who challenged me to keep a happiness journal and write down one good thing that happened to me every day. Before going to sleep at night I would sit on the edge of the bed in my PJs, my floral print notebook open on my lap and my pen hovering above. Even on the worst days, I was able to find something positive to scribble down, like someone holding the door open for me at the coffee shop or a friend calling to see how I was doing. Each day would end with a positive thought recorded in the small notebook that I stored in my bedside table. Eventually, I didn’t have to look so hard anymore because seeing goodness became a habit.

As I grew stronger I started looking for ways to protect what little happiness I felt. Some things, like my diagnosis, were out of my control but other things were not. So, I started making changes to my everyday life. I realized some TV shows made me grumpy so I stopped watching those programs. Certain people always made me feel bad about myself so I stopped spending time with them. I learned how to set personal boundaries and not let others push past them. I was constantly reevaluating my life and looking for ways to gain more happiness. I have kept up all of those practices to this day.

Overall I am a stronger and happier person now then I was before I was diagnosed, even with this dark disease looming before me. I know that seems hard to believe. Somehow the process of coming to terms with my diagnosis has improved the person I am. I have learned that is called post-traumatic growth.

I am not as quick to judge others; I am patient and empathetic. When people share their stories and vulnerabilities, I am so deeply moved that I can feel the physical emotions rising in my chest. The beauty of nature was always right in front of me but somehow I never saw it so clearly. When I go to the grocery store, I am in awe of the brilliantly purple spring onions and hot-pink dragon fruit. I have also learned how to appreciate a wonderful moment as it happens. As a mom, there is no greater gift than being fully present with my child — baking together last week reminded me that.

My daughter stood on her pink plastic bench at the kitchen counter, throwing random ingredients into a silver mixing bowl and stirring them together with a wooden spoon. She was experimenting by making her own special banana bread, just like the contestants on the show “The Great British Bake Off.”

“How about we put some pink food coloring and sprinkles in it, Mom?” she said.

“OK!” I laughed and grabbed the basket of cake decorations from the cupboard.

We dug out the food coloring and she added five drops. I watched as she gave the mixture another stir and I thought to myself, “This is exactly what I imagined being a mom would be like.” I felt happy. It was something I wasn’t sure — since after my diagnosis — I would ever feel again.

It absolutely sucks that Huntington’s disease will manifest one day but there isn’t anything I can do to change that. What I can do is continue appreciating the good things my diagnosis has brought me and approach my future with Huntington’s disease openly and optimistically.

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