Every time we visit my dad, we go for a walk on the beach. On a recent cool September afternoon, the four of us wandered along the water’s edge, poking at rocks and admiring the ripples in the sand. My dad was wearing his green fleece jacket, jeans, and a pair of sturdy shoes. He carried a homemade walking stick, made from a long, strong branch. As we approached the creek, he pointed out to my daughter how it had carved a new path toward the lake.
My husband found us a narrow spot where we could easily hop over the stream to avoid soaking our shoes. I dropped back to take a few photos of a glistening wet rock, a monarch butterfly perched on a milkweed plant, and the silhouette of my family ahead. From a distance, I noticed a waver in my dad’s gait, one of the few visible signs of Huntington’s disease (HD). He doesn’t let anything stop him from enjoying his walks on the beach — neither the weather nor Huntington’s. It’s one of the things I admire about him.
My dad moved to the small Ontario town on the Georgian Bay after spending his life in the big city of Toronto. Once he arrived, he immediately set out to discover all that the area has to offer. He visited small museums and art galleries. He went on farm tours and bought maple syrup and bunches of garlic to support the local farmers. He attended performances at the cultural center and went out to live music events on Friday nights. He even went to a dance, something I’d never have expected of him.
During the cold winters, you would find him at the curling club, standing on the long, white slab of ice. His position was lead, and he was happy to play with anyone, no matter their skill level. He’d arrive early to put on the coffee for the other curlers and stay late to have a drink with the winners. At the end of the season, he would help sweep out the melted ice and close down the rink. He even volunteered at the local bingo hall once a month to raise funds for the club.
In the summertime, curling was replaced by lawn bowling. He played several times a week and volunteered to teach youths how to bowl. He was curling and bowling up until two years ago, at the age of 74. These days he enjoys riding his bike and playing badminton. He has made many new friends in the close-knit community where he lives.
Every year, my dad still makes the trek back to Toronto to participate in Enroll-HD, a worldwide research study on Huntington’s. At the yearly appointment, he participates in cognitive exercises, gives blood samples, and answers questionnaires. He knows that by taking part, he is helping to find a treatment for the next generation, maybe even in time for me. The desire to help others is ingrained in him. He has always been generous with his time.
My dad is a wonderful person, but it was hard for me to see that for a long time.
We were diagnosed as gene-positive for Huntington’s within a few months of each other, which meant that it was 100 percent certain that we would develop the disease, we just didn’t know when. I was digesting my dad’s diagnosis at the same time as mine, and I quickly sank into a deep depression.
I obsessed about what Huntington’s would take from me. I feared losing the ability to make decisions for myself. I assumed that I would no longer be physically active. I imagined that anyone who loved me would abandon me. I thought that the onset of Huntington’s symptoms would spell the end of any meaningful participation in society. I was so consumed with my gene-positive diagnosis that I could no longer see all of me; I could see only my future disease. Similarly, I was so worried about my dad that I could see only his prognosis.
Our futures were scary to imagine, so I tried not to think about them.
Over 10 years have passed since we were diagnosed. In that time I have been lucky to witness my dad living an ideal retired life even with Huntington’s as a part of it. I still worry about what it will take away from me, but I’m less afraid of my future because of my dad.
Thank you, Dad.
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