I’ve Lost Many Things Because of Huntington’s

During the holidays, the small, wood-paneled dining room was full to bursting with my family members.

Ten or more people squeezed around a table meant for six, with just an inch of elbowroom between us. My dad sat at the head of the table, which was covered by a cream linen cloth embroidered with gold thread and set with silver cutlery and the fancy china with a petite fleur pattern that was brought out only on special occasions.

The table setting was beautiful but it was the food that got everyone talking. My mom was known for her elaborate meals. We’d feast on cannelloni stuffed with three kinds of cheeses and meat served with a garden salad, or beef pot roast with mashed potatoes and French green beans. Then there was dessert: chocolate cake with a mountain of whipped cream or fresh apple pie with a slice of cheddar cheese. We served steaming hot tea in delicate cups and saucers.

Conversation and laughter never lagged. Once our stomachs were full, we retreated to the family room and relaxed on the deep sofas. Sometimes we played cards for hours after supper.

My childhood home wasn’t just full of people during the holidays. It was like that most Sunday nights, minus the fancy dishes. Family dinners are one of the things I miss the most about those times.

It’s hard not to blame Huntington’s disease for the breakdown of my family. Many bad things happened shortly after my dad and I were diagnosed as gene carriers. Perhaps Huntington’s tipped things over the edge. My parents separated and sold our family home, the only house I’d lived in growing up. My dad moved two hours outside of the city to live with his brother, and my mom moved a block away. I avoided the street I grew up on when visiting her because the loss was too painful.

My brothers lived in British Columbia and had no intention of moving back to Ontario, even with the turmoil our family faced. We didn’t host Sunday night dinners or large gatherings during the holidays anymore. Instead, we had to navigate a new and uncomfortable family dynamic as we came to terms with the role of Huntington’s in our lives.

I had to accept that my future, as well as my dad’s, would involve suffering from Huntington’s. On top of that, my husband and I started to struggle with infertility. Every time we tried to get pregnant, we had to reevaluate the risk of passing Huntington’s along to our child. Children of gene carriers have a 50 percent chance of inheriting Huntington’s.

It was too much for me to handle. I started to struggle with depression and developed an anxiety disorder. I tried to escape my fears by retreating to my bed and sleeping for more than 10 hours. Yet every morning I woke up exhausted and had trouble getting myself to work. It was the hardest time of my life.

We adopted our daughter almost six years later. Her first Christmas, it was the four of us — my daughter, my mom, my husband, and myself. We spent the day lounging around the house, looking out at the trees coated in snow, drinking tea, and eating chocolate. We set the table for dinner with a bright red tablecloth and served a small roast chicken with Caesar salad and a cheesecake for dessert. My daughter sat in her highchair at the head of the table. It was our first Christmas as parents, so it was a special year. But as we didn’t have many people to celebrate with, the day was tinged with sadness.

A diagnosis of Huntington’s indirectly affects things that go unmentioned, such as the breakdown of families, the loss of friendships, and strained relationships that must be rebuilt. The tension of adjusting to a new reality. The process of accepting your position as a gene carrier, of understanding that you will be a caregiver one day. The stress of trying to understand how others feel and finding the right things to say.

A gene-positive Huntington’s diagnosis is so devastating that it can break things. It has taken our family a long time to put things together again, to come to a place of acceptance and understanding. It is not the same, but it is getting better all the time.

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