Addressing the Anguish that Comes with Diagnosis

As I’ve mentioned in previous columns, my mother received her Huntington’s diagnosis almost a year ago. My parents waited to tell me until I arrived home for winter break from school because they didn’t want the news to affect the end of my semester.

I remember the moment she told me. It was like time had slowed down. She didn’t have to say the words. Instead, with tears streaming down her face, she explained that she had been depressed and anxious and had gotten tested. I repeated the word “no” over and over, hoping that if I said it enough it would stop being true.

Once I regained my ability to think, I was struck by the unfairness of her diagnosis. I had already lost my grandfather, who was my father figure as a child, to this disease. My mom and I are incredibly close; she is one of the few people I confide in. It isn’t fair or OK for her to have this gene. 

One of the most devastating aspects of Huntington’s disease is that the person you say goodbye to in the end isn’t the same person who received the diagnosis. As a neurodegenerative disease, it changes their brain. The fear of my mom losing her personality physically hurts. I can’t imagine her without her unique wit and sarcastic humor.

When my mom broke the news to me, all she could say was that she was sorry — as if it were somehow her fault. As if she chose to inherit Huntington’s without giving it much thought. I assured her that she had no reason to apologize, and we would get through this as a family. 

We are all dealing with the news in different ways. My father is involved with activities at his church. He also writes the column “A Family Tradition” about taking care of my mom. I have read some of his columns, but not all of them. I’ll occasionally read one when I think that I can handle it. But honestly, it hurts too much sometimes. As I’ve shared in a previous column, I manage things in a piecemeal manner.

Once a week, this column forces me to sit down and think about Huntington’s. And I know that my parents read all of my columns.

While the news of my mother’s diagnosis is still devastating and scary, I’m starting to accept it. I don’t think that I’ll ever be OK with it, but I’m hoping that one day I can talk about it without bursting into tears.

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