Writing this blog is harder than I thought. It’s one thing to upload the old posts that I wrote, as my Mom was dealing with Huntington’s and dying. It’s another to look at where that left me… us. My family. It’s not like it ended with her, but there’s been a lull and that quiet time is scary. After my grandmother died, we had this same lull… before my mother was diagnosed, and we knew she would suffer the same fate. That lull was different though, because we didn’t really get it yet. Frankly, we were still in denial. I was in denial. I accepted that the diagnosis was real; I’d done some research, but it still didnt’ seem real. This time, it’s all very real.
My grandmother had been far away from me as she began her painful decline. I was with her just two weeks before she died, unexpectedly of a heart attack, and there’s no pretending that her appearance and mental state was not disturbing. A woman who I had always looked up to, who had been a truly amazing woman in so many ways, was relegated to a wheelchair, barely able to speak so that we could understand, and a prisoner to her body. She refused to go outside or leave the nursing home, where she’d gone to recuperate from a broken hip, when I came to visit. This was not the grandmother I’d know. I ignored her wishes, and wheeled her outside. I talked her ear off. I tried to push away my rising panic and grief. Are you in there? I pleaded. Can you understand what I’m saying? I wanted desperately to know that she was still there. She stared at me, with the bluest eyes you can imagine, and nodded. “Yes,” she got out. What’s it like being in there? I pushed. She stared at me for a moment, and I wondered again if she was tracking me. And then, she struggled to speak, but said very clearly: “Horrible. I hate it.” I held her, but I didn’t let her see me crying, as I wheeled her back. I loaded her in my rental car and took her to my aunt and uncles for a lobster dinner, with my grandfather, her son and daughter (my mom and uncle), her grand daughters (me and my cousins) and her three grand children (my kids). Lobster had always been her favorite, but I think that being seen that way, going out had become scary to her… too much to do. I took her against her will, her complaining as I did so. Complaining the entire drive to my aunt and uncles, on the lake. However, that night, she laughed and enjoyed her food and sat on the deck and grinned. She died two weeks later; that was her last lobster dinner, her last family dinner, the last time she went out anywhere.
I had said my goodbyes. I had said all the things I needed or wanted to say, while I was visiting. I knew that our time together was precious and limited, and I found myself pouring out my thank yous and gratitude, telling her all those things that we say we wish we had said. I said them. I didn’t believe that would be our last visit, so the news was a hit to the gut. I remember falling to the floor and wailing. She was my other mother, often the more stable one. On the one hand: That the woman I’d grown up with could be gone, was unimaginable. However, that the frail, trapped woman I’d spend hours with, a few weeks before, was gone— was a blessing. For her. I felt empty and devastated, but I knew her suffering was over. Hard not to appreciate that part. And then the lull.
We weren’t talking about HD all the time. We weren’t keeping track of grandma’s condition, or what was next. We were all quiet for a while. Until my Mom decided to get tested. She was in her early 50s. She was still living in Florida, working, doing what she’d always done. She wasn’t a totally stable person, and there was lots of drama. But we had noticed more, at the time. She seemed a little less reliable, and she’d had a few unexplained falls. There was always an uneven sidewalk, a curb that she hadn’t seen, a high heel that got caught in turf… things that we could latch onto as well. But I suspected. When she said she was getting tested, I knew what we wold hear. We’d gone out to dinner, and in the middle of the evening, she looked at me and her expression was utterly blank. Nothing there. If you haven’t lived with HD, or haven’t been close to it, you can’t really imagine those eyes. I’ve seen them several times now. Blank eyes, where once a mother, a grandmother, an aunt or a sister lived. That night, I saw such a dark place where my mother’s blue eyes had been, that I excused myself to go outside and cry. I knew what was coming.
The lull didn’t last long. Mom decided she had to know; had to confirm what she’d long suspected. The diagnosis was an exclamation point on what we imagined we’d hear. I had turned 35 years old the day before (my mother chose not to call me on my birthday, with the news) and we were trying to have a fourth baby, after losing one in the second trimester. I decided that day, that three kids were enough, and agreed with my husband’s pleas that I not get tested. “Let’s just live our lives, and see what happens,” he pleaded.