Excerpt from 1st Chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s
By 1978, my relationship with John had become a long-distance one—four hundred and eleven miles, to be exact—since he was at California State Polytechnic University (Cal Poly) in Pomona, and I was attending the California State University in Sacramento. John would drive the eight hours to see his sisters and me as often as possible, and whenever he was home, we stayed with Lora and Dave. We had so much fun during those visits, I never minded sharing him.
Our lives changed dramatically one Saturday afternoon in early November. Though Thanksgiving was just a few weeks away, John’s sisters had asked him to come home that weekend and to bring me with him to Lora and Dave’s house that afternoon.
Cindy was there, too, having flown in from Canada the previous week. I wondered why she, too, was there before Thanksgiving. John’s sisters and Dave greeted us at the door with their usual smiles and hugs. John and I sat on the comfortable white couch as his sisters finished preparations for dinner and Dave took a phone call. I looked at Bubba and Cedrick, their Keeshond dogs, lying on the brown shag carpet in the sun; at the custom-made macramé hanging I’d always admired, above the brick fireplace; at the framed photographs of Dave and Lora, the Marin siblings, Lora holding Bubba with a huge smile, on the sand-colored walls. The fire roared in the hearth as soft music played on the stereo. This cozy room, always such a safe haven, now felt strangely cold and unfamiliar.
My apprehension grew as the sisters’ whispers floated into the living room. Turning to John, I murmured, “Do you have any idea what they want to talk to us about?”
He shrugged. “It’s something to do with our mom’s side of the family, but other than that, I’m as clueless as you.”
Just then, the three sisters entered the room. I felt the hair on the back of my neck stand up. Dave leaned against the doorframe as Marcia took a seat across the room, crossed her legs, and wrapped her hands around her knees, smiling vaguely, like a Cheshire cat, I thought. Lora sat next to John and began patting his thigh and nodding as if to say, “Everything’s going to be all right.” Cindy pulled up a footstool and sat down in front of us.
“The three of us visited Aunt Evelyn last week,” she began. “It’s been years since we’d seen her, and we decided it was time to reconnect.” She looked at me. “She’s our mother’s younger sister; she lives about an hour south of Sacramento, in Galt. We learned from her that we have a genetic disease in our family, called Huntington’s disease. Our mother, Phyllis, and three of her siblings had it.” She paused a moment to let the words sink in. “We rarely saw our mother’s siblings after she died, so we were unaware that they had suffered from it. It’s an inherited disease that causes the progressive breakdown of nerve cells in the brain. It affects muscle coordination and leads to behavioral symptoms and, um, mental and physical decline.”
“Aunt Evelyn was shocked that we didn’t know about the disease in the family,” Lora added. “Since Dave and I don’t have any kids and Marcia and Cindy are single, she assumed we’d made these choices because of Huntington’s.”
My hands squeezed John’s like a vise, and I moved so close, I was almost sitting on his lap. Otherwise, no one moved; it felt as if an icy despair had frozen everyone in the room. My eyes darted from sister to sister. The word what formed on my lips, but I couldn’t make a sound.
The only thing I knew about Huntington’s was that the great American singer and songwriter Woody Guthrie had died of this terrible wasting disease, and that his last years were even worse than they had to be. Slowly losing control of both muscles and cognition, he became increasingly erratic. At first, he was deemed an alcoholic and then diagnosed schizophrenic. Like John’s mother, he lived in psychiatric hospitals for years until he died.
Cindy, always the fearless one when it came to dealing with their father, said, “After the visit, I called Dad and asked him if what Aunt Evelyn had told us was true. I pressed him for answers, but you know Dad. He got angry and never admitted that Mom had had Huntington’s.”
Coming out of her trance, Marcia said, “The good news is now we know what was wrong with Mom. But the bad news is we each have a fifty-fifty chance of inheriting this disease. And there is no test or cure.”