“If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you turn away hoping to protect yourself from knowing too much?”
These questions posed in New York Time’s reporter Gina Kolata’s newest book “Mercies in Disguise: A story of hope, a family’s genetic destiny and the science that rescued them” ring deep and the answers for Amanda Baxley Kalinsky certainly weren’t easy ones. Kalinsky, whose family-history of genetic illness prompted her to get testing at the age of 26, learned that she carried the gene for Gerstmann-Straussler-Scheinker disease or GSS. This diagnosis meant that Kalinsky would face the same disease that afflicted her family for generations, including her father. The symptoms would start with something as simple as shaky hands and end in being unable to speak or swallow without choking. Kalinsky didn’t know when the disease would strike, but it was inevitable.
And yet Kalinsky and her family were never defeated by the disease, even when they were unsure of the answers. Instead, they came together, making decisions to best navigate their situation and their future generations. From being able to identify GSS to discovering who inherited the genes to deciding how to move forward, “Mercies in Disguise” recounts the story of Kalinsky and her family. I was able to sit with Kolata and Kalinsky before their lecture as part of NSU’s Distinguished Speakers series to learn more about their experiences and how Mercies in Disguise came to be.
Kolata first encountered Kalinsky’s story while working at The New York Times after Kalinsky chose to have children through in vitro fertilization with pre-implantation genetic diagnosis so that her children would never inherit GSS:
“I had this agent that said, ‘why don’t you write a book’ but I had no idea what the book could be, I mean I said yes but I didn’t realize how rich the story was and how incredible and admirable her family was until I met everyone,” Kolata said. “So, I hadn’t even met everyone when I said I’d write the book but the family agreed to participate which is amazing too because I don’t know if I would trust a random reporter because how do I know? They might have an agenda, you don’t know what they’re gonna say or they may get things totally wrong.”
“I had this agent that said, ‘why don’t you write a book’ but I had no idea what the book could be, I mean I said yes but I didn’t realize how rich the story was and how incredible and admirable her family was until I met everyone.”
Kalinsky admitted that she did have some reservations about the book at first, but after getting to know Kolata they all faded away. That didn’t make sharing the story any easier, though.
“It was like reliving it all over again which was really hard because that was the worst period of my life (pause) but I got through it, just like I got through it the first time,” said Kalinsky.
Kolata naturally felt heartache when learning about the story, one she said she would never be able to make up, but was also inspired by the family.
“It was like reliving it all over again which was really hard because that was the worst period of my life (pause) but I got through it, just like I got through it the first time.”
“It was hard in a way because I didn’t like to put anyone through what Amanda just described, reliving the worst time in their life. It also was inspiring in a way because you saw how people were dealt this really bad hand and once they figured out it was in their family, they figured out what it was, everyone else just kinda brushed them off,” she said. “They said ‘oh yeah, a combination of Alzheimer’s and Parkinson’s when it clearly wasn’t and so this family took it upon themselves not to let the disease defeat them. So, it was very difficult in a way but this is a heroic family and it was an honor to hear their story and write about them.”
Family, particularly children, was the driving force between Kalinsky’s decision to get genetically tested and to share her story.
“So, I told a little story in the class earlier, there was a videotape made of my father as he was going through a cognitive test at UCSF and the physician asked him why are you doing this, why are you participating in research and he, in his diseased voice, said ‘for my children, for my kids,’” she said. “And I agree with him that’s the main drive for me.”
What does Kalinsky hope readers take away from her story?
“Everyone has problems in their family and everyone has situations where they say that could be me. And if it isn’t you today it could be you tomorrow.”
“I hope that people take away that hope, love and unconditional support will go a long way,” she said.
Kolata said that she wrote “Mercies in Disguise” to tell this story in a way that engages readers and hopes that they’ll begin to think about larger questions about life and how to live when it doesn’t go as planned.
“My goal is to get you totally involved in this story and then think about the questions it raises, about how to live a life how to make decisions, about how can a family pull together in the face of what seems like an unbearable tragedy,” she said. “But that could be anyone in the world because everyone has problems in their family and everyone has situations where they say that could be me. And if it isn’t you today it could be you tomorrow.”