No chance “Rules for 50/50 Chances” would have been about anything other than HD, McGovern says

Tuesday, January 26, 2016

 

A writing instructor and mentor once told author Kate McGovern to “write about the things you obsess over.” So when it came time to start typing the nascent letters on the keyboard that would form the words for her first novel, “Rules for 50/50 Chances,” she knew right away she would be writing one of the first stories for young adults to prominently feature Huntington disease.

Kate McGovern
Kate McGovern, author of "Rules for 50/50 
Chances (image via courtesy Kate McGovern
/Liz Vidyarthi)

“I did not sit down and think ‘what story am I going to write now’ or ‘what should this character be dealing with?’” McGovern said. “It was much more that the story had been percolating in my mind for so many years that I couldn’t stop thinking about it. That’s the ‘find’ you should be writing about.”

McGovern, also an essayist, playwright and educator, had always been interested in the human side of medicine and genetics. There is a growing amount of knowledge to be gained about one’s medical future, she says, and how that information changes how one lives and the choices one makes is fascinating to her. McGovern first became more intimately familiar with HD in 2007 when she read a New York Times articleabout HD community member Katie Moser and her life around the time she underwent presymptomatic genetic testing for HD.

“She was so articulate about the choice to get tested and what that would mean to her,” McGovern said. “From there, I started reading everything about HD I could get my hands on.”

Five years later, McGovern began writing the story of 17-year-old Rose Levenson, a high school senior and accomplished young ballet dancer. Rose faces a number of decisions about her future, but none more important than the decision whether or not to undergo genetic testing to find out if she has inherited the HD gene expansion. Rose also helps care for her mother, whose HD symptoms are progressing, and navigates through her first experiences with a relationship, with a boy whose family is similarly affected by a genetic condition (sickle cell disease).

One of the reasons HD stuck in McGovern’s mind was the stark choice those at risk face to know or not know their genetic status given the dominant nature of the HD gene. In this way, Rose is reconciling the uncertainty she currently faces with a decision that may or may not deliver the clarity she seeks about her future.

“It’s about how you live a life fully, even dealing with a set of extraordinary challenges and uncertain circumstances,” McGovern said of “Rules for 50/50 Chances.” “It was very important to me to write a story that was authentic to the particular circumstances Rose and her family live with. But also to write a story that resonates with readers who have not experienced Huntington’s disease or anything like it.”

“They can identify with being 17 and making decisions and balancing competing priorities, like her passion for creative art and school and love, all the while thinking about what is going to transpire with her health and how that will affect those things.”

In her research for the book, McGovern read all different types of content about HD, but wanted to also talk to an HD professional to gather input on how HD progresses, and to make sure the dialogue involving Rose’s mother rang true for someone with HD. A web search brought her to email former UI HDSA COE researcher Dr. Nancy Downing, and the two began talking about the accuracy and genuineness of various parts of the book. After highlighting some of the shared experiences for those at risk for HD, Downing confirmed that a young person in Rose’s situation would also react in his or her own unique way. That gave McGovern the freedom to make choices for the book that felt right for each character.

“Obviously there is a spectrum of experiences and reactions young people might have, but I wanted to make sure [Rose’s] reactions were part of that spectrum,” McGovern said. “Even if her experiences didn’t look like everyone’s experience, they were in the mix.”

“The important part was helping provide more context to this decision [of testing for HD],” Downing said of her advice to McGovern. “It’s one thing to consider this a purely clinical genetics question, and quite another to put it into the context of a family and a future for an individual.”

Rules for 50-50 Chances Cover
Image courtesy MacmillanA well-known name in both literary circles and the HD community also provided feedback for “Rules for 50/50 Chances.” When the book was nearing publication, McGovern shared it with Lisa Genova, neuroscientist and author of the bestselling “Inside the O’Briens” (also about an HD family) and “Still Alice.” Genova provided some specific comments regarding HD symptoms and other topics, which McGovern said was very helpful.

Books like Genova’s and McGovern’s have the potential to be helpful for the HD community by raising awareness of HD and providing a base level of understanding about the disease, which is sorely needed, according to many people from HD families.

“Storytelling is a very effective way to promote empathy,” said Downing, now an associate professor at Texas A&M College of Nursing. “For people in HD families, this book can be a good way to start conversations by asking young adults, in what ways they related to Rose’s thoughts and experiences or in what ways were their own experiences different.”

A self-professed bookworm since childhood, McGovern says young people can have a special relationship with a book when they see themselves in it or are otherwise pulled into the story. In that way, books for young people have the potential to be life-affirming or life-changing. McGovern hopes “Rules for 50/50 Chances” can have that effect, especially for young people both in the HD community and beyond.

“Hopefully we’ll see this book help in some way,” McGovern said. “[Young people in HD families] can share it with friends and start conversations. My biggest hope would be that it would help raise awareness and get the knowledge of Huntington’s disease outside the Huntington’s disease community.”

REPORTER’S NOTEBOOK

“RULES” GOES HOLLYWOOD?
McGovern says she would love to see the book adapted into a movie, though there are no immediate plans. It would make a great movie, she says, in part because of the focus on the mother-daughter relationship. Usually in young adult novels, parents are on the periphery, but in this book, Rose’s mother and their changing relationship play such an integral part in the story. “It’s a mother-daughter love story in a lot of ways,” McGovern says.

A CAST OF REAL AND FICTIONAL CHARACTERS
A small but well-developed group of characters shapes the story told in “Rules for 50/50 Chances,” including Rose, her parents, grandmother, boyfriend Caleb and best friend Lena. McGovern says the characters all have pieces of people she knows. Rose’s father is the most strongly based on a real person, McGovern’s own father (the resemblance was confirmed by McGovern’s brother). McGovern and her mother both love trains, as do Rose and her mother. Lena, meanwhile, is a combination of a few of McGovern’s friends.

THE RIGHT TIME
While the instances of Huntington disease playing a central role in books, films, and TV episodes seem to be increasing, there remains a long way to go for greater Huntington disease awareness, McGovern says. There is even less out there about HD specifically geared toward young people. Those facts made it all the more apparent for McGovern that this was the right time to write this story that reflected the experiences of young people in the HD community. And it’s the opinions of those young people about “Rules” that matter to her most. “I really hope that for young people who are at risk for HD, some pieces of their experiences are reflected in the story. I think one of the most important pieces for literature for young people in general is giving readers the chance to see themselves in a book, and to identify with the characters and their experiences.”