In her first novel, Rules for 50/50 Chances, author Kate McGovern highlights the challenges of being at risk for Huntington’s disease through Rose, a 17-year-old Bostonian who is navigating the challenges of senior year of high school while managing her mother’s worsening HD symptoms. Her mother, who did not know she was at-risk for HD, was diagnosed when Rose was 12 years old. Rose is a talented ballet dancer who has spent the last five years of her life watching her mother decline from the genetic surprise to her family. Rose tries to figure out which colleges she wants to attend, she tries to balance the reality of her genetic status and her family’s needs. All the while, she is falling in love with a teenager who must also help his family manage another genetic condition—sickle cell anemia.
McGovern does an excellent job highlighting the thought process of a young person affected by the disease not only through her parent’s experience, but her own genetic status as well. McGovern consults Huntington’s disease experts, accurately explaining the disease genetics early on.
“Ours is a mutated gene on chromosome 4. The gene’s called huntingtin, and if yours is messed up like my mother’s, you end up with Huntington’s disease. Don’t ask why the two huntingtons—the gene and the name—are spelled differently; I have no idea. What I do know is that if you’ve got that mistake on chromosome 4, like my mother does—the tiniest typo in a book with a billion words—then your huntingtin gene goes haywire and basically wreaks havoc in your brain. Things start deteriorating in your mind and your body, until you’re not the person you once were, and then they keep deteriorating until you die. Slowly, painfully, and without any chance of reversal…Oh, and as far as my genes are concerned—it doesn’t matter that my father doesn’t carry the mutation on chromosome 4. I only need to inherit the mutated gene from my mother to be royally screwed. Which means that after watching my mother fall apart, I have a fifty-fifty chance of falling apart, too.” (Page 4)
In many novels and works of fiction, the experience of Huntington’s disease can be overdramatized in a way that fetishizes neurodegenerative diseases and portrays them as short-term conundrums for a few “victims” who have little autonomy or control over their lives. McGovern, however, manages to balance the reality of the devastation with the emotions and feelings of a young person at risk for the disease. Early on, McGovern describes Rose’s internal conflict as she attends a Rare Genes Walk with her family.
“But now, the sight of all those kids in wheelchairs and their parents plastering smiles across their faces like they’re actually okay with this makes me feel kind of nauseous. Plus, Mom can’t walk the whole way by herself anymore, so she uses her own wheelchair, and walking alongside her makes me feel like I’m supposed to be one of those smile-plasterers, too. It’s all, ‘Hey, world, I’m so strong!’ I’m not.” (Page 8)
This book highlights the many ways in which Rose is still a normal teenager. She is falling in love for the first time, experiencing anxiety over college applications, going to school, hanging out with her best friend, and continuing to follow her passion of ballet. However, while Rose is able to pursue these activities, she does so with the presence of Huntington’s disease in her life. Furthermore, her own at-risk status haunts her as she tries to decide whether or not she wants to pursue dancing, move across the country for school, and so on.
McGovern writes in a way that allows the reader to follow Rose’s decision making process as Rose decides what is best for her. While genetic testing is a big deal, Rose acknowledges that testing positive at 18 years of age would allow her many more healthy years before her symptoms would begin. Rose’s mother was blindsided by the diagnosis, as Rose’s grandfather died before they could determine Huntington’s disease as the reason for his illness. Rose, to some degree, does not want to experience the same shock if she were to find out she had HD once she was symptomatic.
“It’s not that I’m waiting to make a decision, waiting to see where life takes me, waiting to find out what happens next. What I’m waiting on has already happened. It happened before I was born. If I knew the answer, if I knew I didn’t have the mutation, then the answer to those questions could still be maybe, at least the maybe would be in my control. And if I have it, if I’m positive like Mom, what’s the point in imagining all the possibilities? Might as well be real about it and get back to the business of dying…Then again, if I have it, I’ll still have probably the next twenty years before my symptoms really start, maybe longer. Do I really want to get ready to die ahead of time?” (Page 49)
Rose’s character is thoughtful and considerate, yet able to express her frustration and anger in a way that is believable and understandable. While she is fairly confident in her decision to pursue genetic testing at 18 years of age, she presents both the pros and cons of genetic testing, understanding why somebody may or may not decide to pursue the test as she has. However, in some ways, it is also clear that Rose is selfish in her decision making process. Genetic testing is a process that affects the entire family, even if it is just one person receiving their results. When Rose decides to pursue genetic testing without her father’s consent, she is doing so while risking her father’s feelings. While it is Rose’s right to undergo genetic testing, this decision highlights the extent to what Huntington’s disease is a family disease. Sometimes, a dose of selfishness is needed to pursue the genetic test, but doing so can have repercussions for one’s family members, which makes the decision to test all that much more difficult.
Rules of 50/50 Chances not only explores the role of family, but also friendship in the Huntington’s disease experience. Rose’s best friend Lina is always present to offer a listening ear and supportive advice while her friend decides whether or not she wants the test. In one scene, Rose is finding it difficult to cope with her college decisions and her desire to protect her mother. Lina reminds Rose: “You’re not required to sacrifice every kind of fun because you have a sick parent.” (Page 137). Lina’s character is necessary for reminding Rose that, while she is dealing with a challenging family disease, it does not need to dictate her life. This reminder of autonomy and control over one’s life is a valuable reminder for young people affected by HD.
Towards the end of the novel, Rose pursues genetic testing. She visits her family’s doctor, Dr. Howard, to discuss possible results. As Dr. Howard explains:
“If your test is negative, if it shows that you have between ten and thirty-five repetitions of the DNA bases CAG on the fourth chromosome of the huntingtin gene, you are in the normal range and will not develop HD. If you have more than thirty-nine repetitions, you will develop HD at some point in your life. And between thirty-five and thirty-nine—”…”I know,” I interrupt. I’ve read all this online. “It’s considered borderline. I may or may not develop the disease.” Certain uncertainty. A lifetime of questioning every decision I can’t make immediately, every time I slurp my soup.”
“That’s right. Rose, really, speaking as a physician with a huge amount of experience with HD patients and families, I’d advise you to wait on this. You’re seventeen. Even if you had a positive test result, it will be years before you develop symptoms of HD. Put it off at least a few more years. Consider it then, when you start thinking about a family.” (Page 175)
Dr. Howard is doing his best to counsel his young patient. While Rose eventually sees a genetic counselor to help her through the process, Dr. Howard reveals his bias towards young people testing. While this viewpoint may not be helpful to Rose, it does highlight the conflict a physician might face when guiding a young person, or anyone for that matter, through such a harrowing life choice. Considering the rates of suicide in the Huntington’s disease community, a doctor might feel hesitation to recommend a genetic test that may send an individual into depression or worse. Furthermore, he requests that she reconsider the test when she wants a family. At that point, she may consider whether or not she wants to risk passing the gene on to children or if she wants to pursue alternative methods that would eliminate the risk of inheritance through in-vitro fertilization.
At the end of the novel, Rose resolves many of the dilemmas she introduces at the beginning of the text. She learns how to accept love from the boy that challenged her thoughts on romantic relationships throughout the novel. Rose decides which college to attend. She makes a final decision on her genetic testing. Ultimately, Rose acknowledges that, while her family was handed an unlucky genetic sequence, it does not have to dominate her life. Whichever decision she makes, Rose knows that Huntington’s disease may influence her life, but HD will only consume her if she lets it.
K Powers 2016