Risk of Huntington disease compounds teenage uncertainty in “Rules for 50/50 Chances”

Friday, January 08, 2016

 

The following is a book review of the novel "Rules for 50/50 Chances" by Kate McGovern, released Nov. 24, 2015.

By Emmy Szymanski

With my senior year coming to an end, I find that my future following the relatively stable structure of college life is incredibly intimidating. I have a few plans in mind for after I graduate, but the scary truth is that I can’t be sure of any of those things. I know from experience that surprises can pop up at any moment and lead you down a different path. After having lived most of my life with a set schedule of classes and activities, it is difficult to imagine where I’ll be a year from now, and to me this is very unsettling.

Rules for 50-50 Chances Cover
 Image courtesy MacmillanIn Kate McGovern’s recent book “Rules for 50/50 Chances,” we see just how scary and uncertain the future can be. For protagonist Rose Levenson, choices she faces about her future during her senior year of high school include where to attend college and how to carry out her relationships. She is contemplating these things all while trying to figure out the most important decision of her young life – she must choose whether or not she wants to undergo presymptomatic genetic testing for Huntington disease, the sickness she is at risk for that is slowly killing her mother and breaking apart her family.

Although a fictional family, the Levensons are dealing with a very real and serious disease. HD is a fatal, neurodegenerative disease with no present cure that many describe as a combination of Parkinson disease, Alzheimer disease and ALS. HD affects more than just the individual who has the disease; the child of a parent with HD has a 50-50 chance of inheriting the expanded gene that causes the disease. There are 200,000 individuals currently at risk for HD, and genetic testing is available for those wishing to know their gene status.

In “Rules for 50/50 Chances,” Rose must consider how HD will affect the future she is envisioning for herself. Should she undergo genetic testing before applying to college? Will she stay in Boston or will she go across the country to pursue a career in ballet dancing? Her choices become even harder after spending more time with Caleb, who she met at the Walk for Rare Genes. Rose has never been in a relationship before, but she suddenly finds herself falling head over heels for Caleb, adding more stress to her senior year as she tries to navigate the dating world. But Rose finds something very comforting in Caleb’s outlook on life. As his mother and two sisters have sickle cell disease, Caleb understands the frustrations and struggles of having a genetic disease, and his insight plays an important role in the decisions that Rose has to make by the end of the book.

As the general public lacks awareness of HD, McGovern’s book is a way to give readers a deeper understanding of how this disease can impact a family and how it can shape the lives of those at risk for HD. Although not every case of HD affects a family in the same way, McGovern presents an accurate depiction of the shared struggles that the HD community faces. We see Rose’s mother contend with the progression of her disease, and we also see how the mother’s relationships with her husband and Rose are complicated as a result.

While some readers have criticized Rose for her indecisiveness in the book, I found this to be an accurate representation of the mindset of a senior in high school who is at risk for developing a neurodegenerative disease. At times she can be a bit lost or confused because her future depends so much on her HD status. She has this important decision to make about her future when most of her peers are just trying to figure out their plans for the upcoming weekend. We also see Rose switch between different roles that many young adults in HD families must fill – one moment she is a daughter but the next she must act like the guardian of her own mother. These scenes showcase Rose’s strength and courage, but also the love she has for her mother despite the complications brought on by HD.

Although this book might seem like a typical young adult fiction romance, it is actually much more. It shows the hidden reality that many people in the world are living as they must adjust their lives to cope with Huntington disease, and it brings to light the choices that those at risk for developing the disease must face. Additionally, this book is written through the perspective of a young adult who is trying to sort out her future and relationships, which is something that many adolescents can identify with. Whether the reader has never heard of HD or is at risk him/herself, Kate McGovern’s “Rules for 50/50 Chances” is a great story that raises awareness about HD and will give its readers a new perspective on preparing oneself for the future and trying to find happiness.