Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she’s going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington’s disease, the degenerative condition that is slowly killing her mother.
With a fifty-fifty shot at inheriting her family’s genetic curse, Rose is skeptical about pursuing anything that presumes she’ll live to be a healthy adult-including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.
Rose’s mother was diagnosed with Huntington’s disease when Rose was 12. She’s now about to turn 18 and finds it hard to make any decisions or see any hope for her future when there’s a 50/50 chance that she, too, will develop the disease. To call her “skeptical” is too light of a term. She’s incredibly pessimistic and scared to pursue things she loves because of the potential loss and disappointment that could come should she carry the gene. She thinks of her life in terms of maybe only having x amount of healthy years left, a thought process that has been paralyzing her for a long time, but finally jars loose other ways of thinking and living…. eventually.
Set in and around Boston, Rose meets Caleb at a fundraiser for rare genes diseases and research. Caleb’s mother and two younger sisters have sickle cell, something Rose thinks of as “a walk in the park compared to Huntington’s. It doesn’t even kill you anymore.” They start to hang out at an incredibly unstable time in Rose’s life. She’s debating getting tested when she turns 18 so she can find out if she’ll develop Huntington’s. She’s looking at colleges both near home and all the way across the country—though how can she leave home and leave her father and grandmother to care for her mother alone? Suddenly everything is converging at once. Rose’s mother seems to be getting worse just as Rose, a dancer, gets the opportunity to audition for her dream school, where she could potentially earn a full-ride scholarship. But she can’t stop thinking of what the results of the genetic testing might be. It’s a lot to try to figure out, so you can’t exactly blame Rose for sometimes being insufferably self-centered, secretive, and not exactly forthcoming.
Prior to this, the only things I really knew about Huntington’s were from reading various things about Woody Guthrie’s life. Through Rose’s mother, we really get to see how truly devastating and unpredictable the degenative disease can be. It is not easy to watch her mother stutter, lash out, break things, fall, and seem to be slipping away.
McGovern’s story also deals in many small ways with race (as her guest post from today touches on). Lena, Rose’s best friend, is Chinese. Caleb is African-American. Rose talks about being half Jewish. The characters have many smallish conversations about race. Rose tells Caleb she doesn’t even think of him as black. Caleb laughs at this and says to her, “If you don’t see me as black, maybe you’re not seeing me as me. Because I am black.” Conversations like this crop up again and again.
There are a lot of smaller threads to this story that round out who Rose is and what her life is like. We see a lot of her life as a dancer, little of her life in school, and how narrow her life has become at home. It seems she’s always dealing with something with her mother or waiting for something to happen or worrying about it. It’s a wonky time in her life and everything is viewed through the lens of this disease. Eventually, Rose has to decide if it’s better to know your future or to just wait and see what happens. She has to decide if the risk of eventual loss is worth the risk of being happy right now. And she has to decide if what she thinks she wants is the same thing as what she actually wants. Rose seems to not yet have put together that life is always uncertain and we’re not guaranteed anything, disease or no disease. She has to learn that everything is always a risk.
McGovern’s debut is a solid read. The unique details of the plot make it stand out from other books about teens dealing with various diseases. Caleb is far more patient with Rose than could reasonably be expected of him, but readers will cut the often frustrating Rose a break as they watch her deal with the current circumstance of her life. Strong families for both characters are a bonus. This should appeal widely to fans of contemporary YA who don’t want their romances too mushy or their sad books too dark. A smart and affecting look at the things we can and can’t control.
Review copy courtesy of the publisher
Publisher: Farrar, Straus and Giroux
Publication date: 11/24/2015