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.
About the Author
Kate McGovern has taught theatre and language arts to middle schoolers in Boston, New York, and London. A graduate of Yale and Oxford, she currently lives in Cambridge, Massachusetts, where she was born and raised. Rules for 50/50 Chances is her first novel.
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Rules for 50/50 Chances
By Kate McGovern
Farrar, Straus and GirouxCopyright © 2015 Kate McGovern
All rights reserved.
If you had a crystal ball, like in a fairy tale — or a magic mirror or one wish or whatever — would you want to know how you were going to die? Would you want to watch it happen, in slow motion, every day?
My mother is my crystal ball.
* * *
On Sunday I wake up to glass hitting the kitchen floor.
It's the Sunday before Labor Day, the last Sunday of my last summer vacation of high school. I have no ballet today, and what I'd really like to do is sleep late, then nothing in particular. No such luck.
It's a juice glass. I can tell because the sound is more like a tinkling-shatter than a heavy crash. My mother drops things with some regularity these days, so I've become aware of the particular cadences of different materials hitting the floor. This is a thin glass.
When I get down to the kitchen, my mother is standing barefoot by the sink. Her hands are shaking. And there's a glass, formerly used for holding juice, in shards on the floor.
"I'm sssuch an idiot," she says. "Sssorry." Her words slur gently, not a stutter but like her mouth is full of slick ice cubes, like they have more and more regularly over the last six months.
"It was an accident," I say. "Careful. You'll cut yourself." I bend over and pile a few shards in my palm.
My father pounds down the stairs in his towel, dripping from the shower. "What happened?"
"Just this fffool," Mom says. "Throwing ggglasses."
"That's my wife you're talking about. Don't call her a fool." He leans over and kisses her. "I'll get a broom." As he crosses to the pantry, he calls over his shoulder to me. "Get a move on, kid! Places to go, people to see! It's a beautiful day to walk for genetic research!"
Indeed. We've been walking for genetic research every Labor Day weekend since my mother's diagnosis, when I was twelve, which makes this my sixth Walk for Rare Genes. The walk is sponsored by an organization that does advocacy for something like seven thousand genetic diseases, most of which are too rare for anyone to particularly care about on their own. Unless, of course, you find yourself in possession of one, like we do.
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 billions of 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.
* * *
I shower quickly, and dig out a navy blue tank top to wear with jeans. Blue is the color of the day, because, you know, the whole genes/jeans thing. Even the rare genes ribbon is made of denim. I've gotta hand it to them, this organization may be representing diseases that affect only tiny groups of people around the world, but their marketing people know what they're doing.
Just as I'm rubbing down my wet hair with a towel, Dad pokes his head into my bedroom, knocking once as he opens the door. He's dressed head to toe in blue, too — blue T- shirt, blue jeans; even his Nikes have blue trim, but I think that's an accident.
"All set?" he says.
"Bells on, I assure you," I say.
"Look, I know you're not that psyched about this." He taps his fist against the door frame a couple times. "But it's important to your mother."
"Is it?" I'm pretty sure that at this point, Mom doesn't even care that we do this every year. Maybe she'd prefer to just sit in the backyard all afternoon and enjoy the nice weather without the fuss. Every time there's a beautiful day now, I wonder when it'll be the last day that Mom registers as beautiful.
The look on Dad's face makes me regret saying anything, though. A few years ago, I thought this walk was fun — joining all the other families in a sea of blue shirts and balloons, eating caramel popcorn and cheering all the way along the ten-mile route. Your feet hurt at the end, and that meant you'd done something worthwhile. There was a feeling of solidarity with all those other people whose lives had also been turned upside down by their own invisible bad luck.
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.
Still, I don't feel like bumming Dad out. "I'll be right down," I say, trying to soften my tone. He winks at me and disappears down the stairs.
When I find my family in the living room a few minutes later, Dad is loading bottles of water into a backpack and my grandmother is putting sunscreen on every visible inch of my mother and herself.
"Rose," Mom says, smiling at me, her mood already having shifted from our juice glass morning. "Ready?"
For the walk, maybe, Mom. Not for anything else.
* * *
When we get to the Boston Common, the registration area is already buzzing with blue-clad families. The organizers, recognizable by their enormous, spongy foam hats shaped like blue DNA double helixes, are chanting into megaphones: "Care about rare! Care about rare!" Across the grass, the starting line is marked by a huge, double-helix archway formed from blue balloons. There's a steel drum band playing some cheery Caribbean tune, and circus performers (in blue, obviously) walking on stilts and carrying signage advertising a free performance by Blue Man Group at the end of the day.
Even the sky is appropriately clad for the walk — bright blue, of course, tempered only by an occasional wispy cloud. The whole Eastern Seaboard is supposed to get slammed with a hurricane tomorrow, but today is beautiful. The air is unusually crisp for so early in September — there's no humidity, and it smells of freshly cut grass plus something like pipe tobacco. (I'm not sure it's really the smell of pipe tobacco — I don't smoke a pipe, obviously — but my dad used to when I was little, just every now and then on a nice fall evening, so that's what fall smells like to me.) It's hard to maintain an oppositional stance to this outing when the weather is so unrelentingly gorgeous.
Dad registers us, while Gram, Mom, and I stand around, taking in the scene. Or Gram and I do, anyway. Mom sits in her chair, looking mildly irritated every time one of us tries to fuss with something on her — her floppy sun hat, the pillow behind her back, the settings on her chair. Dad emerges from the crowd and passes around our T-shirts — all extra large, of course. Why do they only seem to order XLs and XXLs for these things? When I pull the T-shirt on over my clothes, it reaches my mid-thighs. My best friend, Lena, could probably find a way to belt this and make it look trendy.
"Right, so, we're in the ten a.m. kickoff group, so we've got thirty minutes until we need to head to the starting line. Anyone need a port-a-potty?" Dad asks. Gram, who's helping Mom into her blue T-shirt, waves him off.
I shake my head. "I'm going to find some orange juice. Want anything?"
Dad checks his watch again. "No thanks. Meet us back here in fifteen?"
I flash him a grim thumbs-up and wander off, trying to find a way through the crowd. By the registration tables, my eyes land on a young couple with two kids, one on foot and the other in a wheelchair, carrying a placard with a third little girl's picture on it. Blond curls frame a cherubic little face that looks almost perfect except that her features are slightly distorted — her forehead bulges out too much, her eyes protrude, her cheeks are distended. I look away.
* * *
The registration tables form a long border along one side of the park, and beyond them, there's just empty green space, where a few normal people are out for a nice Sunday morning walk (no doubt wondering how they ended up in this mess). I make a beeline for the normality.
"Hey there!" A guy a little older than me touches my arm as I try to get past the registration area. "Care about rare?" He grins at me. He's wearing a collared shirt under his blue T-shirt and one of those double-helix hats. I force a smile.
"I see you're here for the walk. Starting line's that way." He points, helpfully, in case I hadn't noted the giant balloon arch and multiple signs pointing in the opposite direction from where I'm headed.
"Right, I'm just — I was just getting some air."
He tucks his clipboard under his arm and takes me in for a moment, concerned. "The crowd's a little overwhelming," he says with an earnest nod.
"I guess, yeah."
"It's great to have so many people come out for this, though. Did you know that taken together, rare genetic disorders are one of the leading causes of childhood deaths in the world?" I didn't know that. "I'm Levi, by the way." He reaches out and practically grabs my hand to shake it.
"Can I ask you a favor?" he says, not waiting for me to introduce myself in return. "I'm short on volunteers handing out the ribbons over there." He gestures toward one of the tables. "Mind giving us a hand?"
I squirm. "Oh, I ... My family's waiting, you know? I'm supposed to be walking with them."
Levi nods. "Sure, sure, I understand. I just thought, you know, if you're not feeling the crowd ... I could use some help. No worries. Enjoy the day! Care about rare!" He gives me a little salute, and then saunters off into the crowd.
I stare out across the sea of blue, and for a second, I let myself wonder about all those people, about how their lives are like mine or not, and how much their genes dictate their every moment. Maybe it wouldn't be so bad to try something different for this year's walk.
"Hey, Levi!" I call after him. "Where are those ribbons?"
Levi gives me a big smile like he knew I'd come around, and introduces me to the lead volunteer at the ribbon table — a woman named Margaret — who explains that I'll need to pin the ribbons directly onto most of the children because they won't be able to manage the safety pins. I briefly wonder if we couldn't speed things up by handing the ribbons to the parents and letting them deal with the safety pin issue, but I don't say anything. Instead, I watch Margaret for a minute, grinning and calling out, "Care about rare!" as she waves ribbons at passersby. Then I plaster a smile on my face and follow her lead.
"Special delivery! Where do you want these, Marg-oh?" booms a male voice, coming up behind us. I turn, assuming it's Levi, but it isn't. It's a guy, my age-ish, carrying what I assume is another box of ribbons for the masses.
"Just put 'em back here for now," Margaret says, nodding toward our table. "Try not to leave the boxes someplace I'll trip over them, please, Caleb!"
The guy tucks the box of ribbons under the table and dusts off his hands. "All set." He notices me standing there and offers me his hand. "I'm Caleb, by the way."
"So I hear. Rose." His handshake is so firm that it's almost painful.
For a split second, I register that I'm surprised to see a black guy here, and then scold myself for it. There are plenty of hereditary conditions that are common in black families, I know, but I guess most of the people I've encountered so far through the Rare Genes Project have been white. I'm not sure what that says about the organization itself, but the realization makes my stomach twist a little bit with embarrassment.
Caleb is probably a foot taller than me, with a wiry build, an almost-shaved head, and thick, black plastic glasses — cute, in a skinny, nerdy kind of way. And the way he keeps his eyes on me, like we're going to exchange more than just our names, is disarming.
A kid tugs at my arm. "Hey! Can I have a ribbon, lady?"
"Lady! Who you callin' 'lady,' kid?" I tease, as I lean down to pin the ribbon on the little boy's shirt. He's probably six years old, pudgy-cheeked, and lacking in any discernible neck between the orb that is his midsection and the orb that is his head.
"You're a lady!" says Chubs, sticking his tongue out at me.
"Well, you're not much of a gentleman, are you?" I say, sticking out my tongue in return. Chubs lumbers off. When I straighten back up, Caleb's watching me and chuckling.
"What?" I ask, squinting at him.
Caleb shrugs, in a kind of casual-cool-attractive way. "Nothing, nothing. You have little siblings?"
"Negative. I just like kids." When I was in middle school I did the Reading Buddies program with the kindergartners. All I had to do was read Arthur books to a little girl named Annabelle for an hour every week, and she more or less thought I was the coolest person in the world. That's why I like little kids: they're uncomplicated.
Caleb leans against the ribbon table, his arms crossed. "Well, you can have my little sisters if you want them."
I laugh. "Uh, no thanks. My family is unwieldy enough as it is."
"Fair enough," says Caleb, taking a pile of ribbons from the table and coming around to stand next to me. "Mind if I join you for the ribbon-handing-out?"
"Are you trying to impinge on my ribbon territory, here?" I say.
"Clearly." He rolls one of the ribbons over in his fingers and chuckles. "Blue jeans."
"Got it, thanks," he says, grinning at me. "Not my first time at the rodeo, my friend."
Standing so close, I notice the gap between Caleb's front teeth. It's probably big enough to slot a quarter in, but in a charming kind of way. It gives his smile character. Over his left eyebrow, there's a small, wrinkled scar. Whatever his genetic oddity is, it isn't readily on show.
"Where'd you get that scar from?"
He puts a hand automatically to his forehead and rubs his eyebrow. "This one? Kicked in the face, school playground, age seven."
"Are there others?" I ask.
"You said, 'This one?' like there are others."
"Oh, right. A few. I guess I played rough as a kid. Damaged goods."
I start to try to say something clever, about how since he's volunteering at the rare genes walk I already assumed he was damaged goods, but I can't quite come up with the right words.
Levi reappears, carrying a megaphone in one hand and a walkie-talkie in the other. "Ribbon bearers, I beseech you to listen up!"
"Did he just say 'beseech'?" Caleb whispers, leaning toward me so that his shoulder is almost touching mine. The sudden shift in proximity bumps my heart rate up a notch.
"I'm pretty sure he did."
"I need to ask you a favor," Levi continues. "I've been asked to send a couple volunteers over to get some fresh boxes of T-shirts and bring them back to registration. Can I send you two?" he says, pointing to me and Caleb.
"Excellente," Levi goes on, without waiting for a response. "T-shirt boxes are in the main supply tent, which is thataway." He points across the Common to a huge white tent that looks like it could be harboring a college graduation or a decadent outdoor wedding. "Just take whatever they give you."
I check my phone and see that I have a text from Dad, wondering where I am. It's already ten o'clock. I send him a quick reply. I suspect he'll be fine with me volunteering instead of walking — that must count as showing my commitment to the cause — and sure enough, I get a text back right away: "Great! Love, Dad." He still hasn't learned that he doesn't need to sign his text messages.
Excerpted from Rules for 50/50 Chances by Kate McGovern. Copyright © 2015 Kate McGovern. Excerpted by permission of Farrar, Straus and Giroux.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
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Most Helpful Customer Reviews
This book had more substance than I was expecting. I knew going into reading it that it was about a young girl’s decision of whether or not to find out whether she has the gene for Huntington’s disease. What I did not know is that it is also a contemporary inter-racial romance. I was happily surprised. McGovern handled both subjects very well. Rose’s mother is slowly dying from Huntington’s disease, and since she’s almost 18, she can decide for herself whether or not to get tested for the gene. She’s an amazing ballet dancer, and she’s having trouble deciding on colleges since her future health is so unknown. She meets Caleb, an African America boy whose mother and two little sisters have Sickle Cell, at a rare genetic disorder fundraiser. I related a lot to Rose. She is a planner, and she’s very driven. I am almost certain that I would want to find out if I was in Rose’s position, but I can also understand how she could be so torn. Rose’s parents and her best friend, Lena, seemed very realistic. Caleb was adorable! And I appreciated all of the things McGovern said about race through Caleb. This book was timely and wonderful, and I need to find other works by McGovern. There was a lot going on in this book. I love a complex plot, and this book was more action packed than I was expecting, which was terrific. Contemporary romance alone is never enough for me, and even just the genetic disease plot could have been dull. The pacing was perfect. I didn’t love the ending, but otherwise I loved this book. http://opinionatedbooklover.com/review-rules-for-5050-chances/
This book is a stunner from beginning to end. Rose faces big, life-defining questions and handles them with an authenticity that is both heartbreaking and heroic. A supporting cast of parental figures and a love interest who encourages Rose not to wallow but instead face hard truths make this a must-read. This book will make you think and fill you up. It is months later and I am still pondering this book. One of my favorite reads.
A profoundly beautiful YA novel about love, loss and the ache of living.
Pros: Plot, characters, and relationships are very lifelike and well-written // McGovern's prose flows naturally and swiftly; she is obviously a talented storyteller // I learned a lot about Huntington's disease and trains (look up the California Zephyr if you don't already know what it is) // Overall narrative contains sophistication and self-awareness, despite Rose's lack thereof // Rose's family dynamic is beautiful and diverse; we experience the touching highs and all the dysfunctional lows // Ending ties everything together beautifully, and actually is the saving grace considering how prolonged Rose's petty narrative is, prior Cons: Rose is not the easiest character to like and relate to (condescending towards her friends, short-sighted, self-pitying) // There isn't anything romantic or clever about Rose and Caleb's relationship; it kind of just happens Verdict: Kate McGovern tackles tough topics like genetic diseases, race and class issues, the ugliness of growing up, and the uncertainty—and blessing—of not knowing, with poise, wisdom, and cultural sensitivity in her debut novel. This is the kind of YA book I would like to turn back time and give to my adolescent self: fairly clean, but far from naïve; never happy-go-lucky, but still optimistic. It taught me a lot, and made me reflect a lot, and I think teenagers of all ages and reading levels will feel the same way. Rules of 50/50 Chances challenges perceptions and preconceptions, depicts a genetic disease that is as rarely informed on as it is hideous, and demonstrates that love, whether romantic or familial, is never as tidy or as faultless as it seems—even in a young adult novel. While I did find Rose's character to be a headache as a whole, the uncommon yet well-executed plot will stick with me forever. Mindful, mature, and genuine to its core, 50/50 Chances is a book you should 100% take a chance on. Rating: 7 out of 10 hearts (3.5 stars): Not perfect, but overall enjoyable; would recommend, but borrow a copy before you buy! Source: Complimentary copy provided by publicist in exchange for an honest and unbiased review (thank you, Goldberg McDuffie Communications!).
I wanted to read Rules for 50/50 Chances because I am drawn to books about illnesses, and Rose is dealing with a mom with a genetic disease called Huntington's, It is progressive and makes body function, memory and personality changes. Rose has a 50/50 chance of getting the illness, and there is a test she can take to tell if she is going to get it. Symptoms don't start until 30s at earliest, but it is still hard. She is a ballerina and she wants to study that in college, across the country, but her dad also wants her to study something besides dance. I love Rose's personality. Yes, she has a hard time accepting how her mom is changing, her grandma that is living with them to help take care of her mom, and all of the constantly shifting dynamics with her family. Her struggles are easy to empathize with even if I don't have something equatable in my life. At a walk for rare genetic disorders, she meets a boy named Caleb. His sisters and mom has sickle cell anemia, so he understands the difficulty of sick family. He also gets the medical jargon, the uncertainty, and so many other things that Rose doesn't really talk about with many other people. They have a sweet relationship, cute conversation, and a good connection. It adds another twist that they are different races. I like the friendship between Rose and Lena, her best friend. They have that easiness that comes from years of friendship, but they have also been through lots of lows together. Lena's mom passed away, and soon after Rose's mom received her diagnosis. The character growth in Rose was great, and it was neat to watch her figure out what she wanted for her future. This didn't just include knowing about her genetics test, but also her ballet future, the possibilities for her relationship with Caleb, how her friendship with Lena would survive. But also how she could still be there for her family, and her mom who gets continues to get worse not only in loss of control of movements, but the change in her personality and memory. The ending was good but I also wanted to know a bit more about what she chooses and what her future holds for her. I totally understand why it left the way it did, with more understanding and a lot of hope for her, possibilities and acceptance. Source: e-arc from Macmillan via Netgalley Disclaimer: I received this book as an ARC (advanced review copy). I am not paid for this review, and my opinions in this review are mine, and are not effected by the book being free. Bottom Line: Intense ride with good characters.
Rules for 50/50 Chances is an eye opener of a book. Not only does it tackle hard hitting and heartbreaking issues of genetic diseases within families and how it can change everything, it also brings to light issues of race, desire, and what it means to make one’s own choices. The magic of Rules For 50/50 Chances is a subtle one – one that won’t hit you until you’re finished and thinking back on what you’ve just read. I am so grateful I got the chance to read this book – trust me, you’re going to want to grab a copy as soon as you possibly can. It’s worth it. This book is about a girl named Rose who is living with the possibility of being diagnosed with Huntingtons disease. Her mother has it, is living with it, and therefore, Rose has almost a fifty/fifty chance of getting it herself. Prior to starting this book, I had never heard of Huntingtons before. I’d heard of some of the other genetic diseases, like Sickle Cell. The majority of this book is Rose trying to figure out whether or not she wants to take the test so that she can learn if she will develop the genetic mutation that would lead to her ending up like her mother. Not only is her decision a difficult one, the process is stacked against her. Think about it for a second, if you had the chance to know you would develop cancer or some other disease, would you take it? Is knowing you are going to die worse than not knowing? Rose was a very interesting character. She’s a dancer, a ballerina to be exact. It was awesome. This book focuses heavily on the impact of genetic disease in a family, but there was also a lot of dance and focus on making your own choices. Some of my favorite scenes were when Rose was dancing, thinking about how she loved to dance, and watching the ballet. Dance is such an integral part of her life – and it is partially the reason she wants to take the test. Like I said, Rose was very interesting. She is stubborn, strong willed, but also very fragile and seemingly in need of attention. To be completely honest, despite how much I loved this book I have no idea if I actually really like Rose. She doesn’t seem to be able to grasp that other people have stuff going on in their lives, she’s always constantly playing the one-up game with those around her. She just doesn’t seem very empathetic, it’s just “me, me, me” all the time. Surprisingly, my startling dislike of the main character in no way affected how I feel about the book as a whole. She was the driving force, sure, but even with what I didn’t like about her she still told a captivating and gut-wrenching story. The relationships in this book are vivid, intense, and extremely emotional. The ones that tore me up the most was Rose’s relationships with her mother and father – her mother most of all. It ripped me into little, tiny pieces. Seeing Rose’s reaction to her mother’s degeneration was horrible – I think I had to put the book down multiple times to let myself cry. Now, you’ll have surely noticed by now that I didn’t bring up the romance aspect of this book – but I did that for a specific reason. The romance is there, but it isn’t really important to the story in the same way that Rose’s personal journey is. Also, I feel like the romance between Rose and Caleb causes more problems than it does good things. On top of that, it almost felt like it was a second thought – like it was hastily added in. The relationship was adorable at times, but it just didn’t feel genuine enough to hit as hard as it should