“Would knowing how you were going to die change the way you choose to live?” That question drove coauthors Jessica Koosed Ettingand Alyssa Embree Schwartz to write their YA, Fade into the Bright. From the opening pages, eighteen-year-old Abby’s voice pulled me in: “Obviously, it happened right before Christmas. Because don’t all extremely shitty things happen right around the holidays?” This refers to the news Abby and her older sister Brooke receive from their estranged father. In his brief letter, they discover he’s tested positive for Huntington’s disease. The girls have a 50/50 chance of also carrying the gene for this fatal degenerative brain disorder (described as Alzheimer’s, Parkinson’s, and ALS all rolled into one). Typical onset happens between your thirties and fifties.
Both sisters decide to undergo the required six-month pre-testing genetic counseling. Older sister Brooke tests negative, but Abby’s not so lucky. Suddenly, her plans to attend college—and do pretty much anything else with her life—seem futile; Abby escapes to a remote part of Catalina Island to stay the summer with her aunt. (Though I live in Los Angeles and have visited Catalina, the book’s setting provided me with scenery I had not experienced: “rugged and rustic, completely removed.”)
The story unfolds, alternating between chapters in the present day and those flagged as “before.” I like the designation of “before” because it’s true, when something life-changing happens there is that moment before it happened, then everything else follows. Abby’s ups and downs feel real as she wonders what to do while she waits for symptoms to appear. A job at the beach keeps her busy enough to keep panic mostly at bay, but brings with it the complications of whether she should (or could) tell her new friends about all of this, and what to do when she starts falling for her charismatic and attractive coworker, Ben.
The heart of this story revolves around family and how this disease brings people together, pulls them apart, and how to live with everyone’s results. Sister dynamics can already be complex; add in Huntington’s and a layered, emotional story is born. As Abby says about this disease, “It tells you your ending, but leaves out the important parts, like the how and the when.” Still, the characters choose to move forward and, overall, the book feels inspirational.
Jessica Koosed Etting and Alyssa Embree Schwartz know a thing or two about relationships since they’re probably as close as sisters, having been BFFs for more than twenty years and cowriters for most of that period. Their seamless process works; Fade into the Bright is a beautifully written book about such a difficult topic. Huntington’s is near to Jessica because she has watched her family deal with similar situations to those depicted in the book. I’m thankful these writers brought awareness to this disease and the far-reaching impact of a diagnosis.
Welcome to day three! As one of the bloggers participating in the Sydney Taylor Book Award 2019 Blog Tour, I’ve had the privilege to interview author Rachel Lynn Solomonabout her terrific debut novel You’ll Miss Me When I’m Gone, an honor award winner in the teen readers category. Find out more about this week of enlightening interviews at the Association of Jewish Libraries website and at the official Sydney Taylor site. The full blog tour schedule is posted on the AJL blog and below if you scroll down following the interview.
PUBLISHER’S SUMMARY OF YOU’LL MISS ME WHEN I’M GONE Eighteen-year-old twins Adina and Tovah have little in common besides their ambitious nature. Viola prodigy Adina yearns to become a soloist—and to convince her music teacher he wants her the way she wants him. Overachiever Tovah awaits her acceptance to Johns Hopkins, the first step on her path toward med school and a career as a surgeon.
But one thing could wreck their carefully planned futures: a genetic test for Huntington’s, a rare degenerative disease that slowly steals control of the body and mind. It’s turned their Israeli mother into a near stranger and fractured the sisters’ own bond in ways they’ll never admit. While Tovah finds comfort in their Jewish religion, Adina rebels against its rules.
When the results come in, one twin tests negative for Huntington’s. The other tests positive.
These opposite outcomes push them farther apart as they wrestle with guilt, betrayal, and the unexpected thrill of first love. How can they repair their relationship, and is it even worth saving?
From debut author Rachel Lynn Solomon comes a luminous, heartbreaking tale of life, death, and the fragile bond between sisters.
INTERVIEW WITH RACHEL LYNN SOLOMON
Good Reads With Ronna: Please tell us what the source of your inspiration was for writing You’ll Miss Me When I’m Gone (Simon Pulse, $17.99 + 12.99, Ages 14+)?
RLS: Thank you for having me on your blog! As a kid, I remember watching a couple TV shows that centered on genetic testing, and the idea of being able to know your fate, to an extent, stuck with me. Years later in early 2014, I was doing some random Internet research, looking for something that might spark a book idea. I landed on a page about Huntington’s disease, which I knew a little about. What stood out to me was the fact that a child of a parent with Huntington’s has a 50/50 chance of inheriting it, and I wondered: what if twin sisters received opposite results?
GRWR: Your bio says you write about ambitious, complicated, sometimes unlikable girls who are trying their best. Can you please expand on that in reference to your main characters, Adina and Tovah, the 18 year-old fraternal twin sisters who do not get along?
RLS: Absolutely! I firmly believe we don’t need to like the characters we read about — we just need to relate to them. Likable characters, in fact, are often quite boring to read about. Rule-following characters who always make the right decisions, who never hurt anyone’s feelings…not realistic, for one, and not as interesting as a reader or writer. Furthermore, in fiction, male characters are often given much more “permission” to be unlikable. Their flaws are more easily forgiven.
In YMMWIG, Adina and Tovah aren’t bad people, but they make mistakes, they hurt each other, and they occasionally sabotage themselves. But they’re trying, and they’re relatable (I hope!), and at the end of the day, those are the kinds of characters I’m always going to gravitate toward.
GRWR: Do you share any qualities with your main characters aside from Adina’s love of Siren red lipstick?
RLS: There’s a bit of myself in all the characters I write. While I don’t play viola like Adina, I grew up playing piano and guitar, and in high school, I was a stereotypical overachiever like Tovah.
GRWR: What are your thoughts about the need for Jewish authors to write about more than just Holocaust stories despite the need for those to continue being told? And what kinds of books would you like to see written?
RLS: My major thought about this is: YES. We need stories about all kinds of Jewish experiences. I’ve mentioned this in other interviews, but growing up, I truly believed we only had one story to tell, and that story was the Holocaust. And that’s just devastating, to think your entire culture can be summed up by a tragedy. It’s why it took me so long to write Jewish characters of my own — while YMMWIG was my first published book, it was my fifth completed manuscript since I decided to get serious about writing. It was also my first with Jewish characters.
I would love to see more historical novels featuring Jewish characters that don’t center on the Holocaust. IN THE NEIGHBORHOOD OF TRUE by Susan Kaplan Carlton, which comes out in April, is a great example of this, and I highly recommend it! I’d also love to see more intersectional Jewish stories like YOU ASKED FOR PERFECT by Laura Silverman, coming out in March, and COLOR ME IN by Natasha Diaz, coming out in August. Aside from that, more contemporary stories about Jewish teens simply living their lives while also being Jewish — whatever “being Jewish” means to them.
GRWR: Do you feel that books featuring Jewish protagonists and teens tackling illness fall under the diverse books heading since they are so underrepresented and often stereotyped?
RLS: This is a weighty topic, and one I’m still grappling with. Judaism occupies an interesting space in diversity discussions. I’m keeping a list of 2019 YA novels by Jewish authors and with Jewish protagonists, and I have only 14 books on that list. It’s so underrepresented in YA, and yet I’ve had a trade review insinuate Judaism isn’t diverse. Jewish friends writing Jewish characters have asked me whether their book “counts” as diverse. Conversely, one review told me I made my characters Jewish “for diversity points.” To me, Jewish books are diverse books, and I plan to continue advocating for them in the book community.
GRWR: Your YA novel tackles a tough topic of a mother slowly succumbing to Huntington’s disease as her teen daughters witness the decline. Also, early on in the story, one of the twins will learn after genetic testing, that she will get the disease, too. Your second novel also deals with a character needing a kidney transplant. What compels you to write about characters coping with illness?
RLS: I’m drawn most to topics that interest me — with YMMWIG, I wanted to learn more about Huntington’s disease and genetic testing, and with OUR YEAR OF MAYBE, which deals with the aftermath of a kidney transplant, I was curious about organ donation. Curiosity is a huge part of my writing process. My background is in journalism, and I love research, and writing is such a magnificent way to learn more about the world.
With regard to illness, specifically, I wanted to write characters who are not defined by their illness. In YMMWIG, Adina and Tovah’s mother is suffering from Huntington’s. It was important to me that Huntington’s was not her sole defining characteristic. She enjoys her job as a teacher, old movie musicals, and knitting, and she has a meet-cute backstory with the twins’ dad. In OUR YEAR OF MAYBE I focus more on the aftermath of the transplant and how it affects the two protagonists’ relationship. I aim to write sensitive portrayals of illness where the illness is a piece of the story but not the entire story.
GRWR: Of the two sisters, Tovah is the practicing Jew who keeps kosher, studies Torah and observes Shabbat along with her parents. It was encouraging to read a YA novel featuring Jewish main characters and their perceptions navigating life in a predominantly non-Jewish school and world. Was this your experience too?
RLS: Thank you! Yes — I was one of only a handful of Jewish kids in my Seattle suburb. I actually don’t remember meeting other Jewish kids outside of temple until middle school. And it wasn’t until college that I found more of a Jewish community — I took a year of modern Hebrew, I joined Hillel, and for a while, I attended services every Friday. These days, I am more secular, but I’m happy to say I have close Jewish friends for the first time in my life, which I’ve realized is so incredibly important, especially in a world that often makes us feel like outsiders.
GRWR: Adina can be cruel, jealous, socially aloof and manipulative, often using her beauty to control guys. Is it easier to write a more likeable character such as Tovah or one who’s not so likeable?
RLS: That’s a great question. I’m not sure what this says about me, but Adina was much easier to write than Tovah! It might be that I’m more similar to Tovah, so writing Adina allowed me to get more creative. To this day, her voice is the clearest of any main character I’ve written.
GRWR: Tovah is a neophyte when it comes to sex while Adina has been sexually active since age 14. Tovah myopically dreams of attending Johns Hopkins to become a surgeon while Adina dreams of playing viola in an orchestra. One incident four years earlier has shattered their tight bond. Sisters yet complete opposites and strangers. What would they or anyone for that matter have to do to become close again and repair the wounds?
RLS: I’ve never experienced a rift quite like theirs, but my sister and I fought constantly growing up. It’s hard to admit you did something wrong, but I think that humility is the only way to at least begin to repair a broken relationship. I’m not sure if it’s something that gets easier as we grow up and grow older, but I know it’s especially difficult as a teen.
GRWR: The twins’ story is told through alternating POV which works so well. What do you like about this approach and what other YA novels using this dual POV have you enjoyed?
RLS: Thank you so much. I felt strongly that this was the only way the book could be told — each sister is a full person but only half the story. It was the same with OUR YEAR OF MAYBE. The book explores the aftermath of a kidney transplant, complicated by the fact that the donor is in love with the recipient. The book doesn’t work unless we have both POVs and understand both characters, whose arcs are so closely entwined. Some other dual POV books I love: I’LL GIVE YOU THE SUN by Jandy Nelson, JUST VISITING by Dahlia Adler, HOW TO SAVE A LIFE by Sara Zarr.
GRWR: I found it hard to say good-bye to Adina and Tovah. How do you feel upon completing a book?
RLS: It’s been an adjustment! In the past, my manuscripts felt like living documents — I could open one up and tweak a sentence any time I wanted. But now, the book gets to a point where I have to be done messing with it. It’s hard for me to say goodbye, but it’s heartening to know that the book is done because it’s going out to readers who will be able to experience it for the first time.
For anyone else who’s interested, I wrote a “five years later” short story about Adina and Tovah that originally went out as part of a preorder campaign. It’s available on my website here for anyone to read: https://www.rachelsolomonbooks.com/extras/. There are some sad moments, but I hope it provides a bit of additional closure!
GRWR: What other irons do you have in the fire?
RLS: My second book, OUR YEAR OF MAYBE, came out last month, and I have two more YA novels contracted through Simon Pulse. My third, a romantic comedy, will be out in the summer of 2020. It takes place in 24 hours on the last day of senior year, and follows two rivals who realize, as they reluctantly team up to win a senior class game, that they might be in love with each other. While it’s lighter than my first two books, the two main characters also confront anti-Semitism in a way I haven’t written about before.
GRWR: Is there anything I didn’t ask that you’d like to mention or call to readers’ attention?
These questions were wonderful — thank you for again having me!
2019 SYDNEY TAYLOR BOOK AWARD BLOG TOUR
SUNDAY, FEBRUARY 10, 2019
Emily Jenkins and Paul Zelinsky, author and illustrator of All-of-a-Kind Family Hanukkah
Sydney Taylor Book Award in the Younger Readers Category
At Out of the Box at the Horn Book
FIVE FEET APART
Written by Rachael Lippincott
With Mikki Daughtry and Tobias Iaconis
(Simon & Schuster BYR; $18.99, Ages 12 and up)
In Rachel Lippincott’s superb novel, Five Feet Apart, with its PG13 film version releasing in March (starring Cole Sprouse and Haley Lu Richardson), we’re introduced to the growing love story of two teen cystic fibrosis (CF) patients. Stella has been a CF patient for most of her life. She seems complacent and at ease from knowing all the nurses, every corner of the hospital, and having a precise routine and arrangement for her medical cart. Her habits at the hospital seem invulnerable to change until she meets Will, a reckless newcomer who also has CF.
As is the rule, CFers must stay six feet apart from each other to avoid contamination. For Stella, being close to Will could cost her the new set of lungs she’s awaiting on the transplant list and the promise of a new life. However, with the couple spending more time together, the six-foot apart rule becomes challenging to maintain, even for rigid, routine follower Stella. But if they can never touch, can they still love each other from a set distance? Or can they safely bend the rules, take away one foot but maybe tread in dangerous territory? Will it make a difference?
Lippincott’s novel is an exciting emotional rollercoaster with elements of hope, fear, and love that intertwine seamlessly. Lippincott does a great job conveying the longing between the two patients. She also includes diverse characters and family relationships that are not usually portrayed in novels that I read. If you loved books like The Fault in Our Stars or Everything, Everything, then you will want to read Five Feet Apart. Maybe, like the main characters, you too will find it hard to remain five feet apart from this great read.
Reviewed by Rachel Kaufman
Rachel Kaufman is a current sophomore studying communications at the University of Southern California. She’s passionate about books and hiking with her dog, Scout. Rachel enjoys how books reshape her imagination of the world around her. Rachel knows firsthand how important books are in aiding children’s futures, working with a reading program, Reach Out and Read, by reading, organizing, and donating over 200 children’s books. In her free time you can find her either reading or thinking about what she might read next.
Madeline Whittier has read more books than you, but she hasn’t been outside her house for as long as she can remember. The protagonist in Nicola Yoon’s #1 New York Times Bestseller, Everything, Everything, lives an air-locked, filtered existence, with no outings and virtually no visitors, because she’s “basically allergic to the world.” She has Severe Combined Immunodeficiency, or “bubble baby disease.” While she could have grown to be a weird or bitter eighteen-year-old, it’s clear from the funny drawings and comments with which she annotates her life that she has remained sweet, optimistic and thoughtful.
Since Madeline’s father and brother were killed in an accident when she was a baby, Madeline and her mom are almost everything to each other. Then Olly moves in next door, with his all-black wardrobe, his parkour litheness, and his off-the-wall sense of humor. Madeline realizes she won’t really have everything unless she can leave her germ-free house and be Outside with Olly.
I enjoyed the unusual format of the book, its short chapters that don’t necessarily follow each other, the hand-written notes and drawings. Appropriate as well as charming, the format reinforces how Madeline feels about herself: “If my life were a book and you read it backward, nothing would change.” Before Olly, her “life was a palindrome — the same forward and backward.”
That being said, eventually sequence matters, and the real “Book of Maddy” — Everything, Everything — is different if read backward. In the interest of not giving away too much, I won’t tell you the questions the book made me ask beyond “What would it be like to be a bubble-baby?” But rest assured Yoon’s novel provokes other thoughts as well, about the nature of love, and risk, and life itself.