***Note: this review assumes that you've read the book.***
One-sentence summary. This is a story with a last-minute twist that I found offensive on two levels: first, for diminishing the experience of people who have genuine chromosomal abnormalities, and second, for throwing an important adult character under the bus in the interest of writing a "HEA" ending.
The plot. (Full spoilers.) Madeline has a condition called severe combined immunodeficiency, or SCID. It's also known as "bubble baby disease," because patients--usually diagnosed as infants--are vulnerable to bacterial, fungal, and viral infections, so they are sometimes raised in a sterile environment. Don't research SCID if you read this book, though, because you'll wonder why the author seems to make so many medical mistakes about the disease. You'll wonder why Maddy didn't google her own condition. You'll wonder why her mother never discussed a hematopoietic stem cell transplant. But I digress.
Maddy lives in a sterile environment with her loving mom and loving nurse, Carla. They take her vital signs, particularly her temperature, every couple of hours, every single day. Maddy takes classes online and, very rarely, gets to see an architecture teacher in person, after he has been "decontaminated." Maddy's mother is also her doctor. Maddy's brother and father were killed in a car accident, and she and her mother have only each other now. Enter the new boy next door, Olly. The only thing keeping Olly from being a by-the-book Manic Pixie Dream Boy is the fact that his family is troubled: his dad is abusive to his mom, his sister seems to be smoking herself into an early case of lung cancer, and Olly has been trying to protect them both. Olly and Maddy meet cute, as far as the "bubble" will allow--the first, mimed interaction through the windows of their houses involves a bundt cake. Subsequent interactions take place over e-mail and instant messaging. Carla allows the two kids to see each other secretly, by putting Olly through the decontamination procedure when Maddy's mom isn't home. Maddy and Olly end up kissing. Later, Maddy impulsively runs out of the house to Olly after he has been beaten by his dad, which unravels the secret of the rendezvous they've already had. Carla is fired. A new nurse--who is a two-dimensional, throwaway caricature--takes Carla's place. Maddy decides to run away to Hawaii with Olly, germs be damned. She lies to Olly that she has found an experimental medication that will help her immune system, and says she has ordered a supply from Canada. He allows himself to believe her. They have a blissful couple of days and then she gets sick. Her mother flies out to fetch her, discharging her from the hospital "against medical advice." The doctor who treated her in the Maui ER writes an e-mail to Maddy, confidentially telling her that she doesn't think she has SCID: she has none of the expected lab findings (attached to the e-mail) and it's not usual for a parent to be the doctor in charge of her child's case. Translation: your mom seems to be making your diagnosis up. The doctor encourages her to get herself checked by another doctor. NOW we know why Maddy is eighteen in this novel (and somehow still studying high school classes, despite being so bright): it's to allow her the medical freedom to get a second opinion, and to allow her to run away from home to join Olly in the Wide World when she discovers her mother's lie.
The premise was touted as original by many readers.
Hasn't anyone seen John Travolta in The Boy in the Plastic Bubble? This premise has already been written--in a movie loosely inspired by the true store of David Vetter
The book presumes you know nothing about SCID. I suppose you could argue that Ms. Yoon gives hints that Maddy is not actually suffering from severe combined immunodeficiency, and in this way she subtly prepared us for Maddy's mother's betrayal. But I would argue that these aren't really hints, because they involve specialized knowledge that Maddy doesn't impart to us in her first-person account, and that the average non-physician wouldn't know. The reader instead assumes that Ms. Yoon's research was sloppy. For instance, why doesn't Carla (or the architect who visits, or Olly) have to wear surgical masks or gloves? Even if they're "decontaminated" (which seems to involve pressurized air jets only...what?), they're still wearing layers of their own clothes, and still could have bacteria, fungi, or viruses in their mouths or noses. What if they sneeze? And there's the fact that Maddy's mother never talks about a bone marrow transplant, which is a possible cure. Then there's the diagnosis itself: the most common form of the disease is an X-chromosome-linked recessive mutation, which means boys are affected and girls can only be carriers. That means Maddy has a different, much rarer form, like ADA deficiency. Wouldn't she have googled the hell out of her diagnosis? And wouldn't she tell us or Olly a little bit about it? Wouldn't Carla have researched it? There's also a kind of confusion between allergy and SCID: with SCID, foods have to be sterilized to eat them (David Vetter ate all canned foods). Maddy uses the word "allergy," and her foods are restricted and bland, but not obviously sterilized. The house itself is a feat of imagination: there's no way to have people come and go in a home environment and have it remain absolutely sterile. And that greenhouse room! The plants are grown in soil, not Aeroponically or hydroponically--is that sterile?
Twist! The character is not actually suffering from this condition. But don't sweat the medical inconsistencies, because Maddy doesn't actually have SCID. Nope. It turns out it was an invention (more like a fear gone out of control) of her mentally-ill mother--the same mother who adores her and is her best friend and seemingly normal for 80% of the book.
Where is the sensitivity to people with chromosomal abnormalities? If the premise of a book is that the main character has a chronic illness or chromosomal abnormality, it seems highly disrespectful to all people who live with illness to magically make that condition disappear so that your character can have a "happily ever after" ending. The twist that Maddy's condition was imagined by her mother completely diminishes the importance of the novel, and moves it into the category of...of what? The more I think about it, the more I can't even say it's a sweet romance, but rather it's a disingenuous betrayal of the reader's trust, with no respect for illness or disability. Did Ms. Yoon and Alloy Entertainment think they wouldn't be called out for this because SCID is so rare? And did they think that by having Maddy's doctor declare her otherwise healthy immune system "juvenile" because it has never been challenged, and wringing his hands about what will happen if she exposes herself to pathogens all at once, we'd somehow think she was still "sick" enough to count?
Throwing the mother under the bus. Maddy's mother is depicted as loving and Maddy's good friend. She's portrayed as sometimes shrill and highly protective, but she's not portrayed as mentally ill. She seems to function in the wider world--at least we presume she does, since she's not in the house during the day when Carla is there. The hysterical, overprotective, and ultimately passively abusive cloistering of her daughter doesn't fit in with the character we know in the first part of the novel. The twist feels deus ex machina, and the mother's "hidden" mental illness is the means of achieving it.
A pet peeve: how sick teens really behave. A member of my extended family suffers from a sometimes debilitating chronic illness. He never, EVER calls himself "sick" unless he's actually in bed, laid low by his condition. The rest of the time he craves a normal life, and he wants others to consider him normal and deal with him without pity. I find it implausible that Maddy, who actually feels well, would refer to herself as "sick" to other people--or that she would even think of herself as "sick" in her own thoughts, rather than think of herself as being vulnerable to sickness. "I wish I didn't have this genetic anomaly that keeps me from normal activities" is a much different thought from a young person than, "I wish I weren't sick."
I listened to this book in audio, and when I got to the end I was surprised to hear the narrator say, "Text copyright 2015 Alloy Entertainment and Nicola Yoon
." Alloy Entertainment is a book packager. This means Ms. Yoon
got a flat fee (and no subsidiary rights) to write someone else's "hooky" idea. It means that in exchange for her big break she got a small sum and no royalty rights. It means she won't see a penny of any movie rights. It means a committee might have even helped her to write the outline (a common way of working at Alloy). This is Ms. Yoon's debut, and I'm sorry that it had to be with a book packager. Her prose is quite nice. Maddy's voice was authentic. Olly's and Maddy's banter was fun. But the fact that it's an Alloy production explains a lot to me. It explains the strong "hookiness" of the book, it explains the commercial grab for an unrealistic and carelessly offensive "happily ever after," and it explains the incredible marketing push that put this book on the bestseller list.