The Diverse Books Club theme for February was Living with Chronic Illness. The selections were a middle-grade novel about a boy with cystic fibrosis, Caleb and Kit, and Left Neglected, a book about a women who has it all and is doing it all until an accident leaves her with a traumatic brain injury. I enjoyed the middle-grade option this month more than the adult pick, though the adult pick had the unfortunate luck of being measured against Still Alice, an earlier book the author wrote.

Caleb and Kit
I looked up to the branches of the huge trees above me. Two long, thick trunks soared straight to the sky and then curved away from each other. I had heard once about trees that do that—live side by side but bend away to share the sun. They are buddies. They could stick close, but if they do, eventually one will struggle to tower over the other, keeping the weaker, unluckier one in the shade. Instead if they’re really friends, they’ll bend apart. I wondered if it hurt, twisting away from your friend like that.

Synopsis
Caleb is twelve years old and he’s just about had it with being treated like a baby or like a walking, talking illness. His father’s gone, distanced himself from the day-to-day trouble of addressing and treating Caleb’s cystic fibrosis while his mother has taken the opposite tack and hovers constantly, sunscreen in one hand and a snack in the other. As if that weren’t bad enough, Caleb’s older brother’s perfection hovers like a storm cloud—not only is Patrick healthy but he gets straight As, plays the violin like a virtuoso, and is so good he choses to spend his summer fundraising for cystic fibrosis charities. Having cystic fibrosis has limited Caleb’s universe of friends somewhat, leaving him feeling left out until, one day, he meets Kit in the woods. Kit doesn’t treat him like he’s about to break, she takes his limits in stride—pushing him at times to move past them without ever commenting on them or treating them like they are limiting her or their fun. As Caleb escapes into Kit’s fairy world, forgoing the summer camp he should be at, Caleb starts to see things about Kit’s life that don’t make sense. That maybe aren’t safe.

People First
In Caleb and Kit, while Caleb’s CF is a big part of the story, it ultimately isn’t the main point. This isn’t a story about a boy with CF whose family learns to stop babying him or who learns his own limitations. The heart of the story, the unknown that drives the book forward, is Kit. As an adult reader I could quickly put two and two together and see that Kit is being alternately neglected and physically abused by her mother. This is why she’s frantic to escape in fairytale, nearly always hungry, and seems to be living for days at a time in the woods with no food or real shelter. The book is about Caleb recognizing what’s happening and what he does about it once he knows.

I loved Vrabel’s choice to structure her book this way. I work with people with disabilities (mostly intellectual disabilities and/or mental illness) and there has been a movement for many years to use people first language—a person with mental illness, a person who uses a wheelchair, and person with autism. The idea is that the disability doesn’t define you and you’re a person first. Vrabel’s structuring her book around a non-disability plot and having a character who has a disability as a main character felt like people-first writing. I loved the unassuming message this sends to the child readers the book is aimed at about kids with disabilities being kids first, kids who have their own lives and things going on, kids who are to be included albeit with some minor modifications to activities.

Recommended
Caleb and Kit is a book I whole-heartedly recommend for middle-grade readers (or adults who enjoy middle-grade themselves). I can sometimes struggle with middle grade, to care what is happening next—in contrast Caleb and Kit was engaging and well written. I had no problem picking it up and wanting to keep reading. The characters are well developed and you really feel Caleb’s frustration at the ways his life has limited him. He makes some bad choices and is disobedient; however, those choices largely catch up to him with natural consequences that make the point that his choices were bad without it getting as intense as a book like Bridge to Terebithia, a book the forest scenes in Caleb and Kit called to mind. The themes and action are appropriate for younger middle-grade readers, so long as the adult is prepared to discuss the existence of child abuse (nothing graphic).

Notes
Published: September 12, 2017
Author: Beth Vrabel (@authorbethvrabel)
Date read: February 6, 2018
Rating: 4 stars

Left Neglected

The first step in my recovery is to become aware of my unawareness…

Synopsis
Sarah Nickerson is living life at break-neck speed, working eighty-hour work weeks and mothering three children. Until suddenly the multitasking catches up to her, causing an accident that leaves Sarah with “left neglect”—a brain injury that causes her to entirely forget her left side even exists. As Sarah trains her brain to pay attention to a part of herself she’s never had to focus deliberate energy on, she is also forced to reckon with other areas of her life left long neglected, including her relationship with her mother.

Kind of a Niche Author
I was explaining the plot of Left Neglected to a coworker I talk books with and was explaining the general plots of some of Genova’s other books, including Still Alice. He commented that writing fiction books that center around brain disorders is sort of a weird niche. Admittedly, this hadn’t really occurred to me—I read a lot of Lurlene McDaniel tragedy-porn as a teenager so having an author write only about people with cognitive-related disorders didn’t strike me as terribly strange. My coworker’s comment prompted me to look up Lisa Genova—interestingly, she has a PhD in neuroscience from Harvard. Her other books have featured characters with early-onset Alzheimer’s, Autism, Huntington’s, and (in March) ALS.

This background certainly informs her writing—the science of her books seems well researched and not gimmicky (she doesn’t go for the rare but more “exciting” complications for the sake of plot). Her writing hits a spot between being scientifically authoritative and devastatingly human. I still remember picking up Still Alice one night at 10pm thinking I’d read a few chapters and be lights out by 10:30. Come 3am, I’m awake and sobbing as I finish the last chapters. Genova’s characters in Still Alice and Left Neglected (her two that I’ve read) feel like people I know or, even, people who could be me. While I felt that part of the power of Genova’s writing is the strong sense of identification I had with her characters, I should say here that in these two books, the main characters are high achieving, Ivy-League educated white women so it was fairly easy for me to identify with them. I have no way to know this for sure, but I suspect her characters may not seem as relatable to others and I don’t want to suggest that everyone should be able to see themselves in these characters. Regardless, I do think that even if you cannot see yourself in Genova’s characters, she sets up their back stories with sufficient detail that you can see the devastation the Alzheimer’s and then the traumatic brain injury has on each of these women and their lives such that you can grieve with them for what they lost.

“Happy” Ending (only very vague spoilers)
Looking at Genova’s other work (and omitting the book with the character with autism because I have no idea how she handled that topic, having not read the book), Genova’s books are ones that can rarely end happily—Alzheimer’s, Huntington’s, and ALS are all progressive and fatal, robbing the person of memories and/or bodily control. These stories can end peacefully but almost certainly not with something that would be considered a “happy” ending. The finality of those diseases constrains the ending of the books.

This isn’t true for a traumatic brain injury and this may be why the ending suffered the way it did for me. You’d think that having to end a book with a terminal disease would be more limiting; however, it seemed to me that being forced to end a book happily—not in the middle, not as tragedy, but with a redemptive note—was more limiting on Genova’s writing.

I don’t disagree with the way Genova ended her book—I think she did the right thing by having an ending that demonstrated that people with TBIs can still have fulfilling and happy lives. This ending though, can be seen from a mile away. Genova sets up Sarah’s “having it all life” complete with eighty-hour work weeks and three kids –a life incompatible with a traumatic brain injury that leaves her with permanent deficits. Sarah’s life before is an almost textbook example of what it means to be a working woman—an archetype so established in her extremes that you see the injury coming because there’s no way this woman is going to be able to keep up this pace. After the injury as Sarah begins to find ways to live around her limits, here too, you see the end coming a mile away. Genova can’t end this book with Sarah being depressed and never getting off the couch again. And yet, setting up the foundation for the life Sarah will learn to find fulfilling and enough when the book ends requires some sign posts that are so obvious as to be marquees for the resolution.

Take It or Leave It
I loved Still Alice and would recommend it to anyone that is in a place where they can read about Alzheimer’s. (It’s not a book for anyone currently going through it with a loved one or someone recently diagnosed). Left Neglected keeps this same style and attention to detail. It did feel like it dragged a bit for me and I and the rest of Goodreads saw the ending coming. Those flaws aren’t deal breakers though. Left Neglected has Genova’s impeccable writing and a strong female character that I enjoyed meeting and spending some time with. It’s not a book I felt wasted my time; however, it’s not going to make my best-of list any time soon.

Notes
Published: January 4, 2011
Author: Lisa Genova (@authorlisagenova)
Date read: February 1, 2018
Rating: 3 stars