In Lucy Frank’s Two Girls Staring at the Ceiling, Chess has much to celebrate in her life: she loves running, she’s got great friends, she looks forward to her 17th birthday—and then there’s the geeky, guitar-playing boy who serenaded her on an island on a summer night.
But right now Chess is in the ER, and she can no longer ignore or hide all the scary, embarrassing symptoms she’s struggled with for years, or for that matter the memory of the awful turn that romantic summer night took. What happened to Chess was so physically and emotionally distressing that she can’t even bring herself to share it with the reader, but it spurred her hospital admission and diagnosis with Crohn’s disease, a chronic illness affecting her digestive system. Her mum, determinedly upbeat, gets busy telling everyone they know the news, faster than Chess can absorb it herself. When friends visit, they pointedly look away from her naso-gastric tube and other medical paraphernalia. The only person who might understand what Chess is going through is Shannon, the girl in the next bed, who is as loudly and fiercely assertive as Chess is withdrawn and overwhelmed. Can they find common ground and support each other?
Crohn’s and other bowel conditions are enormously taboo. While the media profile of Crohn’s has increased in the 25 years I’ve had the condition, it’s still common to hear stories of people who’ve been diagnosed without ever having heard of it before. Socially and in the media, mentioning bowel issues often seems permissible only in the context of crude, shaming jokes, which adds to our self-consciousness and makes coming forward for help from doctors, or getting ongoing support from family and friends, far more difficult than it should be. And when you do acknowledge such a diagnosis, there are new pressures to handle it in the “right” way, especially when you’re young. This brings an intense scrutiny, particularly of your eating habits and bodily functions, which is particularly hard to take as a teenager with a growing need for privacy and autonomy. All of this makes the author’s accurate, open depiction of Chess’s symptoms a rare and progressive example of how to treat bowel disease in fiction.
When I started this book I was worried that it would set up a comparison of “good” and “bad” ways to be a chronically ill teenager. During my many hospitalisations for Crohn’s when I was younger, I was very acquiescent, but also terrified of pain, and I needed a lot of reassurance. Some clinicians treated my reluctance to go through terrifying procedures as if I were just rebelling for the sake of it—being stereotyped because of my age and sex was a common experience. Likewise, when Chess’s naso-gastric tube comes out by accident, it’s assumed she removed it deliberately, despite what Shannon calls her “meek” approach to the doctors’ endless tests and questions. It’s clear that, when you’re in what Chess calls “Sickland,” doing as you’re told won’t always save you from judgment.
By contrast, Shannon’s response to both doctors and disease is confrontational (“We don’t take stress. We give stress.”), but the narrative never condemns this. There’s a popular media/culture narrative that serious illness produces sainthood, especially in the young, but Shannon is allowed to be loud and profane when she feels her needs aren’t being met. The staff chide but ultimately support her, and when her difficult family life intrudes on the routine of the ward, it’s met with understanding. During my own hospital admissions, I met girls who struggled the same way I did, girls who managed to grin and bear it, and girls who raised their voices like Shannon. This novel understands that comparisons between coping styles are inevitable, but also that, like these two characters, we can be strengthened by each other’s approaches and experiences.
Another thing the book does really well is to convey how a kid’s diagnosis with a serious condition becomes the lightning rod for any existing problems. When her relatives visit, their discussion of her illness becomes an excuse to criticise Chess’s mother and the family’s tendency to gloss over problems. Her family’s issues don’t take over the book, but it’s clear to us that she is coming from a complex situation and that this complexity will still be there when she leaves hospital, and must navigate her life with a new diagnosis.
Teenagers’ bodies are already battlegrounds in our society and on a personal level, and I really related to Chess’s shifting experience: she’s been unhappy with her weight in the past, then found a new accommodation with her body through running, and now she has to get to know it all over again as the Crohn’s makes her weight drop. Having Crohn’s in your teens can mean you go from worrying about whether you’re growing in all the right ways to worrying about whether you’ll grow at all.
In one of the novel’s most powerful scenes, Chess blocks out a horrific intubation procedure by remembering the plans she and her friends made to perk up their social lives this year—refreshingly, it’s clear that they’re not the coolest, most confident, most different or most anything teenagers: they’re just trying to get by and have some fun.
This is a book about the divisions that spring up between you and other people when you’re chronically ill, symbolised by the unusual storytelling style: the book begins with an intro explaining that the line down the middle of each page represents the curtain between Chess’s bed and Shannon’s. We’re asked to read across the line, not down, and the line disappears when the curtain’s open or Chess leaves their shared room. For me this mostly worked smoothly, apart from the odd time when reported dialogue was on a side of the curtain I wasn’t expecting, but those instances only took a moment to figure out. I enjoy poetry, but if you’re not a fan, don’t let the billing of “a novel in verse” put you off—it’s more accessible than you may be imagining and the dialogue brings both girls to vivid life.
Two Girls Staring at the Ceiling is the book that I wish had existed when I was a teenager—when I didn’t think anyone would ever love my body, or that I’d ever be normal (what is normal, again?) or independent. My recurring thought throughout was, “Oh my god, someone wrote a book for me!” I hope that it finds many young readers to whom it will also be that book.
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I look forward to reading this! I rarely, if ever, comment, but I subscribe to the blog through email, and I’ve discovered a number of books through reviews here. I’m grateful. Thank you! I know it takes time and effort to create thoughtful reviews.
“Two Girls Staring at the Ceiling” by Lucy Frank seems like an interesting book to read. I can relate to having stomach problems. Not necessarily Crohn’s disease but the symptoms are very similar. This situation can be very uncomfortable to the point your social life may be shorted. The cause for Crohn’s disease is unknown, sometimes eating unhealthy food can cause this problem. When you’re a young teenager and is diagnose with a disease, it’s hard to understand why things like this is happening to you. I think it good when having a supporting family who is there for you doing hard times. Also, having someone who may have the same problem can help motivate you getting through the symptoms. This book seems good to read when trying to understand difficult situation and how to overcome circumstances. It express how Skim is handling her illness and how it’s affecting her and the people around her. I will read this book soon!
I love that there is a book about this. There are so many chronic illnesses that are simply not talked about in society. This is a wonderful step forward in creating a safe space for those who struggle with chronic illnesses. Some people lose hope when they are facing a disease that has no cure, therefore books like this one allow a place for those to find comfort and a sense of normality in their disease. While it doesn’t change the facts of their disease, it goes a long in way in reassuring people that there are others that understand what they are going through and they are not alone.
Oh, I’m so glad to know this is good! And to know it’s about Crohn’s – I assumed it was about eating disorders when I processed it at my library, just from briefly scanning and seeing the terms “feeding tube” and stuff. As a digestive problem sufferer, I’m really excited to know that there’s a book about that experience. I wonder if I would have spoken up earlier as a teen if a book like this had existed for me.
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I’ve always hated the idea that everyone with a condition has the same experience, or responds to their condition in the same way. How ludicrous! We all process experiences in unique and varied ways, none of which are more valid or correct than any other, in and of themselves. It’s not all about the “saintly sufferers” traditionally portrayed in so many stories – people with different conditions, diseases and abilities are still people, in all their complex wonder! So glad to see this kind of representation slowly trickling into the mainstream – it’s about time!
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I was quite surprised that there was several pieces of literature with a disabilities and relating to my life experience as well. A year back or two, I suffered from an eating disorder, it was a struggle day in and day out. As a future Early Intervention Specialist, I would assist children with disabilities and health conditions to assist them to come to solution to their everyday lives.
As if being a young woman growing up in this time isn’t hard enough.. sheesh. I was absolutely intrigued by your post because I, too, suffer with digestive issues. They stem from my anxiety disorder, but I can understand the taboo you speak of. People don’t realize just how many others are suffering with digestive issues, have colostomy bags, etc. It is much more common than people think. I think anyone with a chronic illness could benefit from reading this, as well as the people who don’t could really become educated. The isolation that would come with living in the hospital long-term could only be exacerbated by family only talking about my diagnosis or other negativity. I am truly interested in picking this book up, thanks so much for spreading the word! I would love for people with disabilities to be able to be more open and talk about these things so others don’t feel like they have to tip toe around them.