![\"Cover](\"https:\/\/disabilityinkidlit.com\/test\/wp-content\/uploads\/two-girls-staring-at-the-ceiling-300x388.jpg\")
<\/a><\/center><\/div>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what Chess is going through is Shannon, the girl in the next bed, who is as loudly and fiercely assertive as Chess is withdrawn and overwhelmed.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?<\/p>\nCrohn’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.<\/p>\n
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 \u2014 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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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 \u2014 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.<\/p>\n
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 \u2014 it’s more accessible than you may be imagining and the dialogue brings both girls to vivid life.<\/p>\n
Two Girls Staring at the Ceiling<\/em> is the book that I wish had existed when I was a teenager \u2014 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.<\/p>\n","protected":false},"excerpt":{"rendered":"I wish this book, featuring a girl newly diagnosed with Crohn’s, had existed when I was a teenager \u2014 my recurring thought throughout was, “Oh my god, someone wrote a book for me!”<\/p>\n","protected":false},"author":109,"featured_media":3611,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[62,522],"tags":[306],"genre":[5],"age_category":[8],"disability":[34,33],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3915"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/109"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=3915"}],"version-history":[{"count":2,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3915\/revisions"}],"predecessor-version":[{"id":6958,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/3915\/revisions\/6958"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/3611"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=3915"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=3915"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=3915"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=3915"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=3915"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=3915"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}