I got a Kindle recently (long story short – I need to be able to read in the dark) and have been randomly downloading and reading books that take my fancy. This unusual YA book, One by Sarah Crossan, tells the story of conjoined teenage twins, Grace and Tippi, and their experience of attending school (rather than homeschool) for the first time.
The whole book is narrated from Grace’s point of view and is written entirely in free verse. I thought that might make it a slow or labour-intensive read, but on the contrary it made the book a quick and easy read with some massive themes dealt with in few words. If you like our haiku project, I reckon you’ll love this. (Wink, wink.)
If you’d like to experience this book as it was intended, stop reading now. I’m not going to give away any endings, but even mentioning that one of the characters has cardiomyopathy is a pretty big spoiler, which is probably why I wasn’t aware that this book featured heart disease until I read it myself.
An even bigger spoiler is the news that it’s the heart of one of the conjoined twins that is affected, and this causes issues and symptoms for the other twin, whose heart compensates by taking on an increased workload. If this scenario has ever happened in real life (I’m not sure) then it certainly can’t have happened often, but I found lots within the book that resonated with my own experiences of heart disease, specifically heart disease in pregnancy – a very different situation from that of living as a conjoined twin, but having in common the issue of bodies co-existing and relying on some shared (or overlapping) resources.
Throughout the later sections of the book, there were little snippets of frustration and feeling that were maybe more universally familiar, for example the sense of unfairness (coupled with acceptance) that other people go through the same things you did without facing anything like the same consequences:
‘…and poor Shane’s still sick with the flu.’
trying not to feel resentful
or the millions of other people
whose hearts don’t die
because they get a little virus.One by Sarah Crossan, p.330
There’s also the issue (which might apply to anyone experiencing a medical procedure of any type) of the ownership and boundaries of the body in a medical setting; how medical consent is assumed to continue once it’s been granted and can be difficult to retract; how you can’t reverse certain physical changes once they’ve been made and the doubts a patient might have around that:
Without asking our permission, he presses his hands against
—our bellies, backs, and sides—
and it is plain to me
that we no longer
own our bodies:
we have entrusted them to these men and women
who will inflate us and
shape us and
slice us apart
and never stop to ask,
Are you sure?One by Sarah Crossan, p.361
Spoiler warning or not, I don’t want to give away any more about the plot, but if you’ve read One, I’d love to hear what you thought about it, especially in relation to your own experiences of living with a heart condition.
END OF SPOILERS – SAFE TO READ AGAIN!
You can see other examples of published writing about hearts/heart disease that I’ve been reading (or might read one day) in the “Books” section of the blog menu. If I’ve missed anything, do let me know so I can add it to the list. I’m thinking that it might be nice (some day!) to set up an online hearties book group, where a bunch of us heart patients can read books featuring hearts (diseased or otherwise) and share our thoughts and opinions about them, or just have a nice chat over a cuppa. What do you all think? Is a hearty book group something some of you might be interested in? Let me know in the comments 🙂