Conditions of a Heart

"But she doesn't get it. After an entire childhood of pills and stitches, wobbling around in braces and slings, I know that once you're The Disabled Girl, you can't be anything else. People stop seeing you, but they never stop looking. Judging. Helping. Imposing."
Brynn, narrator of Bethany Mangle's Conditions of a Heart, has a genetic disease, Ehlers-Danlos syndrome. It mostly involves connective tissues, but has associated cardiac symptoms. Ordinary motions can cause joint dislocation. Just getting out of bed sends her heart rate soaring. She went through the earlier grades marked as different by braces and slings.
So in high school she's gone out of her way to hide symptoms, wanting desperately to be seen by her peers as basic, ordinary, like everyone else. "I live for yoga pants and bath bombs and pumpkin spice lattes. I have a designated seat in detention and last year's junior prom crown on the doorknob of my closet." As class president she's deeply enmeshed in school activities. She's ditched her childhood friends and even her first boyfriend to maintain the illusion of wellness.
But she can't delude herself. Her father has the same syndrome, so she knows what's in store. College and career aspirations seem like exercises in futility. She just wants to have fun while she can and make beautiful memories for when that's all she has left.
But after an incident in which she's assaulted while trying to break up a fight she's suspended from school for five days and banned from all extracurricular activities for the rest of her senior year. She wonders what 's the point of trying.
Mangle writes from from the specific experience of having a subtype of Ehlers-Danlos during the pandemic and beyond. "This book considers what the world might have been after quarantine if COVID-19 were no longer a threat. I made this choice deliberately to show that even if COVID-19 is eventually eradicated, it doesn't means that life returns to normal for the disabled, chronically ill, or vulnerable people who were treated as expendable. We learned hard lessons about who society deems worthy."
Conditions of a Heart is a beautiful, highly engaging coming of age narrative that touches on really important issues. It's a wonderful read for its YA target demographic and way beyond. A great choice for teen and two generation reading groups.
On a purrrsonal note, I'm gonna check out Mangle's previous books with an eye toward reviewing them. I love that she says that this book is for "anyone who has ever fought themselves from the inside out." Ever since the stroke I've been doing this on a daily daily basis.
A great big shout goes out to all others who must fight themselves from the inside out.
Jules Hathaway