Mondays on the Margins: My Leaky Body by Julie Devaney
"Part memoir, part manifesto, Julie Devaney’s profoundly honest new book should be required reading for anyone who may ever have to visit a hospital – which means, in effect, everyone." Quill & Quire
Her weakest moment spawned a crusade for change. Julie Devaney takes us on a journey through the health care system as she is diagnosed and treated for ulcerative colitis. In and out of emergency rooms in Vancouver and Toronto, she’s poked, prodded, and abandoned to a closet at one point, bearing the helplessness and indignities of a system that at best confuses a patient into silence.
Raw, harrowing, and darkly funny, Julie Devaney argues convincingly for fixes to the system and better training for all medical personnel. As she recovers, she sets out to do just that: setting up a gurney on stage at workshops and conferences across the country to teach Bedside Manners 101 and to advocate for repairs to the system.
Part memoir, part love story, part revolutionary manifesto, My Leaky Body is politically astute, gooey like cake batter, and raw like ulcerated bowels. Devaney writes the book that will heal her aching heart and relax her strictured rectum as she weaves stories from professional and public interactions with tales from her gurney.
I love this book. I really, really love this book and I really, really love Julie Devaney for having the guts to lay her ulcerated intestines open before the world in the interest of making things better for other people who have to navigate the cold, forbidding expanses of the medical system. I was listening to CBC radio in the car this morning, and there was a program featuring doctors who chose to specialize in gerontology, talking about how little respect the specialty is given by other doctors. One of them said that the medical establishment is so proud of how many advancements we've made in cancer treatment and other areas which has increased the life span of the population; however, once people have lived those extra years, very few doctors are then interested in improving their quality of life at the end of it. This dovetailed nicely for me with Devaney's book, particularly the part where she discusses Margrit Shildrick's theory of "'leaky bodies', a feminist concept that explains how women's bodies don't 'fit' into the constructs of bodies set up by modern Western philosophies." The fact is, old bodies or women's bodies, medical personnel aren't trained to see anyone as an individual, but merely as a set of symptoms or a possible diagnosis, and if the body in question doesn't fit neatly into a set of checked boxes, many of them don't react well to the resulting untidiness.
Chances are that most readers can identify to some degree with Julie Devaney's experiences with doctors and nurses who fall on the spectrum from merely exhausted and irritable to flat-out spiteful and inappropriate. There was the time in grad school where I had a staph infection eating up my face which made me look like a burn victim, and a student health services doctor gave me a few milligrams of steroid cream and told me to develop better work habits - I went to a walk-in clinic a few days later where they put me on strong antibiotics and got me in to see a dermatologist the same day. I was just diagnosed with a condition that has caused me all manner of misery for years now, and it's taken this long even with a really great family doctor that I completely trust - imagine how much worse it is when you don't have that.
There are doctors in Julie's corners, doctors who work with her instead of around and against her, but they are sadly few and far between. And if the process is this hideous for someone who is smart and relatively well-informed about her illness and the workings of the health system, imagine the Kafkaesque nightmare it must be for people who aren't.
I would love for all potential patients to read this book, and visit Julie's website, and see her show, but even more than that, I'm glad that medical students and medical personnel are seeing it, and I wish all of them were compelled to study it. I don't require every doctor to be my best friend. I understand that many doctors are intelligent people who have studied for years in order to be experts in their field. But it does no one any good for doctors to be viewed as gods - they are human, and fallible, and they should be aware that the fact that patients live in their own bodies and inside their own illnesses makes them an expert in those fields. The respect needs to go both ways.
-"It occurs to me that the manufacturers of latex gloves should do something about that haunting elastic sound that happens when rubber meets flesh. The warning shot."
-"Under-resourced health care systems create situations where everyone is funneled through the same place to receive care. Patients are put into competition with one another in moments of critical health crisis."
-"So how did we get here? How did we move from the place where we invited medicine people into our homes as healers and supporters to the place where we need to check ourselves in -- body, mind, heart, and spirit -- to their institutions to follow rules we have no say in? When did the value of a professional opinion become directly opposed to respecting the deep wisdom and knowledge that we all carry in our own bodies?"
-"I remember every detail of every ravaging, injurious invasion into my body. And in these moments of pain, I find it impossible to conjure even the simplest moment of pleasure. The vague relief that comes when the pain is taken away is too tainted by the swollen aftertaste of violation to cause any joy. Hospital is the forced abandonment of control -- the violent, bloody, yet sterile bruising of flesh."
-"It's incredible how a pair of designer sandals can transform a pair of peasant grape-stomping feet."
-"Apparently, I should be more squeamish about admitting that I menstruate when I lie naked in front of a room of medical professionals. I do not claim to understand their reasoning."
-"Patronizing little shits."
-"(The emergency department resident) smirks and snickers, like we're sharing a joke, but the reality is I'm laughing because I think he's pathetic. I'm not remotely embarrassed; I feel very confident in this moment that he's the one with the problem. He's training to be a doctor and he's worried about seeing poo and intestines."
-"This fear, which I used to carry as a constant, back-breaking load, is gone. It happened so gradually I almost didn't notice it leaving, until here I am, free in my own body."