My Leaky Body: Tales from the Gurney
Canadian author Julie Devaney is an activist who has been involved in demonstrations calling for the end to dictatorships and the G8 summits. In her book, she tells her personal story, her journey, and ultimately — crusade as a woman with an excruciatingly painful chronic illness, ulcerative colitis. “Sometimes I clutch the bathroom walls or turn the taps on hot or cold and scorch or freeze my hands, just wincing and moaning, trying to do anything to distract myself from the pain”.
While Devaney admits that her type of illness is one that is uncomfortable for some people to think about — never mind talk about — her book is a true example where “the personal is political”. It needs to be told. Her detailed account of landing in Emergency rooms in dire need of immediate medical care speaks volumes about our Canadian medical system. It may be “free”, but the consequences you pay — especially if you have a medical condition that gets worse, then gets better and then gets worse again — are very high. Even if you are taken in right away, you wait for hours to see an actual doctor because there are never enough doctors on shift. Also, depending on which province you live in, “universal health care” doesn’t actually exist! You still often have to pay for coverage of some treatments and drugs through an insurance company. If you don’t have insurance, well, you have to pay out of pocket.
Julie and her boyfriend Blair live in Vancouver where, when Julie is feeling well enough, she attends demonstrations and works on her Master’s degree, while lecturing. Unfortunately, the majority of the time her illness overrides everything else in her life and she ends up in Emergency. She describes each devastating visit, where she inevitably sees a different doctor each time, and each of these doctors has a different opinion of what her medical condition is (Crohn’s? Colitis? All in her head?) — and how to “fix” it. And then there is the time when she is rolled on a stretcher into a closet because there’s no more room in the hallway (‘hallway medicine’, indeed!) and all the rooms are full.
Devaney also describes the various treatments that she endures (each treatment from a different doctor) for her condition, including high doses of steroids which have dreadful effects on her body, including swelling of her joints that become arthritic and very painful. Out of desperation, she even goes to see a naturopath, without success. She does all of this while trying to finish her Master’s program, do some teaching, and maintain a relationship.
Julie’s parents live in Toronto, and she and Blair visit them quite often. She describes herself as feeling much better when she’s there, even though her illness hasn’t changed. She is able to visit her friends and she is much more relaxed in a familiar and nurturing environment. However, she has certainly seen the inside of Emergency departments in Toronto, too!
One day, following another demoralizing visit with yet another uninformed doctor in the ER who has a trail of Residents behind him, Julie realizes in a moment of clarity that she knows her own body better than any doctor or nurse, and she should be teaching them – not the other way around. That’s when the idea comes to her and she decides to create a performance piece about her illness and her experiences with the healthcare system, with a workshop to follow — and to take it on the road!
She begins with healthcare professionals in hospitals and personal care facilities in Vancouver. Initially, the response is lukewarm. The audience members are, understandably, feeling defensive, but Julie continues to tell them that all that she wants is for all of them to learn about her story and to come together and talk about what’s missing in the system, and to build a better one. She takes her performance and workshops to universities and medical conferences across the country. With great optimism, Julie will be like her hero, Tommy Douglas who said, “Courage, my friends; ‘tis not too late to build a better world!”
Julie Devaney weaves a powerful story of devastating illness and great strength in the face of a system that lacks the sensitivity needed to heal the sick. Her experiences lead her to a determination to transform something that is so fundamental to Canadians’ everyday lives – our medical system.
Emily Ternette is a freelance writer and is involved with the disability community in Winnipeg.
After a successful surgery, Julie Devaney now lives — feeling quite well most of the time — in Northern Ontario with her husband Blair, their dog Gracie and two cats, Willow and Saffy.