Her weakest moment spawned a crusade for change. Julie Devaney takes 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 seems hell-bent on victimizing the sick.
Raw, harrowing, and darkly funny, My Leaky Body 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 politicially 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.
About the author
Julie Devaney is a patient-expert in the fields of disability rights advocacy and health-care delivery. She is the author of the critically acclaimed show and educational workshop series My Leaky Body, which she has performed at medical schools, nursing conferences, disability and women's studies conferences, arts festivals, and theatres throughout Canada, in the US, and the UK, including a successful run at Theatre Passe Muraille in Toronto. She will be embarking on a performance touch throughout Canada in the fall of 2012.
"If literature is the artist vulnerable, then writer Julie Devaney has created art out of the unlikeliest of mediums: ulcerative colitis. ... This is a unique work, utterly original; raw, authentic and hungry."
"This book is one that anyone treating chronic disease should read, as a patient viewpoint reminder and a frank, honest, angry, and often funny demonstration of how our policies, actions, and discussions aren't always received by patients in the way we hope. It is extremely well written in a candid and un-self-conscious style, but I was most impressed by what Julie Devaney has herself taken on in her real life. She has used her story and her experiences in courageous and innovative performances to improve the lot of other patients to come."
<i>BC Medical Journal</i>
"My Leaky Body... lays bare the deficiencies in health care, creating somewhat of a road map for others who want to/must transform the system. This is a brave, daring, tell-all book filled with raw courage."
<i>Owen Sound Sun Times</i>
"Activist Julie Devaney uses her own experiences with colitis to criticize the health care system and the insensitivity of medical professionals as she's dragged through what she dubs 'hospital purgatory.' The conversational material rings scarily true and blends ironic humour with chilling realities. Moments of fantasy — she's visited by health care saint Tommy Douglas and opens her heart to Shania Twain — mix with concerns about having sex and the trials she suffers at the hands of caregivers and insurance companies. There is no question that Devaney is brave not only to tell her story but also to put herself onstage."
"I've often thought the only way people like me can really know what it's like to be a patient is to become one. Or take lessons from Toronto writer Julie Devaney who spent five years in and out of hospital."
<i>White Coat, Black Art</i> CBC Radio
"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 mean, in effect, everyone. ... moving and genuinely inspirational."
<i>Quill & Quire</i>
"With television filled with fictional shows about life as a doctor — from ER to Grey's Anatomy — it is refreshing and insightful to see a performance about the reality of life as a patient. This intimate account blends anger and humour to reclaim the role as subject, not object. For those who think we have already achieved patient-centered care, this is a wake-up call."
"Brave, honest, touching, and truly hilarious, My Leaky Body can help unite medical professionals and patients to make health care the best it can be."
"My Leaky Body is self-aware without being self-pitying. It is empowering without being condescending and it is a strong, new young woman's voice in Canadian non-fiction. This book will resonate whether you're reading it on a stretcher in the closet of a hospital too full to house you, or curled up in bed or in a café."
"Powerful, moving, enlightening, and funny, My Leaky Body should be required reading for med students and all health care professionals and for anyone who has had to navigate the health care system."
"Devaney's writing talent turns emergency-room neglect into poetry... She is one of the few individuals brave enough to complain without blaming. Her courage is raw."
"Julie Devaney's startling tale of illness and resistance is gripping, angry, sharply funny, and eye-opening. She tells what it's like to be a leaky body, to live with a debilitating embodied condition that has consequences not just in her health care but in all her personal and social relationships. Julie is by turns filled with 'terror, pain and disgust,' expected to feel guilt and shame, and yet always sustained by an extraordinarily productive anger. Her condition opens up a commitment to health care advocacy that culminates in her exciting workshop performances in My Leaky Body. It's a revelation to get an insight into her lived experience that is sure to find resonances in all of us."
"Devaney's vision is of a world where health care is fully funded, and where med students are taught good manners, where sick people are comforted, not warehoused. ... This dream should not only come true in theatres and books — but all across Canada."
"My Leaky Body is many things at once: it is a critical investigation of healthcare culture, an activist's handbook, a real-life horror story, and a provoking confessional memoir."
"A complicated story told in a compelling way. ... with aching prose and wry humour, she shares the intimacies of her life and offers a glimpse into her rage and determination. ... It is a must-read for each of us who thinks there are definite answers to medical problems. It is a must-read for those who think that chronic illness must surely get easier to bear. And, yes, it is a must-read for medical professionals. ... There are exquisite pieces of wisdom in this book."
<i>Winnipeg Free Press</i>
"She has written a rare, profoundly honest and comforting book recommended for anyone enduring the demoralizing maze that is the health care system. ... we understand the rage induced by a consistent lack of empathy, and struggle in solidarity as she attempts to reclaim her body and her life. ... In giving us her rage, humour and fallibility, Devaney has perfectly highlighted our cultural fear of frankly discussing the reality of illness. She knows that we often live in a state of paranoia, attempting to hide from the inevitability of our own decay. We should be grateful she has done us the service of delivering every ugly detail of what she has endured, opening up a comforting conversation, giving her harrowing experience meaning, and utilizing it to empower others."
"My Leaky Body is amazing and cutting edge. Julie is courageous to engage in this type of work which is testing the boundaries of traditional scientific approaches to health care research. Julie's performance work is vulnerable, touching, deep and real. It is reflective of how our current health care system can at times be. I think it is a unique approach and creates a gut impact. If you are a practitioner, policy maker or a patient, you must see her performance."