Julie Devaney’s My Leaky Body: Tales from the Gurney opens to this frightening scenario, which she describes in ironic terms: “A week ago I was sent home because I wasn’t sick enough to be admitted to hell, and now I am too sick to get a bed and I’m stuck in hospital purgatory.”
My Leaky Body is much more than the journal of a 22-year-old woman’s decade-long struggle with ulcerative colitis and Crohn’s disease. It’s a cry from the heart for change in a health care system that desperately needs healing.
Devaney recounts in personal detail the complete helplessness patients can feel when trying to identify, and then treat, a chronic illness. She describes occasions of feeling like “a slab of meat” in medical encounters, especially in one memorable and humiliating visit when a doctor ordered painful rectal exams she did not need, only to have his demands countermanded by understanding nurses. Several times she was “cross-examined, interrogated, challenged and not believed.”
The reader enters into Devaney’s emotional depression brought on by physical pain, as well as her descriptions of the social impacts of chronic illnesses — frequent isolation, precarious employment possibilities, uncertain income and the impossibility of simply being able to plan one’s life.
Devaney’s journey through medical mayhem was not helped by her traditional faith, as “I spent my teens fighting with religion teachers in my Catholic school.” Although she understandably wanted to “give up suffering for Lent,” she turned instead to daily meditation, naturopathy and New Age energy healing. This internal work gave her the strength to formulate her own prescription for a better health care system, “first money, then manners, then miracles.”
Devaney understands that, in terms of money, “The problem with our health care system is that it’s not public enough.” Budget cuts mean skeletal staffs are left to perform super-human feats, when what is needed is an expansion of good care.
In terms of manners, Devaney poignantly points out how bad behaviours are entrenched in the system. She describes the physician’s training regime as “militarism,” cloaked with social isolation and sleep deprivation in a highly stressful environment. By focusing entirely on science and biology, a new doctor can never be heard to utter the words “I don’t know,” even if this is the case. Patients get by when they learn to defer to their doctors, to let them think that they’re in charge and always know more than you.
This book asks, “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?”
Devaney has answered by becoming a health care activist. She has devoted her new life’s work to educating health care practitioners and medical students about how to become more than health professionals, but true healers.
My Leaky Body is not just a book. It progresses from journal entries about her journey through the medical system to more engaging story-telling. Assisted by Toronto actor and director Suzanne Roberts-Smith, Devaney developed her story into a more theatrical form, and eventually a one-woman play. By reading her own medical chart, while sitting on a hospital bed wearing a medical gown, she engages med students in a way that has been described as “captivating.”
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. She wants a world “where our feet are massaged with lavender oil as trays of sweet-smelling organic foods are brought to us in bed. I dream of health care that’s about healing. And of healers who acknowledge me as a whole — intellectual, emotional, sexual, spiritual — woman.”
This dream should not only come true in theatres and books — but all across Canada.
(Gunn is the Ottawa-based executive director of Citizens for Public Justice.)