My Leaky Body: health care humanized

 
Writer/activist Julie Devaney has dealt with serious health issues, and resultant experiences with the health care system, most of her adult life. She transformed her personal experience first into a popular solo play, and now into a book titled My Leaky Body, which hits the shelves today. John Bell spoke to Julie about her medical and artistic journey.
 
JB: Julie, maybe you can give readers a bit of explanation about the title and theme of your book.
 
JD: Well my body started “leaking” when I was a teenager, but it didn’t get really serious until I was 22. I got really severe bowel symptoms, but couldn’t get a diagnosis because I had just moved to Vancouver and didn’t have a family doctor.
 
The idea of “leaky bodies” is more than that though. It originates from a feminist theorist called Margrit Shildrick, who points out that modern western medicine is designed as if we have these very predictable, controlled bodies. This idea fundamentally excludes women, but also, everyone. So the problem isn’t so much that our bodies leak outside of the expected boundaries, because we all do in one way or another, but that the world in general, and medicine in particular, are not set up to deal with that.
 
JB: You have had a lot of experience with health care and the medical profession, but I’m sure you didn’t have your analysis going in. How did you come to that understanding?
 
JD: The short answer is: nothing made sense. The longer answer is, I would go into emergency rooms, violently ill, and have to fit really specific criteria in order to get medical attention. There was no time or space for nuance. But my body wasn’t following any predictable course of disease, no prognosis ever turned out to be correct, and to me it just seemed so basic. I’m here, my body’s falling apart, we need to collaborate and figure out what to do about that.
 
And then there would be an amazing nurse or doctor who would appear after five others had been unable to help me, and they would somehow find the space and energy to sit down and come up with really thoughtful ideas and treatment plans. But it always felt like going into battle, at a time when I was at my most vulnerable and least able to advocate for myself.
 
JB: It all sounds pretty dire, and intensely personal. But you turned your experiences into a very amusing theatre experience. How did that evolve?
 
JD: Ha. I’m glad you thought so. I started writing shortly before my first surgery in 2003. It became a way for me to have a sense of purpose when I couldn’t be in school any longer and wasn’t well enough to work. And as dire as it was at the time, I did always find things funny in their ridiculousness and darkness. Sometimes I felt like I was just sitting back and watching sketches unfold. Situations would occur or people would say things in certain moments and I’d think “Wow, this is gold, I would never have the nerve to make up something so absurd.”
 
I always wanted to be a writer. Everything seemed a bit easier to survive when I thought of it as excellent material, rather than just my out-of-control life.
 
I started doing it at conferences when I was in grad school, mostly to be provocative, because after going through so much trauma in healthcare I found it really jarring when we all sat around and talked about these things as disembodied academic issues. I wanted to put my gowned body on the table.
 
That’s when it took off, and since then I’ve done more than 75 shows across the country, everything from nursing conferences to theatre festivals. For the health provider conferences I also run workshops where they get to tell their stories too. I think it’s really important that patients and professionals collaborate on how to improve the healthcare experience for everyone.
 
JB: Criticizing Canada’s health care system is often used as an argument for privatized care. Where do you think you’d be with a US-style system?
 
JD: I think I’d be bankrupt, and possibly dead. I don’t say that lightly. There were times where I was having critical reactions to medications or even subtle symptoms that turned out to be critical after surgery, where if healthcare hadn’t been free, I may have hesitated about going in, and the consequences could have been fatal. I estimate my treatments and surgeries over the last ten years would have exceeded a million dollars if I had to pay out of pocket. Even co-payments in a US-style system would have left me in a serious and possibly unrecoverable financial situation.
 
JB: You have found a way to be critical of the health care profession without alienating people working in it. What sort of feedback have you got from health care workers?
 
JD: I had a tremendous amount of empathy for all the staff who treated me. I started being admitted in 2002. All the hospitals were working on skeleton staffs and facing continued cuts to funding after incredible reductions in hospital spending through the nineties. When they’re expected be experts on everything and everyone, not have any emotional connection to their work, and not given the freedom to rely on patients as experts on our own bodies, it’s a hellish experience for them too.
 
Most feedback I get is great. There have been a few defensive doctors and nurses, but so far that’s always provided context for an even more lively discussion. Usually the nurses and doctors who really appreciate what I’m saying take that opportunity to argue with their colleagues. And almost always there’s agreement by the end that we are ultimately on the same side.
 
JB: Now you are launching My Leaky Body as a book. How has it evolved from the play?
 
JD: It was great having so much space to explain things that I just touched on in the play. The book has a lot more analysis as well as the insights I’ve been lucky enough to hear from so many patients and staff since I started performing the play. I’ve learned a lot from other people who’ve been through similar and different experiences as well as professionals who have been very forthcoming in the workshops.
 
JB: Dealing with the health care system is something we’re all going to face sooner or later. Do you think your experiences can be any sort of a guide to the rest of us?
 
JD: I hope so. I’ve had lots of good stories from people after they’ve seen the play about tidbits they used when navigating the system afterwards. I didn’t necessarily expect my stories to have that kind of impact, so I’m very happy when they do.