When she puts on the gown, she goes from being Julie, who can talk about anything, to being a patient, who is a condition.
That condition is ulcerative colitis. It kicked her ass but she kicked right back, transforming her struggle with her health – and with our health care system – into a chance for healing and transformation of both. She’s impressive, to say the least.
Julie has told her story to over 80 conferences and events across the country, from medical societies to Marxist gatherings.
Now, she’s collected her stories into My Leaky Body, a bold, brave and funny book, described as “part memoir, part love story, part revolutionary manifesto”.
Last night, Julie spoke at Octopus Books, telling us about her experiences in, and her advocacy for, our public health care system – despite it all. It’s a packed house, and seems to be a mixed crowd, full of old friends and new folks we’ve never seen before.
The idea of being a patient in a health care system that doesn’t always provide responsive, timely care is a sensitive topic for progressive Canadians. Understandably, we’re sometimes reluctant to face the system’s many faults and stress-points for fear of giving the privatizers any ammo.
But it’s in these cracks between our rhetoric and our institutions’ realities that new possibilities emerge – like the prospect of deeper alliances between patients and health care workers (doctors, nurses and support staff alike). These fissures reveal actual experience, lived experience – and that is where is real change always starts.
“I like the idea of cracks,” Julie says. “When I first started performing this piece, I didn’t want to bring any sense of professionalism to anything. I wanted to be able to show the cracks like if I lost my page, if I lost my thought. I think that space – that crack – allows people to relate to me as a person, and creates space to tell their own stories.”
The lightbulb went off when Julie found herself constantly being surrounded by medical interns and other staff talking about her as a condition, as an educational or training aid, like she wasn’t a person – hello, hello – under the hospital gown.
“I was like a big show,” she says. “There were all these people performing around my bed, but I didn’t have any lines.”
So she wrote some.
She admits to feeling a “little bit caught” between her support for public health care and the way she was treated, shunted into hallways and closets. At one point, she began to cry, “loudly and unashamedly” as if to remind staff that she was still there.
She says she cried in her sleep and cried upon waking. Her chart says, “Patient weepy”.
She overhears two nurses talking.
“What’s the matter with her?”
“She’s just embarrassed because she has a bag.”
As if her pain wasn’t enough.
No, she tells us, imagining that a ghost inside her has got hold of a megaphone. On the stretcher in the recovery room, she is possessed by her own ghost crying out, “No! That’s not it at all! I’m 24! This is supposed to be over!!!”
She realizes there’s nothing actually wrong with her but that she’s powerless and lying in a room with a bunch of medical professionals and maybe there’s something wrong with them.
Still sobbing. Nurses and their intermittent apologies.
She’s told to rate her pain, between a 1 and a 10.
Apparently, that’s not the right answer. She’s told, “A ten is the worst pain you’ve ever had. How much pain are you in?”
She’s told, “We can’t move you out of the recovery room until you can rate your pain lower.”
“How high would you like it to be?”
“We can’t move you until you’re at a 3 or 4.”
Later, she’s asked, “How are you now?”
Fine, she says.
Bed blockers. That’s the term that gets thrown around by doctors and other staff to describe patients with chronic conditions that “shouldn’t be there”. She wonders whether she’ll projectile vomit.
She sees patients being mistreated and she speaks up.
“It doesn’t serve anyone to deny that people aren’t having these experiences. How do we move forward?”
She knows what we’re up against.
She describes how she snuck into an event organized by the right-wing capitalist propaganda group called the Fraser Institute. Their founder, Michael Walker, was speaking to a business audience in a room sealed off from the public and – importantly – from the media.
Walker was saying, “We’re driving better cars than we’ve ever driven. We’re living in bigger houses than we’ve ever lived in. So why should we have to line up for health care?”
This is what “they” say when nobody else is around, Julie says. “Publicly, they talk about efficiency. Privately, they talk about shutting out the public and getting what they want.”
But Julie sees the pressures that hard-working folks in the system are dealing with, and acknowledges that their humanity is compressed in a system that leaves its workers no space and no time.
Doctors can see a patient die right in front of them and then have to go on to the next bed to tend to another one. They’re not allowed to feel anything. They’re not allowed to be human.
To challenge this, Julie talks about communication, and collaboration. She blasts away at the false consciousness that professionals should detach themselves from their emotions and from the situations they face.
“Staff have better day-to-day experiences when they have the space and the time to have discussion, and to foster the informed consent of patients. Where’s there’s real space for interaction,” she says.
She looks to the future.
“Thing are going to shift,” she says. “What my parents would put up with is stuff my god-daughter won’t.”