The Comedian vs Cancer

“Fuck Lance Armstrong! He sets the bar too high for other cancer patients.”

It was still before Armstrong was exposed, when 12 years ago today, on the advice of my Improv coach, the legendary Brian G. Smith, I went to the theatre to see Daniel Stolfi’s Canadian Comedy Award Winning One Man Show “Cancer Can’t Dance Like This”.

It’s not an overstatement to say that Stolfi’s show – and especially the “Fuck Lance Armstrong” vitriol – inspired me to commit to the wacky life of patient advocacy the last dozen years. The singular power of his performance, and his unabashed perspectives, takes you inside his relationship with Cancer as a young adult.

Funny thing, the audience – they, me, – we all laughed our asses off and particularly the dig at Armstrong. Stolfi gave us the permission, which many thought wasn’t possible, to laugh at Cancer. He left me invigorated with the prospect that just a well told tale is all it takes to change our healthcare system. Perhaps slightly naïve, I know, – okay, really naïve – but he put a creative exclamation mark on how to enrich our understanding of the lived illness experience. I thought if only every health care [...] continue the story

Formalizing the menstrual disorder patient movement: is it possible?

By Zal Press and Holly Bridges

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa These words by Mother Teresa are a motivational mantra of sorts for Canadian women who have come to a fork in the road in their fight against fibroids and the debilitating heavy menstrual bleeding they cause.

What is the future of the movement? Where does it go from here after two national gatherings?  Is it time to form a non-profit foundation or social enterprise?

The movement to create awareness of fibroids and heavy periods in Canada is now some 8,000 strong, between Canadian Women with Fibroids, The UnHysterectomy and the Alberta Women’s Health Coalition. While these groups are working hard to raise awareness and bring hope, it could be argued that their work has a long way to go before becoming a household word. To-do list The leaders of these groups all agreed at their most recent gathering in Toronto that something must be done:

To increase awareness of menstrual disorders; To work with the medical community, policy makers and politicians to change the way our society perceives and treats menstrual disorders such as fibroids; To increase access to better, faster, more equitable treatment in all regions of Canada;

To advocate for and support women who are suffering in silence, and; To formalize the patient movement to generate more support, whether [...] continue the story

Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges Given the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering [...] continue the story

A Patient Movement Finds Its Voice

Do you remember the last time you felt you weren’t being listened to? Remember how angry it made you feel? Now imagine that anger multiplied by 15.

Back in October, we introduced you to a group of 15 women behind a fledgling patient advocacy movement. They came to Toronto from across Canada this past summer to share their anger over a shared experience: of having their pain diminished or ignored by society and the healthcare system.

These women are living with, and suffering from, uterine fibroids (UF) and similar debilitating conditions—and not being heard. In a safe, non-judgmental environment, these women felt free to share stories that needed to be told—stories of years of severe pain, embarrassment, and humiliation. Often, these stories had never been told before.

Sure, lots of anger was expressed throughout the day. But the women discovered—through the mere act of listening to each other’s stories—a new meaning and purpose to their experiences. Becoming more conscious of the myths that had defined them—the biggest being that the only treatment available is hysterectomy—and of a collective narrative of not being listened to, the women decided to unite their voices on behalf of others who are suffering in silence: “We are speaking today [...] continue the story

The Waiting Room: Mitch’s View

By Mitch Houlahan

The Waiting Room is an intimate exposure of the personal battles occurring within the walls of Highland County hospital, peering into the lives of people who often need public healthcare to survive. I’m sure anyone can recall the emotions which can emerge in any type of public waiting room; although the difference between renewing a driver’s licence and refilling a child’s prescription is fairly obvious. The Waiting Room has taken on a difficult task of expressing the daily routine and atmosphere of an extremely busy public hospital where the majority of patients are uninsured.

The Waiting Room is not a film in isolation. It is part of a comprehensive Storytelling Project that connects the audience on a personal level, to make us feel closer to the person who must navigate through the public healthcare system for themselves and their family. It is very likely that the majority of viewers (including myself) will be unable to relate to the experiences shown in the film; but the value of the film will be measured in the awareness it stands to generate. Filmmaker Pete Nicks gives the prominent role to the voice of the patient – it couldn’t get much more firsthand [...] continue the story