Over 200 Artists tackle the Illness Experience

“Mira, Mira on the wall” was the refrain that came to mind when young Mira Berlin (MFA) presented her idea 3 years ago for an art show representing the personal illness experiences of artists. After she left my office, I thought about whether the refrain’s connection to the fairy tale was applicable to the concept.

Three years later, the fairy tale reference can be discarded. A collective of European academic, art and industry leaders has produced a vivid expression of illness through the eyes of artists working in collaboration with patients.

‘Perspectives – Art, Inflammation and Me’ is an initiative designed to add a different dimension to the current understanding of immune-mediated inflammatory diseases (IMIDs) and their impact on patients and society.  The exhibition debuted at the 9th Congress of the European Crohn’s and Colitis Organisation (ECCO) in Copenhagen, Denmark on February 20 with more than 100 unique pieces of art.

Mira was interested in the subjective experience of disease to showcase the potential of Fine Arts “to transcend the bounds placed on patients upon their diagnosis” and to highlight “the incredible power of images to demystify illness and reconcile us to disease, and even to death.” At the time, her thoughts were [...] continue the story

Who’s important in my end-of-life plan?

Editor’s Note: This article was originally posted on BestEndings.com  a website whose mission and mandate is to help navigate personal and medical decisions as life’s end nears.  Founder, Kathy Kastner, encouraged me to tackle the subject, after all, who’s a better candidate for an abrupt, or unpredictable ending, than a 61 year-old male with a life-long chronic illness. Its definitely a touchy subject, but she gave me some tools and direction to get started. Here’s my first take: Who’s important in my end-of-life plan?

Contemplating that question, it took me a moment to realize that “I’m important!”  Taking Inventory of Who I Am It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am:

61 years old, orphan son Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications Husband of 32 years in a loving relationship (more on this later) Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers.

Who are my ‘important’ extended family relationships?

I’m a younger brother (yes at 61) he and his wife are present in my life. I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my [...] continue the story

Birth of a New Patient Movement

How do patient advocacy groups get started? What motivates people to get engaged and involved? How do they become enabled and empowered?

A milestone event was held on July 20th, 2013 in Toronto to highlight the plight of women suffering from uterine fibroids and the associated heavy menstrual bleeding.

Women from across Canada who suffer from uterine fibroids came together to meet, share and brainstorm to create the first authentic patient voice in Canada regarding this important area of women’s health.

The significance of this event lies in the impact of this condition on the whole patient experience from living with the disease, diagnosis, treatment to follow up. Uterine fibroids account for more hysterectomies in Canada than any other condition. According to the National Uterine Fibroids Foundation (NUFF) in the U.S., up to 80 percent of all women have uterine fibroids. While the majority never have symptoms, one in four ends up with symptoms severe enough to require treatment and the experience can be horrifying.

In Canada, there is no organization such as NUFF, no unified or organized patient voice, to advocate for timely and appropriate care and treatment of women who have suffered unbelievable pain, discomfort, embarrassment, humiliation and anger due to uterine [...] continue the story

Cocaine Blues

One of my favourite early Bob Dylan songs was Cocaine Blues. I don’t know why the lyric “Cocaine all around my brain” has stuck with me for decades. But the accompanying lyric “This old cocaine ‘bout to make me sick” never meant much to me until I sat down with Kenny, the Area Chair for Cocaine Anonymous, to learn about addiction as a chronic illness.

There’s a great deal of stigma attached to the term “addict”. Pop culture and politics has shaped many of the public perspectives of cocaine addiction and what we think of addicts.  It was a revelation for me to explore the lived experience of an addict and how peer support plays a role in treatment.

Kenny shared with me his story, in advance of Cocaine Anonymous Southern Ontario chapter’s annual convention in Toronto on September 20-22. He tells it in own words with a hope to change the predominant perspective.

Kenny presents as the proverbial guy next door. He had his first contact with a mind-altering substance at age 13 when a schoolmate introduced him to sniffing nail polish remover. “Lets’ give it a shot”. He did. And he enjoyed it.

You might expect to think it was all downhill [...] continue the story

XX in Health – Canadian Women Changing Health

Our first annual list of Canadian Women Changing Healthcare brings the spotlight on women who are changing the face of healthcare yet don’t get the recognition CEO’s do. We’re doing this to support XX in Health Week 2013, an initiative that focuses attention on the lack of female representation at decision-making levels.

Working with limited resources other than the sheer force of personal will, a finely tuned sense for innovation, persuasion and unlimited enthusiasm for their mission, they transform health. It’s a profound lesson in leadership, demonstrating the courage required when risking so much of your heart for your cause.

Despite the risks, they build movements, change systems, and galvanize the spirits of those in pain and suffering. These leaders leverage the power of empathy, by acknowledging the suffering, embracing and respecting it.

I’ve been privileged to have met and learned about the work of many of these changemakers. You’ll find women who have created advocacy initiatives, changed how young healthcare professionals are being taught, built new channels for patient communication, provoked a new discourse about dying, exposed ugly truths of the lived illness experience, expressed their voice through the arts, and led expeditions 300 km north of the Arctic circle as an [...] continue the story