Breathing Lessons

ACADEMY AWARD WINNER! According to Mark O’Brien, “The two mythologies about disabled people break down to one: we can’t do anything, or two: we can do everything. But the truth is, we’re just human.” O’Brien was a frequently published journalist and poet, and a contributor to National Public Radio. He contracted polio in childhood and, due to post-polio syndrome, spent much of his life in an iron lung. Yet for more than forty years, he fought against illness, bureaucracy and society’s conflicting perceptions of disability for his right to lead an independent life.

Breathing Lessons breaks down barriers to understanding by presenting an honest and intimate portrait of a complex, intelligent, beautiful and interesting person, who happens to be disabled. Incorporating the vivid imagery of O’Brien’s poetry, and his candid, wry and often profound reflections on work, sex, death and God, this provocative film asks: what makes a life worth living?

After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being “disabled” with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40’s (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it’s hard enough to give up your job – at 15 (age at diagnosis) it’s really not an option. Hopefully what these patients went through can help me in this challenge.

In my last post, “Once Upon a Time: A Tale of Disclosure”, I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I’d like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I’m not suggesting all other chronic patients follow in my [...] continue the story

The Pear

By Andrea Shewchuk

What is care?

What is caring?

Who is the “care” in healthcare”?

What is the worth of a pear.

It’s Sunday September 30th, and in 6 days it will be one year since I found myself in the Emergency Room for the second time, afflicted with appendicitis (which I fondly refer to as “Appendicitis II”). Now, I am enjoying a day of knitting, yoga and quiet and, a pear.

This time I was in a cozy ER room within earshot and a good view of the nurses’ station. I had been at a play earlier that evening, ignoring the familiar pain, hoping it was just the play and the result of rushing through dinner.

The ER physician told me that the pain couldn’t be “that bad” because I refused the morphine. I told her that I practice yoga and am able my voice trails off as she leaves the room. She was replaced by 2 young male nurses. The trainee was instructed on the insertion of my IV (saline), at which he was unsuccessful many times. Though I am generally an assertive person, I was watching and weighing the consequences of voicing my concerns about the growing number of punctures on my arm vs. how they may be interpreted. I decided to ask [...] continue the story

The Orange Light or Room-mates

By Andrea Shewchuk

Almost 11 p.m.

We looked out of the 14th floor wall of windows at the orange CN Tower. The CN Tower was lit different colours to mark seasons or occasions. It was that time of an evening or that time anytime when something happens and all truth can be spoken and it’s safe. You just “know” that “time”. We had just come back from a walk around “the lap”. “The lap” was the obstacle course of gown and other disposal units, nurses’ trolleys and other walkers rather than safe passage for people with disconnected abdominal muscles and the impediment of an over-sized, shapeless, hopeless gown with malfunctioning closures to be managed concurrently with an IV in tow.

My room-mate was J. She had a gaping wound that ran several inches vertically from her chest down her abdomen. The doctors had left it open to “heal” after having worked on it in the afternoon. I wondered where I was. I thought of the movie Beautiful Dreamers.

J. had recovered from surgery to remove part of her colon because it was so damaged from one of the many possible syndromes, conditions and dis-eases that we have names for. And then a year later, she wasn’t feeling well and it was discovered that the [...] continue the story