The Seated View

“We need to support the journey from passive patient to patient leader. “ -           Annette McKinnon How do you include the voice of people who live with illness — chronic or otherwise (patients) —in the decisions that affect how healthcare is provided? And how do you do that without these voices being used and subsumed by the professionals who work in healthcare?  Last week, Annette had a terrific rant about that particular topic, focusing especially on how the terminology that people who live with illness use to describe themselves eventually and inevitably becomes hijacked by professionals. She asks “ Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame? When will we see co-design of new policies, and ultimately co-production?” All excellent questions that got me thinking. And when she ended with t...

Writing is a muscle. The more you exercise it, the stronger it gets. So, how do you exercise this particular muscle when you have a chronic illness? You start with creating a writing habit, and a writing trigger. Lucy tries out for the position of Muse The Writing Habit Creating a writing habit starts with showing up. Day in, day out, sitting down by the computer (or whatever is your writing instrument of choice) and writing something. Some days, it will be like pulling teeth, and others, it’s like transcribing from a mystical well of story deep inside. Those days are fun. The writing habit is much like any other habit — it takes time to develop and not the supposed three weeks they’d like us to believe. Creating a habit, whether flossing or writing, takes three months or more. If you really want to be a writer, you have to show up every day of those three months. If, on your days off, you feel wrong about not writing, congratulations! You have successfully crea...

“It’s fun and you get to hit people.”          David Wilsie, member of Team Canada wheelchair rugby team I’ve loved this sport since I first saw the movie Murderball — there’s something about the abandon and apparent recklessness with which it’s played that’s just… well, a lot of fun. When I saw that the wheelchair rugby was part of the Toronto Parapan Am Games for the first time, I had to see it. (click photos to embiggen) But there were two obstacles. One, the wheelchair rugby venue was in Mississauga, a good 30 km from where I live. Although my range has increased in terms of how far I’m able to take a long walk/wheel, that’s still twice as far as my pain levels have allowed me to go in a vehicle for over a decade. The second was that I’d have to miss my mandatory rest period that helps manage my fatigue and pain levels. This is something that hasn’t happened in over a decade. The idea felt more than a little risky. ...