Today’s blog has been written by Al Martin, ACMZ – patient advocate.
In the course of my life I’ve often heard someone talk about a challenge in their lives and how they overcame that adversity, how would I handle it if I had a disease or disability?
For decades I was somehow unaware that I had not just a challenge but a copious number to take on.
Obesity has been my albatross for nearly every day of my life, and after a while I stopped noticing that the bird was defecating on my path constantly. Much as it was in Coleridge’s rime, I too found myself adrift with no winds and no currents.
Life in this husk has stopped me in my tracks a few times.
When I had my first serious dealings with the medical community in my province for my own health care, a flood of previous experiences came back to me, and they literally consumed my thoughts at times, excess body habitus, is how my body was once described to me. Those words and others are carved on my brain. Along with “you’re just too stressed for this programme at this time” as I was informed I was getting released from the bariatric program.
That was very early January 2021 right after Christmas, I needed help and community, and was extremely fortunate to find Obesity Canada.
I knew little about patient advocacy, or even that I was a patient slipping through cracks in the system, but I definitely knew something was wrong and I damn well wasn’t going to let it stop me from changing the world for my children, (and if I’m lucky in time for me too). I jumped at any opportunity to be involved and share my perspective, hopefully my steadfast opposition to bovine excrement and single yet firm voice will help to push the tiller into a strong tack from the slightest breeze.
So this brings me to the Summit, a warm wind blew off the mountain when we were there, and I was extremely out of my element, traveling by plane and bus, or any public transport is something I do infrequently and put a fine point on my physical size, I did not fit in my seat, and while Dr. Patton offered me the opportunity to fill in forms to get assistance with seating, I ignored this, and felt extremely squished for 5ish hours each way. Upon arrival though everything changed, I was surrounded by support, and peers that had so many similar experiences, this energy was the fuel I didn’t even know I had a tank for.
The team of “lived experience” people in OC is absolutely incredible, something I could not be more proud to be a part of. I literally cannot thank them enough for sharing their stories and supporting me in sharing mine. Every doorway at the summit took me in and out of conversations that sparked my synapses in their didactic way.
People that know me understand that I’m a quiet person, but loud when I speak, and its hard to stop me, once I’m underway. Having a chance to voice my many opinions, thoughts and feelings about the myriad of issues facing those of us who live with obesity and the various “comorbidities” gave me a lot to ponder.
I noticed that people who identify as male were not well represented at the summit in numbers commensurate with their population. How did I get here, why was I so “lucky”? ‘Because I had something to say and I was willing to say it.
I could choose to be embarrassed by what happened to me, what diseases I have, and how they challenge me, and I definitely have spent decades feeling alone. At the summit I could speak freely about what’s happening, not feeling that 100% of the people were judging me, maybe only 50% maybe more maybe less, but not all of them, that was amazing.
The most important thing is that the conversations had in any presentation, in any corridor, or meeting room at the summit didn’t stop there, not for me, I’m keeping that conversation going at home, online, at work too, I tell my colleagues what I’m doing when they ask why I went to BC I just tell them; “if not me, who?”
I’d like health care providers to see that too, if this branch of healthcare interests you in the slightest we are real people and we want to get help being healthy, that is backed by science, backed by action and backed by empathy and understanding that our disease isn’t doing well in the PR department, were already maligned in society and we are pretty tired of being a joke. (Though I default to self-deprecating humour reflexively) we just aren’t a joke, our struggle is real as they say, and it’s multi-faceted.
One thing that hit me hard is how many people struggle with so many “stacked diseases”, obesity also comes often with diabetes, heart and lung issues, obstructive sleep apnea, joint and muscle issues, bone issues, fertility concerns, arthritis, chronic pain, many of which start a vicious cycle where pain takes away mobility and mobility reduces physical activity which increases pain.
The opportunity to join forces in combating all of these diseases and disorders is one that cannot be overlooked. The time to act is now, let’s get this rolling! I’m pumped.
I’ve returned to my day to day life hauling heavy equipment around, making the movement of very large very heavy items look easy. I’ve said before that’s my gift from living in a large body, I know how to squeeze the biggest body through the tightest spaces. But sometimes I need to knock down a cone or take a lot more road, I’ve taken too much road in this post, but I hope that everyone that can will join me in my quest for a better experience for every person in every body no matter where they are, we can fill their sails once again, and cut that albatross free.
